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By Bob Aronson

vitamin b from bagelsThe National Institutes of Health (NIH) says Americans have been taking multivitamin/mineral (MVM) supplements since the early 1940s, when the first such products became available. MVMs are still popular dietary supplements and, according to estimates, more than one-third of all Americans take them. MVMs account for almost one-fifth of all purchases of dietary supplements.

“You have to get your vitamins.”  I’ve heard that phrase since I was a child, but why?  What are Vitamins and are vitamin pills or supplements the same as the vitamins found naturally in what we eat and in sunshine?  Vitamins are not all the same.  There can be a huge difference between those that are naturally contained in our food and the sometimes “smelly” things that come in a bottle from your Pharmacy.

Over the past several years there have been a number of news reports about vitamins. Some experts support their use, some say the supplements are worthless and others say they can actually cause harm.  What’s true?  All of the above!  We’ll try to shed some light on the subject so let’s start with their importance to our health.

Vitamin deficiencies lead to a wide range of problems spanning from anorexia to obesity, organ malfunction, confusion, depression and fatigue.  We need vitamins.  The question that must be answered is; how do you know which ones?  We’ll provide an answer.

Tough question when you consider the fact that the NIH says, “No standard or regulatory definition is available for an MVM supplement—NIH LOGOsuch as what nutrients it must contain and at what levels. Therefore, the term can refer to products of widely varied compositions and characteristics. These products go by various names, including multis, multiples, and MVMs. Manufacturers determine the types and levels of vitamins, minerals, and other ingredients in their MVMs. As a result, many types of MVMs are available in the marketplace.”

It is entirely possible that there are no standards because the vitamin industry is huge and can afford heavy lobbying to ensure that they remain free of government regulation.  The NIH says that sales of all dietary supplements in the United States totaled an estimated $30.0 billion in 2011. This amount included $12.4 billion for all vitamin- and mineral-containing supplements, of which $5.2 billion was for MVMs.  If the government set standards, every single manufacturer would have to reformulate their products to meet them.  Doing so would be costly so there is no wonder that the industry would rather not rock their very profitable boat.

vitaminsWhether your vitamins are hurting you is another story. What people are not aware of is that all vitamins are not created equal, and most are actually synthetic and the synthetic vitamins are rarely like the real thing.

The type of vitamins that benefit us most is murky but there are some.  However, a healthy diet should provide most of the nutrients our bodies need.  Sometimes, though, supplements can help. The problem is, which ones?  How do you know what to buy?

For the most part, medical science has made it clear that most vitamin supplements are either useless or cause harm and we’ll elaborate on those claims shortly.  First, though, you ought to know what’s good for you and what seems to work for some conditions.

This article in Smithsonian.com lists five supplements that can be helpful. http://www.smithsonianmag.com/science-nature/five-vitamins-and-smithsonian.com2supplements-are-actually-worth-taking-180949735/#VsZOfYrBAkvtVYvY.99

Of all the “classic” vitamins—the vital organic compounds discovered between 1913 and 1941 and termed vitamin A, B, C, etc.—vitamin D is by far the most beneficial to take in supplement form. Researchers found that adults who took vitamin D supplements daily lived longer than those who didn’t.

Other research has found that in kids, taking vitamin D supplements can reduce the chance of catching the flu, and that in older adults, it can improve bone health and reduce the incidence of fractures.

Probiotics

A mounting pile of research is showing how crucial the trillions of bacterial cells that live inside us are in regulating our health, and how harmful it can be to suddenly wipe them out with an antibiotic. Thus, it shouldn’t come as a huge surprise that if you do go through a course of antibiotics, taking a probiotic (either a supplement or a food naturally rich in bacteria, such as yogurt) to replace the bacteria colonies in your gut is a good idea.

In 2012, a meta-analysis of 82 randomized controlled trials found that use of probiotics significantly reduced the incidence of diarrhea after a course of antibiotics.

All the same, probiotics aren’t a digestive cure-all: they haven’t been found to be effective in treating irritable bowel syndrome, among other chronic ailments. Like most other supplements that are actually effective, they’re useful in very specific circumstances, but it’s not necessary to continually take them on a daily basis.

Zinc

Vitamin C might not do anything to prevent or treat the common cold, but the other widely-used cold supplement, zinc, is actually worth taking. A mineral that’s involved in many different aspects of your cellular metabolism, zinc appears to interfere with the replication of rhinoviruses, the microbes that cause the common cold.

This has been borne out in a number of studies

Niacin

Also known as vitamin B3, niacin is talked up as a cure for all sorts of conditions (including high cholesterol, Alzheimer’s, diabetes and headaches) but in most of these cases, a prescription-strength dose of niacin has been needed to show a clear result.

At over-the-counter strength, niacin supplements have only been proven to be effective in helping one group of people: those who have heart disease. A 2010 review found that taking the supplement daily reduced the chance of a stroke or heart attack in people with heart disease, thereby reducing their overall risk of death due to a cardiac

​Garlic

Garlic, of course, is a pungent herb. It also turns out to be an effective treatment for high blood pressure when taken as a concentrated supplement.

A 2008 meta-analysis of 11 randomized controlled trials (in which similar groups of participants were given either a garlic supplement or placebo, and the results were compared) found that, on the whole, taking garlic daily reduced blood pressure, with the most significant results coming in adults who had high blood pressure at the start of the trials.

On the other hand, there have also been claims that garlic supplements can prevent cancer, but the evidence is mixed.

Vitamin Supplements are unnecessary and may cause harm.

In December of last year, the Annals of Internal Medicine reported that, “Not only are the pills mostly unnecessary, but they could actually doAnnals of internal medicine logo harm those taking them. We believe that the case is closed—supplementing the diet of well-nourished adults with (most) mineral or vitamin supplements has no clear benefit and might even be harmful.  These vitamins should not be used for chronic disease prevention. Enough is enough.”  http://www.cbsnews.com/news/multivitamin-researchers-say-case-is-closed-supplements-dont-boost-health/

Based on three studies examining multivitamins’ links to cancer prevention, heart health, and cognitive function, the research is a blow to the multi-billion dollar industry that produces them and to the millions of Americans who religiously shell out their dollars for false hope.

The doubts about vitamin supplements are not new.  In his 2013 book Do You Believe in Magic, Dr. Paul Offit pointed to a handful of major studies over the past five years that showed vitamins have made people less healthy. “In 2008, a review of all existing studies involving more than 230,000 people who did or did not receive supplemental antioxidants found that vitamins increased the risk of cancer and heart disease.”

Last year, researchers published new findings from the Women’s Health Initiative, a long-term study of more than 160,000 midlife women. The data showed that multivitamin-takers are no healthier than those who don’t pop the pills, at least when it comes to the big diseases—cancer, heart disease, stroke. “Even women with poor diets weren’t helped by taking a multivitamin,” says study author Marian Neuhouser, PhD, in the cancer prevention program at the Fred Hutchinson Cancer Research Center, in Seattle.

That said, there is one group that probably ought to keep taking a multi-vitamin: women of reproductive age. The supplement is insurance in case of pregnancy. A woman who gets adequate amounts of the B vitamin folate is much less likely to have a baby with a birth defect affecting the spinal cord.

The problem is that many vitamin and mineral supplements are manufactured synthetically. Some estimates place the amount at 90 percent and higher and while they are made to mimic natural vitamins they are not the same. Natural vitamins come directly from plants and animals, they are not produced in a lab and — most synthetic vitamins lack co-factors associated with naturally-occurring vitamins because they have been “isolated.”

Isolated vitamins can’t always be used by the body, and are either stored or excreted. Most synthetic vitamins don’t have the necessary trace minerals either and must use the body’s own mineral reserves which can then cause mineral deficiencies.

Most synthetic supplements contain chemicals that do not occur in nature. The history of the human race is such that our bodies have grown accustomed to consuming the food we grow and gather naturally, from the earth, not food that is synthesized in a lab.

web md logoWeb MD offers this assessment.

What Vitamin and Mineral Supplements Can and Can’t Do

http://www.webmd.com/vitamins-and-supplements/nutrition-vitamins-11/help-vitamin-supplement 

 By Kathleen M. Zelman, MPH, RD, LD

Reviewed By Elizabeth Ward, MS, RD

Experts say there is definitely a place for vitamin or mineral supplements in our diets, but their primary function is to fill in small nutrient gaps.  They are “supplements” intended to add to your diet, not take the place of real food or a healthy meal plan.

 WebMD takes a closer look at what vitamin and mineral supplements can and cannot do for your health.

Food First, Then Supplements

Vitamins and other dietary supplements are not intended to be a food substitute. They cannot replace all of the nutrients and fruits and veggiesbenefits of whole foods. 

 “They can plug nutrition gaps in your diet, but it is short-sighted to think your vitamin or mineral is the ticket to good health — the big power is on the plate, not in a pill,” explains Roberta Anding, MS, RD, a spokesperson for the American Dietetic Association and director of sports nutrition at Texas Children’s Hospital in Houston. 

 It is always better to get your nutrients from food, agrees registered dietitian Karen Ansel.  “Food contains thousands of phytochemicals, fiber, and more that work together to promote good health that cannot be duplicated with a pill or a cocktail of supplements.”

 What Can Vitamin and Mineral Supplements Do for Your Health?

 When the food on the plate falls short and doesn’t include essential nutrients like calcium, potassium, vitamin D, and vitamin B12, some of the nutrients many Americans don’t get enough of, a supplement can help take up the nutritional slack. Vitamin and mineral supplements can help prevent deficiencies that can contribute to chronic conditions.

 Numerous studies have shown the health benefits and effectiveness of supplementing missing nutrients in the diet.  A National Institutes of Health (NIH) study found increased bone density and reduced fractures in postmenopausal women who took calcium and vitamin D.

  Beyond filling in gaps, other studies have demonstrated that supplemental vitamins and minerals can be advantageous. However, the exact benefits are still unclear as researchers continue to unravel the potential health benefits of vitamins and supplements. 

 Web MD offers these tips to guide your vitamin and mineral selection:

  • Think nutritious food first, and then supplement the gaps.  Start by filling your grocery cart with a variety of nourishing, nutrient-rich foods.  Use the federal government’s My Plate nutrition guide to help make sure your meals and snacks include all the parts of a healthy meal.
  •  Take stock of your diet habits. Evaluate what is missing in your diet. Are there entire food groups you avoid? Is iceberg lettuce the only vegetable you eat? If so, learn about the key nutrients in the missing food groups, and choose a supplement to help meet those needs. As an example, it makes sense for anyone who does not or is not able to get the recommended three servings of dairy every day to take a calcium and vitamin D supplement for these shortfall nutrients.
  • When in doubt, a daily multivitamin is a safer bet than a cocktail of individual supplements that can exceed the safe upper limits of the recommended intake for any nutrient.  Choose a multivitamin that provides 100% or less of the Daily Value (DV) as a backup to plug the small nutrient holes in your diet.
  •  Are you a fast food junkie?  If your diet pretty much consists of sweetened and other low-nutrient drinks, fries, and burgers, then supplements are not the answer.  A healthy diet makeover is in order. Consult a registered dietitian.
  •  Respect the limits. Supplements can fill in where your diet leaves off, but they can also build up and potentially cause toxicities if you take more than 100% of the DV.
  •  Most adults and children don’t get enough calcium, vitamin D, or potassium according to the 2010 Dietary Guidelines.  Potassium-rich foods, including fruits, vegetables, dairy, and meat are the best ways to fill in potassium gaps. Choose an individual or a multivitamin supplement that contains these calcium and vitamin D as a safeguard.
  •  The best way to judge any supplement or medication is by reviewing clinical trials. There aren’t a lot of them done on vitamins, vitamin clinical trialbut those that have been conducted are quite revealing.  The NIH concluded that most supplements not only don’t work as intended, they actually make things worse. They examined the efficacy of 13 vitamins and 15 essential minerals as reported in long-term, randomized clinical trials and there were some positive results like:
  • A combination of calcium and vitamin D was shown to increase bone mineral density and reduce fracture risk in postmenopausal women.
  • There was some evidence that selenium reduces risk of certain cancers.
  • Vitamin E maydecrease cardiovascular deaths in women and prostate cancer deaths in male smokers.
  • Vitamin D showed some cardiovascular benefit.

Those few positives are overwhelmed by the negative findings.

  • Trials of niacin (B3), folate, riboflavin (B2), and vitamins B6 and B12 showed no positive effect on chronic disease occurrence in the general population
  • There was no evidence to recommend beta-carotene and some evidence that it may cause harm in smokers.
  • High-dose vitamin E supplementation increased the risk of death from all causes.

So what’s the bottom line?  Our research indicates that most medical authorities pretty much dismiss the usefulness of most vitamin supplements. Most revealing, though, and also dangerous is the fact that there are no standards for vitamin supplements.  The companies that make them can each have their own formulations and there is no approval process so the consumer may be at great risk.  Buyer beware.  Don’t believe the advertising.  If you are determined to take these supplements, though, google them and look for clinical trials.  If there are none, don’t buy.  If there are, read them carefully.  For the most part the best advice is, save your money because most of us don’t have a clue as to what we are buying.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant
My new hat April 10 2014Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.


By Bob Aronson

aching back cartoon

When I was growing up in Chisholm, Minnesota my dad swore that a chiropractor did more for his aching back than anyone else.  Dad was a meat cutter (he despised the term “Butcher” because he butchered nothing) and carried quarters of beef from the truck into his supermarket meat cooler.  Those things are heavy, bulky and very hard to handle and as a result he suffered back problems all his life.  Sometimes he could barely get out of bed he hurt so badly.  When that happened he would call Dr. Cole who, like all doctors then, made house calls.

My mom had an old fashioned, very heavy, super sturdy all wood ironing board set up in the living room and that’s whaironing boardt Doc Cole would use as a treatment bed.  Dad would lie face down on that old ironing board and Doc Cole would begin doing whatever manipulation Chiropractors do.  I don’t remember a time when it didn’t work.  Dad always felt better and was back at work the next day, but the pain always returned.  That’s the sum total of my experience with Chiropractors.  I have never been to see one or been in the care of a Chiropractor nor do I know anyone who has.

Here is the definition of the treatment as provided by the American Chiropractic Association (ACA).   Chiropractic is a health care profession that focuses on disorders of the musculoskeletal system and the nervous system, and the effects of these disorders on general health.  Chiropractic care is used most often to treat neuromusculoskeletal complaints, including but not limited to back pain, neck pain, pain in the joints of the arms or legs, and headaches.

logoDoctors of Chiropractic – often referred to as chiropractors or chiropractic physicians – practice a drug-free, hands-on approach to health care that includes patient examination, diagnosis and treatment. Chiropractors have broad diagnostic skills and are also trained to recommend therapeutic and rehabilitative exercises, as well as to provide nutritional, dietary and lifestyle counseling (there is much more to the definition. You can read it here http://www.acatoday.org/level2_css.cfm?T1ID=13&T2ID=61

There is no shortage of definitions of the practice so “Cherry Picking” a few can be misleading but from what I can find, traditional medical science is becoming more accepting of the practice in recent years, but still seems to stop short of an endorsement.  Here is the definition of Chiropractic according to Medicine Net dot com. http://www.medterms.com/script/main/art.asp?articlekey=2706

Chiropractic: A system of diagnosis and treatment based on the concept that the nervous system coordinates all of the body’s functions, and that disease results from a lack of normal nerve function. Chiropractic employs manipulation and adjustment of body structures, such as the spinal column, so that pressure on nerves coming from the spinal cord due to displacement (subluxation) of a vertebral body may be relieved. Practitioners believe that misalignment and nerve pressure can cause problems not only in the local area, but also at some distance from it. Chiropractic treatment appears to be effective for muscle spasms of the back and neck, tension headaches, and some sorts of leg pain. It may or may not be useful for other ailments.

Not all chiropractors are alike in their practice. The International Chiropractors Association believes that patients should be treated by spinal manipulation alone while the American Chiropractors Association advocate a multidisciplinary approach that combines spinal adjustment with other modalities such as physical therapy, psychological counseling, and dietary measures. For some years the American Medical Association (AMA) opposed chiropractic because of what it termed a “rigid adherence to an irrational, unscientific approach to disease.” However, Congress amended the Medicare Act in 1972 to include benefits for chiropractic services and in 1978 the AMA modified its position on chiropractic.

So, now that we have defined terms the question is, “When should I choose a chiropractor to treat a condition, and which conditions can they successfully treat?”  The answer to that question depends entirely on who you talk to.  Even Chiropractors differ with one another on exactly what conditions they can and can’t treat.

Preston H. Long is a licensed Arizona Chiropractor who practiced for almost 30 years.  Be warned, his assessment of the Preston long book coverChiropractic profession is quite negative.

Long has testified at about 200 trials, performed more than 10,000 chiropractic case evaluations, and served as a consultant to several law enforcement agencies. He is also an associate professor at Bryan University, where he teaches in the master’s program in applied health informatics.  What follows is just a half dozen bullet points from a blog he wrote titled, “20 Things Most Chiropractors Won’t Tell You.”(I Bob Aronson selected only the first six points and edited them for brevity) you can read the entire unedited version here http://edzardernst.com/2013/10/twenty-things-most-chiropractors-wont-tell-you/

Have you ever consulted a chiropractor? Are you thinking about seeing one? Do you care whether your tax and health-care dollars are spent on worthless treatment? If your answer to any of these questions is yes, there are certain things you should know.

 1. Chiropractic theory and practice are not based on the body of knowledge related to health, disease, and health care that has been widely accepted by the scientific community.

Most chiropractors believe that spinal problems, which they call “subluxations,” cause ill health and that fixing them by “adjusting” the spine will promote and restore health. The extent of this belief varies from chiropractor to chiropractor. Some believe that subluxations are the primary cause of ill health; others consider them an underlying cause. Only a small percentage (including me) reject these notions and align their beliefs and practices with those of the science-based medical community. The ramifications and consequences of subluxation theory will be discussed in detail throughout this book.

 2. Many chiropractors promise too much.

The most common forms of treatment administered by chiropractors are spinal manipulation and passive physiotherapy measures such as heat, ultrasound, massage, and electrical muscle stimulation. These modalities can be useful in managing certain problems of muscles and bones, but they have little, if any, use against the vast majority of diseases. But chiropractors who believe that “subluxations” cause ill health claim that spinal adjustments promote general health and enable patients to recover from a wide range of diseases. Some have a hand out that improperly relates “subluxations” to a wide range of ailments that spinal adjustments supposedly can help. Some charts of this type have listed more than 100 diseases and conditions, including allergies, appendicitis, anemia, crossed eyes, deafness, gallbladder problems, hernias, and pneumonia.

3. Our education is vastly inferior to that of medical doctors.

I rarely encountered sick patients in my school clinic. Most of my “patients” were friends, students, and an occasional person who presented to the student clinic for inexpensive chiropractic care. Most had nothing really wrong with them. In order to graduate, chiropractic college students are required to treat a minimum number of people. To reach their number, some resort to paying people (including prostitutes) to visit them at the college’s clinic.

4. Our legitimate scope is actually very narrow.

Appropriate chiropractic treatment is relevant only to a narrow range of ailments, nearly all related to musculoskeletal problems. But some chiropractors assert that they can influence the course of nearly everything. Some even offer adjustments to farm animals and family pets.

 5. Very little of what chiropractors do has been studied.

Although chiropractic has been around since 1895,  little of what we do meets the scientific standard through solid research. Chiropractic apologists try to sound scientific to counter their detractors, but very little research actually supports what chiropractors do.

6. Unless your diagnosis is obvious, it’s best to get diagnosed elsewhere.

During my work as an independent examiner, I have encountered many patients whose chiropractor missed readily apparent diagnoses and rendered inappropriate treatment for long periods of time. Chiropractors lack the depth of training available to medical doctors. For that reason, except for minor injuries, it is usually better to seek medical diagnosis first.

Obviously the previous report is pretty damning but the author’s views are not universally shared.  The problem with finding positive reports about the Chiropractic profession is that there are very few traditional double blind placebo studies.  Double blind studies are the “Gold Standard” in medicine.  Most of the supporting evidence for Chiropractic medicine is of the testimonial variety otherwise known as “Anecdotal” evidence. Often you will see ads that suggest 9 out of 10 who tried something got relief and while that sounds good, it is anecdotal, not double blind and that’s why Chiropractors are suspect in the eyes of the medical profession, even though Medical Doctors will on occasion for specific ailments send their patients to Chiropractors.

Here’s an evaluation of the top ten Chiropractic studies of 2013…it is not positive because, the author says, the studies were not really studies. http://www.sciencebasedmedicine.org/top-10-chiropractic-studies-of-2013/

web md logoThe Medical Profession Does Recognize that Chiropractic Manipulation Can Help.

So, what about the good side of the profession? Where’s the evidence that Chiropractic manipulation of the spine actually has lasting benefits?

I searched for a long time and the best non anecdotal defense I could find for the Chiropractic profession was in Web MD. You can read all of it here, but note that the endorsement is strictly for back pain. http://www.webmd.com/pain-management/guide/chiropractic-pain-relief

Among people seeking back pain relief alternatives, most choose chiropractic treatment. About 22 million Americans visit chiropractors annually. Of these, 7.7 million, or 35%, are seeking relief from back pain from various causes, including accidents, sports injuries, and muscle strains. Other complaints include pain in the neck, arms, and legs, and headaches.

Learn The Truth About Back Pain Causes and Treatments

What Is Chiropractic?                                       ,

Chiropractors use hands-on spinal manipulation and other alternative treatments, the theory being that proper alignment of the body’s musculoskeletal structure, particularly the spine, will enable the body to heal itself without surgery or medication. Manipulation is used to restore mobility to joints restricted by tissue injury caused by a traumatic event, such as falling, or repetitive stress, such as sitting without proper back support.

Chiropractic is primarily used as a pain relief alternative for muscles, joints, bones, and connective tissue, such as cartilage, ligaments, and tendons. It is sometimes used in conjunction with conventional medical treatment.

The initials “DC” identify a chiropractor, whose education typically includes an undergraduate degree plus four years of chiropractic college.

What Does Chiropractic for Back Pain Involve?

A chiropractor first takes a medical history, performs a physical examination, and may use lab tests or diagnostic imaging to determine if treatment is appropriate for your back pain.

The treatment plan may involve one or more manual adjustments in which the doctor manipulates the joints, using a controlled, sudden force to improve range and quality of motion. Many chiropractors also incorporate nutritional counseling and exercise/rehabilitation into the treatment plan. The goals of chiropractic care include the restoration of function and prevention of injury in addition to back pain relief.

What Are the Benefits and Risks of Chiropractic Care?

Spinal manipulation and chiropractic care is generally considered a safe, effective treatment for acute low back pain, the type of sudden injury that results from moving furniture or getting tackled. Acute back pain, which is more common than chronic pain, lasts no more than six weeks and typically gets better on its own.

Research has also shown chiropractic to be helpful in treating neck pain and headaches. In addition, osteoarthritis and fibromyalgia may respond to the moderate pressure used both by chiropractors and practitioners of deep tissue massage.

Studies have not confirmed the effectiveness of prolotherapy or sclerotherapy for pain relief, used by some chiropractors, osteopaths, and medical doctors, to treat chronic back pain, the type of pain that may come on suddenly or gradually and lasts more than three months. The therapy involves injections such as sugar water or anesthetic in hopes of strengthening the ligaments in the back.

People who have osteoporosis, spinal cord compression, or inflammatory arthritis, or who take blood-thinning medications should not undergo spinal manipulation. In addition, patients with a history of cancer should first obtain clearance from their medical doctor before undergoing spinal manipulation.

All treatment is based on an accurate diagnosis of your back pain. The chiropractor should be well informed regarding your medical history, including ongoing medical conditions, current medications, traumatic/surgical history, and lifestyle factors. Although rare, there have been cases in which treatment worsened a herniated or slipped disc, or neck manipulation resulted in stroke or spinal cord injury. To be safe, always inform your primary health care provider whenever you use chiropractic or other pain relief alternatives.

On my OTI Facebook group I asked for individual experiences with chiropractors and got very few, most were positive but general in nature offering few details.

Other Non-Traditional Remedies

There are other non-traditional remedies for back pain that we have not mentioned here.  Below you will find several that were listed in “About dot com. “ For the full list of 15 options click on this link. http://altmedicine.about.com/od/chronicpain/a/back_pain.htm

 Acupuncture

A 2008 study published in Spine found “strong evidence that acupuncture can be a useful supplement to other forms of accupunctureconventional therapy” for low back pain. After analyzing 23 clinical trials with a total of 6,359 patients, the study authors also found “moderate evidence that acupuncture is more effective than no treatment” in relief of back pain. The authors note that more research is needed before acupuncture can be recommended over conventional therapies for back pain.

 

Just how does acupuncture work? According totraditional Chinese medicine, pain results from blocked energy along energy pathways of the body, which are unblocked when acupuncture needles are inserted along these invisible pathways. Acupuncture may release natural pain-relieving opioids, send signals to the sympathetic nervous system, and release neurochemicals and hormones.

 See Also: Using Acupuncture to Help Relieve Chronic Pain | Sciatica – Causes, Symptoms, and Natural Treatments | What is Trigger Point Therapy?

Massage Therapy

massage therapyIn a 2009 research review published in Spine, researchers reviewed 13 clinical trials on the use of massage in treatment of back pain. The study authors concluded that massage “might be beneficial for patients with subacute and chronic nonspecific low back pain, especially when combined with exercises and education.” Noting that more research is needed to confirm this conclusion, the authors call for further studies that might help determine whether massage is a cost-effective treatment for low back pain.

Massage therapy may also alleviate anxiety and depression associated with chronic pain. It is the most popular natural therapy for low back pain during pregnancy.

The Alexander Technique

Alexander Technique is a type of therapy that teaches people to improve their posture and eliminate bad habits such as slouching, which can lead to pain, muscle tension, and decreased mobility.

 There is strong scientific support for the effectiveness of Alexander Technique lessons in treatment of chronic back pain, according to a research review published in the International Journal of Clinical Practice in 2012. The review included one well-designed, well-conducted clinical trial demonstrating that Alexander Technique lessons led to significant long-term reductions in back pain and incapacity caused by chronic back pain. These results were broadly supported by a smaller, earlier clinical trial testing the use of Alexander Technique lessons in treatment of chronic back pain.

You can learn Alexander technique in private sessions or group classes. A typical session lasts about 45 minutes. During that time, the instructor notes the way you carry yourself and coaches you with verbal instruction and gentle touch.

Hypnotherapy

Also referred to as “hypnosis,” hypnotherapy is a mind-body technique that involves entering a trance-like state of deep relaxation and concentration. When undergoing hypnotherapy, patients are thought to be more open to suggestion. As such, hypnotherapy is often used to effect change in behaviors thought to contribute to health problems (including chronic pain).

Preliminary research suggests that hypnotherapy may be of some use in treatment of low back pain. For instance, a pilot study published in the International Journal of Clinical and Experimental Hypnosis found that a four-session hypnosis program (combined with a psychological education program) significantly reduced pain intensity and led to improvements in mood among patients with chronic low back pain.

 Balneotherapy

One of the oldest therapies for pain relief, balneotherapy is a form of hydrotherapy that involves bathing in mineral water or warm water.

For a 2006 report published in Rheumatology, investigators analyzed the available research on the use of balneotherapy in treatment of low back pain. Looking at five clinical trial, the report’s authors found “encouraging evidence” suggesting that balneotherapy may be effective for treating patients with low back pain. Noting that supporting data are scarce, the authors call for larger-scale trials on balneotherapy and low back pain.

Dead Sea salts and other sulfur-containing bath salts can be found in spas, health food stores, and online. However, people with heart conditions should not use balneotherapy unless under the supervision of their primary care provider.

Meditation

An ancient mind-body practice, meditation has been found to increase pain tolerance and promote management of chronic pain in a number of small studies. In addition, a number of preliminary studies have focused specifically on the use of meditation in management of low back pain. A 2008 study published in Pain, for example, found that an eight-week meditation program led to an improvement of pain acceptance and physical function in patients with chronic low back pain. The study included 37 older adults, with members meditating an average of 4.3 days a week for an average of 31.6 minutes a day.

 Although it’s not known how meditation might help relieve pain, it’s thought that the practice’s ability to induce physical and mental relaxation may help keep chronic stress from aggravating chronic pain conditions.

One of the most commonly practiced and well-studied forms of meditation is mindfulness meditation.

Tai Chi

Tai chi is an ancient martial art that involves slow, graceful movements and incorporates meditation and deep breathingTai chi. Thought to reduce stress, tai chi has been found to benefit people with chronic pain in a number of small studies.

 Although research on the use of tai chi in treatment of back pain is somewhat limited, there’s some evidence that practicing tai chi may help alleviate back pain to some degree. The available science includes a 2011 study published in Arthritis Care & Research, which found that a 10-week tai chi program reduced pain and improved functioning in people with long-term low back pain symptoms. The study involved 160 adults with chronic low back pain, half of whom participated in 40-minute-long tai chi sessions 18 times over the 10-week period.

 Music Therapy

Music therapy is a low-cost natural therapy that may reduce some of the stress of chronic pain in conjunction with other treatment. Studies find that it may reduce the disability, anxiety, and depression associated with chronic pain.

 A 2005 study published in Annals of Physical and Rehabilitation Medicine evaluated the influence of music therapy in hospitalized patients with chronic back pain. Researchers randomized 65 patients to receive, on alternate months, physical therapy plus four music therapy sessions or physical therapy alone and found that music significantly reduced disability, anxiety, and depression

 Conclusion

It is difficult at best to arrive at a conclusion about the effectiveness of Chiropractic manipulation for two reasons. 1) there are very few real scientific studies and 2) The members of the profession don’t even seem to agree on just when and on which conditions Chiropractors can offer lasting relief.  I can only conclude with this thought.  At one time Chiropractors were ridiculed by the medical profession and not covered by health insurance.  Now, that has changed and the profession seems to be enjoying a degree of legitimacy It has never before had.

If you will take anecdotal evidence as scientific proof then Chiropractors are very effective.  If you prefer to make a decision based on scientific studies…well, the jury may still be out.

The bottom line is quite simple.  If you have been to a Chiropractor and the visit or visits have resulted in relief from what ails you, then keep going.  You are the best judge of what’s right for you.

 

Bob AronsonBob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.


By Bob Aronson

loneliness cartoonDepression, what is it? Why can’t you just snap out of it? Many people including family and friends who have not experienced depression have great difficulty understanding it much like people who are not addicts can’t understand addiction. In both cases we often hear advice like, “Snap out of it, you’ve got things pretty good. There’s no reason to be depressed.” Or, “You made the choice to start drinking or using drugs so choose to stop.” Oh, if it were that simple.

Here’s a cold slap in the face to bring us into reality. Depression is a mental illness, like the common cold is a physical illness. There has long been a stigma associated with mental illness held over from the days of Insane Asylums and “Crazy” people. That stigma is rapidly disappearing because so many people suffer from depression which is often a chemical imbalance that is quite treatable. Your mental health is every bit as important as your physical health and one can affect the other.

Here are some shocking statistics from the National Institutes of Mental Health (NIMH).

Major Depressive Disorder

  • Major Depressive Disorder is the leading cause of disability in the U.S. for ages 15-44.3
  • Major depressive disorder affects approximately 14.8 million American adults, or about 6.7 percent of the U.S. population age 18 and older in a given year.1, 2
  • While major depressive disorder can develop at any age, the median age at onset is 32.5
  • Major depressive disorder is more prevalent in women than in men

Major or clinical depression is an awful feeling. It is a gnawing at the pit of your stomach, in your gut that makes you feel hopeless, helpless and alone. It is as though someone locked up your ability to reason, your sense of humor and your will to live in a windowless, dark, solitary confinement jail cell from which there is no escape. It is a constant feeling of impending doom combined with a profound sadness and even fear. It can steal your energy, memory, concentration, sex drive, interest in activities you used to love and…it can even destroy your will to live. Depression may not be as common as the common cold but it is much more common than ever before. Nearly 20 percent of Americans suffer from it at one time or another.

Logic says that you should be able to “Will” yourself out of this mood, but will power alone cannot give you tStop being sadhe boost you need to get your life’s engine started again. Mental illness is not unlike physical illness. You cannot use will power to eliminate depression any more than you could use it to stop cancer. No one wants to be depressed, no one,. Think about it. If will power would work as an anti-depressant there would be no depression because again, no one wants to feel like what I described.

Let’s get to the medical description and symptoms as offered by the Mayo Clinic. http://www.mayoclinic.org/diseases-conditions/depression/expert-answers/clinical-depression/faq-20057770

“To be diagnosed with clinical depression, you must have five or more of the following symptoms over a two-week period, most of the day, nearly every day. At least one of the symptoms must be either a depressed mood or a loss of interest or pleasure. Signs and symptoms may include:
• Depressed mood, such as feeling sad, empty or tearful (in children and teens, depressed mood can appear as constant irritability)
• Significantly reduced interest or feeling no pleasure in all or most activities
• Significant weight loss when not dieting, weight gain, or decrease or increase in appetite (in children, failure to gain weight as expected)
• Insomnia or increased desire to sleep
• Either restlessness or slowed behavior that can be observed by others
• Fatigue or loss of energy
• Feelings of worthlessness, or excessive or inappropriate guilt
• Trouble making decisions, or trouble thinking or concentrating
• Recurrent thoughts of death or suicide, or a suicide attempt
Your symptoms must be severe enough to cause noticeable problems in relationships with others or in day-to-day activities, such as work, school or social activities. Symptoms may be based on your own feelings or on the observations of someone else.
Clinical depression can affect people of any age, including children. However, clinical depression symptoms, even if severe, usually improve with psychological counseling, antidepressant medications or a combination of the two.”

The National Institutes of Health (NIH) has this to say about depression.

What causes depression?

Several factors, or a combination of factors, may contribute to depression.
• Genes—people with a family history of depression may be more likely to develop it than those whose families do not have the illness.
• Brain chemistry—people with depression have different brain chemistry than those without the illness.
• Stress—loss of a loved one, a difficult relationship, or any stressful situation may trigger depression.
Depression affects different people in different ways.
• Women experience depression more often than men. Biological, life cycle, and hormonal factors that are unique to women may be linked to women’s higher depression rate. Women with depression typically have symptoms of sadness, worthlessness, and guilt.
• Men with depression are more likely to be very tired, irritable, and sometimes even angry. They may lose interest in work or activities they once enjoyed, and have sleep problems.
• Older adults with depression may have less obvious symptoms, or they may be less likely to admit to feelings of sadness or grief. They also are more likely to have medical conditions like heart disease or stroke, which may cause or contribute to depression. Certain medications also can have side effects that contribute to depression.
• Children with depression may pretend to be sick, refuse to go to school, cling to a parent, or worry that a parent may die. Older children or teens may get into trouble at school and be irritable. Because these signs can also be part of normal mood swings associated with certain childhood stages, it may be difficult to accurately diagnose a young person with depression.

get out of bedOk we’ve defined the malady and we know how clinicians determine if patients have it so the next logical question is, “What can you do about it.” Well, the answer is simple, but it will take a major commitment on your part to make the answer work for you, we can start by identifying some hazards, potholes on the road to good mental health.

Depression: Ten Traps to Avoid

Dr. Stephen Ilardi, author of “The Depression Cure,” has identified several things that can make depression worse. First, know this. Depression is a serious medical condition and should be treated by a doctor or licensed therapist. Having said that, here”s what Dr. Ilardi suggests.

Trap 1: Being a Couch Potato

When you’re feeling down, it’s tempting to hole up in your bed or on the couch. Yet exercise – Even moderate activityclinical depression image like brisk walking – has been shown to be at least as effective against depression as antidepressant medication. It works by boosting the activity of the “feel-good” neurochemicals dopamine and serotonin.
For an “antidepressant dose” of exercise, try at least 40 minutes of brisk walking or other aerobic activity three times a week.

Trap 2: Not Eating “Brain Food”

Omega-3 fats are key building blocks of brain tissue. But the body can’t make omega-3s; they have to come from our diets. Unfortunately, most Americans don’t consume nearly enough Omega-3s, and a deficiency leaves the brain vulnerable to depression. Omega-3s are found in wild game, cold-water fish and other seafood, but the most convenient source is a fish oil supplement. Ask your doctor about taking a daily dose of 1,000 mg of EPA, the most anti-inflammatory form of omega-3.

Trap 3: Avoiding Sunlight

Sunlight exposure is a natural mood booster. It triggers the brain’s production of serotonin, decreasing anxiety and giving a sense of well-being. Sunlight also helps reset the body clock each day, keeping sleep and other biological rhythms in sync.

During the short, cold, cloudy days of winter, an artificial light box can substitute effectively for missing sunlight. In fact, 30 minutes in front of a bright light box each day can help drive away the winter blues.

Trap 4: Not Getting Enough Vitamin D

Most people know vitamin D is needed to build strong bones. But it’s also essential for brain health. Unfortunately, more than 80 percent of Americans are vitamin D deficient. From March through October, midday sunlight exposure stimulates vitamin D production in the skin – experts advise five to 15 minutes of daily exposure (without sunscreen). For the rest of the year, ask your doctor about taking a vitamin D supplement.

Trap 5: Having Poor Sleep Habits

sleepChronic sleep deprivation is a major trigger of clinical depression, and many Americans fail to get the recommended seven to eight hours a night. How can you get better sleep?

Use the bed only for sleep and sex – not for watching TV, reading, or using a laptop. Turn in for bed and get up at the same time each day. Avoid caffeine and other stimulants after midday. Finally, turn off all overhead lights

Trap 6: Avoiding Friends and Family

When life becomes stressful, people often cut themselves off from others. That’s exactly the wrong thing to do, as research has shown that contact with supportive friends and family members can dramatically cut the risk of depression. Proximity to those who care about us actually changes our brain chemistry, slamming the brakes on the brain’s runaway stress circuits.

Trap 7: Mulling Things Over

When we’re depressed or anxious, we’re prone to dwelling at length on negative thoughts – rehashing themes of rejection, loss, failure, and threat, often for hours on end. Such rumination on negative thoughts is a major trigger for depression – and taking steps to avoid rumination has proven to be highly effective against depression.

How can you avoid rumination? Redirect attention away from your thoughts and toward interaction with others, or shift your focus to an absorbing activity. Alternatively, spend 10 minutes writing down the troubling thoughts, as a prelude to walking away from them.

Trap 8: Running with the Wrong Crowd

Scientists have discovered that moods are highly contagious: we “catch” them from the people around us, the result of specialized mirror neurons in the brain. If you’re feeling blue, spending time with upbeat, optimistic people might help you “light up” your brain’s positive emotion circuits.

Trap 9: Eating Sugar and Simple Carbs

Researchers now know that a depressed brain is an inflamed brain. And what we eat largely determines simple carbsour level of inflammation. Sugar and simple carbs are highly inflammatory: they’re best consumed sparingly, if at all.

In contrast, colorful fruits and veggies are chockablock with natural antioxidants. Eating them can protect the body’s omega-3s, providing yet another nice antidepressant boost.

Trap 10: Failing to Get Help

Depression can be a life-threatening illness, and it’s not one you should try to “tough out” or battle on your own. People experiencing depression can benefit from the guidance of a trained behavior therapist to help them put into action depression-fighting strategies like exercise, sunlight exposure, omega-3 supplementation, anti-ruminative activity, enhanced social connection, and healthy sleep habits.

So you think you’ve avoided all the traps, but you are still depressed, now what? According to the National Alliance on Mental Illness (NAMI) here are the options. (http://www.nami.org/Content/NavigationMenu/Mental_Illnesses/Depression/Depression_Treatment,_Services_and_Supports.htm)

Treating Major Depression

pillsAlthough depression can be a devastating illness, it often responds to treatment. The key is to get a specific evaluation and a treatment plan. Today, there are a variety of treatment options available for depression. There are three well-established types of treatment: medications, psychotherapy and electroconvulsive therapy (ECT). A new treatment called transcranial magnetic stimulation (rTMS), has recently been cleared by the FDA for individuals who have not done well on one trial of an antidepressant. For some people who have a seasonal component to their depression, light therapy may be useful. In addition, many people like to manage their illness through alternative therapies or holistic approaches, such as acupuncture, meditation, and nutrition. These treatments may be used alone or in combination. However, depression does not always respond to medication. Treatment resistant depression (TRD) may require a more extensive treatment regimen involving a combination of therapies.

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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 mmagic kindom in backgroundember Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.


By Bob Aronson

If you have cataracts, even the beginnings of cataracts, you could experience the same sudden and painful glaucoma attack I did.  Recently on my Facebook group, Organ Transplant Initiative (OTI) I wrote about my experience with Acute Closed Angle Glaucoma.  It started headache imagewith a little headache and by the time I got to the ER had foolishly endured 16 hours of searing hot, constant, ever increasing pain.  I knew I had early stage cataracts but never associated that condition with the pain I was experiencing.

Since that episode I have learned that transplant recipients or anyone taking corticosteroids (Cortisone, Hydrocortisone and Prednisone) may have a greater risk of contracting Glaucoma, more on that in coming paragraphs.

We rarely hear about Glaucoma  and when we do we get the impression that it develops slowly and only affects old people.  I have spent a good share of my lifetime working with the medical profession and have had the beginnings of cataracts for a while and still did not know that Glaucoma could attack suddenly, with intense pain and be caused by a cataract.

Before I go into any detail about what you can do should the same thing happen to you, let me first explain the two eye afflictions.  They are very different diseases and both can lead to blindness if not treated.  Here’s the simple answer.  A cataract is an opaque (you can’t see through) area on the lens. It’s kind of like one of those windows that lets light in but you can’t see through it.  Research indicates that about 90% of people have some cataract activity by age 65, but many get it earlier.  Regular eye exams will reveal it, even if it is just getting started.  The surgery for cataracts is pretty simple and very effective because the medical team will replace the lens.  There is a marked and significant improvement  in vision.

Glaucoma is totally different.  It is a complicated group of eye diseases which affect the optic nerve and can lead to progressive, irreversible vision loss.  It is the second leading cause of blindness caused by fluid accumulation that increases pressure inside the eyeball.

There are two main types of glaucoma, 1) open angle and 2) closed angle glaucoma. I won’t go into the medical details here., just some quick definitions.  If you would like more information just Google Glaucoma.

1) Closed Angle Glaucoma (acute angle-closure glaucoma). This is the condition that affected me.  It can come on suddenly closed angle glaucoma(and it did) and the patient commonly experiences pain and rapid vision loss. Fortunately, the symptoms of pain and discomfort make the sufferer seek medical help, resulting in prompt treatment which usually prevents any permanent damage from occurring.  In my case I waited too long and was lucky they were able to save my left eye.

 

 

2) open angle glaucomaPrimary Open Angle Glaucoma (chronic glaucoma) – progresses very slowly. The patient may not feel any symptoms; even slight loss of vision may go unnoticed. In this type of glaucoma, many people don’t get medical help until some permanent damage has already occurred.

 

 

Here are some of the signs and symptoms of closed angle glaucoma

  • Eye pain, usually severe (It came on suddenly and kept getting worse.  Like a red hot poker in the eye.  It finally becomes unbearable pain).
  •  Blurred vision(in started out blurred and by the time I got to the ER I had no vision in the eye)
  • Eye pain is often accompanied by nausea, and sometimes vomiting (the symptoms were not unlike the worst hangover you’ve ever had.  Or…if you don’t drink, like the worst case of stomach flu you’ve ever had).
  • Lights appear to have extra halo-like glows around them
  • Red eyes
  • Sudden, unexpected vision problems, especially when lighting is poor

Signs and symptoms of primary open-angle glaucoma

Peripheral vision is gradually lost. This nearly always affects both eyes.

  • In advanced stages, the patient has tunnel vision

Rrisk factors are linked to glaucoma?

  • Advanced age – people over 60 years have a higher risk of developing glaucoma. For African-Americans, the risk rises at a much younger age.
  • Ethnic background is a risk factor as well.  For example,  East Asians, because of their shallower anterior chamber depth, have a higher risk of developing glaucoma compared to Caucasians. The risk for those of Inuit origin is considerably greater still. Studies show that African-Americans are three to four times more likely to develop glaucoma than whites.  Also…it appears as though Glaucoma favors women over men.  Studies indicate that women are three times as likely to develop glaucoma as men.  There are other risk factors as well and included among them is the use of corticosteroids.
  • Patients who take Corticosteroids like cortisone, hydrocortisone and prednisone for long periods of time have a raised risk of developing several different conditions, including glaucoma. The risk is even greater with eyedrops containing corticosteroids.

Now that you have some background lets talk about the disease.  I get frequent headaches, I always have and aspirin has always worked for me.  When this attack hit me, I took some aspirin, it did nothing.  Then I remembered telling a physician about my headaches and he suggested that maybe they were mini-migraines but we did not pursue the topic even though his suggestion stuck with me.

As the headache worsened I thought about the mini migraines and my wife Robin went to the pharmacy to get some over the counter migraine medicine.  It had no effect and the headache kept getting worse.  Then we called my primary care doc, told him I was having a migraine and he called in a prescription.  I was to take it every four hours, which I did but the headache got worse.  Several times during this ordeal Robin asked me if I wanted to go to the ER to which I responded negatively.  Finally after 16 hours of worsening pain, loss of vision and vomiting I gave in.  It was 4 AM when I awakened Robin to tell her I could no longer tolerate the pain so she drove me to the Mayo Clinic Emergency Department in Jacksonville.

Upon entering the ER I was asked to describe my symptoms which I did but also said I was experiencing a migraine headache.  The Doctor listened but immediately looked at my eyes and expressed some doubt about my self-diagnosis.  She ordered morphine for pain a CT scan of my head and called for an ophthalmologist, who arrived within minutes and conducted a more thorough exam of my eyes which included testing for pressure on the eyeball.  He quickly arrived at the conclusions that I was suffering from  acute closed angle glaucoma.  Subsequent research tells me that medical people are concerned about eye pressures that are over 23-25.  Mine was 60.  I had waited far too long to come to the ER.  The eye specialist continually put drops in the eye until the pressure was down to a safer level at which time I was hurried into a laser surgery room where they zapped the eye to create a tiny hole that would release more pressure.  It took only a few minutes.  The headache was gone, my stomach was back to normal and I was high on morphine for two days.

I’m writing this so that others don’t make the same mistake. Headaches can be serious, and when you combine a bad headache with vision loss and vomiting the Emergency Room is where you should be headed.  I got lucky….my vision was not lost.  A few days after this incident I went back to Mayo and they did the laser surgery on the other eye.

In about six weeks I will return to the clinic and have the cataracts repaired and that, I hope, will be the end of this vision episode.

There are some steps you can take to prevent this condition.  Here’s what the Mayo Clinic Says.  http://www.mayoclinic.org/diseases-conditions/glaucoma/basics/definition/con-20024042

  • iglaucoma preventionGet regular eye care. Regular comprehensive eye exams can help detect glaucoma in its early stages before irreversible damage occurs. As a general rule, have comprehensive eye exams every three to five years after age 40 and every year after age 60. You may need more frequent screening if you have glaucoma risk factors. Ask your doctor to recommend the right screening schedule for you.
  • Treat elevated eye pressure. Glaucoma eyedrops can significantly reduce the risk that elevated eye pressure will progress to glaucoma. To be effective, these drops must be taken regularly even if you have no symptoms.
  • Eat a healthy diet. While eating a healthy diet won’t prevent glaucoma, it can improve your physical and mental health. It can also help you maintain a healthy weight and control your blood pressure.
  • Wear eye protection. Serious eye injuries can lead to glaucoma. Wear eye protection when you use power tools or play high-speed racket sports on enclosed courts. Also wear hats and sunglasses if you spend time outside.

Don’t make the same mistake I did.  Don’t  self-diagnose, don’t delay.  When a condition has the potential to destroy your vision you must get immediate medical attention.


Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member OrganMy new hat April 10 2014Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.


By Bob Aronson

You are what you eatAs I did the research for this blog, I “Cherry Picked” information from a great many sources.  I am not a medical professional, but made every effort to ensure that the information I used came from experts.  I have identified sources where possible. 

This is a blog, it is made up of a good many opinions.  You should not make decisions about your health based on this or any other posting or even your own research. Only a highly skilled, educated and experienced physician can do that.  Blogs like this can only offer you general information.  As you read this remember that no two people are exactly alike.  What works for one person may cause serious damage to another even though they share similar characteristics.  Your health is too important to be left to chance.  It should be managed by a qualified physician who can focus on your specific condition, examine you, call for appropriate tests, diagnose and then develop a treatment program to meet your unique needs.

Kidney disease is disabling and killing us and no one seems to be paying attention.   To get yours I am going to start this post with some startling, even shocking facts.

  • Chronic kidney disease can lead to kidney failure, heart attack, stroke and death. In factkidney graphic, kidney disease is the nation’s ninth leading cause of death
  • 26 million Americans have kidney disease (many of whom don’t yet know it) and an additional 76 million are at high risk of developing it.
  • Of the 122,000 people on the national organ transplant waiting list about 100,000 are waiting for kidneys and there are not enough to go around.
  • Nearly a half million Americans are getting dialysis and the number is growing rapidly.
  • Diabetics are in the greatest danger of developing kidney disease and The American Diabetes Association says 25.8 million of us have it, that’s 8.3 percent of the U.S. population. Of these, 7 million do not know they are diabetic.
  • And – a final startling fact.  Kidney disease kills 100 thousand Americans a year, that’s more than prostate and breast cancer combined, but kidney disease gets nowhere near the publicity or concern of those two malignancies.

 

Got your attention?  Ok…there’s a lot more to come but first let’s define the topic. – just exactly what do kidneys do and what is kidney disease?  Here’s what the National Kidney Foundation says:

The kidneys are bean-shaped organs, each about the size of a fist. They are located just below the rib cage, one on each side of the spine. The kidneys are sophisticated reprocessing machines. Every day, a person’s kidneys filter about 120 to 150 quarts of blood to produce about 1 to 2 quarts of waste products and extra fluid. The wastes and extra fluid become urine, which flows to the bladder through tubes called ureters. The bladder stores urine until releasing it through urination.”

 So what is kidney disease?  The Mayo Clinic offers this explanation:

Chronic kidney disease, also called chronic kidney failure, describes the gradual loss of kidney function. Your kidneys filter wastes and excess fluids from your blood, which are then excreted in your urine. When chronic kidney disease reaches an advanced stage, dangerous levels of fluid, electrolytes and wastes can build up in your body.

In the early stages of chronic kidney disease, you may have few signs or symptoms. Chronic kidney disease may not become apparent until your kidney function is significantly impaired.

Treatment for chronic kidney disease focuses on slowing the progression of the kidney damage, usually by controlling the underlying cause. Chronic kidney disease can progress to end-stage kidney failure, which is fatal without artificial filtering (dialysis) or a kidney transplant.”

Causes of Kidney Disease

What causes Kidney disease?  First let’s define terms.  There’s ESRD (End Stage Renal Disease or Kidney failure), where the organs just quit working and there is CKD (Chronic Kidney Disease) which can lead to kidney failure.  The causes could be many but the most common are diabetesDiabetes and High blood pressure.  There are concerns, too, that some environmental factors may also contribute to both CKD and ESRD.  Sri Lanka, for example, has banned Monsanto Corporation’s “Roundup” herbicide on the grounds that it causes both kidney maladies.  Monsanto says its studies offer convincing evidence that the charges are not true.

What to do about it

Much is known about who faces the greatest risks of developing chronic kidney disease and how it can be prevented, detected in its early stages, and treated to slow or halt its progression. But unless people at risk are tested, they are unlikely to know they have kidney disease; it produces no symptoms until it is quite advanced.

Even when it is not fatal, the cost of treating end-stage kidney disease through dialysis or a kidney transplant is astronomical, more than fivefold what Medicare pays annually for the average patient over age 65. The charges do not include the inestimable costs to quality of life among patients with advanced kidney disease.

Much is known about who faces the greatest risks of developing chronic kidney disease and how it can be prevented, detected in its early stages, and treated to slow or halt its progression. But unless people at risk are tested, they are unlikely to know they have kidney disease; it produces no symptoms until it is quite advanced.  And…it appears as though it is quite common that many physicians overlook simple tests that could save lives.  For example, high blood pressure, is a leading cause of kidney failure yet many physicians don’t check to see how well vital organs are functioning.  Patients, then, have to be their own advocates and insist on tests to see what effect diabetes and/or high blood pressure are affecting their organs. For some reason kidney disease often is not on the medical radar, and in as many as three-fourths of patients with risk factors for poor kidney function, physicians fail to use a simple, inexpensive test to check for urinary protein.  So, our message to you is simple…make sure your doctor checks the amount of protein in your urine at least once a year.

A study published in April online in The American Journal of Kidney Disease demonstrated how common lifestyle factors can harm the kidneys. Researchers led by Dr. Alex Chang of Johns Hopkins University followed more than 2,300 young adults for 15 years. ParticipantJohns Hopkinss were more likely to develop kidney disease if they smoked, were obese or had diets high in red and processed meats, sugar-sweetened drinks and sodium, but low in fruit, legumes, nuts, whole grains and low-fat dairy.

Only 1 percent of participants with no lifestyle-related risk factors developed protein in their urine, an early indicator of kidney damage, while 13 percent of those with three unhealthy factors developed the condition, known medically as proteinuria. Obesity alone doubled a person’s risk of developing kidney disease; an unhealthy diet raised the risk even when weight and other lifestyle factors were taken into account.

Overall, the risk was highest among African-Americans; those with diabetes, high blood pressure or a family history of kidney disease; and those who consumed more soft drinks, red meat and fast food.

Dr. Beth Piraino, president of the National Kidney Foundation, said, “We need to shift the focus from managing chronic kidney disease to preventing it in the first place.”  And one of the ways to prevent kidney disease is to live healthier.  I know, no one wants to hear those words, “Live Healthier.”  Ok, I won’t use them again, but if you eat right and get the right kind and amount of exercise you can avoid kidney problems.  Want some good recipes and ideas for weight control?  Try this link  http://www.kidney.org/patients/kidneykitchen/FriendlyCooking.cfm

You are at greater risk of having kidney disease if others in your family have it or had it, genetic factors are important, but in addition you should know that African-Americans, Hispanic Americans, Asian-Americans and American Indians are more likely than white Americans to develop kidney disease.  I have been unable to find out why.  One Doctor said that prevention is the key and that it is not very complicated.  “I wouldn’t have to work so hard if they didn’t smoke, reduced their salt intake, ate more fresh fruits and vegetables, and increased their physical activity. These are things people can do for themselves. They involve no medication.”

Physicians also urge patients with any risk factor for kidney disease to be screened annually with inexpensive urine and blood tests. That includes seniors 65 and above, for whom the cost is covered by Medicare. Free testing is also provided by the National Kidney Foundation for people with diabetes.

The urine test can pick up abnormal levels of protein, which is supposed to stay in the body, compared with the amount of creatinine, a waste product that should be excreted. The blood tUrine testest, called an eGFR (for estimated glomerular filtration rate), measures how much blood the kidneys filter each minute, indicating how effectively they are functioning.

If it is determined that you have kidney disease you should be referred to a nephrologist.  If you are not referred, ask for a referral.  The Nephrologist will work closely with your family physician to help control the disease.

There are two medications commonly used to treat high blood pressure that often halt or delay the progression of kidney disease in people with diabetes: ACE inhibitors and ARB’s (angiotensin receptor blockers). Careful control of blood sugar levels also protects the kidneys from further damage.

As I conducted the research for this blog I found that one of the most comprehensive websites for factual, understandable information about Kidney Disease is India’s “The Health Site.” It also contains a good deal of advertising and other questionable material, but its information on the kidneys and kidney disease is backed up by solid research.  What follows is some of it.  http://www.thehealthsite.com/

12 Possible Kidney Disease Symptoms

Even an unhealthy lifestyle with a high calorie diet, certain medicines. lots of soft drinks and sugar consumption can also cause kidney damage. Here is a list of twelve symptoms which could indicate something is wrong with your kidney:

  1. Changes in your urinary function: The first symptom of kidney disease is changes in the amount and frequency of your urination. There may be an increase or decrease in amount and/or its frequency, especially at night. It may also look more dark coloured. You may feel the urge to urinate but are unable to do so when you get to the restroom.
  2. Difficulty or pain during voiding: Sometimes you have difficulty or feel pressure or pain while voiding. Urinary tract infections may cause symptoms such as pain or burning during urination. When these infections spread to the kidneys they may cause fever and pain in your back.
  3. Blood in the urine: This is a symptom of kidney disease which is a definite cause for concern. There may be other reasons, but it is advisable to visit your doctor in case you notice it.
  4. Swelling: Kidneys remove wastes and extra fluid from the body. When they are unable to do so, this extra fluid will build up causing swelling in your hands, feet, ankles and/or your face. Read more about swelling in the feet.
  5. Extreme fatigue and generalised weakness: Your kidneys produce a hormone called erythropoietin which helps make red blood cells that carry oxygen. In kidney disease lower levels of erythropoietin causes decreased red blood cells in your body resulting in anaemia.  There is decreased oxygen delivery to cells causing generalised weakness and extreme fatigue. Read more about the reasons for fatigue.
  6. Dizziness & Inability to concentrate: Anaemia associated with kidney disease also depletes your brain of oxygen which may cause dizziness, trouble with concentration, etc.
  7. Feeling cold all the time: If you have kidney disease you may feel cold even when in a warm surrounding due to anaemia. Pyelonephritis (kidney infection) may cause fever with chills.
  8. Skin rashes and itching: Kidney failure causes waste build-up in your blood. This can causes severe itching and skin rashes.
  9. Ammonia breath and metallic taste: Kidney failure increases level of urea in the blood (uraemia). This urea is broken down to ammonia in the saliva causing urine-like bad breath called ammonia breath. It is also usually associated with an unpleasant metallic taste (dysgeusia) in the mouth.

10. Nausea and vomiting: The build-up of waste products in your blood in kidney disease can also cause nausea and vomiting. Read 13 causes for nausea.

11. Shortness of breath: Kidney disease causes fluid to build up in the lungs. And also, anaemia, a common side-effect of kidney disease, starves your body of oxygen. You may have trouble catching your breath due to these factors.

12. Pain in the back or sides: Some cases of kidney disease may cause pain. You may feel a severe cramping pain that spreads from the lower back into the groin if there is a kidney stone in the ureter. Pain may also be related to polycystic kidney disease, an inherited kidney disorder, which causes many fluid-filled cysts in the kidneys. Interstitial cystitis, a chronic inflammation of the bladder wall, causes chronic pain and discomfort.

It is important to identify kidney disease early because in most cases the damage in the kidneys can’t be undone. To reduce your chances of getting severe kidney problems, see your doctor when you observe one or more of the above symptoms. If caught early, kidney disease can be treated very effectively.

http://www.thehealthsite.com/diseases-conditions/12-symptoms-of-kidney-disease-you-shoulnt-ignore-world-kidney-day-special/

Kidney Disease Prevention

Ten Steps you can take

 Our kidneys are designed such that their filtration capacity naturally declines after the age of 30-40 years. With every decade after your 30s, your kidney function is going to reduce by 10%. But, if you’re going to increase the load on your kidneys right from the beginning, your risk of developing kidney disease later in life will definitely be higher. To be on the safe side, follow these few tips and take good care of your kidneys to prevent the risk of developing kidney problems.

1. Manage diabetes, high blood pressure and heart disease: In most of the cases, kidney disease is a secondary illness that results from a primary disease or condition such as diabetes, heart diseases or high blood pressure. Therefore, controlling sugar levels, cholesterol and blood pressure by following a healthy diet, exercise regimen and medication guidelines is essential to keep kidney disease at bay.

2. Reduce the intake of salt: Salt increases the amount of sodium in diet. It not only increases blood pressure but also triggers the formation of kidney stones. Here are a few tips to actually cut down your salt intake.

3. Drink lots of water every day:  Water keeps you hydrated and helps the kidneys to remove all the toxins from your body. It helps the body to maintain blood volume and concentration. It also helps in digestion and controls the body temperature. At least 8-10 glasses of water a day is a must.

4. Don’t resist the urge to urinate: Filtration of blood is a key function that your kidneys perform. When the process of filtration is done, extra amount of wastes and water is stored in the urinary bladder that needs to be excreted. Although your bladder can only hold a lot of urine, the urge to urinate is felt when the bladder is filled with 120-150 ml of urine.

So, if start ignoring the urge to go to the restroom, the urinary bladder stretches more than its capacity. This affects the filtration process of the kidney.

5. Eat right:  Nearly all processes taking place inside your body are affected by what you choose to eat and how you eat. If you eat more unhealthy, junk and fast food, then your organs have to face the consequences, including the kidneys. Here’s more information on the relation between unhealthy diet and kidney damage.

You should include right foods in your diet. Especially foods that can strengthen your kidneys like fish, asparagus, cereals, garlic and parsley. Fruits like watermelon, oranges and lemons are also good for kidney health. 

6. Drink healthy beverages: Including fresh juices is another way of drinking more fluids and keeping your kidneys healthy. Juices help the digestive system to extract more water and flush out wastes from the body. Avoid drinking coffee and tea. They contain caffeine which reduces the amount of fluids in the body. So, the kidneys have to work harder to get rid of them.

If you’re already suffering from kidney problems, you should avoid juices made from vegetables such as spinach and beets. These foods are rich in oxalic acid and they help in the formation of kidney stones. But you can definitely have coconut water.

7. Avoid alcohol and smoking: Excess intake of alcohol can disturb the electrolyte balance of the body and hormonal control that influences the kidney function. Smoking is not directly related to kidney problems but it reduces kidney function significantly. It also has an adverse effect on heart health which can further worsen kidney problems.

8. Exercise daily: Researchers believe that obesity is closely linked to kidney related problems. Being overweight doubles the chances of developing kidney problems. Exercising, eating healthy and controlling portion size can surely help you to lose extra weight and enhance kidney health. Besides, you will always feel fresh and active. Here’s more about how obesity and kidney disease are linked.

9. Avoid self-medication: All the medicines you take have to pass through the kidney for filtration. Increased dosage or taking medicines that you are not aware of can increase the toxin load on your kidneys. That’s why you should always follow dosage recommendations and avoid self-medication. Read more about how drugs affect the kidneys. 

10. Think before you take supplements and herbal medicine: If you’re on vitamin supplements or if you’re taking some herbal supplements, you should reconsider your dosage requirement. Excessive amount of vitamins and certain plant extracts are linked to kidney damage. You should talk to your doctor about the risk of kidney disease before taking them.

Dialysis and Transplantation

By Ed Bryant

(I could find no additional information about Mr. Bryant other than the following website.  His information, though, is sound).

https://nfb.org/images/nfb/publications/vod/vow0006.htm

Dialysis

Dialysis is not an “artificial kidney.” A person undergoing hemodialysis must be hooked up to a machine three times a week, three to four hours per session. A normal vein cannot tolerate the 16–gauge needles that must be inserted into the arm during hemodialysis, so the doctor must surgically connect a vein in the wrist with an artery, forming a bulging fistula that will better accommodate the large needles needed for treatment.dialysis

Like the kidney, a hemodialysis machine is a filter. Where it uses tubes and chemicals, the kidney uses millions of microscopic blood vessels, fine enough to pass urine while retaining suspended proteins. Long–term high blood glucose can significantly damage the kidney’s filters, leading to scarring, blockage, and diminished renal function. Diabetes is the leading cause of kidney disease. Long–term diabetics often have cardiovascular and blood pressure problems, and the added strain of hemodialysis, with its rise in blood pressure straining eyes and heart function, can be too much for some. The diabetic dialysis patient spends, on the average, 33% more time in the hospital than does the non–diabetic dialysis patient, according to 1999 USRDS figures.

Some patients choose CAPD (continuous ambulatory peritoneal dialysis) or its variant, CCPD (continuous cycling peritoneal dialysis), both of which can be carried out at home, without an assistant. Unlike hemodialysis, which uses a big machine to remove toxic impurities from the blood, peritoneal dialysis works inside the body, making use of the peritoneal membrane to retain a reservoir of dialysis solution, which is exchanged for fresh solution, via catheter, every four to eight hours. CAPD is carried out by the patient, who simply exchanges spent for fresh solution, every four to eight hours, at home, at work, or while travelling. CCPD, its variant, makes use of an automated cycler, which performs the exchanges while the patient is asleep. Although more complicated and machine–dependent, it does allow daytime freedom from exchanges, and may be the appropriate choice for some. Though the risk of infections is heightened (as it is with any permanent catheterization), these two processes have advantages, one being that insulin can be added to the dialysis solution, freeing the patient from the need to inject, and giving good blood sugar control.

Transplantation

Kidney transplantation is a logical alternative for many. It substantially improves a patient’s kidney transplantquality of life. Although the transplant recipient must be on anti–rejection/ immunosuppressive therapy for life, with the inherent risk from otherwise nuisance infections, a transplant frees the patient from the many hours spent on hemodialysis procedures each week, or from the periodic “exchanges” and open catheter of CAPD, allowing a nearly normal lifestyle. For those ESRD patients who can handle the stresses of transplant surgery, the resulting gains in physical well–being add up to real improvement in quality of life and overall longevity.

“Fifty percent of all kidney transplantations taking place today are into diabetics,” states Giacomo Basadonna, MD, PhD, a transplant surgeon at Yale University School of Medicine, in New Haven, Connecticut. He reports that success rates are identical with kidney transplants performed on non–diabetic ESRD patients. “Today,” he advises, “average kidney survival, from a living donor, is greater than 15 years.”

One of the areas where we are seeing rapid improvement is immunosuppressive medication. The traditional mix of immunosuppressants: cyclosporine, prednisone, imuran, is giving way to more targeted medications that may have fewer side effects. Cellcept, by Roche/Syntex, and Rapamycin (Rapamune), by Wyeth/Ayerst, have been approved by the FDA, and others are being tested. The risk of organ rejection is always present, but each new development increases the chances of success.

I and others knowledgeable in kidney transplantation advise you to pick the best transplant center possible. Once you have read their statistics, ask your prospective center the following questions. If they don’t answer to your satisfaction, you should consider going to another center.

1. Do you have an information packet for prospective donors and recipients?

2. Can you put me in touch with someone who has had a transplant at your center?

3. What is your “graft survival” (success) rate?

4. Who will my transplant surgeon be? If a fellow or resident, will he/she be supervised by a practicing transplant surgeon?

5. How long have your current surgeons been doing kidney transplants? How many have they done? That your center has 35 years experience with kidney transplants is of little consequence if my surgeon has only done ten in his or her career.

6. What is the average post–operative stay in your hospital?

7. When I come for my transplant, or come back for follow–ups, will there be any affordable housing for me and/or my family? (Ronald McDonald House, or other lodging with discount rates…) or will I get stuck in a luxury hotel for $125 a night?

8. How often will I need to come back to the center for follow–ups? Can my nephrologist do the blood tests and send you the results?

9. Can you recommend a nephrologist in my area?

10. Do you have a toll–free number to call for after–transplant information?

11. What is your policy on people with insufficient health insurance? Will you work with an uninsured patient? What will it cost?

12. Are you prepared to satisfy my doubts? Will you show me the documents that answer my questions? Will you guarantee the price quoted?

Conclusion

Kidney disease can be manageable if caught early and treated appropriately.  The information contained in this blog should allow you to make good decisions that can provide you with the quality of life you seek and deserve.  For more information about kidney disease and treatment here are some additional sources.

  • The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

http://tinyurl.com/qfna7f2

 

 

 

 


My new hat April 10 2014Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient,
 the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.


 By Bob Aronson

insomnia imageNormally I hope my blogs are interesting enough to keep people engaged and awake while reading them.  In this case if you get sleepy, go with it because chances are that if you are reading this you are an insomniac.

I can fall asleep at the drop of a hat.  I wake up shortly after it has fallen.  Insomnia or the inability to sleep normally is a terrible malady and one which affects millions of people, especially transplant patients both pre and post surgery.  Often insomnia is the result of the drugs we take – but not always.

It’s always good to start with a definition of terms.  Exactly what is insomnia?  Well, I’m going to offer a couple of sources.  First the National Sleep foundation says there are at least five ways to describe insomnia: http://tinyurl.com/n8mjwsu

  1. Acute insomnia is a brief episode of difficulty sleeping usually caused by a life event, such as a stressful change in a person’s job, insomnia math cartoonreceiving bad news, or travel. Often acute insomnia resolves without any treatment.
  2. Chronic insomnia is a long-term pattern of difficulty sleeping. It is usually considered chronic if a person has trouble falling asleep or staying asleep at least three nights per week for three months or longer. Some people with chronic insomnia have a long-standing history of difficulty sleeping. Chronic insomnia has many causes.
  3. Comorbid insomnia is insomnia that occurs with another condition. Psychiatric symptoms — such as anxiety and depression — are known to be associated with changes in sleep. Certain medical conditions can either cause insomnia or make a person uncomfortable at night (as in the case of arthritis or back pain, which may make it hard to sleep.
  4. Onset insomnia is difficulty falling asleep at the beginning of the night.
  5. Maintenance insomnia is the inability to stay asleep. People with maintenance insomnia wake up during the night and have difficulty returning to sleep.

The American Academy of Sleep Medicine elaborates even more.  They say there are the following kinds of insomnia. http://tinyurl.com/lus3682

  1. General insomnia

A classification of sleep disorders in which a person has trouble falling asleep, staying asleep, or waking up too early. These disorders may also be defined by an overall poor quality of sleep.

  1. Adjustment insomnia

internet cartoonThis disorder, also called acute insomnia or short-term insomnia, disturbs your sleep and usually stems from stress. The sleep problem ends when the source of stress is gone or when you adapt to the stress. The stress does not always come from a negative experience. Something positive can make you too excited to sleep well.

  1. Behavioral insomnia of childhood

This condition occurs when children don’t go to bed on time unless a parent or guardian enforces a bedtime. If the children are made to go to bed at a specified time, then they tend to fall asleep at a normal hour. If they are not given strict bedtimes, then they may linger awake for hours at night.

  1. Idiopathic insomnia

Idiopathic insomnia is a lifelong sleep disorder that starts during infancy or childhood and continues into adulthood. This insomnia cannot be explained by other causes. It is not a result of any of the following other sleep disorders.

  • Medical problems
  • Psychiatric disorders
  • Stressful events
  • Medication use
  • Other behaviors

It may result from an imbalance in your body, such as an overactive awakening system       and/or an underactive sleep system, but the true cause of this disorder is still unclear.

  1. Insomnia due to a drug or substance

This type of insomnia is directly related to the use of any of the following substances:

  • Medication
  • Caffeine
  • Alcohol
  • A food item

Your sleep is disrupted by your use of the substance. This type of sleep problem may also   occur when you stop using a substance

  1. Insomnia due to a medical condition. 

This insomnia is caused by a mental health disorder. The insomnia is a symptom of the   disorder. The course and severity of insomnia are directly linked to that of the mental health disorder, but the insomnia is a separate focus of treatment. This insomnia is a disorder only if it is severe enough to require separate treatment.

  1. Insomnia nonorganic, unspecified. 

This type of insomnia suggests that known substances and other physical causes of  the insomnia have been ruled out. This means that the cause of insomnia is most likely due to an underlying mental health disorder, psychological factor, or sleep disruptive behaviors.

The name may also be used on a temporary basis while further evaluation and testing are completed. It is the name used when a person with insomnia does not meet the criteria for another type of insomnia.

  1. Insomnia organic, unspecified. 

This type of insomnia is caused by a medical disorder, physical condition, or substance exposure. But the specific cause remains unclear. Further testing is required to discover the exact cause. The name may be used on a temporary basis while further evaluation and testing are completed.

  1.  Paradoxical insomnia is a complaint of severe insomnia. It occurs without objective evidence of any sleep disturbance. Daytime effects vary in severity, but they tend to be far less severe than one would expect given the expressed sleep complaints.People with this disorder often report little or no sleep for one or more nights. They also describe having an intense awareness of the external environment or internal processes consistent with being awake. This awareness suggests a state of hyperarousal. A key feature is an overestimation of the time it takes them to fall asleep. They also underestimate their total sleep time.10.
  2. Psychophysiological insomnia.

This insomnia is associated with excessive worrying, specifically focused on not being able to sleep. The insomnia may begin suddenly following an event or develop slowly over many years.

People with this sleep disorder worry too much about their insomnia and about being tired the next day. As a result, they learn to become tense and anxious as bedtime approaches. They may have racing thoughts that all relate to insomnia and trying to fall asleep. As they worry about falling asleep, they become more and more tense, which makes it less likely that they will be able to fall asleep.

While all transplant patients may suffer from some form of insomnia,
Kidney transplant patientresearch clearly indicates that those who have kidney transplants are much more likely to have sleep problems.  This eye opening  article will give you some insight and solutions as well. “The Kidney Transplant Side Effect That No One Tells Chronic Kidney Disease Patients About

December 07, 2013 Kidney Buzz http://tinyurl.com/m5bmhky

 And, there’s a lot more about kidney disease and sleep which can cause major health complications and even increase the risk of death.

Recommended Reading: Sleep Disorders are common in Individuals with Kidney Disease on Dialysis

A study published in Biomedcentral Nephrology Journal found that the most frequent sleep problem among people with a Kidney Transplant was difficulty staying asleep (49.4%), followed by problems falling asleep (32.1%). 62.9% of transplant patients had to wake up to urinate which was the most common sleep disturbance, and caused 27% of transplant recipients to have reduced daytime functionality.

Recommended Reading: Chronic Kidney Disease Patients Do Not Have To Suffer Sleep Loss

Another study first reported by Science Nordic and later published in the Journal of Sleep Research, further confirms that insomnia is linked with a wide range of health problems including higher risk for anxiety, depression, fibromyalgia (chronic widespread pain), whiplash, rheumatoid arthritis, arthrosis

(an age-related cartilage degeneration condition), severe headache, asthma, heart attack and osteoporosis. Researchers also found a less strong association between insomnia and obesity, hypertension and stroke.

Recommended Reading: The Natural Way For Chronic Kidney Disease Patients To Get A Good Night’s Sleep

 

Solutions….How to Get Some Sleep

“Ok,” you say, “That’s good, now what do I do about it?  How can I get a good  night’s sleep?”  And…that’s the $64 or $64,000 or $64,000,000 question depending on the era in which you grew up.  There are a lot of answers to that question and none of them work for everyone.   So let’s start with some advice from the National Institutes for Health NIH) http://tinyurl.com/mo6v483

How Is Insomnia Treated?

http://tinyurl.com/lyvl5or

Lifestyle changes often can help relieve acute (short-term) insomnia. These changes might make it easier to fall asleep and stay asleep.

Several medicines also can help relieve insomnia and re-establish a regular sleep schedule. However, if your insomnia is the symptom or side effect of another problem, it’s important to treat the underlying cause (if possible).

Lifestyle Changes

If you have insomnia, avoid substances that make it worse, such as:

  • booze and smokesCaffeine, tobacco, and other stimulants. The effects of these substances can last as long as 8 hours.
  • Certain over-the-counter and prescription medicines that can disrupt sleep (for example, some cold and allergy medicines). Talk with your doctor about which medicines won’t disrupt your sleep.
  • Alcohol. An alcoholic drink before bedtime might make it easier for you to fall asleep. However, alcohol triggers sleep that tends to be lighter than normal. This makes it more likely that you will wake up during the night.

Try to adopt bedtime habits that make it easier to fall asleep and stay asleep. Follow a routine that helps you wind down and relax before bed. For example, read a book, listen to soothing music, or take a hot bath.

Try to schedule your daily exercise at least 5 to 6 hours before going to bed. Don’t eat heavy meals or drink a lot before bedtime.

Make your bedroom sleep-friendly. Avoid bright lighting while winding down. Try to limit possible distractions, such as a TV, computer, or pet. Make sure the temperature of your bedroom is cool and comfortable. Your bedroom also should be dark and quiet.

Go to sleep around the same time each night and wake up around the same time each morning, even on weekends. If you can, avoid night shifts, alternating schedules, or other things that may disrupt your sleep schedule.

Cognitive-Behavioral Therapy

CBT for insomnia targets the thoughts and actions that can disrupt sleep. This therapy encourages good sleep habits and uses several methods to relieve sleep anxiety.

For example, relaxation techniques and biofeedback are used to reduce anxiety. These strategies help you better control your breathing, heart rate, muscles, and mood.

CBT also aims to replace sleep anxiety with more positive thinking that links being in bed with being asleep. This method also teaches you what to do if you’re unable to fall asleep within a reasonable time.

biofeedbackCBT also may involve talking with a therapist one-on-one or in group sessions to help you consider your thoughts and feelings about sleep. This method may encourage you to describe thoughts racing through your mind in terms of how they look, feel, and sound. The goal is for your mind to settle down and stop racing.

CBT also focuses on limiting the time you spend in bed while awake. This method involves setting a sleep schedule. At first, you will limit your total time in bed to the typical short length of time you’re usually asleep.

This schedule might make you even more tired because some of the allotted time in bed will be taken up by problems falling asleep. However, the resulting tiredness is intended to help you get to sleep more quickly. Over time, the length of time spent in bed is increased until you get a full night of sleep.

For success with CBT, you may need to see a therapist who is skilled in this approach weekly over 2 to 3 months. CBT works as well as prescription medicine for many people who have chronic insomnia. It also may provide better long-term relief than medicine alone.

For people who have insomnia and major depressive disorder, CBT combined with antidepression medicines has shown promise in relieving both conditions.

Prescription Medicines

Many prescription medicines are used to treat insomnia. Some are meant for short-term use, while others are meant for longer use.  There are so many drugs that can be prescribed we are not even going to attempt to list them.  Just know that your primary care physician or, better yet, your sleep specialist has a huge armory of drugs from which to draw, but they’ll want a “history” from you before they even begin to suggest remedies..  And…remember, those remedies may not be medicinal.

medsTalk to your doctor about the benefits and side effects of insomnia medicines. For example, insomnia medicines can help you fall asleep, but you may feel groggy in the morning after taking them.

Rare side effects of these medicines include sleep eating, sleep walking, or driving while asleep. If you have side effects from an insomnia medicine, or if it doesn’t work well, tell your doctor. He or she might prescribe a different medicine.  Also, if you are either pre or post transplant, tell the physician who’s treating you for sleep.  Some medications may not mix well with those you are taking for your condition.   And…as a precaution, never take any medication before you personally check with your transplant team.

Some insomnia medicines can be habit forming. Ask your doctor about the benefits and risks of insomnia medicines.

Over-the-Counter Products

Some over-the-counter (OTC) products claim to treat insomnia. These products include melatonin, L-tryptophan supplements, and valerian teas or extracts.

The Food and Drug Administration doesn’t regulate “natural” otc drugsproducts and some food supplements. Thus, the dose and purity of these substances can vary. How well these products work and how safe they are isn’t well understood.

Some OTC products that contain antihistamines are sold as sleep aids. Although these products might make you sleepy, talk to your doctor before taking them.

Antihistamines pose risks for some people. Also, these products may not offer the best treatment for your insomnia. Your doctor can advise you whether these products will benefit you.

At the risk of sounding overly cautious you should take the same precautions with Over the Counter Drugs as you would with prescriptions.  Talk to your transplant team before you take anything.

Other quick tips

At night.

  • Use the bed and bedroom for sleep and sex only
  • Establish a regular bedtime routine and a regular sleep-wake schedule
  • Do not eat or drink too much close to bedtime
  • Create a sleep-promoting environment that is dark, cool and comfortable
  • Avoid disturbing noises – consider a bedside fan or white-noise machine to block out disturbing sounds

During the day:

  • Consume less or no caffeine, particularly late in the day
  • Avoid alcohol and nicotine, especially close to bedtime
  • Exercise, but not within three hours before bedtime
  • Avoid naps, particularly in the late afternoon or evening
  • Keep a sleep diary to identify your sleep habits and patterns that you can share with your doctor
  • The prevalence of insomnia is higher among older people and women. Women suffer loss of sleep in connection with menstruation, pregnancy, and menopause. Rates of insomnia increase as a function of age but most often the sleep disturbance is attributable to some other medical condition.
  • Some medications can lead to insomnia, including those taken for:

o   colds and allergies

o   high blood pressure

o   heart disease

o   thyroid disease

o   birth control

o   asthma

o   pain medications

o   depression (especially SSRI antidepressants)

  • Some common sleep disorders such as restless legs syndrome and sleep apnea can also lead to insomnia.
  • Sleep is as essential as diet and exercise. Inadequate sleep can result in fatigue, depression, concentration problems, illness and injury.

nih logoNational Institutes of Health- (NIH) supported research is shedding light on how sleep and lack of sleep affect the human body. The NIH and its partners will continue to work together to advance sleep research. Read the full fact sheet…

Insomnia Clinical Trials  Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. To find clinical trials that are currently underway for Insomnia, visitwww.clinicaltrials.gov.

PLEASE SHARE THIS BLOG ANYWHERE YOU THINK IT WILL HELP SOMEONE.  ATTRIBUTION APPRECIATED  –PERMISSION NOT REQUIRED. 

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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, GIF shot bob by TVthe founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.


By Bob Aronson

“Working people have a lot of bad habits, but the worst of these is work.” 

Clarence Darrow

Preparation for old age should begin not later than one’s teens.  A life which is empty of purpose until 65 will not suddenly become filled on retirement.

Dwight L. Moody

Retirement: It’s nice to get out of the rat race, but you have to learn to get along with less cheese.

Gene Perret

 pot gardenHow many times have you heard about “Uncle Joe” who retired from his 50 year long career to a recliner chair and died an unhappy man?   That story is all too common and totally unnecessary.  Take  it from this 75 year old retired guy who is busier and happier than at any other time of my life.

At some point all of us retire from our chosen profession or trade and you should know early on that retirement from a job does not mean retirement from life.  Frankly, retirement should mean new opportunities and exciting new experiences that serve to restore your old enthusiasm for life.  Retirement is not a sentence it is a destination and you can write your own ticket.

Often retirement is not by choice but by necessity.  In my case the need for a heart transplant made it a necessity, but so what?  While everyone knows they will retire few are ready for it.  Retirement is a drastic change in lifestyle, one in which you have to change some major habits and behaviors and learn new ones.

Prior to retirement I was a communications consultant who traveled a great deal. I absolutely loved mrunning through airportsy work.  I trained and coached executives, was a frequent keynote speaker at conventions and wrote extensively about communication.  My days started at 5 AM and often didn’t end until midnight.  I had a closet full of suits, ties and freshly pressed shirts and rarely wore anything else, there wasn’t time.

When I retired all of that came to a sudden and screeching halt and the shock was as intense as if I had been shot head first from a cannon into a brick wall target.  I was used to getting up and meeting with the captains of industry, but now in retirement I got up to Captain Crunch and an empty day.  I knew for a very long time, 12 years to be exact, that this day would come.  I had been told I would need a heart transplant and would get weaker and weaker until I got one.  The prediction came true in 2006.  Reluctantly I retired and late that year we moved from Eagan, Minnesota (a twin cities suburb) to Jacksonville, Florida because the Mayo clinic there had a great record of obtaining transplantable organs.

My first rescue from boredom came two months after I got a new heart from the very people who had saved my life, the Mayo Clinic.  One of my Mayo friends called to ask if I would like to write a blog (this one, Bob’s Newheart) and start a Facebook group with a focus on organ donation and transplantation (Organ Transplant Initiative).  This required some learning because I knew nothing about social media or blogging.  Both were in their infancy.  I dove headfirst into cyberspace and found it fascinating and fun because it called upon many of my old skills.

Manother booth shoty second rescuer was my wife Robin.  She ran two businesses out of our home one of them was
designing and making anodized aluminum jewelry.  She sold her colorful creations at art shows all over the south, and southeastern U.S.  In order to do that she not only needed a tent but the furnishings, too.  Items like display cases, necks for necklaces, pedestals, pictures and frames, and other items used to display her work are necessities and can be expensive.  She knew I had an interest in woodwork so she asked if I’d like to build some of those things.

“Oh fun,” was my first thought, but I had few tools.  Slowly and with great deliberation I built a woodworking shop and began to build what she needed to furnish her booth.  It became a never ending job because as styles and tastes changed so did the need for new and different furnishings.

That takes me to today.  This blog, Bob’s Newheart, is my 222nd since November 3, 2007 and the Facebook group, Organ Transplant Initiative (OTI) now has nearly 4,000 members.  I have branched out in the woodworking department as well and have built a number of items for gifts for friends and family.  When I am not at my keyboard I am In my shop and have found that I am at least as busy now as I was when working and even happier.

So I got lucky, I stumbled into avocations that interested me and kept me busy to the point where I don’t miss the job from which I retired at all.  Now…what should you do?  How do you keep your mind and body active and engaged and avoid all the fears every spouse or partner has about retirement?  How do you avoid becoming a couch potato,couch potato 2 the stereotypical old person who sits in front of the TV all day eating unhealthy food and feeling sorry for him (her) self?  It’s really pretty easy and I can sum it up in one word –planning, but you have to do it now!  Check out this link. “http://health.howstuffworks.com/wellness/aging/retirement/10-tips-for-adjusting-to-retirement.htm

Whether you retire through necessity or choice you will retire and, as I said earlier, it can be a major shock to the system. Going from working a full-time job to having nowhere specific that you “have” to be each day may sound wonderful but it doesn’t always work out that way.  Some retired people feel bored and unproductive and when that happens, the days can seem endlessly long and empty. It doesn’t have to be that way.

Options for Action

Teaching

senior citizen teacherHave you considered teaching?  Even if that wasn’t your profession, it’s still something that you can do when you retire.  Teaching others what you’ve learned in the years spent in your chosen trade or profession can be very rewarding and some colleges and technical schools like to employ people with real-world experience.  You will also find that some companies employ speakers to share their knowledge and often those engagements result in contracts for more speeches or even training sessions.

 Speaking and/or Training

Speaking and training could be a paying gig, or you could do it simply for the joy of helping others.  One organization that might be of help is SCORE, the Service Corps of Retired Executives. SCORE bills itself as “counselors to America’s small business.”   Volunteers with the organization mentor small business owners, provide counseling, create and lead workshops, and write articles.

Move to an exotic location

I have a friend and former boss, Rick Lewis, who retired big time.  He moved to Cotacachi, Ecuador.
He sold almost all his earthly possessions and took with him only what he could carry, which wasn’t muc13654641373_736dfa7d31_nh.  He lives in the shadow of some beautiful mountains.  He walks everywhere, has lost a some extra pounds, buys food at open air markets at wonderfully low prices, has a much healthier diet, writes blogs about his experience and started a company that will help South American women be more independent.  He travels extensively and is enjoying life to the fullest and  while he has access to all the modern conveniences he uses few other than his computer and cell phone.

Go Back to School

I am convinced that to really enjoy your retirement years you must keep your brain actively engaged and what better for that than the learning environment.  Taking classes ins something that interests you can keep your mind razor sharp but even more importantly it could give you the opportunity to learn more about a lifelong passion, or the start of aSenior studentnother career.  Maybe you wanted to play a musical instrument or learn woodwork or how to write a book…the possibilities are endless.

Best of all…you can go to school again at little or no cost.  There are grants and scholarships available y for senior citizens to attend college but often you don’t even need them.  Some colleges, universities and trade schools provide tuition waivers or discounts for seniors.

And…you can always audit a class, if you have no interest in getting a degree.   Auditing simply means that you attend and participate in the classes, but don’t take exams or receive a grade or credit for taking the class.  Check with the college or university of your choice.  You likely will find several Audit opportunities.

Hobbies

ow about a hobby? Yeah, I know everyone who counsels retirees says the same thing, “Get a hobby,” but it is good advice.  When I was a kid I used to play the harmonica.  At age 70 I took it up again.  Robin is already an accomplished musician and we often practice together.  Better yet, we are now involved in a once a week local jam session and my hobby has morphed into ownership of 15 harmonicas.

If you are at a loss as to what kind of hobby suits you, don’t give up. Keep looking.  Hobby and craft stores conduct free or inexpensive classes in knitting, scrapbooking, leatherwork, jewelry making and more.  You’ll also fin
harmonica collectiond that places like Home Depot and Lowes have classes in carpentry and other woodwork skills along with instruction on gardening.  Stores that sell kitchenware often have cooking classes.  There’s no end to what you can learn, but you have to look.  . Maybe you don’t want to learn how to do anything, but you’re interested in starting a collection. Whether you want to collect autographs or antique dolls, there are plenty of online groups and forums dedicated to your new hobby. Some of them meet in person or even hold conventions. No matter what your interest, you can find others out there with whom to discuss it.

Ok..you don’t want to take classes, free or not,  you just want a hobby that’s fun.  How about starting a collection?  As a youngster I always carried a pocket knife, they can come in very handy for a whole lot of reasons.  I remember, too, seeing a movie starring Allan Ladd called, “The Iron Mistress.”  It was about Jim Bowie of frontier and Alamo fame and how he developed the Bowie Knife.  Ever since then I wanted one of them.  At age 72 I started a knife collection (you can get some very nice knives at a very low cost through Amazon and other internet sites).  Today I have seven fixed blade knives (variations on the Bowie theme) and ten folding pocket knives.

Volunteer

aliensThen there is Volunteering.    God knows we need volunteers in almost any pursuit.  The University of Michigan conducted a study of retirees who were active volunteers and found that 40 percent were more likely to be alive at the end of the study than people who did not volunteer. [Wheeler]. If that isnt’ reason to consider volunteering for something I don’t know what is and — it keeps you moving and engaged.

Other volunteer opportunities include, helping out at local schools, animal shelters, museums and churches.  And…the area in which you can likely land a volunteer job right way…HealthCare.  Hospitals and nursing homes always need volunteers and you could be in on the ground floor of making a significant contribution  in those two areas alone.

I know, too, that there are organizations that specifically recruit senior citizens, such as Senior Corps where the Foster Grandparents program matches exceptional children with adults ages 60 and older who mentor them and help them with reading and schoolwork.  Talk about a rewarding experience…that one alone could give your ego a much needed boost.

Travel

If you like to travel and see the country consider an RV, the come in a wide variety of shapes and sizes from trailers to bus2012 traceres and in every price range.  We own a 30 foot travel trailer so when we go to art shows (we do about 20 a year) we bring our home and our dogs with us.  Of course that means you have to do some serious research into how you want to use your RV.  This can be a major purchase and it pays to take your time and thoroughly investigate every angle.  We love our RV and are old hands at it now and can highly recommend it if you like to travel, meet new people and live, “on the road.”

Become an employee again

Yep…that’s another term for work.  Maybe you need it so keep the door open to returning to the world of the retired but employed ranks.  It doesn’t have to be a full time job and it doesn’t have to be as a Wal Mart Greeter, although there is nothing wrong with that.  I have a 75 year old friend who works part time at a Menards store.  Menards is a Home Depot type story in the Midwest and they employ a good many senior citizens as do many companies. Here are some ideas on what you could do:

  • Hire out as a consultant on based on the expertise you gained while employed
  • Do research in your field for colleges and universities
  • Check city, county, state and federal government listings for openings that might appeal to you
  • Maybe you only want money for special occasions if so try seasonal work.  Companies are always seeking help during holiday seasons.
  • Entertainment venues like ball parks and theaters may need ushers to lead patrons to their seats
  • Customer service reps.  You could get a job answering the phone, working in sales or returns or even store security.
  • If you are handy with tools and can fix things around your home perhaps you can hire out as a handyman or woman on specific projects.
  • Tutor a student.  The money may not be great but there is some to be made tutoring both college and high school students.
  • Make things at home and sell them on line through Craigs list or by opening your own website.
  • Home care.  If you have some medical or therapy credentials you might quality to help care for either an adult or a child in their home
  • If you have bookkeeping or accounting skills many a small business could use you and chances are you could work from home.
  • Clerical work. If you can type and if you are computer literate you might get a part or full time job doing just that.

Essential skills.  

computerIt’s the 21st century and almost any job you take on is going to require computer literacy.  If you don’t know how to type it would be to your advantage to take a typing class and to learn basic word processing and even PowerPoint.

There is virtually no job anywhere today that is not going to require some computer skills so if volunteering or becoming employed again is an option you want to consider then by all means brush up on your computer and typing skills.

Mental and Physical Health

So far we’ve talked about what you can do to keep from being bored and to feel as though you have some value.  What’s missing from this blog, though, is how you take care of your health.  That issue beings with a word few like — Exercise.

No matter what the state of your health you must find ways to be active and to exercise.  Health expenses can be not only a huge financial burden, they can destroy your quality of life.  There are two kinds of exercise I recommend. One is mental and the other is physical.   You should read, research and write as often as possible and social media offers incredible opportunity to do all of that. Even games of solitaire or crossword puzzles can keep you mentally engaged and fit.

When it comes to physical exercise it is important to do what you can when you can.  A brisk walk every
day can do wonders for you and if that sounds boring, try Mall walking where at least you will see other people and iPeople walkingnteresting displays in stores and in the hallways.  If you play golf or tennis all the better, but any kind of activity that will exercise your muscles and elevate your heartbeat and respiration is good for you.

Remember above all else that you have great value.  Your years of service have given you invaluable experience from which others can learn.  Studies indicate that the years beyond midlife are one of life’s most creative, innovative and entrepreneurial periods for many and that us older people can be incredibly creative when given the opportunity. Check out this link for more information.

http://www.usatoday.com/story/money/personalfinance/2013/10/22/preparing-mentally-retirement/2885187/

When I was working I believed I had a mission and a purpose for being and that feeling was reinforced daily by clients who continued to hire me for my advice.  My fear was that upon retirement I would no longer have a purpose and that I would become irrelevant.  Well, that’s possible if you only think of yourself in terms of what you used to do, but what if you change the paradigm?  For example, I am no longer a communication consultant. I am an advocate for organ donation and transplantation and that has become my new relevancy, my new purpose and my new identity.  More and more there are people who know me for my new purpose and know nothing about what I used to be and do.  That’s an old life and frankly, I don’t miss it at all.

Relationships
Finally, the most important consideration of all, your relationship with your spouse or significant other.  Many of us who have worked outside the home for an entire lifetime are a pain in the butt when we are home all the time.  Our life partners aren’t used to it either and both have to make a concerted effort to work on strengthening this new retured couplerelationship.  In my case Robin has her business and I do what I can to help her, but otherwise am pretty much involved in my own activities.  We enjoy each other a great deal and often plan outings or dates when we can spend time together talking about and doing things unrelated to business or hobbies.

Retirement can be very rewarding, if you plan for it, but if you view retirement as the end of life you will be in for a miserable time because it can be the beginning and it should be.  It’s all in your attitude.  You can choose to quit or you can choose to explore new frontiers.  I am not a quitter and I’ll be most of you aren’t either and if that’s the case…get out and find those new frontiers.

Last Resorts

And….if all else fails try some of these:

  • Make a bucket list and start doing all the things on it
  • Make bird houses
  • Become a master gardener
  • Become an expert Starcraft player
  • Sail, backpack, walk[1] or cycle around the world[2]
  • Enter ham radio competitions (contact every state, etc.)
  • Read trashy novels
  • Have a lot of sex while your body is still in full working order
  • Fix up cars or motorcycles
  • Build a boat
  • Build a log cabin
  • Research your family tree
  • Watch birds
  • Amateur astronomy
  • Finally get adequate sleep
  • Become as healthy as possible
  • Save the world
  • Rebuild civilization from scratch
  • Live very well without money for a year
  • Go to the top of a high building and throw away $100.000
  • Burn $100.000 on a public place
  • Spend the last day in the job speaking all the truth to clients

You can find more here http://earlyretirementextreme.com/wiki/index.php?title=Long_list_of_things_to_do_when_you_retire

I always try to practice what I preach so let me recap where I am today at age 75 after a career that I absolutely loved.  My life has changed completely and I love every minute of it.  I am not only not bored, I don’t have time to be bored.  I am having too much fun doing the following:

  1. I took up the harmonica after a 60 year hiatus from it.  Now I own 15 of them and once a week my the Fig Newtonswife and I play in an old time music jam session.  Robin plays several instruments and often we spend an evening playing together.
  2. Woodwork. I’ve always loved working with wood but never had time.  Now I make fixtures and furnishings for Robin’s Art show booth.  I make jewelry boxes for friends and family, front with keyboard and buttonsand recently completed making a CD storage unit that looks like an accordion.
  3. Social media.  As you know I started and run Facebook’s nearly 4,000 member Organ Transplant Initiative group (OTI) and recently wrote my 223rd blog on Bob’s Newheart for WordPress.
  4. I am in the process of writing two books.  One is just a look at life from my earliest memories until now .  So far I have written about 145 pages, and that only got me to when I was 23 years old.  There’s a lot more to write.  The other book is fiction, it is about the first Hispanic President of the United States and the challenges he faces.  It’s part SCI FI, part  James Bond type action and heavy on political intrigue.
  5. I do the grocery shopping, some cooking a little housework and very little sitting.
  6. We travel the country going to art shows in which Robin sells he Jewelry creations.

I think you can tell, by that list that at age 75 I am a very busy guy.  Rarely do I sit still for long.  I absolutely refuse to be bored.  I think I lead a rather exciting life and I’m enjoying every moment of it.  You can do the same.  Retirement can be like being born again because it is what you make it.

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My new hat April 10 2014Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

 


curt greenIntroduction by Bob Aronson

Story by Curt Green

 inspirational quoteIntroduction

This is the first in a series of blogs about people with the Helen Keller, Jesse Owens spirit.  Let me explain.  Some people inspire us to soar to great heights because they did.  Some people see adversity as a speed bump and confidently roll over it.  Some people are “unsinkable” and bounce back no matter what.  This is the first in a series of blogs about ordinary people who do just that.

I was inspired to write these blogs by two of my personal heroes, Helen Keller and Jesse Owens.  If you are not familiar with these names here are some very brief bios.

Helen Keller

helen kellerHelen would not be bound by conditions. She became deaf and blind before she turned two as the result of scarlet fever.  She learned to read (in several languages) and even speak, eventually graduating with honors from Radcliffe College in 1904. It is remarkable that she accomplished any of this in an age when few women attended college and the disabled were often hidden and spoken of only in hushed tones.

 Keller’s many other achievements are impressive by any standard:

hellen Keller with President Eisenhower she authored 13 books, wrote countless articles, and devoted her life to social reform. She lectured on behalf of disabled people everywhere. She also helped start several foundations that continue to improve the lives of the deaf and blind around the world.  She is remembered for a great many pieces of wisdom but this is my personal favorite:

“Although the world is full of suffering, it is full also of the overcoming of it. My optimism, then, does not rest on the absence of evil, but on a glad belief in the preponderance of good and a willing effort always to cooperate with the good, that it may prevail.” – Helen Keller

Jesse Owens

Jesse owens runningJesse was an athlete, a black athlete and a very special one. His performance on a spring afternoon in 1936 was beyond unbelievable.  In 45 minutes, he established three world records and tied another, but what made the accomplishment special, extra special is that he did it in Nazi Germany before a regime of white supremacists.    

Jesse Owen’s story transcended athletics. Berlin, on the verge of World War II, was Jesse Owensbristling with Nazism, red-and-black swastikas were flying everywhere while Adolf Hitler was busy haranguing about the “unbeatable master race” of blond, blue eyed Aryans. 

When Owens finished competing, the African-American son of a sharecropper and the grandson of slaves had single-handedly crushed Hitler’s myth of Aryan supremacy.  On the sacred soil of the Nazi Fatherland he humiliated the so-called master race by winning four, count ‘em, four gold medals.  Hitler, left the stadium. 

I never met Helen Keller but I had the distinct pleasure and honor of meeting and interviewing Jesse Owens when I was a young radio announcer in 1961.  I got his autograph for my brother who treasures it to this day.  Owens lived by a very simple motto, “One chance is all you need!”

Our Keller/Owens courage series will focus on people, just ordinary people who have managed to survive and win under amazingly adverse circumstances

Curt Green.

Ocurt greenur first story is about Curt Green.  I met Curt as the result of a long and thoughtful comment he made about one of my Bob’s Newheart blogs.  His words  were insightful, compelling and inspirational.  Those same terms describe his story, one that truly is in the Keller/Owens spirit .

  

Whenever I find myself overwhelmed, depressed or in need of a motivational kick in the pants, I think about Curt’s incredible journey, his undying faith and his commitment to “Paying it forward.”

 Curt Green is a very special man and I am honored to call him a friend.  Thank you Curt for  taking the time to write your story.  It will serve to inspire others for a very long time.   

The Sandwich

In September of 2005 at age 44 I was working for Schwans as a route manager (The Schwan Food Company is a multi-billion dollar privately owned company with 15,000 employees.  They sell frozen foods from home delivery trucks, in grocery store freezers, by mail, and to the food service industry). My work days where long and it was usually after 11 P.M. when I got home feeling both tired and hungry.   On this particular evening I didn’t feel like cooking so before I went to bed I p b and j sandwichhad a plain old peanut butter and jelly sandwich.  While that may sound pretty bland and harmless it turned out to be anything, but. To say it didn’t’ sit well would be putting it mildly.  It wasn’t long after I ate it that something in that sandwich triggered a gall bladder attack.  Despite experiencing significant discomfort I managed to find my way to the Emergency Room in a Fairmont, Minnesota hospital.

On arrival they took X-rays and decided I needed care they could not provide so they wheeled me into an ambulance and sent me to the famed Mayo Clinic in Rochester, Minnesota.  The highway the ambulance used to get me to Rochester was not in good Mayo clinic Rochester, Minnesota gonda bldngcondition so the 120 mile ride which took about two hours was rough and uncomfortable. Finally, though, at 5 AM the next morning I was admitted to Mayo’s St. Mary’s hospital.

The Problem

The Mayo doctors wasted no time and after some tests to determine the severity of my condition and to locate the gall stones, they did an ERCP (Endoscopic retrograde cholangiopancreatography). ERCP is an x-ray exam of the bile ducts that is aided by a video endoscope which allows the physician to view the inside of the stomach and duodenum, and inject dyes that can be seen on x-rays.   The lighted probe that goes down your throat has a tiny claw at the end that allows them to open the passageway and let any gall stones pass.

Complications

It all seemed to go well but there was a complication.  The surgeons didn’t know until later that my intestine was punctured during the procedure and that’s where my long journey began — instead of a normal recovery from a routine surgery my condition worsened.  I spiked a fever and kept getting sicker, so sick that my kidneys shut down.  That’s when they had to take drastic measures to save my life.  What started as a simple gall stone attack had now turned into a life threatening situation.  I can only thank God I was at Mayo where they are well equipped to handle such an emergency.  It was going to be 207 days before I was released from the hospital.  That simple peanut butter and jelly sandwich changed my life and almost ended it.

In order to keep me comfortable yet treat me effectively and remove the infection physicians put me in a drug induced Patient in ICucoma which lasted 21 days into October.  While comatose they opened my abdominal cavity and washed out handfuls of dead, blackened fat. This procedure helps to ensure the removal of the infections, something they had to do seven times over the course of the month.  Naturally I remember none of it.  As part of my recovery the Mayo Doctors then placed me in a special bed that would rock me gently back and forth so that no fluids would settle in my body, but even with that extraordinary step my hands and head swelled to almost twice their normal size.

When I finally awakened I had over 12 tubes coming out of my stomach which were not only for drainage but also for feeding and other healing purposes.  In the middle of my stomach there was a very large 9 inch diameter hernia.  For three months I was unable to drink anything and could not eat for six months.

Studies indicate that being immobilized for long periods has a very negative effect.  It is estimated that we can lose 10 to 20 percent of our muscle strength per week in bed so upon awakening from the coma I found that the combination of immobilization and the surgery left me so weak walking was almost impossible. Because of all the drainage and feeding tubes, I was forced to lie on my back for the first 2 months. Three times a week, they would wheel me down to the dialysis unit to undergo the cleansing process.  It was their hope that my kidneys would be able to bounce back from the trauma, but as time went on and despite the best efforts of the Mayo team, the possibility of this happening decreased. We still had a long, long way to go before I would walk out of the hospital and return to anything that even remotely resembled a normal life.

Probably the scariest time for me was in early March of 06, I had a blood clot pass through my lungs and I could not catch my breath. Not being able to breathe is very frightening, I was gasping for air while the medical team worked feverishly to get it under control.  It took a couple of hours, but finally they were able to transfer me to an Intensive Care Unit (ICU).  At the same time I had a skin graft done for my hernia that developed during the two weeks following the initial surgery.

.
Yale, South Dakota jpegI was in the hospital for 207 days or 7 months when I was finally discharged on April 23, 2006. Weak, and unable to care for myself I went to Yale, South Dakota to live with my parents and try to recover. They estimate that for every day you are in the hospital, it takes 3 days to recover.

.I had a long road ahead, my kidneys were still not functioning properly and never would. I started dialysis in Huron, S.D and made 3 trips a week to the dialysis unit there on Tuesday, Thursday, and Saturday.

Dialysis

Dialysis is a procedure of cleaning the blood and taking out excess fluids since the kidney cannot produce urine. dialysisOnce connected to the machine it takes about four and a half hours for the cleansing process to be completed.  The procedure leaves you drained of energy so for all practical purposes it results in a lost day.

If you are on dialysis your liquid intake is very limited and almost impossible to follow. It is recommended that you consume less than 50 ounces between treatments. I had great difficulty with that limitation so they would have to remove 10 to 12 pounds of fluid with each treatment and that’s a problem because too much liquid represents a danger to the heart.

I was also limited in what I could eat since the kidney works at balancing potassium and phosphorous in the body. Too much potassium could cause a heart attack, therefore, it was recommended that I not eat potatoes, tomato products, or any dairy products.

From May of 2006 to October of 2007, I went to Avera McKennan hospital in Sioux Falls, South Dakota ten times because the vein in my arm kept narrowing and the blood could not return to it causing extreme swelling.  With the exception of being admitted to the hospital just once all of the trips involved outpatient surgery to correct the swelling.  Finally they put in a stent which solved the problem.

In March of 2007 I saw Dr. Fred Harris in Sioux Falls who did a masterful job of fixing the hernia in my stomach. Although the surgery was a success, infection kept me in the hospital for two weeks. I also had a new dialysis catheter put in, a fistula (the Medline Encyclopedia defines fistula as an abnormal connection between an organ, vessel, or intestine and another structure). In my case the fistula was combining a vein and an artery in my arm to allow the dialysis needle to enter and function properly.  Without the fistula the vein would collapse.

Kidney Transplant

During this time it was a matter of recovery and being evaluated for a kidney transplant so I could be placed on the national transplant list. I had decided to have the transplant done in Sioux Falls where I lived only because it was close.  While I was excited about getting on the list I was not optimistic about getting an organ.  The fact is, I really had little hope of getting a kidney because my blood type, which is O, is quite common and that means kidneys of that type are in greatest demand. The doctors told me that it would be at least a 5 year wait.  When I asked what the average life span of someone on dialysis, they said 5 years. So, I just resigned myself to thinking that dialysis would be a part of my life until I die.

Kidney transplantThen in 2008 a miracle happened.  A friend of the family came forward in January and offered to donate a kidney. This is so much better than a kidney from a deceased patient because they last much longer.

My donor Joey Bich (pronounced Bish) wanted to have it done at Mayo In Rochester so that’s where I went for my evaluation in June.  Finally I knew beyond a doubt that the transplant would be a reality, it was really going to happen.  Dialysis was going to end and I had a shot at a normal life again.  And…I was very happy with the decision to go to Mayo because of their experience.  They average a transplant every day.   Joey and I were approved and the transplant date of July 25, 2008 was set.

Remnants of that black cloud that followed me around for moths after the PB and J sandwich still appeared, though.  It seems as though when it comes to things medical issues, complications are a fact of life for me.  While the transplant was successful, it was not without a hitch.  What is normally a two-hour surgical procedure that some surgeons are now calling “Routine surgery” was for me an 11 hour ordeal because there was so much scar tissue on the right side of my abdomen.  As a result they had to put the kidney on the left side. My doctor told me in confidence later that he was about ready to give up, obviously he didn’t, but it still wasn’t’ over.  A day later they had to open me up again because there was a leak in one of my bowels. They fixed it but my recovery was delayed by about a month. I left the hospital on August 11 and had to stay in a motel till September 10 for checkups. Then I was free to go home.

Good news…It looks like the bad news stopped.  Since being discharged for the final time my future has been wide open and bright.  Now I can drink as much as I want and eat what I like without fear or worry. I can travel for longer than a day and am free now to live like a normal human again, just as I did before that fateful PB and J sandwich.  I have a life again and all because someone was brave, kind and generous enough to give up one of his kidneys.  Thank you Joey…thank you.

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Curt was featured in a news report that you can watch on YouTube.  It is called “Three year detour” and there is the link. http://www.youtube.com/watch?v=ZAVFh2vcG2Y

If you would like Curt to speak to your group, you can contact him here. curtgreenspeaks@yahoo.com

About Curt Green. 

He describes his life this way:

“Right now, I live in Sioux City, Iowa and work a couple of part-time jobs. My hobby is being a baseball fan but my main focus is doing anything I can to promote organ donation. I speak at high schools maybe 5 to 10 times a year, visit my local dialysis unit to bring hope to those still hooked to a machine, and am involved with a new non-profit group called Doug’s Donors who mission is to assist those on dialysis in getting on a transplant list.

I have 3 daughters and 2 sons with a daughter in North Carolina, my oldest son in Minnesota, my next son and youngest daughter in Sioux City with me and my other daughter studying to be a Vet Tech in Rochester, MN

Curt Green is a very honest and straightforward man.  When I asked him about his faith and how prayer helped him in his recovery he said, “One thing I learned is that when I was sick and hurting, I could not focus enough to pray. That is when I learned the importance of people praying for me.  I really so believe this is the cause of my recovery. Now when in church, I take it very seriously when prayers for others are requested.”

My faith plays a big part in my life as it guides and directs me on how I live. Not perfectly but progressively. There is a verse in the Bible that I feel describes my life today. It is Joel 2:25. “I will repay you for the years the locusts have eaten…” These were God’s words to the Jews through the prophet Joel. God had punished them for their disobedience and yet, in the midst of it, he offers his grace. God has been showing me his grace all along but now I can see it. He has restored unto me the years the locusts have eaten and continues to do so.

One verse that I have on my white board is Romans 12:12 “ Be joyful in hope, patient in affliction, faithful in prayer.”  Also, my sister put this saying on the board, “Everything will be alright in the end, and if it is not alright, it’s not the end.”  That really spoke to me and I still tear up when I read it.”

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My new hat April 10 2014Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.


Introduction by Bob Aronson

(Attribution is given with each quote)

Scartoonometimes the saying the right thing in the right tone at the right time can have a powerful impact, but often search as we may, we cannot find the right words within us.  That is when the search area must be expanded to those who may have had similar experiences, but also the time to weigh and articulate their thoughts — thoughts that clearly express your feelings.  While ironic, it is also a fact of life that often those most quoted are those who quote most often.  

There is no harm done in quoting others to help you make your point,.  There is only good to be found when the well considered words of another help you to find peace and give comfort.  It is in that spirit that we offer this collection of inspirational quotes about Kindness, Courage and Compassion.  They are among my favorites.  I hope you like them, too.

 

Be kind, for everyone you meet is fighting a harder battle.”
― Plato

 

“Dare to Be

When a new day begins, dare to smile gratefully.

When there is darkness, dare to be the first to shine a light.

When there is injustice, dare to be the first to condemn it.

When something seems difficult, dare to do it anyway.

When life seems to beat you down, dare to fight back.

When there seems to be no hope, dare to find some.

When you’re feeling tired, dare to keep going.

When times are tough, dare to be tougher.Dare to be different

When love hurts you, dare to love again.

When someone is hurting, dare to help them heal.

When another is lost, dare to help them find the way.

When a friend falls, dare to be the first to extend a hand.

When you cross paths with another, dare to make them smile.

When you feel great, dare to help someone else feel great too.

When the day has ended, dare to feel as you’ve done your best.

Dare to be the best you can –At all times, Dare to be!”

― Steve MaraboliLife, the Truth, and Being Free

 

 “If we have no peace, it is because we have forgotten that we belong to each other.” ― Mother Teresa

 

giving“No one has ever become poor by giving.” ― Anne Frankdiary of Anne Frank

 

 Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.” ― Dalai Lama XIVThe Art of Happiness

 

“for there is nothing heavier than compassion. Not even one’s own pain weighs so heavy as the pain one feels with someone, for someone, a pain intensified by the imagination and prolonged by a hundred echoes.” ― Milan KunderaThe Unbearable Lightness of Being

 

“In the end, though, maybe we must all give up trying to pay back the people in this world who sustain our lives. In the end, maybe it’s wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices.”  ― Elizabeth GilbertEat, Pray, Love: One Woman’s Search for Everything Across Italy, India and Indonesia

 

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” ― Leo Buscaglia

 

“Remember, if you ever need a helping hand, it’s at the end of your arm, as you get older, remember you have another hand: The first is to help yourself, the second is to help others.” ― Sam Levenson

 

 

Courage is not the absence of fear, but rather the judgement that
something else is more important than fear.”   Ambrose Redmoon

 

“A ship is safe in harbor, but that’s not what ships are for.”  William G.T. Shedd

 

“Life shrinks or expands in proportion to one’s courage.”   Anaïs Nin

 

“Courage is resistance to fear, mastery of fear – not absence of fear.”   Mark Twain

 

“Freedom lies in being bold.”   Robert Frost

 

“For me, I am driven by two main philosophies: know more today about the world than I knew yesterday and lessen the suffering of others. You’d be surprised how far that gets you.”  ― Neil deGrasse Tyson

 

“We must learn to regard people less in the light of what they do or omit to do, and more in the light of what they suffer.” ― Dietrich BonhoefferLetters and Papers from Prison

 

 “The lotus is the most beautiful flower, whose petals open one by one. But it will only grow in the mud. In order to grow and gain wisdom, first you must have the mud — the obstacles of life and its suffering. … The mud speaks of the common ground that humans share, no matterlotus what our stations in life. … Whether we have it all or we have nothing, we are all faced with the same obstacles: sadness, loss, illness, dying and death. If we are to strive as human beings to gain more wisdom, more kindness and more compassion, we must have the intention to grow as a lotus and open each petal one by one. ”  ― Goldie Hawn

 

“How much can we ever know about the love and pain in another heart? How much can we hope to understand those who have suffered deeper anguish, greater deprivation, and more crushing disappointments than we ourselves have known?” ― Orhan PamukSnow

 

“When I give food to the poor, they call me a saint. When I ask why the poor have no food, they call me a communist.” ― Hélder CâmaraDom Helder Camara: Essential Writings

 

 “Some people think only intellect counts: knowing how to solve problems, knowing how to get by, knowing how to identify an advantage and seize it. But the functions of intellect are insufficient without courage, love, friendship, compassion, and empathy.” ― Dean Koontz

 

“True compassion is more than flinging a coin to a beggar; it comes to see that an edifice which produces beggars needs restructuring. ” ― Martin Luther King Jr.

 

“Love is not patronizing and charity isn’t about pity, it is about love. Charity and love are the same — with charity you give love, so don’t just give money but reach out your hand instead.”  ― Mother Teresa

 

“You have not lived today until you have done something for someone who can never repay you.”  ― John Bunyan

 

Let us not underestimate how hard it is to be compassionate. Compassion is hard because it requires the inner disposition to go with others to place where they are weak, vulnerable, lonely, and broken. But this is not our spontaneous response to suffering. What we desire most is to do away with suffering by fleeing from it or finding a quick cure for it.” ― Henri J.M. Nouwen

 

“The thought manifests the word

The word manifests the deed;

The deed develops into habit;
And habit hardens into character;
So watch the thought and its ways with care,
And let them spring forth from love
Born out of compassion for all beings.
As the shadow follows the body, as we think, so we become.”
― Juan Mascaró

 

  Do not oppress the widow, the fatherless, the sojourner,  or the poor, and  let none of you devise evil against another in your heart.  echariah 7:10

 

“The only time you look in your neighbor’s bowl is to make sure that they have enough. You don’t look in your neighbor’s bowl to see if you have as much as them.”  ― Louis C.K.

 

“Protect your enthusiasm from the negativity and fear of others. Never decide to do nothing just because you can only do little. Do what you can. You would be surprised at what “little” acts have done for our world.”  ― Steve Maraboli

 

When asked what was the greatest commandment, Jesus responded that it is to love God with all our heart, mind and strength. But He added that the second commandment “is like it: ‘Love your neighbor as yourself’” (Matthew 22:34-40). The Pharisee had asked Him which single command of God is the greatest, but Jesus provided two, stating not only what we are to do, but also how to do it. To love our neighbor as ourselves is the natural result of our loving devotion toward God.

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“The nature of compassion isn’t coming to terms with your own suffering and applying it to others: It’s knowing that other folks around you suffer and, no matter what happens to you, no matter how lucky or unlucky you are, they keep suffering. And if you can do something about that, then you do it, and you do it without whining or waving your own fuckin’ cross for the world to see. You do it because it’s the right thing to do.”  ― John ConnollyDark Hollow

 

“Be kind to people whether they deserve your kindness or not. If your kindness reaches the deserving good for you if your kindness reaches the undeserving take joy in your compassion.”
― James FadimanEssential Sufism

 

“[The] insistence on the absolutely indiscriminate nature of compassion within the Kingdom is the dominant perspective of almost all of Jesus’ teaching.
What is indiscriminate compassion? ‘Take a look at a rose. Is is possible for the rose to say, “I’ll compassionoffer my fragrance to good people and withhold it from bad people”? Or can you imagine a lamp that withholds its rays from a wicked person who seeks to walk in its light? It could do that only be ceasing to be a lamp. And observe how helplessly and indiscriminately a tree gives its shade to everyone, good and bad, young and old, high and low; to animals and humans and every living creature — even to the one who seeks to cut it down. This is the first quality of compassion — its indiscriminate character.’ (Anthony DeMello, The Way to Love)…

 

 

What makes the Kingdom come is heartfelt compassion: a way of tenderness that knows no frontiers, no labels, no compartmentalizing, and no sectarian divisions.” ― Brennan ManningAbba’s Child: The Cry of the Heart for Intimate Belonging

 

“These things will destroy the human race: politics without principle, progress without compassion, wealth without work, learning without silence, religion without fearlessness, and worship without awareness.”  ― Anthony de Mello

 

“When morality comes up against profit, it is seldom that profit loses.” ― Shirley Chisholm

 

Enlightened leadership is spiritual if we understand spirituality not as some kind of religiou
Leaderships dogma or ideology but as the domain of awareness where we experience values like truth, goodness, beauty, love and compassion, and also intuition, creativity, insight and focused attention. Deepak Chopra

 

Never apologize for showing feeling, my friend. Remember that when you do so, you apologize for truth.   Benjamin Disraeli, in Contarini Fleming :

 

A good character is the best tombstone. Those who loved you and were helped by you will remember you when forget-me-nots have withered. Carve your name on hearts, not on marble. ~Charles H. Spurgeon

 

Never miss an opportunity to make others happy, even if you have to leave them alone in order to do it. ~Author Unknown

 

Don’t wait for people to be friendly, show them how. ~Author Unknown

 

You cannot do a kindness too soon, for you never know how soon it will be too late. ~Ralph Waldo Emerson

 

There’s a lot of not caring that goes under the name of minding your own business. ~Robert Brault, rbrault.blogspot.com

 

The only people with whom you should try to get even are those who have helped you. ~John E. Southard


bob magic kingdom
Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.


dialysis scam cartoonIntroduction by Bob Aronson

Blog by James Myers

 James Myers lives in Indiana and is a member of Facebook’s Organ Transplant Initiative (OTI).  He suffers from End Stage Renal Disease (ESRD) or Kidney failure.  Jim is on dialysis and has been active locally and nationally in the effort to end the 36 month limit on Medicare coverage of anti-rejection drugs.  He is one of the 100,000 kidney patients on the national transplant wjames myersaiting list. Jim is a frequent thoughtful and valuable contributor to the discussions on OTI and we thank him profusely for writing the following blog. 

 

 

ARE DIALYSIS PATIENTS NOT SEEKING KIDNEY TRANSPLANTS BECAUSE ANTI-REJECTION DRUGS COST TOO MUCH?

 By James Myers

I guess the best place to start a blog about kidney disease is to explain what the kidneys do.  This graphic pretty much explains it.What do kidney's do graphic

Everyone is born with two kidneys, but we can survive with one if necessary.  Sometimes called “The Silent Epidemic” Kidney disease affects millions and threatens even more.   600,000 American citizens suffer from ESRD (End Stage Renal Disease) and kidney failure which leaves you with 3 choices: (1) dialysis; (2) a kidney transplant or (3) death. Kidney transplant recipients must take immunosuppressive drugs for the life of their transplant, or they risk losing their new organ. Medicare pays for the transplant and immunosuppressive drugs for 36

medicare logo 2months post-transplant unless beneficiary is Medicare-aged (65) or Medicare-disabled.   The Medicare (ESRD) program pays for dialysis or transplantation for over 600,000 kidney disease patients every year, regardless of age, and has saved millions of lives in the four decades since its enactment. After a transplant, recipients must take immunosuppressive drugs every day for the  rest of his or her life.   Failure to do so significantly increases the risk of organ rejection and therefore, death.   If you are covered by Medicare due to either age or disability and have a transplant your anti-rejection drugs are covered for life.kidney transplant  If you are not covered due to age or disability Medicare will still pay for your kidney transplant, but will only cover anti-rejection drugs for 36 months, then you are on your own.  this policy makes absolutely no sense because, ironically, Medicare will pay for a lifetime of dialysis which costs more and even more ironically, if you go into rejection because you can’t afford to buy the drugs that prevent it, Medicare will pay for another transplant and/or dialysis at costs that are many times that of the annual expense of immunosuppressant drugs.  This political slight of hand act not only wastes U.S. taxpayer dollars, it can actually cause death.

Here are some startling facts that make you wonder woman wired for carewhy congress refuses to make a common sense change.   When Medicare coverage ends after 36 months many transplant recipients have difficulty finding other coverage for their immunosuppressive drugs. Medicare spends around $90.000 per year for an individual who is on dialysis and $125,000 during the first year of a kidney transplant. However, after that first year the transplant patient’s drug costs plummet to $25,000 or a little over $2,000 a month.  Not many people have an easy time paying that bill but for the federal government it would be a cost saving measure to cover the drugs rather than pay for a new transplant or more dialysis.  Furthermore, extending mmunosuppressive  coverage beyond the 36-month post-transplant limit would improve outcomes and enable more kidney patients who lack adequate insurance to consider transplantation. Most transplant recipients also have a higher quality of life, and are more likely to return to work than dialysis patients, and if they return to work they again become taxpayers.

Currently, there is a bill pending in the U.S. senate (S. 323), “The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act,” would extend Medicare Part B coverage for kidney transplant recipients for the purpose of immunosuppressive drugs only. All other Medicare coverage would end 3U.s. senate6 months after the transplant. Beneficiaries would be responsible for the appropriate portion of the Part B premium, as well as applicable deductible and coinsurance requirements. For patients who have another form of health insurance, Medicare would be the secondary payer. The bill also requires that group health plans currently providing coverage of immunosuppressive drugs for kidney transplant recipients maintain this coverage.

There is a corresponding bill in the U.S. House of Representatives (H.R. 1428): Comprehensive Immunosuppressive Drug Coverage for Kidney pay for the good news cartoonTransplant Patients Act.   The Senate version of the bill has been passed out of committee.

Last week, I read a blog I found to be disturbing. Coupled with that, I received a note from one of my friends. The note and the blog indicated that people who were unable to age/disability qualify for Medicare were refusing transplants due to the high costs of the anti-rejection medications. According to Cameron Field and Kidney Buzz, of the 275,000 people who are on dialysis in the United States, only 93,000 chose to be listed on the US Kidney Transplant Waiting List. Two thirds of dialysis patients are not listed, while only one third had chosen to list.

Does the prospect of Medicare coverage for only 36 months and then the average monthly cost of approximately $2100/ month cause people to decline the transplant option? Of course, there may be others reasons to decline; it requires a surgery, the risk of infection, the risk of rejection even if you take the meds, the necessary follow up, and pain, but sources are now saying that it may be possible that up to 34% of dialysis patients are declining transplants due to the cost of anti-rejection meds.  They know they will die without the transplant but they have no choice.

The Dialysis Patient Citizens conducted a survey last year on this issue. 29% said they had other medical conditions. 26% said they were too old. 7% said they were overweight. 6% said their doctors didn’t recommend it. 5% said they were satisfied with dialysis. However, 6% cited financial reasons generally, 4% said they couldn’t afford the surgery, and 2.5% said they couldn’t afford the medications. 17% cited personal reasons. Who knows how many in that 17% didn’t want to disclose financial hardship. So according to the DPC’s data, between 13% and 30% aren’t on the list due to financial reasons.   Of the 13,000 transplants performed last year, 6,000 were from living donors, but there are some barriers to living donation that must be overcome, as well.

Nearly everyone knows that while we are born with two kidney’s we can live with just one, so many people choose to donate the second kidney tliving organ donorso a dying patient,.  While the recipients insurance pays the medical costs the donor is often left footing the bill for lost wages while hospitalized and travel to and from the transplant center.   Some states,but not all will provide reimbursement in the form of tax deductions, but nice as they are, they don’t put cash in the pocket of the donor.  The feds have a few grants available but they are grossly underfunded and so many have to foot the bill themselves.  That knowledge may prevent many from offering to be donors. The DPC estimates that cost to reimburse lost wages is about $6,000 for one surgery. When you look at in in terms of Medicare paying for the transplant surgery ($100,000) and for the cost of anti-rejection drugs ($24,000 a year), travel and lost wages for the donor would be a minimal expense and if available would likely increase the number of living donors.

So where do we stand?  If 30% of the people taking dialysis refuse to be listed due to the costs of transplant autoimmune medications, then we are talking about approximately 100,000 people who cannot afford a life-saving transplant.

Everyone on dialysis knows that life expectancy while on that machine is, on average, from 3-5 years. Life expectancy for a transplant, from a living donor is on average, 12 to 20 years, while a deceased donor kidney is somewhat less, 8 to 12 years. If you receive a kidney transplant before you are required to begin dialysis then you will live 10 to 15 years longer than if you stayed on dialysis.  So, even though a kidney transplant involves major surgery and requires some risk, in comparison it offers you a longer life.   Most patients who have been on dialysis before their transplant see an amazing difference in their quality of life.

There are two closely related issues here that can be resolved.by one simple action.  The Congress must pass and the President must sign the bill that would provide lifetime coverage of anti-rejection drugs.  It is the only logical, financially responsible and humane solution to a problem that has already caused untold misery and death.

If you find the current law absurd and a waste of money and want to see it changed to save lives and taxpayer dollars then you can help by writing to your congressional representative or U.S. Senator ttake actionoday.  The sample letter below can be used as a guide, but we encourage you to use your own words.

Sample language

Dear ­­­­­____; I am contacting you to request that you cosponsor important legislation for chronic kidney disease patients (for the house, refer to file H.R. 1428.  For the senate refer to file S 323), the “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act to help kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new kidney.

Individuals with chronic kidney failure require kidney dialysis or a transplant to survive, and are eligible for Medicare regardless of age or other disability. There is no time limit on Medicare coverage for dialysis patients. However, transplant recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant. After their Medicare ends, they often face the challenge of obtaining group health insurance or other coverage, greatly increasing the risk of organ rejection if they cannot afford their required medications. If the transplanted kidney fails, they return to dialysis or receive another transplant, both of which are more costly (Medicare spends about $90,000 annually on a dialysis patient and about $25,000 per year for a kidney transplant recipient, after the year of the transplant).

The current bill would extend Medicare Part B eligibility, and only for immunosuppressive medications. Coverage for any other health needs would end 36 months after the transplant, as under current law. The legislation also requires group health plans to maintain coverage of immunosuppressive drugs if they presently include such a benefit in their coverage. Lifetime immunosuppressive coverage will improve long term transplant outcomes, enable more kidney patients who lack adequate insurance to consider transplantation, and reduce the number of kidney patients who require another transplant. Nobody should lose a transplant because they are not able to pay for the drugs to maintain it.

On behalf of thousands of transplant patients, I respectfully request your support of this legislation. Sincerely,

Your name

 

In order to help you write to your representative in congress Bob’s Newheart has provided the following resource.  You can find your elected representatives and others here http://www.usa.gov/Contact/Elected.shtml or you can use the following links as well

To find your U.S. Senator’s address click on this link http://www.senate.gov/general/contact_information/senators_cfm.cfm

To find your congressional representative click on this link. http://www.house.gov/representatives/find/

 

bob minus Jay full shotBob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.


By Bob Aronson

Cat cartoon

There’s something about petting a dog or having a cat nestle in your lap that brings one a certain serenity or at least a warm feeling. It’s been shown medically that the company of a pet can bring blood pressure down, lessen depression, calm frayed nerves and even help to settle an upset stomach.

Is there anything cuter than a puppy or kitten? Even at their destructive worst they are cute. When we got Reilly, our Soft Coated Wheaten Terrier as a puppy she loved to shred paper and those razor sharp puppy teeth can do that in a split second.

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Reilly and the toilet paperLook at this mess. She had gotten a hold of some toilet paper and made a mess of our living room, there were shreds of paper everywhere. And…when we found her amidst that pile of blowing and drifting tissue, she looked up and wagged her tail, proud of her accomplishment and willing to destroy even more if it would please us. Look at this picture, how could you possibly do anything but laugh upon seeing this mess.

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Besides the laughs, the warm fuzzy feelings and the love what can pets do for you?  According to the Centers for Disease Control and Prevention, the company of a pet can help people who are living with depression. Why is that? I think it’s because they ask for very little and Reilly and Ziggy sleeping in basket togethergive unlimited affection and companionship. Maybe it’s because cats, dogs and other companion creatures offer unlimited affection and nonjudgmental companionship. They lift our spirits and lower our stress. They counteract symptoms such as isolation, rumination and lethargy.  Even just looking at our two dogs Reilly and Ziggy (mini schnauzer)  and how much they like each other gives one a warm all over feeling.

 

People who study human behavior tell us that caring for animals is an ego boost, a shot in the self-esteem department that gives people a sense of purpose, of being needed and necessary. Knowing that another living being depends on us for sustenance and protection gives our self-worth a good shot in the arm.

 

According to a 2009 study published in the American Journal of Orthopsychiatry.Jennifer P. Wisdom, PhD, an associate professor of clinical psychology at Columbia University Medical Center and several of her colleagues surveyed 177 nearly 200 patients with varying degrees of mental illness to determine how the recovery process works. The study concluded that besides offering the boost in self-worth, Pets can serve as either substitute or additional family members. Yes, family. If you’ve ever had a pet you know that you consider them family— because they are.

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For some people the only love in their lives is the love shared between them and cat cuddlingtheir companion animals. Now, I don’t know who invented the term companion animal but it is perfect because they are more than possessions, they are friends, companions, confidants and you could even say, therapists. If you can find a single human being who is a better listener that your dog or cat or bird or whatever I’ll buy you lunch. They never object, they don’t interrupt they just listen very carefully and wag their tails or curl up close to you. Their affection washes over you like a hot shower after a long run and all the troubles of the day run into the drain.

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Our dogs are happy to see us at least a dozen times a day. If I leave to go the store, I get a reception when I come home that is as though I had been gone for a year. I get the same reception if I go to the mail box and come back in a minute later. Open the door and Ziggy is running in circles with joy and Reilly is licking my hand. They are always glad to see me and you know there is nothing phony about it…they really are glad to see you every time they see you.

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Here’s a classic video…it’s a must see and it’s short.  A soldier returns from a tour of duty in Afghanistan and the first one to greet him is his dog.  This will bring tears to your eyes.  https://www.youtube.com/watch?v=ysKAVyXi0J4

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Not only are pets good for your mental health, they can be of immeasurable assistance in maintaining your physical health as well.  Dogs need to be walked and that means you need to walk with them. You may not think of it this way but your dog is helping you It's time for your walkget exercise you might not get otherwise. Every medical study done on the value of exercise says the same thing, even a casual walk is good for you. You don’t have to sprint or run or jog, just walk with Fido and you are getting a health benefit. I haven’t seen any studies on the matter but I’ll bet that dog owners walk more than people who don’t have them. And…I’ve read that people who have pets, or companion animals also have lower blood pressure and decreased cortisol…that’s the stuff that causes stress.

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Most nursing homes or extended care facilities allow visits from animals. When my mom was in a nursing home we used to bring our terrier/Chihuahua mixed dog Lady with us. Mom loved seeing her and lady, who could be a cranky little dog, loved seeing mom. I think they both loved all the attention they got. Other nursing home residents always stopped and wanted to pet Lady. One little 12 pound dog could make a whole nursing home happy at least for a few minutes.

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“Okay,” you say, “I’ll buy all the benefits of having a pet but I can’t. I’m not home much, I travel a lot, I just can’t care for one.” Well, you can benefit from animals anyway. Alan Beck who is the Director of the Center for Human-Animal Bonding at Purdue University suggests the following:

Visit a zoo. Farms that open their barns to visitors and even petting zoos can also be an entrée into the animal world.

  • Put up a birdfeeder in your backyard or outside your apartment window. You could also get out to a park to enjoy birds, chipmunks and other critters in their natural setting.
  • Set up a home aquarium. It may take a little work to get the pH levels balanced, but an established fish tank is fairly easy to maintain.
  • Walk a friend’s dog. You could also offer to pet-sit for dogs, cats, fish and so forth when friends and family members go on vacation, but be sure you’re ready to take on the responsibility.
  • Volunteer at an animal shelter. This is a win-win-win. The shelter gets extra hands to groom, play with or clean up after their charges; you get the feel-good effects of being around animals, and the abandoned pets benefit from your attention.

If none of that appeals to you how about a good movie. One that tugs at your heart strings and makes you feel good. Try any one of these.
1. Beethoven

beethoven

 

 

 

 

 

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This giant but adorable St. Bernard’s real name was Chris.
2. Buddy

buddy

 

 

 

 

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Buddy — from the “Air Bud” movies — was his real name, and he also played Comet in Full House!
3. Marley

Marley and Me

 

 

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Marley, of “Marley and Me” was played by 18 different dogs. All really freaking cute.

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You can find more great “Feel good” dog movies at http://www.buzzfeed.com/lyapalater/30-of-the-greatest-movie-dogs

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Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – spread the word about the immediate need for more organ donors.  On-line registration can be done at www.donatelife.net  Whenever you can, help people formally register.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 60 lives.  Some of those lives may be people you know and love.  

You are also invited to join Facebook’s Organ Transplantation Initiative (OTI) a 3,500 member  group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties.  Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts. 

 bob half of bob and jay photoBob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.


Bob Aronson:

If you find that alcohol may be a problem in your life and your drinking habits are causing problems with and for other people you may have an alcohol problem. If you have ever wondered if you were an alcoholic you can get a very private answer here. We don’t track who takes the test so take it in the privacy of your home and if the results are negative, do something about it. You have control if you are willing to take it.
This blog was first published several years ago. I have updated it and published it again because of the demand for answers to the question, “Am I an alcoholic and how do I find out?”

Originally posted on Bob's NewHeart:

By Bob Aronson

devil cartoonAlcohol, Drugs and Tobacco can have deadly effects on your organs and constitute one of the leading contributors to the need for organ transplantation.  I have long contended that while organ donation is important we just aren’t making enough headway under the current system.  Too many people are dying because of the organ shortage.  One way of reducing the organ shortage is to diminish the demand.   Healthier living could help achieve that goal. Look at this listing of the short and long term effects of alcohol.

Depending on how much is taken and the physical condition of the individual, alcohol can cause:

  • Slurred speech
  • Drowsiness
  • Vomiting
  • Diarrhea
  • Upset stomach
  • Headaches
  • Breathing difficulties
  • Distorted vision and hearing
  • Impaired judgment
  • Decreased perception and coordination
  • Unconsciousness
  • Anemia (loss of red blood cells)
  • Coma
  • Blackouts (memory lapses, where the drinker cannot remember events that occurred while under the influence)

Long-term…

View original 1,086 more words


By Bob Aronson

morphine is the best medicine 

I suffer from Chronic Pain and do millions of others and it’s getting more and more difficult to get any relief from it because two federal agencies are bullying physicians.

My neck and shoulder pain started after my heart transplant and some of it was directly related to the position of my arms while I was in surgery.  Many transplant recipients suffer the same fate, but transplant or not if a person is in pain relief should be no farther away than your doctor’s office.  It’s not!

I have received dozens of messages from pain sufferers since I published the previous two posts on the subject of chronic pain and physicians who simply will not prescribe narcotics (1. Why You Can’t Get Pain Meds http://tinyurl.com/knltszh   and (2. Suffering from Chronic Pain? Here’s what you need to know http://tinyurl.com/lzy8o22 and that’s what prompted me to write this third blog on the subject. I’m angry, frustrated and helpless.

The U.S. Drug Enforcement Administration (DEA) mission (more on that later)dea badge is essentially to stop the production and sale of illegal drugs in America. Their “War on Drugs” is well known and it has recently expanded from the poppy fields to the practice of medicine and to pharmacies. 

A few years ago Florida was the state of the “Pill Mills,” places where almost anyone could get powerful prescription pain killers just by showing up at the Doctor’s office. So flagrant were the violations that the DEA had a pill mill 2heyday of arrests and convictions but like many federal agencies they didn’t know when to stop.  Not satisfied with putting the “Pill Mill” docs out of business, they turned to the regular physicians and warned them of investigations and loss of license if they were found to be prescribing narcotic pain meds to people who weren’t in pain.

Many physicians who saw the DEA overreaction to the “Pill Mills” overreacted themselves and decided not to prescribe opioids (narcotics or controlled substances) to anyone.  The result is that many who suffer from chronic pain that cannot be relieved by anything other than narcotics can’t get them and are suffering needlessly.

How chilling is the DEA’s action.  Try this on for size.  44% of American doctors confess that a fear of a police or DEA investigation into their practice influenced the way that they prescribed medications to chronic pain patients. This according to a poll of doctors for the Center for Addiction and Substance Abuse.

The DEA’s actions are harming patients and maybe it is because their mission is the most convoluted, overly broad, confusing detailed mess you’ll ever see. 

Here are three of examples of Mission Statement excellence

  • TED: Spreading Ideas. (2 words)
  • Smithsonian: The increase and diffusion of knowledge. (6 words)
  • USO lifts the spirits of America’s troops and their families. (9 words)
  • DEA (347 words)

(This is only part of it you can see the rest at http://www.justice.gov/dea/about/mission.shtml)

The mission of the Drug Enforcement Administration (DEA) is to enforce the controlled substances laws and regulations of the United States and bring to the criminal and civil justice system of the United States, or any other competent jurisdiction, those organizations and principal members of organizations, involved in the gDEA arrestrowing, manufacture, or distribution of controlled substances appearing in or destined for illicit traffic in the United States; and to recommend and support non-enforcement programs aimed at reducing the availability of illicit controlled substances on the domestic and international markets.

They wrote a mission statement that sets them up to invade anyone at any time for any reason.  If they were legitimately concerned with stopping the flow of illegal drugs their mission statement probably could have said. “The Mission of the DEA is to stop the production and sale of illegal drugs in the United States” (19 words).  Instead, they chose to write a book that gives them the authority to assume more authority.

Essentially what the DEA is talking about is Opioids so let’s start with a definition. opioids What is an Opioid?  According to the National Institute on Drug Abuse opioids are medications that relieve pain. They reduce the intensity of pain signals reaching the brain and affect those brain areas controlling emotion, which diminishes the effects of a painful stimulus.

Medications that fall within this class include hydrocodone (e.g., Vicodin), oxycodone (e.g., Oxycontin, Percocet), morphine (e.g., Kadian, Avinza), codeine, and related drugs. Hydrocodone products are the most commonly prescribed for a variety of painful conditions, including dental and injury-related pain. Morphine is often used before and after surgical procedures to alleviate severe pain. Codeine, on the other hand, is often prescribed for mild pain. In addition to their pain relieving properties, some of these drugs—codeine and diphenoxylate (Lomotil) for example—can be used to relieve coughs and severe diarrhea.

pain cartoonIn their zeal to accomplish the impossible mission the DEA has now ventured into the practice of medicine a discipline for which they are not qualified nor are they welcome.  As a result, thousands upon thousands of Americans are suffering incredible pain.  They can’t get relief because their physicians have been intimidated by the DEA and to a lesser degree the Food and Drug Administration (FDA).  We have here a sort of medical paradox, the feds want to practice medicine and the medical doctors are afraid to. 

This report from the Reuters news agency pretty much sums up the way many physicians are reacting to DEA’s bullying: “Many physicians have increased patient monitoring, which means more urine tests, more documentation, and more frequent “pill count” checks, where patients must go to the prescriber’s office with their pill bottles to prove they have not sold or misused their medication.

“Every hour of the day I have concerns I’ll be audited, that my ability to take care of my patients and my family can be taken away, and I’m as legitimate as you can get,” said one frazzled physicianprescriber who has a private orthopedic practice in Florida. “You’re constantly watching over your shoulder and it takes a toll,” he told Reuters news.

Safety and security are one thing but when a law enforcement agency decides to run rampant over a legitimate segment of the private sector, someone, somewhere ought to stand up and take notice.

In their long but terribly unsuccessful effort to control illegal drugs the DEA has now focused their attention on prescription drugs and in particular those few physicians (most of them were in Florida) who wrote narcotics prescriptions for nearly anyone who wanted them.  And…they’ve been successful. Most of the pill mills are gone, babrams tankut the DEA is like a runaway Abrams tank and is now rumbling over the medical profession.

In typical federal overreaction to the “Pill Mill” crisis, the DEA decided to crack down on all physicians by letting them know that they were being watched and that they had better be damned sure they were prescribing narcotics for real pain and not to junkies.

The overreaction by the Feds was met by an equal overreaction by many physicians.  They just quit prescribing opioid (narcotic) pain meds because they don’t want the hassle. Both the feds and the docs seem to have forgotten us patients.  We are the ones who get the short, sharp, infected end of the stick.

Not satisfied with their efforts, but impressed with their nearly effortless intimidation of the medical profession the DEA then decided that while they concentrated on powerful narcotics like oxycontin and oxycodone the effort should not stop there.  They also bullying imagewanted restrictions on a lower level of painkillers as well so they crossed the street and bullied the FDA into telling docs they had better be careful when they prescribe Vicodin and Lortabs.  Both contain hydrocodone and are usually combined with over the counter analgesics like aspirin or Tylenol.

The result?  If you suffer from chronic pain you are going to have a very difficult time getting any drug containing a narcotic or other controlled substance.  The medical profession has been scared to cause many docs to refuse to prescribe narcotics or any other controlled substance including drugs like Valium which is non-narcotic but still a controlled substance.

Many so-called “Pain Clinics” will not prescribe narcotics at all for any reason. Instead they will look for “root causes” and try a raft of anti-inflammatory and other treatments.  And, to be fair, in some cases those “other treatments” work, but while the pain experts are searching for non-opioid solutions, the patient suffers. I know I’m one of them.  When I asked one pain clinic doc for narcotics after repeated failed attempts to control my pain he said,”I can’t do that, see your primary.”  The “can’t” part of the answer is pure BS.  Won’t is the correct word to use — won’t because he has been intimidated by the feds.  I endured weeks of agonizing, debilitating pain because they refused to prescribe narcotics even though nothing else was working.

There are some docs who have the courage to practice medicine despite thewe are watching you fact that two powerful federal agencies are threatening them with a minimum of being investigated and a maximum of license revocation.  Physicians feel as though they are constantly being watched.

My primary care doc understands that I really do suffer from chronic pain and that I have tried other approaches that have failed.  Despite that, to protect his license he monitors my use of the Oxycodone he prescribes very carefully.  He requires that once a month, when it is time for a prescription refill he sees me in his office where he reviews my case, questions me about my pain level and then reminds me of the dangers of opioids even though I have never sought an increase in dosage and am not an addict.. 

I still believe that while the DEA and the FDA are being heavy handed, physicians who are licensed to practice medicine and fail to prescribe drugs that have been proven to be effective must bear some of the responsibility for the suffering many chronic pain patients are experiencing.  

eyes in the darkReminiscent of so many tyrannical regimes the DEA absolves itself of any responsibility for the suffering they have caused among patients with chronic pain.  Here’s what they told The National Pain Report.  

“The agency is not trying to limit access to opioid painkillers. And if legitimate pain medication prescriptions are not being written or filled, it’s the fault of doctors and pharmacists, not the government,” said DEA spokesman Rusty Payne. 

“We’re not doctors. We’re regulators and enforcers of the law. If something is prescribed for a legitimate medical purpose, we’re certainly not going to get in the way.  If a pharmacy chooses not to fill a prescription for someone, that’s their decision. It’s not the DEA’s decision,” he said.

To me that’s a whole lot like a cop stopping you for no good reason, warning you about speeding and then telling you that he and other cops are watching you very carefully to be sure you abide by all the rules.  Then, if due to fear you just quit driving they say, “That was his choice, we didn’t tell him to stop driving.”

So our bottom line is this. If you have chronic pain and all the non-narcotic remedies don’t work you are going to have to grin and bear it for a while.  No physician in this environment is going to write opioid prescription for someone who walks in from the street complaining of pain.  You are going to have to prove it.  Your chances of getting relief maybe better from your primary care physician but bring evidence of your pain

  • X-rays, MRIs, CT scans
  •  Written diagnosis, prognosis, treatment and instructions from other physicians or emergency departments
  •  Prescription records
  •  Police or other reports if you’ve had an injury
  • Reports from physical therapists or Chiropractors
  • Anything else that will help prove your claim that you have chronic pain and that opioids may be your only relief.

If you want a primary care physician to help you, it is going to take a little time to build a relationship and he or she may even want you to repeat some tests you have already undergone.  Be prepared to hurt for a while because it is unlikely that any physician you have not seen before will prescribe a narcotic pain killer after only one or two appointments.  That’s what our friends at DEA have done for us.

If all of this really gets under your skin, call, write, email, text, holler at or visit your Congressional Representative, Your Senator and/or The President of the United States.

-0-

bob minus Jay full shotBob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.

 

 


By Bob Aronson

UPDATE MARCH 10, 2014

Attention readers — Your outrage worked. Congratulations!!!!

The Obama administration said Monday that it would scrap much of a proposed plan to limit the types of antidepressants and other drugs that seniors can get through Medicare after a backlash from lawmakers and the health industry.

Original blog published February 28, 2014

This is one of the most important blogs I have published.  It is a direct appeal to you to take action.  You will find the steps you need to take at the end of this post.

here to help cartoonA government bureaucracy is seeking to change the rules that allow organ transplant recipients a broad choice of anti-rejection drugs.  If adopted it is the opinion of many medical experts that without the flexibility to select optional drugs many transplant recipients could die. 

Ask yourself, “How does it make sense to pay the cost of a transplant and then refuse to pay for the drugs that make it work? Would we train thousands of men and women to be soldiers and then send them into battle without weapons?”  It is quite likely that your answer would be, “Of course not! That would be insane.”

Unfortunately some bureaucrats are incapable of making decisions based on logic.  They waste billions of dollars and in the process hope we are fooled into thinking that wasted money represents good “investments.”  When these good “investments” go bad they don’t stop pouring money into them they cut expenditures elsewhere — and those cuts cause great harm to the citizens whose tax dollars pay their salaries.

This report is factual and intentionally biased. It is biased because I am a 75 year old heart transplant recipient who counts on Medicare to provide me with my anti-rejection drugs — drugs the government would like to take away so they can fund boondoggles.

Here is some perspective.  When you get a transplant, you must take anti-rejection or immunosuppressant drugs for the rest of your life.  Often, though, it is medically necessary to change to something different and more effective.  If the option for a life-saving change is taken away, many of us will die. 

How the rule makers can ignore that simple, medical fact is beyond me, but they also ignore reality when they say making these cuts will save $1.9 billion over several years.  Here’s reality.  If the changes are adopted they will not only endanger lives, they will in the end, result in taxpayers paying more, not less as the rule’s advocates suggest.   

Here’s how it works in real life.  If organ transplant patients don’t take their immunosuppressant drugs they will go into rejection and will be hospitalized at Medicare’s expense.

Physicians who are sworn to save lives will make every effort to do just that regardless of cost.  In the case of Kidney failure, rejection dialysiscould mean years of dialysis, a treatment that costs about $50,000 per patient per year (there are currently about 400,000 Americans on dialysis). In all cases it is entirely possible that patients who are rejecting their organs could be re-listed for second transplants. Depending on the organ, a transplant can cost in excess of $1 Million for the surgery and the first year of care.

It seems that the cost cutters think that by limiting options there is an almost immediate savings.  There isn’t.  There is, instead, an almost immediate rise in cost.  They seem to use the same twisted logic when trying to save money that they use when spending it.  You can read the detailed proposal here http://www.gpo.gov/fdsys/pkg/FR-2014-01-10/pdf/2013-31497.pdf

Some lawmakers insist that budget cuts be made and they are right, we spend too much as a nation but does it make sense to cut spending that will kill people?

There are two current military projects that are a very big part of the motivation behind the budget cuts.  They are the Gerald R. Ford aircraft carrier and the F-35 Joint Strike Fighter.  Together they have created cost overruns of nearly $200 Billion.  That’s right $200 Billion and the defense department wants more money even though the two projects are plagued with problems. 

These ghouls would actually take medicine from people who will die without it rather than cut dollars from bloated out-of-control projects that were never necessary anyway.

In 2005 the cost of the Gerald R. Ford was estimated to be about $8 billion, excluding the $4.7 billion spent on research Gerald r ford 3and development. Each year the estimate has gone up.  In 2013 a Government Accounting Office (GAO) report said that construction costs are now estimated at $12.8 billion.  That’s 22% over the 2008 budget, plus $4.7 billion in research and development costs.  Not only have the costs continued to rise above the original estimates the Navy is now asking for another $500 million and the aircraft carrier is nowhere near being ready for sea and is plagued with problems. If you would like to know more about the Ford and its problems this link will get you started.  http://www.freerepublic.com/focus/f-news/3110602/posts

F-35 3Then there is the F-35 Joint Strike Fighter.  According to Senator John McCain it is the most expensive weapons system in history and there’s no assurance it will ever do what it was designed to do.  Despite repeated disappointments and failures, we keep throwing good money after bad at it and now that project is $163 billion over budget, seven years behind schedule, and will cost taxpayers about twice as much as sending a man to the moon.  The cost of manufacturing the jets has increased a whopping 75 percent from its original estimate, and is now closing in on $400 billion. Over its lifetime, the F-35 program is expected to cost U.S. Taxpayers $1.5 trillion, between construction and maintenance of the jets.  http://www.pogo.org/blog/2013/03/20130306-air-forces-f-35a-not-ready-for-combat.html

If you would like more details on the F-35 this report provides them along with other links.
http://swampland.time.com/2013/12/18/how-not-to-buy-the-most-costly-weapon-system-in-the-history-of-the-world/

Instead of cutting out the fat in the national budget, though, the bureaucrats have decided to cut spending that very likely will result in death.  They would limit coverage of anti-rejection medicine that keeps organ transplant recipients alive.  Here’s a simple declarative sentence, “When you take away medicine that keeps people alive, they will die.” What part of that sentence don’t they understand? 

The American Kidney Fund is one ofakf logo two many organizations that takes exception to the proposed new rule.  Recently they sent out this letter to their members and other interested parties.

akf logo two

Dear____,

I’m writing to request your help with an issue that is of great importance to our nation’s transplant recipients.

Individuals who are fortunate enough to receive a kidney transplant—or a transplant of any other organ—must take immunosuppressive medications for the life of the transplanted organ to reduce the risk of losing the organ. Some patients rely on Medicare Part D to cover the cost of these medications.

Immunosuppressive drugs are one of six “protected classes” of drugs under Medicare Part D. This means that Medicare Part D must cover all approved immunosuppressive drugs, giving transplant recipients access to the full range of available medications.

On January 10, 2014, the Centers for Medicare & Medicaid Services (CMS) proposed a change to Medicare Part D that would revise the criteria for these protected classes of drugs. Part D plans would no longer be required to cover all approved immunosuppressive medications—instead, Part D plans would only be required to cover each subclass of immunosuppressive medications.

The American Kidney Fund believes that by not covering all of the specific drugs within each subclass, this rule would put patients’ health at risk. Transplant recipients often need adjustments to their immunosuppressive drug regimen. They require access to the full range of approved medications.

We are working hard to ensure that policymakers hear from the kidney community on this issue. You may click here to send a personalized letter to your Congressional representatives urging CMS to reverse this proposal. https://secure2.convio.net/akf/site/Advocacy?cmd=display&page=UserAction&id=119

Thank you for your participation in the American Kidney Fund’s Advocacy Network. Your voice makes a difference!

Sincerely,

Nikia Okoye

CMS (Centers for Medicare and Medicaid Services) will take public comment through March 7th. Please urge them to reject the draft rule change.  You can contact CMS with your comments in this manner. 

If you would like to comment directly to CMS you must do so before 5 PM on March 7, 2014.  Here’s how.

ADDRESSES

In commenting, please refer to file code CMS–4159–P. Because of  staff and resource limitations, we cannot accept comments by facsimile (FAX) transmission.  You may submit comments in one of

four ways (please choose only one of the ways listed):

1. Electronically.  You may submit electronic comments on this regulation to http://www.regulations.gov  or go directly to http://www.regulations.gov/#!documentDetail;D=CMS-2014-0007-0002 . Follow the ‘‘Submit a comment’’ instructions.

2. By regular mail.  You may mail written comments to the following address ONLY: Centers for Medicare & Medicaid Services, Department of Health and Human Services, Attention: CMS–4159–P, P.O. Box 8013, Baltimore, MD 21244–8013. Please allow sufficient time for mailed comments to be received before the close of the comment period.

3. By express or overnight mail.  You may send written comments to the following address ONLY: Centers for Medicare & Medicaid Services, Department of Health and Human Services, Attention: CMS–4159–P, Mail Stop C4–26–05, 7500 Security Boulevard, Baltimore, MD 21244–1850.

4. By hand or courier. Alternatively, you may deliver (by hand or courier) your written comments NLY to the following addresses prior to the close of the comment period: a. For delivery in Washington, DC—Centers for Medicare & Medicaid Services, Department of  Health and Human Services, Room 445– G, Hubert H. Humphrey Building, 200 Independence Avenue SW., Washington, DC 20201.

(Because access to the interior of the Hubert H. Humphrey Building is not readily available to persons without federal government identification, commenters are encouraged to leave their comments in the CMS drop slots located in the main lobby of the building. A stamp-in clock is available for persons wishing to retain a proof of filing by stamping in and retaining an

extra copy of the comments being filed.) b. For delivery in Baltimore, MD— Centers for Medicare & Medicaid Services, Department of Health and Human Services, 7500 Security Boulevard, Baltimore, MD 21244–1850.If you intend to deliver your comments to the Baltimore address, call telephone number (410) 786–9994 in advance to schedule your arrival with one of our staff members.

Comments erroneously mailed to the addresses indicated as appropriate for hand or courier delivery may be delayed and received after the comment period.

 -0-

magic kindom in backgroundBob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.


cartoon By Bob Aronson

When you have a serious illness you want relief and most often it does not come quickly or simply. The proper practice of medicine is measured, deliberate and often slow.  Medical experts depend on established scientific protocols to determine the effectiveness of treatments.  Because the mass media offer the same advertising and promotional opportunities to everyone it is often difficult to determine which ads are legitimate and which are not.  This blog aims to help you decide.

While there is no shortage of local, state and federal agencies who seek to protect consumers from scams, fraud and quackery there is no way that every offer made in the media, on the phone and through the internet can be monitored.  Your protection depends for the most part of your being alert to scams and can recognize offers that are without merit.  There is no shortage of frauds and crooks who scheme daily to find new ways to get you to part with your money. That means you must do everything possible to protect yourself.

The U.S. Food and Drug Administration (FDA) has broad responsibilities in its role as a consumer protection agency.  Here is just a part of what FDA is mandated to do:

“FDA is responsible for protecting the public health by assuring the safety, efficacy and security of human and veterinary drugs, biological products, medical devices, our nation’s food supply, cosmetics, and products that emit radiation.

FDA is also responsible for advancing the public health by helping to speed innovations that make medicines more effective, safer, and more affordable and by helping the public get the accurate, science-based information they need to use medicines and foods to maintain and improve their health.”

You can read more of the FDA’s mission here http://www.fda.gov/aboutfda/whatwedo/

Exposing fraud is but one aspect of the FDA’s role and there is no shortage of fraudulent claims being made.  You can find more by clicking on this link.: http://www.fda.gov/forconsumers/protectyourself/healthfraud/default.htm   Often companies make health claims about their products that not only are not true but can cause great harm, even death.  Here’s just one example of a medical claim deemed dangerous enough by the FDA to issue a public warning (I have edited the warning. For the official language go to http://tinyurl.com/m2u8s7b)

Public Notification: Pro ArthMax Contains Several Hidden Drug Ingredients

[1-15-2014] The Food and Drug Administration (FDA) is advising consumers not to purchase or use Pro ArthMax, a product promoted and sold as a dietary supplement for joint, muscle and arthritic pain.

FDA laboratory analysis confirmed that Pro ArthMax contains the active ingredients diclofenac, ibuprofen, naproxen, indomethacin, nefopam, and chlorzoxazone.

  • Diclofenac, ibuprofen, naproxen, and indomethacin are NSAIDs which may cause increased risk of heart attack and stroke, as well as serious gastrointestinal damage including bleeding, ulceration, and fatal perforation of the stomach and intestines.
  • Chlorzoxazone is a muscle relaxant that is only available by prescription. Chlorzoxazone may cause drowsiness, dizziness, and lightheadedness, which may impair the ability to perform certain tasks, such as driving a motor vehicle or operating machinery.
  • Nefopam is a non-narcotic pain relieving drug that is not approved for marketing in the U.S. is not FDA-approved and its safety or efficacy has not been established.

arthritis drugConsumers should stop using this product immediately and throw it away. Consumers should consult a health care professional as soon as possible if they have experienced any negative side effects, such as unusually dark stools or urine, stomach pain, increased bruising, other signs of bleeding, confusion, sedation, hallucinations, and seizures.

Health care professionals and patients are encouraged to report adverse events or side effects related to the use of this product to the FDA’s MedWatch Safety Information and Adverse Event Reporting Program:

Contact FDA Toll Free (855) 543-3784, or (301) 796-3400 druginfo@fda.hhs.gov

How to Recognize a Scam

There are thousands perhaps millions of scams that find their way into our lives every dayscam alert.  Some of them sound and look so legitimate we don’t recognize them until it is too late.

QuackWatch is a website run by a couple of physicians who keep an eye out for phony medical claims.  One such claim is that we all suffer from some sort of vitamin deficiency.  Stephen Barrett, M.D. and Victor Herbert, M.D., J.D. are pretty astute and have developed a list of 26 Ways to Spot Quacks and Vitamin Pushers.  I will list only a few here.  You can find the rest on their website. http://www.quackwatch.com/

They Claim That Most Americans Are Poorly Nourished

This is an appeal to fear that is not only untrue, but ignores the fact that the main forms of bad nourishment in the United States are obesity in the population at large (particularly the poor) and undernourishment among the poverty-stricken. Poor people can ill afford to waste money on unnecessary vitamin pills. Their food money should be spent on nourishing food.

It is falsely alleged that Americans are so addicted to “junk” foods that an adequate diet is exceptional rather than usual. While it is true that some snack foods are mainly “naked calories” (sugars and/or fats without other nutrients), it is not necessary for every morsel of food we eat to be loaded with nutrients. In fact, no normal person following the Dietary Guidelines for Americans is in any danger of vitamin deficiency.

They Say That Most Diseases Are Due to Faulty Diet
and Can Be Treated with “Nutritional” Methods.

This simply isn’t so. Consult your doctor or any recognized textbook of medicine. They will tell you that although diet is a factor in some diseases (most notably coronary heart disease), most diseases have little or nothing to do with diet. Common symptoms like malaise (feeling poorly), fatigue, lack of pep, aches (including headaches) or pains, insomnia, and similar complaints are usually the body’s reaction to emotional stress. The persistence of such symptoms is a signal to see a doctor to be evaluated for possible physical illness. It is not a reason to take vitamin pills

They Suggest That a Questionnaire Can Be Used
to Indicate Whether You Need Dietary Supplements.

questionaireNo questionnaire can do this. A few entrepreneurs have devised lengthy computer-scored questionnaires with questions about symptoms that could be present if a vitamin deficiency exists. But such symptoms occur much more frequently in conditions unrelated to nutrition. Even when a deficiency actually exists, the tests don’t provide enough information to discover the cause so that suitable treatment can be recommended. That requires a physical examination and appropriate laboratory tests. Many responsible nutritionists use a computer to help evaluate their clients’ diet. But this is done to make dietary recommendations, such as reducing fat content or increasing fiber content. Supplements are seldom necessary unless the person is unable (or unwilling) to consume an adequate diet.

They Use Anecdotes and Testimonials to Support Their Claims.

Establishing medical truths requires careful and repeated investigation—with well-designed individual endorsementexperiments, not reports of coincidences misperceived as cause-and-effect. That’s why testimonial evidence is forbidden in scientific articles, is usually inadmissible in court, and is not used to evaluate whether or not drugs should be legally marketable. (Imagine what would happen if the FDA decided that clinical trials were too expensive and therefore drug approval would be based on testimonial letters or interviews with a few patients.)

They Claim They Are Being Persecuted by Orthodox Medicine
and That Their Work Is Being Suppressed Because It’s Controversial.

conspirancyThe “conspiracy charge” is an attempt to gain sympathy by portraying the quack as an “underdog.” Quacks typically claim that the American Medical Association is against them because their cures would cut into the incomes that doctors make by keeping people sick. Don’t fall for such nonsense! Reputable physicians are plenty busy. Moreover, many doctors engaged in prepaid health plans, group practice, full-time teaching, and government service receive the same salary whether or not their patients are sick—so keeping their patients healthy reduces their workload, not their income.

Phony Pharmacies

phony pharmacyThere is not a single area of healthcare that has not been scammed by crooks.  Consumers must continually keep their guard up. Because prescription drugs can be costly many people turn to on-line pharmacies who offer huge discounts for what they say is the same medicine but sometimes under a different name.   Again…buyer beware.

ScamWatch is an Australian organization that provides excellent advice.  They offer these tips to avoid wasting your money on offers that are, “Too good to be true.” I have edited their material.  For more and complete information go to http://www.scamwatch.gov.au/content/index.phtml/tag/Scamwatch/

Miracle cure scams?

Miracle cure scams cover a whole range of products and services which can appear to be legitimate snake oil cures allalternative medicine. They cover health treatments for all kinds of medical conditions from cancer and AIDS to arthritis and colds. Miracle cure scams usually promise quick and easy remedies for serious medical conditions.

Miracle cure scams are particularly nasty because they usually increase health and emotional stress, they are costly, and they can be dangerous if they prevent you from seeking expert medical advice. They exploit people’s hopes for improved health and end up causing more problems for people who already have enough to deal with.

Warning signs

  • The treatment claims to be effective against a very wide range of ailments.
  • The miracle cure is suggested after a condition is diagnosed using a questionnaire (often on the internet).
  • The product is sold through unconventional means. For example, it might be sold over the internet, by unqualified individuals, through mail order ads, or on television infomercials.
  • The product relies on some guru figure, or a certain ingredient that is claimed to have mystical properties.
  • There is no scientific evidence to back up the claim that the miracle cure actually works.
  • Miracle cures usually include anonymous testimonials, for example ‘Luke, from

Do your homework

You should seek independent medical advice from your doctor or other qualified health care professional about the miracle cure to see if it is safe and suitable for you. Remember that a legitimate diagnosis cannot be made by someone who is not qualified or has not seen you. Do not rely solely on information you find on the internet.

If you are interested in the product, find out if there are any published medical or research papers to back up the claims. Make sure you know the full cost of the product or service, and if there is a genuine money back guarantee.

Senior Citizens are Targets of Scammers and Quacks

senior scamsAs a senior citizen myself I see the scams and phony offers on a daily basis.  They come by email, snailmail, telephone and internet “News” flashes.  The best advice we can give is this.  If you don’t know the people who are making a claim, dismiss them and seek advice from someone you trust.

Here are some of the top scams that target senior citizens

http://www.ncoa.org/enhance-economic-security/economic-security-Initiative/savvy-saving-seniors/top-10-scams-targeting.html  (again, I have edited the material for the complete report click on the above link)

Financial scams targeting seniors have become so prevalent that they’re now considered “the crime of the 21st century.”  Over 90% of all reported elder abuse is committed by an older person’s own family members, most often their adult children, followed by grandchildren, nieces and nephews, and others.

Financial scams also often go unreported or can be difficult to prosecute, so they’re considered a “low-risk” crime. However, they’re devastating to many older adults and can leave them in a very vulnerable position with little time to recoup their losses.

Some ways to identify scams

Health Care/Medicare/Health Insurance Fraudsenior on phone

Every U.S. citizen or permanent resident over age 65 qualifies for Medicare, so there is rarely any need for a scam artist to research what private health insurance company older people have in order to scam them out of some money.

In these types of scams, perpetrators may pose as a Medicare representative to get older people to give them their personal information, or they will provide bogus services for elderly people at makeshift mobile clinics, then use the personal information they provide to bill Medicare and pocket the money.

Counterfeit Prescription Drugs

Most commonly, counterfeit drug scams operate on the Internet, where seniors increasingly go to find better prices on specialized medications.

The danger is that besides paying money for something that will not help a person’s medical condition, victims may purchase unsafe substances that can inflict even more harm. This scam can be as hard on the body as it is on the wallet.

Funeral & Cemetery Scams

funeral scammerThe FBI warns about two types of funeral and cemetery fraud perpetrated on seniors.

In one approach, scammers read obituaries and call or attend the funeral service of a complete stranger to take advantage of the grieving widow or widower. Claiming the deceased had an outstanding debt with them, scammers will try to extort money from relatives to settle the fake debts.

Another tactic of disreputable funeral homes is to capitalize on family members’ unfamiliarity with the considerable cost of funeral services to add unnecessary charges to the bill.

In one common scam of this type, funeral directors will insist that a casket, usually one of the most expensive parts of funeral services, is necessary even when performing a direct cremation, which can be accomplished with a cardboard casket rather than an expensive display or burial casket.

Fraudulent Anti-Aging Products

In a society bombarded with images of the young and beautiful, it’s not surprising that some older people feel the need to conceal their age in order to participate more fully in social circles and the workplace.

Whether it’s fake Botox like the one in Arizona that netted its distributors (who were convicted and jailed in 2006) $1.5 million in barely a year, or completely bogus homeopathic remedies that do absolutely nothing, there is money in the anti-aging business.

Botox scams are particularly unsettling, as renegade labs creating versions of the real thing may still be working with the root ingredient, botulism neurotoxin, which is one of the most toxic substances known to science. A bad batch can have health consequences far beyond wrinkles or drooping neck muscles.

Telemarketing

Perhaps the most common scheme is when scammers use fake telemarketing calls to prey on older peopsenior scams on phonele, who as a group make twice as many purchases over the phone than the national average.

Examples of telemarketing fraud include:

“The Pigeon Drop”

The con artist tells the individual that he/she has found a large sum of money and is willing to split it if the person will make a “good faith” payment by withdrawing funds from his/her bank account. Often, a second con artist is involved, posing as a lawyer, banker, or some other trustworthy stranger.

“The Fake Accident Ploy”

The con artist gets the victim to wire or send money on the pretext that the person’s child or another relative is in the hospital and needs the money.

“Charity Scams”

Money is solicited for fake charities. This often occurs after natural disasters.

Investment Schemes

investment scammersBecause many seniors find themselves planning for retirement and managing their savings once they finish working, a number of investment schemes have been targeted at seniors looking to safeguard their cash for their later years.

From pyramid schemes like Bernie Madoff’s (which counted a number of senior citizens among its victims) to fables of a Nigerian prince looking for a partner to claim inheritance money to complex financial products that many economists don’t even understand, investment schemes have long been a successful way to take advantage of older people.

Homeowner/Reverse Mortgage Scams

The reverse mortgage scam has mushroomed in recent years. With legitimate reverse mortgages increasing in frequency more than 1,300% between 1999 and 2008, scammers are taking advantage of this new popularity.

As opposed to official refinancing schemes, however, unsecured reverse mortgages can lead property owners to lose their homes when the perpetrators offer money or a free house somewhere else in exchange for the title to the property.

Sweepstakes & Lottery Scams

This simple scam is one that many are familiar with, and it capitalizes on the notion that “there’s no such thing as a free lunch.”

Here, scammers inform their mark that they have won a lottery or sweepstakes of some kind and need to make some sort of payment to unlock the supposed prize. Often, seniors will be sent a check that they can deposit in their bank account, knowing that while it shows up in their account immediately, it will take a few days before the (fake) check is rejected.

During that time, the criminals will quickly collect money for supposed fees or taxes on the prize, which they pocket while the victim has the “prize money” removed from his or her account as soon as the check bounces.

The Grandparent Scam

The Grandparent Scam is so simple and so devious because it uses one of older adults’ most reliablegrandparent scam assets, their hearts.

Scammers will place a call to an older person and when the mark picks up, they will say something along the lines of: “Hi Grandma, do you know who this is?” When the unsuspecting grandparent guesses the name of the grandchild the scammer most sounds like, the scammer has established a fake identity without having done a lick of background research.

Once “in,” the fake grandchild will usually ask for money to solve some unexpected financial problem (overdue rent, payment for car repairs, etc.), to be paid via Western Union or MoneyGram, which don’t always require identification to collect.

At the same time, the scam artist will beg the grandparent “please don’t tell my parents, they would kill me.”

While the sums from such a scam are likely to be in the hundreds, the very fact that no research is needed makes this a scam that can be perpetrated over and over at very little cost to the scammer.

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smaller stillBob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.


By Bob Aronson

wasted timeOne of the biggest lies we tell ourselves is, “I don’t have time for….”  You can complete the sentence.  The fact is you only think you don’t have enough time, you have plenty it’s just that it comes in fits and starts – little pieces of time that we don’t acknowledge as “useful.”

This blog is about organ donation/transplantation and related subjects and there are a lot of related subjects.  Today’s post is about time, time chalked up as wasted, the time you spend waiting.

Yesterday as I sat waiting in my Doctor’s office it occurred to me that I spend a lot of time waiting, not just as a heart transplant recipient but everywhere I go I wait. people waiting I wait at the bank, the pharmacy, getting the car serviced and standing in line at check-out counters in stores.  I wait for the pasta water to boil, the alarm to go off, for traffic lights to change and in line to use a public restroom.  I wait a lot and so do you and for the most part that time is totally unproductive and non-edifying.

While sitting in the “Waiting room” at the clinic I did what a lot of people do, I took out my cell phone (it does everything but make coffee, I can even use it as the remote control for the TV) and began to surf the net (don’t you love that tech talk) looking for something, anything interesting. people on cells I looked around the room and almost everyone sitting there either had a laptop, a phone or a tablet and I wondered if they were surfing, too, or if they had something specific they were studying.  Being the curious type I couldn’t wait to get home to my laptop.

Here’s what I found; the Timex company (you know the ones who said, “Takes a licking and keeps on ticking”) did a study a while back on just how much time we spend waiting and the results were very interesting.

Timex made it quite clear that we all know we waste time, we just hwasting time bent clockaven’t made the effort to determine how much.  The Timex survey revealed that on average each day, people wait seven minutes for a cup of coffee, 20 minutes in traffic, 20 minutes for the bus or train and 32 minutes each time they go to the doctor…that’s for each appointment.  If you have three or four physician’s appointments in a day you could waste up to two hours waiting.

Having established that we have a lot of free (wasted) time I can get to the point of this blog.  Do you use that time wisely?  As long as you have to wait doesn’t it make sense to use the time to be entertained, to learn or even to meditate?  The problem is that most of us aren’t prepared to use the time wisely, we spend it surfing.  So I thought, “I’ll give my readers something interesting and entertaining so that “Waiting” time is not “Wasted” time.

I love science and technology stuff, you know interesting pieces of information about science and space and space travel and the building blocks of life and all that.  Actually I love to read something and say, “Wow, I didn’t know that.”  When that happens I tuck that information away for use as a conversation starter or enhancer when needed.  Anyway, I did some research for you so the next time you are waiting somewhere you can say, “I’ll click on some of that stuff from Bob’s Newheart.”hubble-universe

Let us start with some absolutely mind boggling information.

  • According to NASA the biggest thing in the universe is a recently discovered Galaxy. From “Tip to tip” the NGC 6872 spans 522,000 light years, five times the length of our own Milky Way…which is pretty darned big.  522,000 light years and a single light year is almost 6 Trillion miles (5,878,499,810,000 miles).  And…remember that is just one galaxy.  So, your next question then is, “How many galaxies are there?”  Good question but tough to find an exact answer because no one really knows but, the most current estimates guess that there are 100 to 200 billion galaxies in the Universe, each of which has hundreds of billions of stars. A recent German supercomputer simulation put that number even higher: 500 billion. In other words, there could be a galaxy out there for every star in the Milky Way.

What do you think is the biggest living organism on the planet?  I’ll bet you said a Blue Whale or some other sea creature.  Wrong!   Nope…not a Redwood tree either.  The biggest living organism on earth is a honey mushroom that grows underground in Oregon. It covers 2,385 acres—a single organism, with identical DNA all the way through. That’s the biggest living thing on earth.

More mind bogglers

  • When you look at the stars you are looking into the past.  The starlight we see looking through telescopein the night sky has taken a long time to travel across space to reach our eyes. This means whenever we star gaze we are looking at how they looked a long time ago. For example, the bright star Vega is pretty close to us at only twenty five light-years away. That means that what you are seeing took place twenty five years ago. As you view stars even farther away your look into history becomes ever deeper until your peek into the past allows you to witness the Big Bang itself.
  • Sagittarius B is a vast molecular cloud of gas and dust floating near the center of the Milky Way, 26,000 light-years from Earth, 463,000,000,000 kilometers in diameter and, amazingly, it contains 10-billion-billion-billion liters of alcohol. That’s a lot of beer or vodka…wow!   The vinyl alcohol in the cloud is an important organic molecule which offers some clues how the first building blocks of life-forming substances are produced.
  • venusVenus is the slowest rotating planet in our Solar System, so slow it takes longer to fully rotate than it does to complete its orbit. This means Venus has days that last longer than its years. It’s also home to one of the most inhospitable environments imaginable, with constant electronic storms, high CO2 readings, and it’s shrouded by clouds of sulfuric acid.
  • You may not remember the Voyager Program which launched two spacecraft, Voyager 1 and Voyager 2, in 1977. The probes explored the planets and moons of the outer Solar System over several decades and are now continuing their mission to travel through the edge of our Solar System and into interstellar space.

On March 20 2013, Voyager 1 became the first human-made object to leave our Solar Sytem and is now the furthest human-made object from Earth, it’s around 1.15581251×1010 miles away. Putting it mildly this is a long way from home.

  • dark-energy-abell-cluster-100819-02Did you know that there could be 500 million planets capable of supporting life in our galaxy?  Scientists searching for extraterrestrial life focus on “Goldilocks Planets“; whose which fall into a star’s habitable zone. Planet Earth seems to have exactly the right conditions for life to exist – its distance from the Sun means the temperature is right, water can exist as a liquid solid and a gas, and there are the right combination of chemical compounds available to build complex life forms. Other planets thought to have similar features are known as Goldilocks planets.
  • In the Milky Way alone there are estimated to be 500 million potential Goldilocks planets, so if life can exist in places other than Earth there is a huge number of potential planets on which it might thrive. If these numbers are applied to all the galaxies in the universe there could be a staggering variety of planets capable of supporting life. Of course, we have no evidence life exists elsewhere, but if it does there are plenty of places for it to set up home.
  • There May Be More Universes.  Credit: Stephen Feeney/UCLThe idea that we live in a multiverse, in which our universe is one of many, comes from a theory called eternal inflation, which suggests that shortly after the Big Bang, space-time expanded at different rates in different places. According to the theory, this gave rise to bubble universes that could function with their own separate laws of physics.

The concept is controversial and had been purely hypothetical until recent studies searched for physical markers of the multiverse theory in the cosmic microwave background, which is a relic of the Big Bang that pervades our universe. [Full Story]

Are you finding these items interesting?  Well, there’s more.  Here are 25 amazing space facts. http://www.amazingspacefacts.50webs.com/

1. Saturn’s moon Titan has plenty of evidence of organic (life) chemicals in its atmosphere.

2. Life is known to exist only on Earth, but in 1986 NASA found what they thought might be fossils of microscopic living things in a rock from Mars.

3. Most scientists say life’s basic chemicals formed on the Earth. The astronomer Fred Hoyle said they came from space.

4. Oxygen is circulated around the helmet in space suits in order to prevent the visor from misting.

5. The middle layers of space suits are blown up like a balloon to press against the astronaut’s body. Without this pressure, the astronaut’s body would boil!

6. The gloves included in the space suit have silicon rubber fingertips which allow the astronaut some sense of touch.

7. The full cost of a spacesuit is about $11 million although 70% of this is for the backpack and the control module.

8. Ever wondered how the pull of gravity is calculated between heavenly bodies? It’s simple. Just multiply their masses together, and then divide the total by the square of the distance between them.

9. Glowing nebulae are named so because they give off a dim, red light, as the hydrogen gas in them is heated by radiation from the nearby stars.

10. The Drake Equation was proposed by astronomer Frank Drake to work out how many civilizations there could be in our galaxy – and the figure is in millions.

11. SETI is the Search for Extra Terrestrial Intelligence – the program that analyzes radio signals from space for signs of intelligent life.

12. The Milky Way galaxy we live in: is one among the BILLIONS in space.

13. The Milky Way galaxy is whirling rapidly, spinning our sun and all its other stars at around 100 million km per hour.

14. The Sun travels around the galaxy once every 200 million years – a journey of 100,000 light years.

15. There may be a huge black hole in the very middle of the most of the galaxies.

16. The Universe is probably about 15 billion years old, but the estimations vary.

17. One problem with working out the age of the Universe is that there are stars in our galaxy which are thought to be 14 to 18 billion years old – older than the estimated age of the Universe. So, either the stars must be younger, or the Universe older.

18. The very furthest galaxies are spreading away from us at more than 90% of the speed of light.

19. The Universe was once thought to be everything that could ever exist, but recent theories about inflation (e.g. Big Bang) suggest our universe may be just one of countless bubbles of space time.

20. The Universe may have neither a center nor an edge, because according to Einstein’s theory of relativity, gravity bends all of space time around into an endless curve.

21. If you fell into a black hole, you would stretch like spaghetti.

22. Matter spiraling into a black hole is torn apart and glows so brightly that it creates the brightest objects in the Universe – quasars.

23. The swirling gases around a black hole turn it into an electrical generator, making it spout jets of electricity billions of kilometers out into space.

24. The opposite of black holes are estimated to be white holes which spray out matter and light like fountains.

25. A day in Mercury lasts approximately as long as 59 days on earth.

And, in case you want still more:

  • Did you know that the Blue whale’s heart is the size of a VW Beetle and that you could swim through some of its arteries?

Via whalefacts.org

  • Were you aware that hydrogen is a light, odorless gas, which, given enough time, turns into people.

Via smithsonianmag.com

  • And did you know that all of the gold mined in the history of the world would more or less fit into a 20 x 20 x 20 meter cube.

Via omgfans.wordpress.com

From Wikipedia: A total of 165,000 tons of gold have been mined in human history, as of 2009.1 This is roughly equivalent to 5.3 billion troy ounces or, in terms of volume, about 8,500 cubic meters, or a 20.4m cube.

  • Finally, consider this.  There are more atoms in a single glass of water, than glasses of water in all the oceans of the Earth.

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Bob Aronson is a 2007 heart transplant recipient, the founder and primary Bob_Aronson at Mayo Jax tight shot 2008-01-30DJH--02author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.


By Bob Aronson

cartoonIntroduction

I turn 75 on the 17th of February 2014.  That birthday brings with it mixed emotions and a flood of memories.  Most people I know have one or two birthdays in their lifetime that stand out and have a more lasting effect.  I’ve had three; when I turned 21 for obvious reasons; when I turned 50 and now this one, 25 years later.

Age 50 made me feel as though I had climbed the mountain and on the way had accomplished all that I had set out to do in life.  I stood at the summit and saw no new challenges or goals only a life of sameness and boredom.  I had no idea what was ahead but I somehow felt the excitement of life was over and that I was like a rudderless ship in storm tossed waters.  For the first time in my life I was without goals and therefore without ambition.  It was a horrifyingly depressing feeling. Recovery came only after I awakened one morning scolded myself, adjusted my attitude and set new goals.  That is when I realized 50 was just a number — not a sentence or a punishment.

25 years later I look back and realize that when I turned 50 in1989 there was a whole new life ahead of me. It was to be mixed with success, tragedy, love and a new lease on life, but in 1989 50 was only a number. Birthdays are really quite meaningless because their real significance can only be known when viewed from the future.

That means that age 75 has no meaning yet either.  It, too, is just a number.  As I approach it I feel more emotionally and intellectually alive than ever. Physically I am limited by some of the issues that affect a man of my years but for the most part I am able to do what my lifestyle demands.  If there is a change from 25 years ago it is that I reflect more on the past.  When younger I lived life and never looked back. Now I thoughtfully examine my history seeking to find reasons for my choices and what I learned as a result.  I wish I had done that earlier because having an awareness of what you’ve learned can eliminate the repetition of life’s errors.

Most notable about every birthday in the last six years is the fact that I can celebrate it only because a stranger somewhere in South Carolina decided to be an organ donor. I got his heart in 2007 without which I would have expired years ago.

The heart saved my body but my wife Robin saved my life and my sanity.  robinShe took care of me both pre and post-transplant in times where I was near death’s door, depressed and despondent.  My extended illness could not have been easy for her but despite having to move to a new city, run two businesses and take care of me her disposition never changed and her concern for my well-being never flagged.

Robin made life worth living and because of her care and love, attention and encouragement I was restored and alive again.  Her compassion, concern, optimism and good humor are contagious and I know that with her by my side nothing is impossible.  She captured my old heart and also its replacement.  I am the recipient of blessings that far exceed what I deserved.  Her influence gave me the courage and the will to heal and to develop new interests and skills and today I am a newer and I hope better person than I was.

Turning 75 is a watershed moment, a turning point of sorts when one must admit despite powerful internal forces of denial that “elderly” is a more than apt description.  I am older than the “old men” of my youth but younger than many of my friends.  I feel good, I don’t feel old nor do I think that I think old — but my body sends different signals than does my mind resulting in confusing messages being received by the control centers of my brain. “Get up and run” results in “rise slowly and shuffle.”

Early one morning, as the coffee maker gurgled and steamed and some new aches and pains emerged in new places, I put my arthritic fingers on the keyboard and the following is what magically appeared on the screen. I don’t pretend that what I wrote is particularly profound or even new but, it is what I was thinking at 4 AM on one particular day.

When you are young you should enjoy, appreciate and savor every delicious drop of life.  It is so incredibly short.  There should be no room for pessimism only joy, adventure. success and the pleasure derived from helping others.

When You Are Young, When You Are Old

bu Bob Aronson

cocoonWhen you are young your dreams have eons of time to develop and emerge from the warm confines of their incubator cocoons.  And – the dreams never die, they gently morph into something better and more spectacular.

 ·    

     When you are young you are limited only by the infinity of your imagination.  Nothing is impossible, unhealthy or fatal.  When you are young you are immortal, impervious to harm.

      When you are young “time” is but an insignificant word with no power to limit your possibilities.stopped clock

 ·    The tick and tock of life’s relentless clock is muted while the hands lie almost paralyzed and motionless pointing not to hours or minutes or seconds but rather to eternity. When you are young.

 ·      In the early spring of life you own the world with no thought given to losing those you love because time is not a factor and death is not yet part of living.

 ·      When you are young the effects of time are not visited upon our minds or bodies. As with a good wine and cheese,  aging for the young is gentle and enhances the flavor of life.

·         And when you are young you know you will see the future but it is many calendars away and you have confidence that everything will be better. 

·       When you are young the future is distant and is yours and it abounds with opportunity but…

 ·      When you are old it is seconds away – each experience is a future lived while awaiting the next.

flowersWhen you are old the future is now.  Each new day is a realization of yesterday’s future and the measurement of the quality of life is based on being remembered by those you hold dear.

·       When you are old each new day is a victory, each step a record, each breath a miracle, and each new pain is but a pinch to remind you that life still exists within these bones.

         When you are old you wonder if your life had meaning, If you helped not hindered, if you made a positive mark somewhere on someone – if the people who count still care.

·       When you are old you think about old more often than the young think about youth because senior bodies send some not so simple reminders like pain and…

·         Unlike the young who dream of blissful futures and of unbelievable opportunity the elderly think mostly about what has been, who they were and if they made a difference.

·         When you are young you meet challenges with a determination to overcome them, “your way.”  I might have been far more successful had I taken advantage of the knowledge of those who preceded me who had already invented that wheel.

 ·      When you are old you are free from the stress of wondering what will you be question marksand where you will go. You already know.

 ·      When you are old you are filled with gratitude for your many blessings and a joy for life’s victories already accomplished and you can celebrate again and again.

 ·      When you are old you are eager to share knowledge gleaned from profound life experiences but age and lack of title denies us access to settings where our thoughts can be heard and recognition is often given posthumously — I would rather hear it. 

 ·       When you are old your chest swells with pride when you think of your children and grands and great grands and you hope that someday, when they reflect that you are to them what they are to you. 

      When you are old you desperately miss those you love who live in distant places and you try to assuage the pain with memories and images and anticipation of the next contact.  Nothing is more important than family and close friends….nothing.

 ·      When you are old you achieve a wisdom gained from facing and defeating adversity and of creating and tasting success but all too often the wisdom is left unshared because no one sought to hear it.

·       One_hand animated clock fast  When you are old, you think about time and those paralyzed hands that have been miraculously cured and now speed past the numbers in a frantic race toward —-what?  When you are old.

A     And — finally, when you are gone they will speak with great emotion and affection about your fine qualities and contributions.  Words of high praise will be offered by those who mourn your loss.  Words never spoken aloud in the presence of the dearly departed.   Why?

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Bob Aronson is a 2007 heart transplant recipient, the founder and primary Bob_Aronson at Mayo Jax tight shot 2008-01-30DJH--02author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.


Introduction by Bob Aronson

Story by Bob Huck

This is a humor column.   While normally we delve into those topics that are of great interest to the donation/transplantation community once in a while we take a break to have some fun.  This story is one with which we can all relate because there’s not a one of us that hasn’t been in a similar situation.  Perhaps not quite as dramatic but similar nonetheless.

Bob Huck and I were adversaries before we became friends.  Total opposites, we began our relationship on Facebook arguing political philosophy.  Two men could not be more different in their politics.  One day, though, we found common ground.  I won’t go into detail but from that discovery came others until it was obvious there was much to discuss and much upon which we agreed.  We set our differences aside and concentrated on developing a friendship and it worked.

Bob Huck is a fascinating man with a background rich in human experience.  His narrative here is dedicated to those who have had to assemble something for their kids and I guess that’s most of us.  “So easy a child can put it together” is a commonly used phrase.  Commonly used but inaccurate. 

When you read the words, “Some assembly required” It usually means you must reinvent the wheel and you can be guaranteed that the directions were translated from a foreign language by someone who does not speak yours. “Insert part B as seen on Illustration C and also on B14 in book 2″ are common instructions that boggle the mind.  I’ll go no farther.  Here’s Bob Huck to tell you his story about assembling a simple kit for his kids.  One more note.  Bob is now fully recovered from the experience.

THE FLAT BOX  A Narrative Case History From The ICU

intensive careThe following tragic case history was dictated from the patient’s bed in an anonymous hospital intensive care unit. It has been recorded as a patient interview and except for the more profound interruptions, outlined in the parenthetical notes herein; most of the routine interruptions have been excluded as the patient’s voice was faltering and weak at best. He alternated frequently between extreme agitation and short bouts of catatonia throughout the interview process. Also, the patient would occasionally issue sounds rather than words. In such instances the sounds have been added as accurately as possible to the text in an effort to reflect the level of stress the patient was suffering at the time.

The following is the chronology of events as dictated by the patient. The interview was conducted over a period of several weeks as serious relapses followed by extended recovery periods were common.

Day One, The Morning

sunshiny morning“It was a bright Saturday morning. It started in a routine way. A quiet breakfast on the deck after sleeping in, a coffee and newspapersecond cup of coffee read the morning paper and plan for the day. Things like grass cutting, gutter cleaning and gardening were in my mind. It was a sunny day, the birds were singing, the air had the fresh smell of new summer flowers and I was looking forward to some pleasant time in the sun without much brain power required. All was well, really well.”

“My pleasant mood didn’t last.”

“About 9:30 or so there was an almost ominous knock at the door. (On hindsight I could swear I heard chains dragging across the front porch.)”

“The sound it made was a slow klunk… klunk… klunk…. I looked out the living room window on my way to the front door and noticed that the birds had stopped singing and the small, wild animals were all running for cover. The dog hid, the cat’s tail fluffed out, some of the fish floated to the top of the aquarium and the canary molted as I went toward the front door.”

“I opened the door.”

death two“There was a tall, pale boney person dressed in a long, hooded black cape framed in my front door and staring at me, not speaking. All could see of his face were those deep set, haunted eyes of someone too accustomed to witnessing horror.”

“The sun went behind a cloud.”

“I thought at first it was a Halloween promotion, but it was only June. man with blackboxThen I wondered who at the office was playing a practical joke. These fleeting, almost half thoughts, were interrupted when the person slowly reached out with both pale, bony hands and handed me a large flat box marked ‘1 of 25’.”

“He remained silent expect for his labored breathing which produced a profound groaning sound.”

boxes“I looked past the figure to the porch and sure enough there were twenty-four more large flat boxes. It was then thhearse and black horsesat I saw the caped person kind of glide away and drive slowly off in a hearse driven by four black horses.”

“The boxes contained the combination swing set, jungle gym and trampoline I had ordered for the kids from a home shopping television show. The large flat box I held in my hands, number 1 of 25, contained the instructions for putting it all together. The “Made in Madagascar” label was one of my first clues that this was not going to be a fun thing, at least for me.”

“I checked my liquor supply.”

two more bottles of gin“The two quarts of gin in my closet seemed to be more that enough, especially if I had to invite the neighbors to help me. And I had all weekend to build the thing so I thought I was in good shape.”

“Then I opened box 1 of 25.

(Note: There was a significant pause here as the patient seemed to blank out for several minutes – apparently the memory of this initial shock was too much. The dialogue continued after the bed was cleaned up and the drool was wiped off his face. It should be noted also that following most of these noted interruptions the patient’s voice was almost inaudible so some words may have been missed. We will never know for sure.)

“There were five very big volumes. Each wrapped very tightly in an overabundance of heavy gauge shrink big thick bookswrap and industrial strength duct tape and each labeled in a different language: one for English, one for French, one for German, one for Chinese and one for a language yet to be determined by the linguists at the United Nations. The so called English version was a 375 page volume entitled ‘Instructions for Assembly.’ Each flimsy page was printed in a 4 point font and single spaced. Small illustrations with strange markings and Greek lettering with metric dimensions attacked my senses.”

“I checked the liquor supply again.”

directions“The first 15 pages where on 17 by 22 inch foldouts printed on very flimsy paper. These pages contained the parts list, a lot of which was obscured by the folds in the flimsy paper. I took my first drink – well, it was approaching noon.”

(Note: The interview was stopped here as the patient began screaming and crying hysterically and the alarms on his medical monitoring units were all declaring an emergency. We were able to continue following the CPR and the injections to his heart.)

Day One, The Afternoon

“Where was I? Oh yeah, the gin exploded nicely and I felt a warm comfort. ‘After all, I have two engineering degrees, how hard could this be?’ I told myself in an effort to cover the terrible feeling of foreboding and pending doom which I could not seem to shake. But I knew I had to go on. I would not be defeated by a bunch of foreigners with a primitive printing press!”

“I began an intense study of the parts list. I noticed that there were picturesparts of each part. Most of the pictures were very small and blurred or smeared or where obscured by the folds in the flimsy paper so that similar parts looked the same. The distinction between metal screws and small bolts was blurred on the paper (as it turns out that was the easy part) so was the number of required individual parts. It seems that the printer had missed all but a few segments of the column listing how many of each part was to be in the kit.”

forklift with boxes“After a while I took a break. The eye strain was too much so I put the instructions away and started carrying the boxes, on a rented forklift, to my very large garage, which doubles as an indoor basketball court. I figured I could spread the parts out on the floor and try to match the parts to the instructions. It seemed like a good plan at the time.”

(Note: The patient started to become agitated here so the interview was interrupted briefly until his hyperventilation subsided.)

“I opened each box of the remaining twenty-four and found bags of screws, packages oplastic bags of washers, nuts, boltsf nuts and bolts, odd looking clamps, just plain weird looking washer like things   packaged in what looked like some kind of animal skin, assorted wooden and plastic pegs, large folded templates made of more flimsy paper, springs of all sizes and configurations (round, strange toolscoiled, flat, oblong and very long ones,) wheels, gears, cable clamps, assorted hairy little bugs that had invaded the packaging and a lot of strange looking items which I later determined to be tools – ‘tools of hell’ as I learned called them.”

“During the next few hours I unpacked 693 packages and 113 odd tools of hell.”

“After that I ran to the liquor cabinet and took a long pull straight from my gin bottle. It didn’t seem to have any impact on my strong desire to scream and cry. I considered taking a fist full of valium too but had been warned about mixing booze and valium so I restrained the urge and stuck to booze.”

“Now I had 693 packages and 113 odd tools of hell scattered in little man amidst boxes

\piles around my indoor basketball court.”

“I stepped back and suddenly to my horror I realized that I had not noted which box the packages came from!”

“Gack!”

(Note: The patient was able to continue after the seizure subsided.)

“Gasp, pant – I’m okay now. As I was to find out later this package, box and tool thing was critical.”

“I made an excuse to my wife and skipped dinner and went back to my instruction book to try to recover from my error. I was too nauseated to eat anyway.”

Day One, Late Evening

“During the next hours I struggled to match package to box and tool to box. At 9:30 or so I had matched 568 packages to boxes and had not yet started on the tools from hell.”

“My wife looked in on me and said she was a little worried about me. I told her it would just be a little while longer. I think she went to bed about midnight.”

“The burning in my stomach told me it was time for another drink. I needed the nourishment. full glass of ginThis time I did not fool around. I found a 12 ounce drinking glass, filled it with gin and gulped it down. That seemed to stop the uncontrolled facial tics and severe full body twitching but did not help the incredible feeling of panic that had descended on me. But I was ready to rejoin the fight. The primitives would not win! Wheeze.”

(Note: The patient became winded trying to raise his clenched fist into the air above his bed in a show of defiance. The interview continued after his brief bought with projectile vomiting and the hospital staff had applied restraints.)

“Finally, at 1:45 AM after much frantic searching, reading decoding and just wild guessing I had matched the packages to the boxes. But I seemed to have lost one package. No amount of searching helped. No amount of hopeful recounting helped. I felt like I was living in that horrible instant just before the head on collision! I felt I was now truly doomed.”

man sleeping on boxes“So, I did the only thing that made sense to me at the time, I finished the first quart of gin and passed out in a heap on top of my pile of packages. I must have slept for a few hours before the nightmares woke me up.”

 Day Two, Early Morning

 “It was 3:30 in the morning when I awakened, wiped the now dried drool from my unshaven face and staggered to my feet. I needed to finish matching the tools of hell to the boxes. I was driven.”

“My wife looked in on me again a little later to tell me that the neighbors had called to complain about all the loud swearing and banging noises coming from my garage. It was, after all, only 5:30 in the morning. I promised to mumble instead of scream and to place rather than throw the boxes and parts. I knew in my heart of hearts that while I would try, this was a hollow promise.”

more strange tools“I had my first real victory at 7:54 AM on day two. I had finished matching the tools of hell to their respective boxes. I tried to dance around in small victory circle but tripped over package number 58 of 89 from box number 12 of 25. I think it was then that I crushed the nerves at C-6 in my spine. My hands went numb and I was in pain. I took a fist full of aspirin (and a healthy slug from bottle of gin number 2 of 2) and in no time I felt like I was on the way to victory. I was told later that the internal bleeding would eventually be controllable.”

“I stepped back to survey and savor my victory. I felt a sharp burning pain huge screwas I was impaled by a large metal screw which penetrated my foot. Within an hour the flesh around the wound turned black, started to stink and show signs of necrosis. It had been one of those parts wrapped in the strange animal skin. So, I poured some gin on it, wrapped it with a greasy rag and continued my study of the plans.”

(Note: The patient interrupted the interview here and complained of pain in his now missing foot.)

“It was three hours later that I attempted the first step of the assembly process. Again, I experienced maximum chaos.”

placing screw in holeI had screw 13 1/2B12-3i from package 12 of 34 in box 2 of 25 as shown on page 2, paragraph xxiv, of the instructions in one shaking hand and a small fernoodledink as shown on page 2, paragraph xxiii in the other shaking hand. My hands seemed to shake even more wildly as I tried to insert the screw into the fernoodledink using the tool from hell shown on one of the large the foldout sheets. My hand slipped and screw 13 1/2B12-3i skittered across the floor into a crevice near a pile of packages. It was then that I experienced my first serious crying incident – there were to be many more. I removed the fernoodledink from my abdomen with one to the tools from hell, stuffed an old rag into the wound and began searching for the screw. It was an hour later when I realized victory again. I had found the screw. My second attempt at inserting the screw into the fernoodledink worked. Again, I danced, that is limped, around in a little victory circle. I was on fire to continue the challenge.”

(Note: There was a faint smile on the patient’s face as he recounted this part of his story. The interviewer was not to see further smiling incidents.)

“It was early afternoon of day two and I knew the gin would not last and that I would not finish this assembly before Monday morning in time to go to work. So I took a break,everclear left a message on the office answering machine – I noticed that my voice sounded like I was sobbing, but I paid no attention – and went to the liquor store for more gin and a little Everclear for backup.”

“The clerk noticed the blood trail I left on the floor. It seems the necrosis on my foot was a little more advanced than I thought. He covered his nose and averted his eyes in an effort to control the gagging noises he was making.”

car in bushes“When I returned to my driveway I was going a little too fast and drove across my newly landscaped lawn, ran over some bushes and crushed my new sprinkler system before skidding to a stop at or near the garage door – I think I heard a crashing noise. I opened the Everclear while I was still sitting in the car and took a long deep drink from the bottle. This time there was real pain in my stomach but I kept it down. I found two slightly soggy, semi-crushed and moldy cheese crackers wedged into the bottom of the glove box and ate them – I needed the nourishment. I was ready to go again. The pain from my abdominal wound subsided but my hands were still numb.”

(Note: The patient began to loose track of time here. He was not really certain about this time frame. The interviewer has estimated the chronology from here on.)

Day Two, Afternoon

“After some foggy looking around I found the next step in the  complex directions instructions package. It was the same old story: hysterical crying followed by a two hour search through the packages and tools from box 2 of 25. The crying stopped when I found metal screw (or was a bolt?) number 1265-76Aix C and tool from hell 45 of 113. My next victory seemed almost hollow. I had found the gizmogazelschpatzen which connected to the fernoodledink using screw number 1265-76Aix C and tool from hell 45 of 113.”

“As I pushed the gazelschpatzen gently into the fernoodledink I noticed that more force was required. So I pushed harder. Nothing happened. I put the assembly in a vice and nothing happened. I tried a bigger vice, same result. I then rigged up a 10 ton hydraulic jack to push the gazelschpatzen into the fernoodledink using screw number 1265-76Aix C and tool from hell 45 of 113. I thought I heard it snap into place just before the whole assembly exploded violently into lots of shrapnel. I was crying again, as I removed screw number 1265-76Aix C from deep in my left eye. It was a good thing it was not my right eye. I am right eye dominant you know.”

man with eye bandage“By now my screams had become high pitched, rasping gasps so nobody heard me as I used an old tire patch and some crazy glue to fix my left eye.”

“I began to loose track of time about here in the process. I think I passed out sometime during the late evening.”

 

Sometime Later

“As I came around for the first time I remember seeing the EMT through aparamedics attecn man kind of out of focus haze and hearing my wife sobbing in the background while they treated my more immediate hemorrhaging. I noticed a shoe on the floor with a foot in it. I wondered whose it was. I recall fighting the EMT’s to the point where they had to apply restraints. I did not want to go the hospital. I wanted to finish the job! I had to beat the primitives! Gurgle.”

man with head injuryMy last conscious recollection after being loaded in the ambulance was hearing an EMT screaming into his microphone over the siren noise, ‘I’ve got a Flat Box Syndrome, in shock, suffering blood lose, alcohol poisoning, and serious necrosis. He is not able to respond to oral commands and appears to have no feeling from C-6 downward and is blind in his left eye from a wound I have never seen before. His remaining pupil is dilated and not responsive. I can’t seem to remove a variety of strange tools which have penetrated his upper trunk in several locations. He also appears hazmat teamto be suffering from starvation and scurvy. We’re going to need the entire emergency room team to pull this one out! Also send a hazmat team. The cleanup here is going to take a long time, be sure to include biohazard suits! Better alert the terrorism units too!’ Funny how I remember those details so clearly from my out-of-body experience.”

 

Sometime Even Later

(Note: Nobody is sure how long the patient was unconscious after he passed out and before he was discovered. His wife thought he had left town on a business trip so the best we can estimate is that he was lying in the wreckage for about 3 days before the stench of rotting flesh attracted a neighbor’s attention.)

“Tghost at foot of bedhe next thing I remember is struggling to recover from the coma. It was as if everything was happening in slow motion. I was doing pretty well but then the memories came back and the nightmares began: the figure at my door on that Saturday morning seemed to be standing at the foot of my hospital bed beckoning me to come with him; large, ugly volumes of instructions were falling out of the sky and crushing me under a huge pile of paper; small fernoodledinks were swarming over me and a giant gazelschpatzen boiled up out of the ground and attacked me. It was horrible!”

“Sob!”

(Note: The excessive screaming brought the orderly and the session was stopped briefly while the restraints were tightened.)

“Whimper, then one day as I was coming out of it again I heard a doctor say,black boxes ‘Poor soul. Another flat box case. That’s 231 this month alone. We must do something about this flat box thing! Oh! Will the inhumanity never end? Get my senator and congressman on the phone. Call 60 Minutes. Call Ralph Nader and the ACLU. Get some truly horrid, stomach wrenching, vivid red and yellow color photos for publication on the Flat Box Syndrome website. It’s time to take action!’”

“I struggled mightily for the next several weeks to recover. I joined a flat box recovery group and shared my story with other victims. I even sponsored another victim for a while. I faced my fears and actually touched one of the tools of hell recovered as part of the clean up effort at my garage. It helped that I was blind in one eye and could not feel what I was touching.”

“I have a message for America. I am begging you! Please record this! It is a matter of national security!”

(Note: The interviewer, along with several internationally recognized medical reviewers, has become convinced that the Flat Box Syndrome is indeed cause for international alarm and needs to be brought forward as a social issue on a par with any other life threatening disease or potential terrorist attack. Therefore, the following was recorded exactly as dictated by the patient and may have been his last conscious expression.)

“People of the world, think before you – wretch, gasp – open thedeath door of your home to dark figure in a black, hooded – wheeze – cape carrying one or more flat boxes! America awaken! Everyone – choke – is vulnerable to this – gag – horrible plague! Don’t let – gurgle – it happen to you!”

 (Note: The patient lost consciousness again and was rushed into surgery.)

 This is a true story. It was recorded for posterity and to give warning as well as to protect the innocent.

-0-

Bob Huck – Bio

Bob Huck graduated from the Pennsylvania State University and conducted post graduate studies at Dartmouth College.

He has now retired from his career as a civil engineer (although he claims the civil part to come into question from time to time.) His career spanned most of the geography of North America and some of South America. But his specialty and passion was arctic engineering and remote site construction which kept him living and busy in Alaska beginning in 1963 and ending in 2000.

 He has written two books. “Alaska Letters” was written in 2013 and is a compilation of stories from his adventures in the arctic. And in 2011 he wrote  “Winnifred Mason Huck, Member 67th Congress 1922-1923; Prisoner #1558 1925” The latter is the biography of his grandmother who was the third woman to be elected to Congress, the first mother to be elected and the first woman to preside over either house of Congress.

 He has now settled down in Charlotte, North Carolina and when it snows there on rare occasions he threatens to move to the desert. And when he is not threatening to move to the desert he enjoys golf and writes things.

 -0-

Bob informal 3Bob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.


Introduction by Bob Aronson

Information provided by Transplant Living

and

The National Marrow Donor Program

cartoonBecause there is a shortage of organs the odds of getting a transplant are not good, There are a lot of factors that influence whether any one person will get an available organ and one of them is the ability to pay.  Unfortunately our system is heavily weighted toward those who either have insurance or an independent ability to finance the surgery and the aftercare. A transplant and the aftercare and medication for the first year after the surgery can cost as much as a million dollars.  Sometimes even those with the ability to pay need some assistance. 

 unostransplant living

Transplant Living is a project of the United Network for Organ Sharing (UNOS), a nonprofit organization that maintains the national Organ Procurement and Transplantation Network (OPTN) under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services.

UNOS is the private government contractor that facilities all organ transplants in the United States.  The information in his blog is copies from their website which provides a wealth of information about the entire donation/transplantation process.  It is one of the most comprehensive resources available.  Bob’s Newheart thanks them for compiling this information and for its willingness to share it with you via our blog. 

Funding Sources

Most transplant programs have social workers and financial coordinators who can help you with the financial details of your transplant. Depending on the structure at your center, one or both will help you develop a strategy.

Common funding sources to help with the costs of transplants include:

 Note: This information is only a brief summary and is not intended to provide complete information. Ask your transplant financial team and your insurance provider or employee benefits officer for the latest information or help.

Private Health Insurance

You or your family may have health insurance coverage through an employer or a personal policy. Although many insurance companies offer optional coverage for transplant costs, the terms and benefits of insurance vary widely. Read your policy carefully and contact your insurance company if you have questions about how much of your costs they will pay, including your lab tests, medications and follow-up care after you leave the hospital.

Some insurance questions to consider:

  • Is my transplant center in-network with my insurance company?
  • If my transplant center is out-of network, do I have an out-of-network benefit for transplant?
  • What deductibles will apply?
  • What are my co-payments for doctor visits, hospitalizations and medications?
  • Does my plan require prior authorization?
  • Who needs to get prior authorization?

Regardless of how much your insurance covers, you are responsible for any costs not paid by your insurance, unless you have made other arrangements. If you are responsible for paying any or all of your insurance premiums, be sure to pay them on time so that you do not lose your insurance.

Transplant center social workers and financial coordinators can also help you with the information you need. They can contact your insurance company to check on your benefits and explain your coverage in more detail.

 

Experimental and Investigative Procedures

If your transplant center asks you to be involved in any experimental procedures or studies, be sure to ask your center or insurance company if your insurance policy will cover the payment. It is important to know that you do not have to agree to be involved in any experimental procedures or investigational studies. If you still have questions, contact your employer’s benefits office or your state insurance commissioner.

Tips

  • Keep copies of all medical bills, insurance forms and payments (or canceled checks).
  • Ask your insurance company about pre-certification or using a specific provider.
  • Follow the rules set forth by your insurance company so that your benefits will not be decreased.
  • Always keep a log (who you talked to, date and time and questions answered) of your conversations with anyone in the hospital’s billing office or your insurance company.
  • Make sure to keep your transplant center informed about your insurance, especially if you have more than one insurance company.
  • For more helpful tips, see the Financial Q&A.

COBRA Extended Employer Group Coverage

If you are insured by an employer group health plan and you must leave your job or reduce your work hours, you may qualify for extended coverage through COBRA (Consolidated Omnibus Budget Reconciliation Act of 1985). This federal law requires certain group health plans to extend coverage for 18 to 36 months after benefits end. This requirement is limited to companies employing 20 or more people. You pay the full cost of the premiums for the group health plan. Learn more by contacting your employer’s benefits office or visit the federal Department of Labor Web site >

Health Insurance Marketplace

Also known as the health insurance “exchange,” the marketplace is a set of government-regulated and standardized health care plans in the United States. Open enrollment starts October 1, 2013. Coverage starts as soon as January 1, 2014. Learn more at www.healthcare.gov >

Medicare

Medicare is a federal health insurance program available to people who are 65 or older, disabled or have end stage renal disease (ESRD).

Medicare, like most private insurance plans, does not always pay 100% of your medical expenses. In most cases, it pays hospitals and health providers according to a fixed fee schedule, which may be less than the actual cost. You must pay deductibles and other expenses. Medicare currently offers coverage for transplant of:

  • kidneys
  • kidney-pancreas
  • pancreas, either after a kidney transplant or for certain indications

If you already have Medicare due to age or disability, Medicare also covers other transplants:

  • heart, in certain circumstances
  • lung
  • heart-lung
  • liver, including transplants necessitated by hepatocellular carcinoma (HCC)
  • intestines

To receive full Medicare benefits for a transplant, you must go to a Medicare-approved transplant program. These programs meet Medicare criteria for the number of transplants they perform and the quality of patient outcomes.

If you have questions about Medicare eligibility, benefits, or transplant programs, contact your local Social Security office, or Medicare at 800-633-4227 or www.medicare.gov.

Medicare Prescription Drug Plans

Medicare Part D covers costs for prescription drugs. To get this coverage you must choose and join a Medicare drug plan. For more information call (800) MEDICARE ([800] 633-4227)/ TTY: (877) 486-2048 or visit www.medicare.gov (click on Medicare Basics >Part D).

MediGap Plans

Many people on Medicare also choose to buy a private “Medigap” policy to pay for costs not covered by Medicare. Check with a local insurance agent or go to www.medicare.gov (click on Resource Locator>Medigap).

State Health Insurance Assistance Program

The State Health Insurance Assistance Program (SHIP) is a national program that offers one-on-one counseling and assistance to people with Medicare and their families. Your transplant social worker or financial coordinator can provide information on your states SHIP program, or learn more now >

Medicaid

Medicaid is a federal and state government health insurance program for certain low-income individuals. Each state determines criteria for:

  • eligibility
  • benefits
  • reimbursement rates

Most Medicaid programs only cover transplants performed in their state, unless there are no centers that can transplant that organ. For more information, contact your local human services department or the financial coordinator at your transplant center.

Charitable Organizations

Charitable organizations offer a range of support, from providing information about diseases, organs and transplants, to encouraging research into these diseases and treatments.

Also, although it is very unlikely that one organization can cover all of the costs for an individual patient, some organizations provide limited financial assistance through grants and direct funding. For example, an organization may only be able to help with direct transplant costs, food and lodging or medication costs.

Advocacy Organizations

Advocacy organizations advise transplant patients on financial matters. If you agree to a financial arrangement with an advocacy organization, it is important to make sure that the funds are available in a manner that suits your needs. You may even want legal assistance in reviewing a written agreement before signing. Your bank can also help you review the arrangement.

Every advocacy organization should be able to provide supporting information and background documentation to prove they are legally recognized to help those in need. Brochures and other background information should never serve as substitutes for these documents. Ask advocacy organizations to provide you with copies of the following documents:

  • a current federal or state certification as a charitable, non-profit organization
  • a current by-laws, constitution and/or articles of incorporation
  • a financial statement for the preceding year, preferably one that
  • an audit report from an independent organization
  • references

Fundraising Campaigns

Public fundraising is often used to help cover transplant expenses not paid by medical insurance. Before you begin seeking donations, it may be necessary to check with your city/county governments, legal advisor or transplant team about the many legal and financial laws and guidelines.

If you decide to use public fundraising as a way to cover your expenses, you may want to contact local newspapers, radio or television stations to help support your cause. In addition, try to enlist the support of local merchants and other sponsors to promote or contribute to your events. Your friends, neighbors, religious groups, local chapters of volunteer or service groups and other community groups may also be able to help.

It is also very important to understand that the funds you raise only be used for your transplant-related expenses and donated money sometimes has to be counted as taxable income. In cases in which money must be counted as income, you may lose your Medicaid eligibility.

TRICARE (formerly Champus) and Veterans Administration

Government funding for families of active-duty, retired, or deceased military personnel may be available through TRICARE. TRICARE standard may share the cost of most organ transplants and combinations. TRICARE also covers living donor kidney, liver, and lung transplants. Patients must receive pre-authorization from the TRICARE medical director and meet TRICARE selection criteria. Pre-authorization is based on a narrative summary submitted by the attending transplant physician. For more information about TRICARE, contact the health benefits advisor at your nearest military health care facility, call the TRICARE Benefits Service Branch at (303) 676-3526 or learn more now >
 

The National Marrow Donor Program is also a resource for information on where to get financial assistance.  They offer this advice.

be the match marrow dnor programTransplant insurance coverage.  These items may not be covered by your insurance.  Check to be sure.

You or someone you know might need an organ/tissue transplant you must show an ability to pay before you will be accepted by most transplant centers.  Most people rely on insurance but insurance policies differ from one company to the next.  Be sure about what your policy covers, talk to your plans benefits manager or to the hospital social worker to get a clear idea of what is covered.

It is very likely that the following items are NOT COVERED by your health insurance company.  This information was generated by the National Marrow Donor Program.  http://tinyurl.com/b8pb4s4 

You may want to ask if the following items are covered by your specific health insurance plan: 

  • Testing to find a matched unrelated or related donor
  • Donor costs
  • Transplants for a rare diagnosis
  • Travel and lodging expenses to and from the transplant center for patient and/or caregiver
  • Food costs while staying near transplant center
  • Parking costs
  • Prescriptions for post-transplant discharge or outpatient medications
  • Office visits coverage
  • Home health care
  • Psychiatric coverage
  • IV injections
  • Clinical trials  
  • Sperm/egg storage
  • Insurance premiums when patient is not employed
  • Fees for post-transplant home preparation (carpet and drapery cleaning, replacing filters on heaters, air conditioning cleaning)
  • Change in cost of living after transplant (different food needs, for example)
  • Child-care costs

If your insurance does not cover all of your costs related to transplant, you may be eligible for Financial Assistance for Transplant Patients.

Financial assistance for transplant patients

Financial assistance resources may be available to you, if your insurance does not cover all of the costs related to your bone marrow or cord blood transplant. Your transplant center social worker will help you find financial aid that is available through Be The Match® and other organizations.

Planning for transplant costs

If insurance does not cover all of the costs related to your bone marrow or cord blood transplant, financial assistance resources may be available to you.

Applying for financial aid programs may include many steps. Your transplant center social worker will help you find financial aid that is available through Be The Match® and other organizations, and help you complete the applications.

Be The Match financial aid programs

Be The Match financial assistance is available for patients who are searching for a donor on the Be The Match Registry®, or who have had a bone marrow or cord blood transplant with a donor from the registry.  Financial assistance from these programs can help you pay for the cost of a donor search and for some post-transplant expenses. Talk with your transplant center financial coordinator to see if you are eligible for these programs.  

*Funds for financial aid programs are available through the generous contributions to Be The Match.

Transplant costs worksheet can help you calculate the transplant costs not covered by insurance.

Search Assistance Funds

Search Assistance Funds can help pay the costs not covered by insurance for searching Be The Match Registry of unrelated adult donors and cord blood units. If you are eligible, Be The Match will notify the transplant center. This allows your donor search process to begin as quickly as possible.

To be eligible:

  • You are searching for an unrelated donor or cord blood unit from the Be The Match Registry.
  • Your transplant center has determined you do not have enough insurance coverage to cover the donor search costs.
  • You must be a U.S. resident.

Transplant Support Assistance Funds

Transplant Support Assistance Funds help pay for some costs during the first 12 months after transplant that are not covered by your insurance. These funds can be helpful with costs related to:

  • Temporary housing, if you and your family or caregiver need to relocate for the transplant.
  • Food for you and your family or caregiver.
  • Parking and gas for ground transportation.
  • Co-pays for prescriptions and clinic visits.

To be eligible:

  • You have had a transplant using an unrelated donor or cord blood unit from the Be The Match Registry.
  • You must be within the first 12 months of your transplant.
  • You meet financial eligibility criteria.
  • You must be a U.S. resident.

Explore BMT Logo

ExploreBMT is a resource to connect you and your family with financial support and information from organizations you can trust.

Other financial aid programs

There are several more financial aid programs available to help you with your transplant costs. Ask your transplant center social worker to help you identify and apply for programs that you may be eligible for, including Be The Match financial aid programs.

Fundraising

Even if you have coverage for transplant, fundraising is a good path to take to assist with costs not covered by insurance, such as prescriptions and temporary housing. It is also a great way for your family and friends to be involved with your care. 

Asking for help is perfectly okay, and you may find that many of your loved ones will step forward to support your fundraising campaign. If you do decide to raise funds, it is best to do it before your transplant, as the money raised will help you budget for your medical expenses.

These organizations can help you plan your fundraising campaign:

Children’s Organ Transplant Association (COTA)

Help HOPE Live (Formerly the National Transplant Assistance Fund (NTAF)

National Foundation for Transplants

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Bob informal 3Bob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.


By Bob Aronson

cartoonTo most of us the abbreviations and phrases used in the medical world are another language from another planet.   Few understand what is written on the prescription they take to the pharmacy just as they don’t always understand the discharge instructions they get from a hospital or an emergency room.

To save time and clarify communication internally medical professionals have developed a very special system of codes, abbreviations and phrases that are quite exact in their meaning.  Unfortunately these same professionals often forget that the rest of us don’t have their training, education and expertise and use this “internal” language on patients who are often left dumbfounded because of a reluctance to ask for clarification.

The picture to the right is a real prescription and when you see it for the first time you probably are struck by the sameillegible prescription question most of us have, “How on earth does the pharmacist read that mess?”  Well,  the answer is that pharmacists understand the code words, phrases and abbreviations used by physicians but, they get stumped just like you do so they call and ask for clarification.   You should do that, too.   If you aren’t perfectly clear about what your medicine is and what it does you should seek clarification  first from your doctor and then from the pharmacist.

The list of common medical terms below was taken from several sources and I have tried to simplify it as best I could but should you be confronted with these terms or others not listed here that you still don’t understand don’t be afraid to ask and ask again until you have a perfectly clear explanation.  After all, it is your health, your body and your life and the medical people owe you a clear explanation of your condition, your diagnosis, prognosis and treatment plan including the medicine they have prescribed and what it does.

Miscommunication can be deadly.  You owe it to yourself to ask a lot of questions.  If you have done that and find that after processing what you heard you have more questions you should call your physician’s office for clarification. Do the same with your pharmacist or any other medical professional with whom you have contact.

Below is a list of the most common medical terms and abbreviations.  Note…you will see a mixture of upper and lower case entries.  These are not typos.   It is the way they are actually written.

Common prescription terms and abbreviations

AD: up to (defining a limit.)

BUSS: Inside the cheek

C: (With a straight line over the top ): With

cf: With food

h.s.: at bedtime

bid: twice a day

tid: three times a day

qd: daily

o.p.d.: once per day

q.a.d.: every other day

q.i.d: four times a day

sig: write on label

SL: sublingually, under the tongue

WF : with food

Terms and abbreviations used in prescriptions and elsewhere

a.c.: Before meals. As in taking a medicine before meals.

Ad lib At liberty. For example, a patient may be permitted to move out of bed freely and orders would, therefore, be for activities to be ad lib.

AKA: Above the knee amputation.

Anuric: Not producing urine.  That means the patient may need dialysis.

Bibasilar: At the bases of both lungs. For example, someone with pneumonia in both lungs might have abnormal  breath sounds.

BKA: Below the knee amputation.

BMP: Basic metabolic panel blood test.

BP: Blood pressure.. Blood pressure is one of several vital signs.

BSO: Bilateral salpingo-oophorectomy.  The removal of both of the ovaries and adjacent Fallopian tubes often part of a total abdominal hysterectomy.

C/O: Complaint of. The patient’s expressed concern.

cap: Capsule.

CBC: Complete blood count

CC: Chief complaint. The patient’s main concern.

cc: Cubic centimeters.

Chem panel: Chemistry panel. A comprehensive screening blood test to determine the status of the liver, kidneys and electrolytes.

COPD: Chronic obstructive pulmonary disease.

CVA: Cerebrovascular Accident (stroke)

D/C or DC: Discontinue or discharge. Adoctor will D/C a drug or DC a patient from the hospital.

DM: Diabetes Mellitus.

DNC, D&C, or D and C: Dilation and curettage.  Widening the cervix and scrapping with a curette for the purpose of removing tissue lining the inner surface of the uterus.

DNR: Do not resuscitate. This is a specific order not to revive a patient artificially if they succumb to illness. If a patient is given a DNR order, they are not resuscitated if they are near death and no code blue is called.  Usually requested by the patient or family.

DOE: Dyspnea on exertion. Shortness of breath with activity.

DTR: Deep tendon reflexes. These are reflexes that the doctor tests by banging on the tendons with a rubber hammer.

DVT: Deep venous thrombosis (blood clot I large vein).

FX: Fracture.

H&H: hemoglobin and hematocrit.  When the H & H is low, anemia is present.

H&P: History and physical examination.

h.s.: At bedtime. As in taking a medicine at bedtime.

H/O or h/o: History of. A past event that occurred.

HA: Headache.

HTN: Hypertension (high blood pressure)


I&D: incision and drainage.

IM: Intramuscular.. This is a typical notation when noting or ordering an injection (shot) given into muscle..

IMP: Impression. This is the summary conclusion of the patient’s condition by the healthcare practitioner at that particular date and time.

In vitro: In the laboratory.

In vivo: In the body.

IU: International unit

JT: Joint

K: Potassium. An essential electrolyte frequently monitored regularly in intensive care.

KCL: Potassium chloride.

LBP: Low back pain. LBP is one of most common medical complaints.

LLQ:: Left lower quadrant.

LUQ:: Left upper quadrant..

Lytes: Electrolytes (potassium, sodium, carbon dioxide, and chloride).

MCL: Medial collateral ligament.

mg: Milligrams.

ml: Milliliters.

MVP: Mitral valve prolapse.

N/V: Nausea or vomiting

Na: Sodium. An essential electrolyte frequently monitored regularly in intensive care.

npo: Nothing by mouth. Often ordered when a patient is about to undergo surgery requiring general anesthesia.  It means no food or drink.

O&P: Ova and parasites.  Stool O & P is tested in the laboratory to detect parasitic infection in persons with chronic diarrhea..

O.D.: Right eye.

O.S.: Left eye.

O.U.: Both eyes.

ORIF: Open reduction and internal fixation such as with the orthopedic repair of a hip.

P: Pulse. Pulse is recorded as part of the physical examination. It is one of the “vital signs.”

p.o.: By mouth. From the Latin terminology per os.

p.r.n.: As needed. Example a pain killer may be taken only when the patient has pain or “as needed.

PCL: Posterior cruciate ligament..

PERRLA: Pupils equal, round, and reactive to light and accommodation.

Plt: Platelets, one of the blood forming elements along with the white and red blood cells.

PMI: Point of maximum impulse of the heart when felt during examination, as in beats against the chest.

q2h: Every 2 hours. As in taking a medicine every 2 hours.

q3h: Every 3 hours. As in taking a medicine every 3 hours.

qAM: Each morning. As in taking a medicine each morning.

qhs: At each bedtime. As in taking a medicine each bedtime.

qod: Every other day. As in taking a medicine every other day.

qPM: Each evening. As in taking a medicine each evening.

R/O: Rule out. Doctors frequently will rule out various possible diagnoses when figuring out the correct diagnosis..

REB: Rebound, as in rebound tenderness of the abdomen when pushed in and then released.

RLQ: Right lower quadrant. The appendix is located in the RLQ of the abdomen.

ROS: Review of systems. An overall review concerns relating to the organ systems, such as the respiratory, cardiovascular, and neurologic systems.

RUQ: Right upper quadrant. The liver is located in the RUQ of the abdomen.

s/p: Status post. For example, a person who had a knee operation would be s/p a knee operation.

SOB: Shortness of breath.

SQ: Subcutaneous.. This is a typical notation when noting or ordering an injection (shot) given into the fatty tissue under the skin, such as with insulin for diabetes.

T: Temperature. Temperature is recorded as part of the physical examination. It is one of the “vital signs.”

T&A: Tonsillectomy and adenoidectomy.

tab: Tablet

TAH: Total abdominal hysterectomy..

THR: Total hip replacement.

TKR: Total knee replacement.

UA or u/a: Urinalysis.. A UA is a typical part of a comprehensive physical examination.

URI: Upper respiratory infection like sinusitis or the common cold

ut dict: As directed. As in taking a medicine according to the instructions that the healthcare practitioner gave in the office or in the past.

UTI: Urinary tract infection.

VSS: Vital signs are stable. This notation means that from the standpoint of the temperature, blood pressure, and pulse, the patient is doing well.

Wt: Weight. Body weight is often recorded as part of the physical examination.

Commonly used prefixes and suffixes

http://www.bubblews.com/news/2020191-what-did-the-doctor-just-say-some-common-medical-terms-prefixes-and-suffixes

Prefixes

1. “Angio…”
Related to the blood vessels
(Angioplasty, etc.)

2. “Lobo…”
Relating to either the brain or lungs.
(Lobotomy, etc.)

3. “Nephro…”
Relating to the kidneys.
(A Nephrologist is a doctor who specializes in medical conditions impacting the kidneys.)

4. “Hyster …”
Relating to the uterous.
(Hysterectomy, etc.)

5. “Gastro …”
Relating to the atomach
(Gastroenteritis, etc.)

6. “Myo…”
Related to muscle tissue.

6. “Arthr…”
Related to the joints.
(Arthritis, arthoscopic surgery, etc.)

7. “Encephal…”
Related to the brain
(Encephalitis, encephlitiform activity, i.e. seizures.)

Suffixes

1. Something or other… “itis”
Whatever the ‘something’ is is inflamed and possibly infected.
(Pancreatitis, appendicitis, tonsilitis, etc.)

2. “…ectomy”
The removal of whatever body part precedes it.
(Appendisectomy, tonsilectomy, hemorrhoidectomy, hysterectomyetc.)

3. “… otomy”
A surgical incision into whatever precedes it.

4. “… scentesis”
The surgical puncturing of something – deliberately
(Amnioscentesis to draw fluid from the uterine sac to check on the condition of a fetus.)

5. “…septic”
From a Greek word meaning putrefaction (rotting), as “spsis” it is used to refer to an infection of the entire system, particularly through the circulatory (blood) system and is considered quite seious.
The opposite, of course, is “Antiseptic”… the purification of something from germs and bacterial contamination.

6. “… ostomy”
The putting a hole in something in the hopes that it will help it function better.
(colonostomy)

7. “… plasty”
To modify or reshape.
(A “nose job” is a rhinoplasty, etc.)

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Bob informal 3Bob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.


doctors prefer our drugs

Dr. Jon W. Draud, is the medical director of psychiatric and addiction medicine at two Tennessee hospitals.  It is likely that he is well paid for his administrative and medical expertise but according to ProPublica an investigative Journalism group the 47-year-old Draud has earned more than $1 million in the last four years for delivering promotional talks and consulting for seven drug companies and he’s not alone.  Hundreds, perhaps thousands of physicians all over the country are also on the payroll of drug companies.

Look at these headlines:

Colorado doctors take big speaking fees from drug companies, data show

http://www.denverpost.com/ci_22870273/colorado-doctors-take-big-speaking-fees-from-drugstethescope on mound of money

By Michael Booth and Jennifer Brown
The Denver Post

Posted:   03/26/2013 12:01:00 AM MDT

Colorado doctors who teach at major hospitals and universities continued to pocket hundreds of thousands of dollars in speaking fees from drug companies in 2012, sidestepping the institutions’ new restrictions on the lucrative payments.

Many private physicians also accepted speaking fees from pharmaceutical firms despite a spotlight on the practice, justifying their payouts as educational contacts with their peer

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I-Team: Nevada Doctors Accept Millions from Drug Companies

http://www.8newsnow.com/story/24001912/nevada-doctors-accept-millions-from-drug-companies

Posted: Nov 18, 2013 4:01 PM EST Updated: Nov 19, 2013 3:10 PM EST

By George Knapp, Chief Investigative Reporter -

By Matt Adams, Chief Photojournalist

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Does your doc get money from drug companies?

http://thechart.blogs.cnn.com/2010/10/19/does-your-doc-get-money-from-drug-companies/

There has long been mystery surrounding how much, and to whom, drug companies give money.

propublica logoNow, ProPublica has put together all of these disclosures that have been appearing recently on the Web. The resulting project, called Dollars for Docs reveals that about $258 million worth of compensation from seven companies went to health care providers in 2009 and 2010.

The team of investigative journalists found that 17,700 providers received such payments. Most of the money went to physicians, but nurses and pharmacists were also included, ProPublica said. The reasons for this money included speaking, consulting, business travel and meals.

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So, what’s wrong with a physician getting paid to give speeches?  Well, for the most part nothing unless the payment causes the physician to prescribe one drug or device over another because of it.  There is nothing illegal about the practice but, is it ethical?    What it boils down to is this.  Does the physician always do what’s best for the patient or what’s best for his or her benefactor?  An example:  If Bristol-Meyers Squibb makes a high blood pressure medication that costs $25 a tablet and Abbot Labs makes one that sells for $2 each and both medications do the same thing does the physician prescribe the $2 pill or the more expensive one from the company that pays him an extra $100,000 a year to speak on their behalf?  That’s the point of our blog today and we are going to return to it shortly but first some background.

Becoming a physician is expensive and that expense can force some into finding creative, albeit ethically questionable waysmedical  school debt cartoon in which to pay down their medical school debt.

According to MedPage Today http://tinyurl.com/n22k6dz The average debt facing graduating medical students is about $156,000.  The Wall Street Journal worst case scenario for med school tuition debt is a whopping $550,000 tab run up by a family practitioner http://tinyurl.com/m5gcov6  That huge debt is the result of her deferring loan payments while she completed her residency, default charges and relentlessly compounding interest rates. Among the charges: a single $53,870 fee for when her loan was turned over to a collection agency.

While the debt appears to be outrageous it is made a little easier to handle when you consider the earning power of physicians.  .A Time Magazine survey of 24, 216 physicians across 25 categories showed doctors’ earnings ranged from about $156,000 a year for pediatricians to about $315,000 for radiologists and orthopedic surgeons. The highest earners — orthopedic surgeons and radiologists — were followed by cardiologists who earned $314,000 and anesthesiologists who made $309,000 http://tinyurl.com/7jl8v6a. But remember, these are averages.  Some Orthopedic surgeons earn over $625,000 a year, some neurosurgeons earn nearly as much while many pediatricians earn over $200,000.  http://tinyurl.com/78lkdtg

The lowest earning doctors are family physicians and pediatricians and in both professions .there is a shortage that is getting worse.  Witness the increasing use of Physicians assistants and Nurse Practitioners who can now perform some of the functions traditionally handled only by licensed physicians.

It is bad enough that you begin a career a quarter of a million dollars in debt but now add on malpractice insurance and we are looking at some seriously large payments.

It is estimated that your physician spends 10 cents on malpractice insurance from every dollar you pay for health care, according to handfull of moneyDiana Furchtgott-Roth, a senior fellow at the Manhattan Institute. http://tinyurl.com/mhk6p3n Furchgott-Roth notes that premiums vary from $20,000 annually in low-cost states to $200,000 annually in high-cost states. According to a survey published November 2011 in “Modern Medicine,” family and general practitioners paid premiums of $12,100, and pediatricians’ premiums averaged $11,800. OB-GYNs paid an average of $46,400, and plastic surgeons reported median premiums averaging $30,000.

A 2010 survey by the “Medical Liability Monitor” compared premiums for three specialties in various areas of the country. Internists in Dade County, Fla., paid $48,245 annually in 2010, while general surgeons paid $192,982. In comparison, internists in the lowest-cost areas of California paid only $3,200 and general surgeons had the lowest premiums in Minnesota at $11,306 annually. OB-GYN premiums varied from a low of $13,400 in the lowest-cost areas of California to a high of $204,864 in the counties of Nassau and Suffolk in New York.

The new physician will not be able to earn much money during his five years of residency training either. The average salary for a surgical resident is about $56,000 per year, which will force him to defer paying the principal on his loans while the interest keeps on accruing that’s how the physician in the earlier Wall Street Journal story piled up over a half million dollars in debt.

So now that we’ve established that it costs a lot to become a physician we piled on and added the cost of malpractice insurance.  The combination of student loans and insurance payments becomes for some, an unbearable burden even with a good salary. That leaves us with the question, how do you pay all that debt and still have something left to live on?  Well, the answer is simple and physicians don’t have to look too far to find some extra income.

Enter center stage — Big Pharma.   This is where the huge pharmaceutical companies can be the answer to many young physicianbig pharmas’ prayers.  Once they have MD after their name and maybe a few other medical credentials their opinions become worth a lot of money. If Bob Aronson endorses a medication it is pretty meaningless but if Dr. Bob Aronson endorses it people take notice and if you add Dr. Bob Aronson from (name any famous clinic or hospital) the credibility is even higher.

Doctors are still among the most trusted people in America.  A December 2012 Gallup poll ranked Physicians third on the list just behind nurses and pharmacists http://tinyurl.com/cz7orar When Doctors speak, people listen and more importantly, they believe what they hear.  That believability, sincerity, and credibility, coupled with the Marcus Welby or Grey’s Anatomy image of super compassionate service makes doctors the ideal spokespersons for almost any company.

Most news stories today that address the issue focus on the big pharmaceutical  companies like Bristol-Meyers Squibb, Eli Lilly and Abbot Labs and they do spend a lot of physician endorsements but so do the little pharma companies, those with but one product for which they are trying to get FDA approval.  They spend hundreds of thousands of dollars of investor’s money to get physician endorsements.  I know because I worked as a communications consultant to many of them myself and travelled the country working with the docs on just how to phrase their endorsements.

Often a drug company will pay first class airfare to fly several physicians in from all over the country for a meeting.  Each doc gets a limo from the airport to the hotel, a very nice room, good meals a handsome stipend and professional help on how to endorse the company’s product.  If the issue is big enough and the physician is important enough the spouse might be invited as well and the trip could take three or four days and include several rounds of golf at exclusive clubs and perhaps a short meeting every day aboard a yacht .that is on a week-long cruise..

Often when a physician speaks to a gathering it is from a script prepared by the pharmaceutical company.  They get paid extremely well for doing nothing more than reading a speech prepared that was handed to them.  Physicians justify the practice by pointing out that the FDA and other agencies require specific language when speaking about specific drugs and being as the company has already fine-tuned the words and had them approved it makes sense to use their script.

dollars for docs keeperDollars for Docs is a site that keeps track of what Pharmaceutical companies pay to physicians, state by state.  You can look up your doc to find out if he or she is getting any money from the companies listed http://projects.propublica.org/docdollars/

Physician endorsements of pharmaceutical products are important because they can help:

  • Gain approval from a regulatory agency for the use or expanded use of their drug or product.
  • Ratchet back the noise when there is a crisis.  For example, if a journalist finds a study that suggests your drug is unsafe or someone files a law suit claiming extensive damages or death it is reassuring to the public and to juries to hear a well-known physician say we shouldn’t worry, the drug is safe.
  • It’s just good advertising to have a doc endorse you.  “3 out of 4 Doctors recommend brand X.. Here’s what Dr. Smith from the renowned xyz institute has to say about it, …….”.

The Pro Publica site has made quite a splash.  Journalists all over the country have used it to gain information about local physicians.  On March 10 of last year, Susan Abram, Staff Writer for the Los Angeles Daily news wrote a story based on research from Pro Publica that outlined the situation in California. http://tinyurl.com/kjwrebp

“Hundreds of physicians, psychiatrists, and medical school faculty members across California are on the payroll of major drug companies, earning tens of thousands of dollars for speaking to other medical professionals at events held by industry leaders that make drugs such as Advair, Cymbalta, Viagra and Zoloft.

From 2009 to 2012, California doctors who participated were paid $242 million – the highest in the nation – by major drug companies for research, speaking, consulting, trips and meals, according to a new database released Monday by ProPublica, an independent, nonprofit news organization.

The disclosures have been listed on the websites of some drug companies for several years, but a federal mandate will require it for companies by 2014.”

While the practice of speaking is not illegal, it raises the question of conflict of interest: Is the drug being given to you because you need it, or because the doctor writing out the prescription is paid by Big Pharma?  There really isn’t any way to tell.

So in the  final analysis, patients need to be far more vigilant and inquisitive about prescribed medications.  While clinical trials of drugs are usually quite thorough before the Food and Drug Administration (FDA) approves them, their full effect may not be known for years.  Even with large clinical trials with thousands of patients involved it is sometimes impossible to determine exactly what a drug will do to or for any given person because we are all very different from one another.

It is easy to understand that a physician who is deeply in debt wants to pay off the loans and live a more stress free life by endorsing certain medications.  I might do the same but they also have to exercise some caution with new high profile drugs that claim to perform miracles.  Let me name just three and you’ll then better understand that Big Pharma’s influence is real and it works for them but may not be in your best interest.

  1. Upon release everyone thought drugs like Fosamax the anti-osteoporosis drug (a biphosponate like Boniva and Actonel), fosamaxwas a Godsend but the FDA now says these drugs may in fact cause harm. In 2012 the FDA issued a report that said after years of use the drugs may in rare cases actually lead to weaker bones in certain women, contributing to “rare but serious adverse events,” including unusual femur fractures, esophageal cancer and osteonecrosis of the jaw, a painful and disfiguring crumbling of the jaw bone.”  The agency’s analysis, which found little if any benefit from the drugs after three to five years of use, may prompt doctors around the country to rethink how they prescribe them.

2. Then there’s Lipitor which was the best-selling drug in history.  Reports indicate that in 14 years the drug lipitorgenerated about 126 billion dollars for pharmaceutical giant Pfizer.  Lipitor is a statin a class of drugs developed to block the enzyme in your liver that is responsible for making cholesterol.  It has Since been found that statin users run the risk of experiencing severe muscle pain and damage which can lead to serious kidney problems.

The danger with Lipitor in particular is that the standard dosage is far stronger than many patients need.  One physician wrote, “The Lipitor dosage guidelines do not distinguish between patients with or without heart disease. They do not distinguish between patients requiring large reductions and those needing small reductions. The recommended initial dose of Lipitor, 10 mg, is so powerful that doctors can treat many patients with the same dose and not have to bother matching the dose to individual patients.”

  1. And finally, Paxil the SSRI antidepressant that was the preferred method of treating Post Traumatic Stress Syndrome paxil(PTSS) among Iraq war veterans.   In 2007 the BBC did a story about a study that showed adolescents were six times as likely to become suicidal on the drug.  In 2005, the FDA revealed birth defects associated with Paxil including heart problems, seizures, feeding problems, vomiting, low blood sugar and a host of other symptoms.  Then it was revealed that some patients had extreme difficulty when they tried to stop taking Paxil According to a report in the British Medical Journal, in case after case, patients coming off the drug experienced nightmares, dizziness, burning and itching of the skin, agitation, sweating and nausea. And for many of those patients, the only way to treat the side effects was to begin taking Paxil again! http://hsionline.com/2006/02/06/the-dangers-of-paxil/#sthash.B9BKt990.dpuf

All of these drugs seemed legitimate, effective and relatively safe at first. A good number of  physicians got on the Fosamax, Lipitor and Paxil bandwagons and were paid handsome sums for their endorsements.  In retrospect it is obvious that many of the claims were premature and that the drugs probably endangered the people who were taking them.

To be purposely repetitious I will again offer this admonition.  Patients have to become far more knowledgeable about medical treatments and prescription drugs and we have to ask more questions.  When a physician recommends drug X for arthritis we need to ask if there’s a generic.  We also need to question physicians about whether the drug or treatment is really necessary. And  remember — sometimes it is important to get a second opinion. A good, honest physician will support that decision.

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Bob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.

Dr.


dea cartoonBy Bob Aronson

This is not my first post on this subject and it will no be the last because Americans with real pain are suffering needlessly.

Chronic pain is real.  I know, I have it and right now thousands of U.S. docs are refusing to prescribe narcotic pain killers not because people don’t need them but rather because federal agencies in their zeal to eliminate “Pill Mills” have frightened physicians.

They’ve told docs they run the risk of being investigated if they can’t prove an absolute need for every opioid prescription they write.  The result is that docs don’t want or need the hassle so many of them are saying, “No” to all requests for pain killers even when they know the requests are legitimate.  It happened to me and it is happening to thousands of others as well.

Federal agencies have gone over the edge on this one.  Their strong-arm tactics aimed at stopping a few unscrupulous physicians may result in some license revocation and brief incarceration while thousands if not millions of chronic pain sufferers are condemned to living with extreme discomfort and excruciating pain.  Have they spent any time thinking through the effect of their intimidation of doctors and pharmacies?   Do they really think that taking drugs away from people who need them will affect the trafficking of prescription meds?

While I understand physician’s reluctance to write prescriptions in the face of pressure from the feds I also think their behavior is as arrogant and irresponsible as the feds.  Physicians take an oath to treat the sick and to do no harm and by refusing to treat patients with with provable, legitimate pain they are violating both promises and risking the physical and mental health of their patients. 

Ever since I published my first blog on the subject I’ve received a constant stream of emails, tweets, Facebook messages and phone calls from people who have been cut off by their physicians.  Just this morning I got this email;

“bob, just read article on crackdown on narc . I have bladder cancer, replaced knee that was screwed up .  Other knee has to be replaced, have torn rotator cup right arm, bulging discs in c5 & c6. so yesterday my doc cut out my Lortabs because of letter from DEA.   Is this right & what do I do?”

What is most bothersome to me is that I don’t really have an answer other than to shop around for a doctor that will prescribe what he/she needs.  Certainly the oncologist should be sympathetic. This is a very serious problem but it is unlikely to be addressed because everyone is afraid…Afraid of being “Soft on narcotics enforcement,” afraid of being hassled, afraid of jail time.  It’s very sad and it is wrong.

Chronic pain is serious.  Millions suffer from it as the result of arthritis, accidents, broken bones, cancer and scores of other reasons.  I am one of them.  I have osteoarthritis and it hurts.  Without narcotic painkillers I would be immobilized.  With them I am functional and feel pretty good.  I don’t get high, I don’t’ abuse them I take them for their stated purpose – pain.

The Drug Enforcement Agency (DEA) has been hunting down “Pill Mill” doctors for years and they should.  It is an unfortunate truth that some real doctors will write prescriptions for almost anyone for an exorbitant fee.  Florida was the prescription drug capitol of the world until not long ago.

DEA is so obsessed with illegal narcotics that they don’t care who gets hurt along the way.  They have now persuaded the Food and Drug Administration to “Recommend” that physicians be more careful in their prescribing of hydrocodone (an opioid also known as Lortab or Vicodin).  The result of the DEA/FDA suggestions, warnings and recommendation is that physicians are just refusing to write prescriptions for narcotic painkillers or, in some cases any controlled substance including Valium. It’s not that docs are afraid of getting arrested, that’s quite unlikely.  They just don’t want the hassle of federal agents bugging them for detailed justification about the prescriptions they are writing for pain killers.

My primary care physician still provides me with the Oxycodone I need but I’m not so sure how long he’ll be able to hold out before he, too, will bend to the pressure from the feds. As the law stands now, a physician cannot call or fax a narcotic painkiller prescription to a pharmacy and those prescriptions are not refillable. To protect himself my primary care physician requires that I see him once a month for a pain evaluation before he writes new script.  Then with prescription in hand I must personally take it to a pharmacist.

I have written two blogs on the subject and there might be more coming.  You can find them at http://bobsnewheart.wordpress.com/2013/07/17/why-your-doc-wont-prescribe-narcotics-no-matter-how-bad-the-pain/     and at   http://bobsnewheart.wordpress.com/2013/12/10/suffering-from-chronic-pain-heres-what-you-need-to-know/

If you want to do something about this talk to your congressman or senator and get them to either deal with the issue legislatively or to put pressure on the FDA and DEA to back off legitimate claims for opioids.

Not Long ago the Boston Globe did a story on this issue.  It is well worth your time to read it.  http://tinyurl.com/l3ahgtc

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Bob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.


Introduction by Bob Aronson

hope cartoon 5

When you are placed on the organ transplant list it is because you have been diagnosed with an end-stage disease and the only way to save your life is with an organ transplant.  Many look at the number of people on the list and the organ shortage and give up.  I did just that.  I thought I was too old and not sick enough and had given up hope.  I now know how foolish that was because despite all the odds against me, despite waiting for 12 years to get on the transplant list, despite being 68 years old at the time — I got a new heart after only 13 days on the list.  I was the right person in the right place at the right time with the right match.

There’s always hope – always.  Giving up hope is to die while still among the living.  Hope is powerful and hope is always your partner.  Don’t give up on her because she is always working for you.

The following quotes are among the best I could find on the issue of hope.  Read them, print them, tuck them away for reference and share them and above all…don’t give up.Mary lou retton cropped

 

1.    “Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.”  –Sihel Silverstein

2.    “I believe that imagination is stronger than knowledge. That myth is more potent than history. That dreams are more powerful than facts. That hope always triumphs over experience. That laughter is the only cure for grief. And I believe that love is stronger than death.”–Robert Fulghum
goodtimes ahead sign

3.    “Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.”  –Emily Dickinson

4.    “I like the night. Without the dark, we’d never see the stars.”  –Stephanie Meyer, Twilight

 

5.    “The things you do for yourself are gone when you are gone, but the things you do for others remain as your legacy.”  –Kalu Ndukwe Kaluwinnie the poo

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6.    “I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you’re going, but you know that so long as you spread your wings, the winds will carry you.” –C. JoyBell C.

7.    The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they both lead to the same destination.”  –Marion Zimmer Bradley

8.    “You can cut all the flowers but you cannot keep Spring from coming.”  –Pablo Neruda

 pessimist and optimist  harry truman

9.    Until the day when God shall deign to reveal the future to man, all human wisdom is summed up in these two words,–‘Wait and hope’. — Alexandre Dumas

 

 

10.There are no hopeless situations; there are only men who have grown hopeless about them.  —   Clare Booth Luce

 

11.Do not spoil what you have by desiring what you have not; but remember that what you now have was once among the things you only hoped for. – Epicurious

 

12.Hope never abandons you, you abandon it.” -George Weinberg

 

13.“Hope itself is a species of happiness, and, perhaps, the chief happiness which this world affords; but, like all other pleasures immoderately enjoyed, the excesses of hope must be expiated by pain.”  -Samuel Johnson

 

14. Enthusiasm is the yeast that makes your hopes shine to the stars. Enthusiasm is the sparkle in your eyes, the swing in your gait. The grip of your hand, the irresistible surge of will and energy to execute your ideas. — Henry Ford

 

15.When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn. –Harriet Beecher Stowehope cartoon 4

 

16.“If you have made mistakes, there is always another chance for you. You may have a fresh start any moment you choose, for this thing we call “failure” is not the falling down, but the staying down.” –Mary Pickford

 

17.“Many of life’s failures are people who did not realize how close they were to success when they gave up.” –Thomas Edison

 

18.“Aerodynamically the bumblebee shouldn’t be able to fly, but the bumblebee doesn’t know that so it goes on flying anyway.” –Mary Kay Ash

 

19.“To love means loving the unlovable. To forgive means pardoning the unpardonable. Faith means believing the unbelievable. Hope means hoping when everything seems hopeless.” –G.K. Chesterson

 

20.Hope is tenacious. It goes on living and working when science has dealt it what should be its deathblow. PauL laurence Dunbar

 hope cartoon

21.Expectancy speeds progress. Therefore, live in a continual state of expectancy. No matter how much good you are experiencing today, expect greater good tomorrow. Expect to meet new friends. Expect to meet new and wonderful experiences. Try this magic of expectancy and you will soon discover a dramatic side to your work which gives full vent to constructive feeling. – Ernest Holmes

 

22.Hope is sweet-minded and sweet-eyed. It draws pictures; it weaves fancies; it fills the future with delight.—Henry Ward Beecher

 

23.A man begins to die when he ceases to expect anything from Tomorrow.—Abraham Miller

 

24.There is no medicine like hope, no incentive so great and no tonic so powerful as expectation of something better tomorrow – Orison Swett Marden

 

25.Hope is not like a lottery ticket you can sit on the sofa and clutch, feeling lucky…. optimism smilehope is an ax you break down doors with in an emergency — Rebecca Solnit


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bob magic kingdomBob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.


By Bob Aronson

oopsWhen your life has been saved in hospitals several times as mine has,  it is difficult to write a blog that is critical of those institutions but, it is just as difficult to ignore the facts.  As a writer who has made a commitment to provide accurate and timely information to his readers it would be irresponsible to do so. 

This blog is about and for pre and post-transplant patients, their families, donors, donor families, caregivers and friends.  Those of us who are awaiting transplants or who have had them spend an inordinate amount of time in hospitals and clinics.  Our compromised immune systems make us far more susceptible to a myriad of diseases and problems than the average patient and that means we have to be more alert and aware of our surroundings.  It is for that reason that I am posting this information.

 I did not make up the numbers you are about to read.  They are available for everyone to see and to analyze through the links I have provided.  Your comments are not only welcome, they are encouraged.

Never Events, Hospital Acquired Conditions and Sentinel Events

Heart disease and cancer are the number one and two causes of death in the United States.  Number three is medical errors. The very people who are supposed to be experts in saving lives are also responsible for thousands of deaths.

Medical errors in hospitals are killing us faster than chronic lower respiratory diseases, stroke (cerebrovascular diseases), accidents of all kinds, Alzheimer’s disease and diabetes combined.   The very people we trust our lives to – are not only contributing to our deaths they don’t seem to be learning from their mistakes because the problem appears to be getting worse.   While many hospitals claim they are making progress the national numbers don’t show it.  The evidence to the contrary is overwhelming.  And — one cannot help but believe that the problem is even worse than is stated in this posting because there is no system in the U.S. for reporting and tracking medical errors and their results.  Voluntary reporting is spotty and incomplete so we are left with educated guestimates and they are frightening.

In 1999, the Institute of Medicine published the “To Err Is Human” report.  It generated huge front page headlines everywhere by estimating that nearly 100,000 people die every year as a result of hospital errors.  At first there was widespread denial in the medical community but no longer.  The medical profession accepts that number.  The problem is that the number is wrong.

In 2010 another number was announced.  The Office of the U.S. Inspector General for Health and Human Services said that poor hospital care contributed to the deaths of 180,000 patients in Medicare alone in any given year…  Note — they said Medicare alone!  But — that number is wrong, too.  The story is about to get much worse.

A study published in September of 2013 in the Journal of Patient Safety says the numbers may be much higher.  They say that between 210,000 and 440,000 patients die in hospitals each year as the result of preventable errors. Please note that the numbers quoted in the preceding reports only refer to deaths.  None of the numbers I have seen say anything about the number of injuries caused by medical errors.

The new estimates were the result of work by John T. James, who works as a toxicologist at NASA’s Houston, Texas space center.  James also runs a group called Patient Safety America.  http://patientsafetyamerica.com/  James dedicated the site to his 19-year old son, John Alexander James, who he says, “Died as a result of uninformed, careless, and unethical care by cardiologists at a hospital in central Texas in the late summer of 2002.”

propublica logoProPublica an investigative journalism group asked three prominent patient safety researchers to review James’ study and all said his methods and findings were credible. http://www.propublica.org/  The American Hospital Association, though, rejects the number preferring to believe the number of 98,000 deaths from the 1999 report.

What’s the right number?  Nobody knows for sure but we do know it is not getting smaller. As stated earlier there is no standardized national reporting system on medical errors, who is affected and who makes them.

So we’re left with approximations, which are imperfect in part because of inaccuracies in medical records and the fact that a good many of the errors that take place are never reported. Hospitals and physicians have traditionally fought establishing a formal reporting system for fear of prosecution.  Instead they advocate a voluntary reporting system which begs the question, “Who is going to voluntarily admit to committing an error that resulted in a patient’s injury or death.”  I have to believe the number would be quite small.  Admissions of that nature could have extremely negative effects on careers and may even open the door to civil suits or criminal prosecution.  Perhaps I can be persuaded to think otherwise but I’ve seen nothing so far to indicate any voluntary system can work.

While the lay public calls them medical mistakes or errors the medical community has chosen to use different terminology.  They refer to their errors as “Never Events” or Hospital Acquired Conditions (HACs)    Never events are never supposed to happen – but they do and the onus is clearly on hospitals to do something about them.  The Government found that one way to force hospitals to deal with these problems is to refuse payment so for several years now Medicaid and Medicare do not pay for any Hospital Acquired Condition.

When I was a communications consultant I specialized in health care so I spent a great deal of time working inoops oops and oops and around hospitals and clinics.  The great majority of them take the issue of patient safety very seriously and have implemented a multitude of actions to address the problem.  They all have preventive programs and systems on what to do when there is an error.  Most hospitals conduct a “Root Cause Analysis” every time there is a significant error so they can be sure the same error doesn’t happen again. They are working on the problem but patients owe it to themselves to always be alert and to question everything.  Hospitals need to know that we are watching very carefully and that we will report what we see and experience.

Here is a list of HACs or Never Events as prepared by the National Quality Forum (NQF).

Table. Never Events or Hospital Acquired Conditions
Surgical events
Surgery or other invasive procedure performed on the wrong body part
Surgery or other invasive procedure performed on the wrong patient
Wrong surgical or other invasive procedure performed on a patient
Unintended retention of a foreign object in a patient after surgery or other procedure
Intraoperative or immediately postoperative/post procedure death in an American Society of Anesthesiologists Class I patient
Product or device events
Patient death or serious injury associated with the use of contaminated drugs, devices, or biologics provided by the health care setting
Patient death or serious injury associated with the use or function of a device in patient care, in which the device is used for functions other than as intended
Patient death or serious injury associated with intravascular air embolism that occurs while being cared for in a health care setting
Patient protection events
Discharge or release of a patient/resident of any age, who is unable to make decisions, to other than an authorized person
Patient death or serious disability associated with patient elopement (disappearance)
Patient suicide, attempted suicide, or self-harm resulting in serious disability, while being cared for in a health care facility
Care management events
Patient death or serious injury associated with a medication error (e.g., errors involving the wrong drug, wrong dose, wrong patient, wrong time, wrong rate, wrong preparation, or wrong route of administration)
Patient death or serious injury associated with unsafe administration of blood products
Maternal death or serious injury associated with labor or delivery in a low-risk pregnancy while being cared for in a health care setting
Death or serious injury of a neonate associated with labor or delivery in a low-risk pregnancy
Artificial insemination with the wrong donor sperm or wrong egg
Patient death or serious injury associated with a fall while being cared for in a health care setting
Any stage 3, stage 4, or unstageable pressure ulcers acquired after admission/presentation to a health care facility
Patient death or serious disability resulting from the irretrievable loss of an irreplaceable biological specimen
Patient death or serious injury resulting from failure to follow up or communicate laboratory, pathology, or radiology test results
Environmental events
Patient or staff death or serious disability associated with an electric shock in the course of a patient care process in a health care setting
Any incident in which a line designated for oxygen or other gas to be delivered to a patient contains no gas, the wrong gas, or is contaminated by toxic substances
Patient or staff death or serious injury associated with a burn incurred from any source in the course of a patient care process in a health care setting
Patient death or serious injury associated with the use of restraints or bedrails while being cared for in a health care setting
Radiologic events
Death or serious injury of a patient or staff associated with introduction of a metallic object into the MRI area
Criminal events
Any instance of care ordered by or provided by someone impersonating a physician, nurse, pharmacist, or other licensed health care provider
Abduction of a patient/resident of any age
Sexual abuse/assault on a patient within or on the grounds of a health care setting
Death or significant injury of a patient or staff member resulting from a physical assault (i.e., battery) that occurs within or on the grounds of a health care setting

 Real Life Examples of Medical Mistakes

  1. Wrong Heart and Lung Transplant.  One of the most tragic medical blunders ever took place at Duke University medical center in 2003, when surgeons transplanted a heart lung combination with the wrong blood type into 17-year-old Jesica Santillan.  Her body began to shut down almost immediately. The hospital somehow secured a second and proper matched heart lung combination for Jessica but it was too late and she died.  Dr. James Jaggers accepted responsibility for the tragic mistake, and Duke along with most other hospitals now have systems that require double checking the blood and tissue matches for transplants.
  1. Souvenir of surgery.  In the year 2000 49 year old Donald Church had an abdominal tumor removed at the U of Washington Medical center in Seattle. While he left the hospital without the tumor, he had something that he didn’t have on admission — a 13-inch-long retractor had been left in Church’s abdomen by mistake. To make matters worse it was a repeat performance for the hospital, four other such occurrences had been documented there between 1997 and 2000. Fortunately, surgeons were able to remove the instrument but also agreed to pay Church nearly $100,000.
  1. Healthy kidney removed.  Park Nicollet Methodist Hospital in Minnesota’s twin cities was the site of the next never event.  A man was admitted to have one of his kidneys removed due to a cancerous tumor.  Surgeons did just that but upon a post-surgical examination of the removed kidney they found no malignancy.  That’s when they discovered they had removed the wrong one.  We can’t report further because the family involved requested anonymity but Park Nicollet publicly admitted the error.

What Patients Can Do

A CNN report suggests that many medical errors could be prevented if patients were more aggressive about consequencesmaking sure their health care providers are more focused on what they are doing.

The cable network developed this list of what they call “10 Shocking Medical Mistakes and Ways to Not Become a Victim.

1. Mistake: Treating the wrong patient
Cause: Hospital staff fails to verify a patient’s identity.
Consequences: Patients with similar names are confused.
Prevention: Before every procedure in the hospital, make sure the staff checks your entire name, date of birth and barcode on your wrist band.

2. Mistake: Surgical souvenirs
Cause: Surgical staff miscounts (or fails to count) equipment used inside a patient during an operation.
Consequences: Tools get left inside the body.
Prevention: If you have unexpected pain, fever or swelling after surgery, ask if you might have a surgical instrument inside you.

3. Mistake: Lost patients
Cause
: Patients with dementia are sometimes prone to wandering.
Consequences: Patients may become trapped while wandering and die from hypothermia or dehydration.
Prevention: If your loved one sometimes wanders, consider a GPS tracking bracelet.

4. Mistake: Fake doctors
Cause: Con artists pretend to be doctors.
Consequences: Medical treatments backfire. Instead of getting better, patients get sicker.
Prevention: Confirm online that your physician is licensed.

5. Mistake: The ER waiting game
Cause: Emergency rooms get backed up when overcrowded hospitals don’t have enough beds.
Consequences: Patients get sicker while waiting for care.
Prevention: Doctors listen to other doctors, so on your way to the hospital call your physician and ask them to call the emergency room.
6. Mistake: Air bubbles in blood
Cause: The hole in a patient’s chest isn’t sealed airtight after a chest tube is removed.
Consequences: Air bubbles get sucked into the wound and cut off blood supply to the patient’s lungs, heart, kidneys and brain. Left uncorrected the patient dies.
Prevention: If you have a central line tube in you, ask how you should be positioned when the line comes out.

7. Mistake: Operating on the wrong body part
Cause: A patient’s chart is incorrect, or a surgeon misreads it, or surgical draping obscures marks that denote the correct side of the operation.
Consequences: The surgeon cuts into the wrong side of a patient’s body.
Prevention: Just before surgery, make sure you reaffirm with the nurse and the surgeon the correct body part and side of your operation.

8. Mistake: Infection infestation
Cause: Doctors and nurses don’t wash their hands.
Consequences: Patients can die from infections spread by hospital workers.
Prevention: It may be uncomfortable to ask, but make sure doctors and nurses wash their hands before they touch you, even if they’re wearing gloves.

9. Mistake: Lookalike tubes
Cause: A chest tube and a feeding tube can look a lot alike.
Consequences: Medicine meant for the stomach goes into the chest.
Prevention: When you have tubes in you, ask the staff to trace every tube back to the point of origin so the right medicine goes to the right place.

10. Mistake: Waking up during surgery
Cause: An under-dose of anesthesia.
Consequences: The brain stays awake while the muscles stay frozen. Most patients aren’t in any pain but some feel every poke, prod and cut.
Prevention: When you schedule surgery, ask your surgeon if you need to be put asleep or if a local anesthetic might work just as well.

There are other steps you can take to protect yourself besides those offered by CNN.  For example:

Demand a hand-wash.   While hospitals try to be germ free it is hard when almost everyone who enters the building is sick.  It is a well-known fact that the best thing people can do to protect themselves from disease is frequent hand washing.  The potential for contamination is everywhere so you are well within your rights to ask personnel to wash their hands before touching you.  And…by the way, wash your hands frequently too.

Make sure your room is clean. Usually hospital rooms are thoroughly washed between patients but not as thoroughly if you are going to be there for a while.   If you are concerned with the state of your room ask for certain areas or all of it to be disinfected.  Transplant recipients in particular must be sure they are in as germ free an environment as possible.  Certainly if hospitalized they should always wear a face mask to protect themselves.  And, do your best to stay out of crowded areas like elevators.  If you must enter a crowded room, wear a face mask. All hospitals have them you just have to ask for one…

To be even more specific though, Patient Safety America suggestions these you do the following to stay safe http://patientsafetyamerica.com/truth-about-healthcare/

1. The single most important way you can help to prevent errors is to be an active member of your health care team.

That means taking part in every decision about your health care. Research shows that patients who are more involved with their care tend to get better results. Here are some specific tips, based on the latest scientific evidence about what works best.

Medicines

2. Make sure that all of your doctors know about everything you are taking. This includes prescription and over-the-counter medicines, and dietary supplements such as vitamins and herbs.

At least once a year, bring all of your medicines and supplements with you to your doctor. “Brown bagging” your medicines can help you and your doctor talk about them and find out if there are any problems. It can also help your doctor keep your records up to date, which can help you get better quality care.

3. Make sure your doctor knows about any allergies and adverse reactions you have had to medicines.

This can help you avoid getting a medicine that can harm you.

4. When your doctor writes you a prescription, make sure you can read it.

If you can’t read your doctor’s handwriting, your pharmacist might not be able to either.

5. Ask for information about your medicines in terms you can understand—both when your medicines are prescribed and when you receive them.

  • What is the medicine for?
  • How am I supposed to take it, and for how long?
  • What side effects are likely? What do I do if they occur?
  • Is this medicine safe to take with other medicines or dietary supplements I am taking?
  • What food, drink, or activities should I avoid while taking this medicine?

6. When you pick up your medicine from the pharmacy, ask: Is this the medicine that my doctor prescribed?

A study by the Massachusetts College of Pharmacy and Allied Health Sciences found that 88 percent of medicine errors involved the wrong drug or the wrong dose.

7. If you have any questions about the directions on your medicine labels, ask.

Medicine labels can be hard to understand. For example, ask if “four doses daily” means taking a dose every 6 hours around the clock or just during regular waking hours.

8. Ask your pharmacist for the best device to measure your liquid medicine. Also, ask questions if you’re not sure how to use it.

Research shows that many people do not understand the right way to measure liquid medicines. For example, many use household teaspoons, which often do not hold a true teaspoon of liquid. Special devices, like marked syringes, help people to measure the right dose. Being told how to use the devices helps even more.

9. Ask for written information about the side effects your medicine could cause.

If you know what might happen, you will be better prepared if it does—or, if something unexpected happens instead. That way, you can report the problem right away and get help before it gets worse. A study found that written information about medicines can help patients recognize problem side effects and then give that information to their doctor or pharmacist.

Hospital Stays

10. If you have a choice, choose a hospital at which many patients have the procedure or surgery you need.

Research shows that patients tend to have better results when they are treated in hospitals that have a great deal of experience with their condition.

11. If you are in a hospital, consider asking all health care workers who have direct contact with you whether they have washed their hands.

Hand washing is an important way to prevent the spread of infections in hospitals. Yet, it is not done regularly or thoroughly enough. A recent study found that when patients checked whether health care workers washed their hands, the workers washed their hands more often and used more soap.

12. When you are being discharged from the hospital, ask your doctor to explain the treatment plan you will use at home.

This includes learning about your medicines and finding out when you can get back to your regular activities. Research shows that at discharge time, doctors think their patients understand more than they really do about what they should or should not do when they return home.

Surgery

13. If you are having surgery, make sure that you, your doctor, and your surgeon all agree and are clear on exactly what will be done.

Doing surgery at the wrong site (for example, operating on the left knee instead of the right) is rare. But even once is too often. The good news is that wrong-site surgery is 100 percent preventable. The American Academy of Orthopedic Surgeons urges its members to sign their initials directly on the site to be operated on before the surgery.

Other Steps You Can Take

14. Speak up if you have questions or concerns.

You have a right to question anyone who is involved with your care.

15. Make sure that someone, such as your personal doctor, is in charge of your care.

This is especially important if you have many health problems or are in a hospital.

16. Make sure that all health professionals involved in your care have important health information about you.

Do not assume that everyone knows everything they need to.

17. Ask a family member or friend to be there with you and to be your advocate (someone who can help get things done and speak up for you if you can’t).

Even if you think you don’t need help now, you might need it later.

18. Know that “more” is not always better.

It is a good idea to find out why a test or treatment is needed and how it can help you. You could be better off without it.

19. If you have a test, don’t assume that no news is good news.

Ask about the results.

20. Learn about your condition and treatments by asking your doctor and nurse and by using other reliable sources.

You may ask yourself upon reading all of this what the U.S. Food and Drug Administration (FDA) is doing to make hospitals safer.  Well, they can’t be in every hospital all the time to watch everything and…that’s not their role.  The FDA is probably not doing enough to protect us, there’s no way you can satisfy everyone but they are doing a few things that could make a huge difference.  One of which is to eliminate drug name confusion.

To minimize confusion between drug names that look or sound alike, the FDA reviews about 300 drug names a year before they are marketed. “About one-third of the names that drug companies propose are rejected,” says Phillips. The agency tests drug names with the help of about 120 FDA health professionals who volunteer to simulate real-life drug order situations. “FDA also created a computerized program that assists in detecting similar names and that will help take a more scientific approach to comparing names,” Phillips says.

After drugs are approved, the FDA tracks reports of errors due to drug name confusion and spreads the word to health professionals, along with recommendations for avoiding future problems. For example, the FDA has reported errors involving the inadvertent administration of methadone, a drug used to treat opiate dependence, rather than the intended Metadate ER (methylphenidate) for the treatment of attention-deficit/hyperactivity disorder (ADHD). One report involved the death of an 8-year-old boy after a possible medication error at the dispensing pharmacy. The child, who was being treated for ADHD, was found dead at home. Methadone substitution was the suspected cause of death. Some FDA recommendations regarding drug name confusion have encouraged pharmacists to separate similar drug products on pharmacy shelves and have encouraged physicians to indicate both brand and generic drug names on prescription orders, as well as what the drug is intended to treat.

The last time the FDA changed a drug name after it was approved was in 2004 when the cholesterol-lowering medicine Altocor was being confused with the cholesterol-lowering medicine Advicor. Now Altocor is called Altoprev, and the agency hasn’t received reports of errors since the name change. Other examples of drug name confusion reported to the FDA include:

  • Serzone (nefazodone) for depression and Seroquel (quetiapine) for schizophrenia
  • Lamictal (lamotrigine) for epilepsy, Lamisil (terbinafine) for nail infections, Ludiomil (maprotiline) for depression, and Lomotil (diphenoxylate) for diarrhea
  • Taxotere (docetaxel) and Taxol (paclitaxel), both for chemotherapy
  • Zantac (ranitidine) for heartburn, Zyrtec (cetirizine) for allergies, and Zyprexa (olanzapine) for mental conditions
  • Celebrex (celecoxib) for arthritis and Celexa (citalopram) for depression.

For more information on the FDA and what they are doing click on this link http://www.fda.gov/

The bottom line on medical errors is activist patients.  Don’t sit by quietly when you perceive something to be wrong with your care or the care of someone near and dear to you.  Speak up, tell someone about your concerns.  Every city and state has some sort of health department so if you see something wrong speak up and tell the appropriate authority starting with the hospital.

Most importantly, though, be aggressive and knowledgeable about your own health care.  Don’t be afraid to ask for second opinions, to question physicians, nurses and other practitioners.  Force your health care provider to speak to you in plain English and if you don’t understand ask for clarification.  Hospital personnel work for you so they have a responsibility to respond to your concerns in as thorough and clear a manner as possible. The only way hospitals will really change for the better is for citizens, patients like you and me to speak up and let them know we know.

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bob half of bob and jay photoBob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.


By Bob Aronson

final cartoonThis blog is a wake-up call for those who take anti-depressants.  It is an attempt by Bob’s Newheart to draw attention to the drugs, the prescription process and some of the side effects they present.  We will focus in particular on the Bristol Meyers Squibb antipsychotic, Abilify.

This post does not pretend to offer a scientific evaluation of the drug.  We have neither the expertise nor the facilities to accomplish that.  Through research, though, we can offer readers some selected information upon which they can make their own judgments.  Specifically we looked into what the drug is intended to do, what it does, what unintended consequences have resulted and, of course, the profitability of the medication.

I was drawn to this subject because I have taken Abilify and suffered serious side effects.  I will detail them and offer other examples both scientific and personal later in this post.

Abilify is becoming a very commonly prescribed anti-depressant.  While there are many possible side effects this warning from the U.S. Food and Drug Administration (FDA) stands out.

FDA WARNINGS: INCREASED MORTALITY IN ELDERLY

PATIENTS WITH DEMENTIA-RELATED PSYCHOSIS and

SUICIDALITY AND ANTIDEPRESSANT DRUGS

See full prescribing information for complete boxed warning.

Elderly patients with dementia-related psychosis treated with

Antipsychotic drugs are at an increased risk of death. ABILIFY is

not approved for the treatment of patients with dementia-related

psychosis. (5.1)

Children, adolescents, and young adults taking antidepressants for

Major Depressive Disorder (MDD) and other psychiatric disorders

are at increased risk of suicidal thinking and behavior. (5.2)

Not only does Abilify cause concern for elderly patients, it should be a cause of concern for all patients for many reasons including one that affected me, Tardive Dyskinesia.  Remember that term…we’ll be returning to it, but first I want to re-visit the subject of depression and what it is.

Many awaiting organ transplants and recipients as well suffer from serious bouts of depression.  They often will attribute their sunken feelings with being told that they have an end-stage disease.

Strangely, many patients who have received the “gift of life” also feel depressed and some even become suicidal.  Many believe they are depressed due to guilt.  Guilt caused by the belief that they received organs ahead of patients who were sicker and more deserving.

To the lay person the explanations given by pre and post-transplant patients make sense but medical science and research has told us for a very long time that the moods they describe may be the result of chemical imbalances.  Well, that may not be true.  Here’s what the Harvard Medical school has to say about depression and what it is.

cartoon...depression“Research suggests that depression doesn’t spring from simply having too much or too little of certain brain chemicals. Rather, depression has many possible causes, including faulty mood regulation by the brain, genetic vulnerability, stressful life events, medications, and medical problems. It’s believed that several of these forces interact to bring on depression.

To be sure, chemicals are involved in this process, but it is not a simple matter of one chemical being too low and another too high. Rather, many chemicals are involved, working both inside and outside nerve cells. There are millions, even billions, of chemical reactions that make up the dynamic system that is responsible for your mood, perceptions, and how you experience life.

With this level of complexity, you can see how two people might have similar symptoms of depression, but the problem on the inside, and therefore what treatments will work best, may be entirely different.” You can read all the details of the Harvard explanation here http://www.health.harvard.edu/newsweek/what-causes-depression.htm

If you read between the lines of the Harvard explanation you can quickly come to the conclusion that physicians who treat depression are involved in educated guesswork as they try to find the right drugs to relieve depression symptoms.

I have been treated for depression for years and whether the treatment was offered by my family physician or by a licensed, board certified Psychiatrist the approach is the same.  They ask some key questions about lifestyle, what’s bothering you, how you feel and why and then say, “We’ll try a few things to see what works.  Let’s get you started on (drug).  It takes from 2 to 5 weeks for an effect to be felt but call me in a couple of weeks to let me know how you are doing.”

Obviously physicians have more knowledge about things medical than we do but when it comes to depression it can be a big guessing game.  There are scores of drugs that can be used depending on your symptoms but don’t be surprised if the most highly skilled psychiatrist armed with the best questions has difficulty deciding what’s best for you.  Even the famed Mayo Clinic says,

“Antidepressants are a popular treatment choice for those with moderate or severe depression. Although antidepressants may not cure depression, they can reduce your symptoms. The first antidepressant you try may work fine. But if it doesn’t relieve your symptoms, or it causes side effects that bother you, you may need to try another.

But don’t give up. A number of antidepressants are available, and chances are you’ll be able to find one that works well for you.”

So when you begin taking an anti- depressant you should not expect immediate positive results because you may get no relief at all — or worse yet, you could suffer some very negative side effects.

There are several different types of anti-depressants and they, like all drugs, bring with them side effects of which can be quite serious.  The problem is that because no two people have the same physical and mental make-up it is impossible to predict who will react negatively to a medication, who will react positively and who will have no reaction at all.  You can find more information about the types of drugs and their side effects here.  http://www.helpguide.org/mental/types_of_antidepressants.htm.

And that leads us to our reason for writing this blog.  Abilify and drugs like it can help a person feel wonderful abilifyor make you absolutely miserable and cause permanent damage…  I took Abilify and had a horrible reaction to it as did others I know.

Before I go on I feel compelled to point out that my case and other individual cases do not constitute medical evidence.  Individual cases are classified as anecdotal and while they may sound convincing are not considered medical proof so I will do my best to combine anecdotal and real medical evidence.

You should know, too, what anti-psychotic drugs like Abilify are and what they do.

According to Medicine Net dot com:

http://www.medicinenet.com/script/main/art.asp?articlekey=26299 The first antipsychotic medications were introduced in the 1950s. Antipsychotic medications have helped many patients with psychosis lead a more normal and fulfilling life by alleviating such symptoms as hallucinations, both visual and auditory, and paranoid thoughts. However, the early antipsychotic medications often have unpleasant side effects, such as muscle stiffness, tremor, and abnormal movements, leading researchers to continue their search for better drugs.

“The 1990s saw the development of several new drugs for schizophrenia, called “atypical antipsychotics.” Because they have fewer side effects than the older drugs, today they are often used as a first-line treatment. The first atypical antipsychotic, clozapine (Clozaril), was introduced in the United States in 1990. In clinical trials, this medication was found to be more effective than conventional or “typical” antipsychotic medications in individuals with treatment-resistant schizophrenia (schizophrenia that has not responded to other drugs), and the risk of tardive dyskinesia (a movement disorder) was lower. However, because of the potential side effect of a serious blood disorder–agranulocytosis (loss of the white blood cells that fight infection)-patients who are on clozapine must have a blood test every 1 or 2 weeks. The inconvenience and cost of blood tests and the medication itself have made maintenance on clozapine difficult for many people. Clozapine, however, continues to be the drug of choice for treatment-resistant schizophrenia patients.

Several other atypical antipsychotics have been developed since clozapine was introduced, they are risperidone (Risperdal), aripiprazole (Abilify),  olanzapine (Zyprexa), quetiapine (Seroquel), and ziprasidone (Geodon). Each has a unique side effect profile, but in general, these medications are better tolerated than the earlier drugs. Click on the links above to each drug for more information about side effects.

All these medications have their place in the treatment of schizophrenia, and doctors will choose among them. They will consider the person’s symptoms, age, weight, and personal and family medication history”.

Now let’s get back to those side effects I alluded to earlier in this post.

Patients who take Abilify and some other prescription drugs can develop Tardive Dyskinesia which presents as involuntary, repetitive tic-like movements primarily in the facial muscles or (less commonly) the limbs, fingers and toes. The hips and torso may also be affected. 

Symptoms of tardive dyskinesia can develop and persist long after use of the medication causing the disorder has been discontinued. Tardive dyskinesia can appear similar to other types of disorders, most notably Tourette’s syndrome and can become a permanent medical condition.  

While taking Abilify I developed Tardive Dyskinesia and fortunately quit taking it in time to prevent the affliction from becoming permanent.  The above description does not do justice to it.  When it affected me it was accompanied by confusion, agitation and uncontrollable and very visible tremors around my lower jaw to the point where my teeth could be heard hitting each other despite major efforts on my part to prevent the occurrence.  Furthermore the drug caused tremors in my hands and hips which disappeared once I quit taking the medication.  I felt as though I was disassembling.

Not all patients are affected by dyskinesia.  Some have experienced other side effects.  One friend who we will call “Bill” wrote the following.

I started off on the lowest dose, 2 mg but I felt as though I was going to crawl out of my skin so I cut the dose in half on my own.

While I did not have the movement issues consistent with Tardive dyskinesia.  I did experience a terrible feeling of anxiety and depression unlike any I had experienced in the past.  I can describe the feeling in no other way than to say I felt like my mind was coming unglued.

My physician explained that he thought the dose was too low so we increased it again to 2mg which is a very lose dose but — things got much worse.   I could no longer handle the effects on my mind and body and stopped taking it.  The effects went away the next day.

Perhaps Abilify works for some but for me it was disastrous. Good thing I have a medical background and sense enough to stop taking it. Too often the docs give you something like this and say see me in 2 months, or longer.”

It is important to note here that the drug label clearly says that no one should just stop taking Abilify.  To discontinue use one should taper off slowly under a physician’s watchful eye.  Unfortunately as with Bill, he was unable to see a physician and the effects were so bad he felt compelled to take action himself.

Two stories do not constitute medical evidence but a CNN report says,

“The growing use of a popular drug in the long-term treatment of bipolar disorder is based largely on a single, flawed clinical trial that may be steering doctors and patients away from drugs with a more established track record.”

The CNN expert who studied the studies that got Abilify FDA approval said, “

“The medical research does not appear to justify the widespread use of Abilify for maintenance therapy,” says psychiatrist Alexander C. Tsai, M.D., one of the lead authors of the review and a visiting researcher at Harvard University.” We failed to find sufficient data to support its use.” http://www.cnn.com/2011/HEALTH/05/03/abilify.use.questions/

Bristol Meyers Squibb is the American manufacturer of the drug.  They spend a lot of money on advertising and it pays off.  Abilify was the second-biggest selling drug in their portfolio In 2011 when the antipsychotic generated nearly $2.8 billion in sales, or roughly 13 percent of net sales second only to the $7.1 Billion generated by Plavix.

According to Pharmalot http://www.pharmalive.com/feds-subpoena-bristol-myers-over-abilify-marketing

In September 2007, Bristol-Myers Squibb agreed to settle charges of giving kickbacks to docs and overcharging the government. Among the infractions alleged by the federal and state governments was off-label promotion of its Abilify antipsychotic, and the drugmaker subsequently paid $515 million and signed a five-year corporate integrity agreement.

At the time of the settlement, Bristol-Myers was charged with directing its sales force to call on child psychiatrists and other pediatric specialists, and reps then urged physicians and other health care providers to prescribe Abilify for children. The drug maker also was charged with creating a specialized long=term care sales force that called almost exclusively on nursing homes, where dementia-related psychosis is far more prevalent than schizophrenia or bipolar disorder (back story and the CIA).

The bottom line is this.  Abilify can help.  The problem is that medical science cannot say with certainty who it will help, what conditions it will alleviate and most importantly when and if the side effects will show up.  All they can say is Abilify MIGHT help some patients.

If your physician prescribes Abilify for you it is imperative that you have access to him/her while you are taking it so that if you are negatively affected you can be directed on how best to quit taking it without causing further damage.

One has to wonder about the impact of prescription drug advertising.  It is obviously done to get patients to put pressure on physicians to prescribe drugs that cannot be bought over the counter.  One also has to wonder about the practice of providing physicians with samples to pass out to patients and finally — one has to wonder what’s in it for the physician who prescribes the meds.  Lots of questions — not too many answers.

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scooter half size for wordpressBob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.


artichoke heart cartoon

A note from Bob Aronson

This account of the organ donation process was published by the American Medical Association in 2005.  While some of the information is dated the process described here is for the most part still followed in most states by medical professionals and Organ Procurement Organizations (OPOs).

This story is a very graphic description of the difficulties that organ transplant representatives can face when a patient is declared brain dead and is found to have a donor card in their wallet.  The biggest change since this account was published is that most states have passed laws that allow OPOs to proceed with organ recovery with or without family consent if the donor is registered as such.  It is also true, though, that many OPOs still ask families to honor their loved one’s wishes and although rare, some families object.

I have worked very closely with OPOs in the past and can testify first hand to the great amount of preparation and training their people experience in order to handle situations just like the one described here.  The OPO people who contact families when a loved one is dying or declared brain dead are very special people endowed with natural compassion and empathy.  I am in awe of these professionals who daily are called upon to explain to grieving families how their gift of life can help so many 0thers.

This is our last blog of 2013.  It is fitting that we close the year honoring OPOs and the many wonderful people who work so hard to save lives and bring comfort to grieving families.

On behalf of Bob’s Newheart and Organ Transplant Initiative on Facebook we say thank you OPOs you are doing God’s work and we appreciate your professionalism and compassion.  Personally I offer my most sincere gratitude from the bottom of my donor’s heart.

Family Disagreement Over Organ Donation

American Medical Association

Virtual Mentor. September 2005, Volume 7, Number 9.

Clinical Cases

Commentary by Douglas W. Hanto, MD, PhD, Thomas G. Peters, MD, and by Richard J. Howard, MD, PhD, and Danielle Cornell, BSN

The sound of Sam’s pager suddenly awakens him. A third-year medical student, Sam is in the midst of his trauma surgery rotation. He rushes to the trauma department and learns that his next patient, Justin Lewis, is a 20-year-old male who was in a major automobile accident. Tested en route to the hospital, Justin had a Glasgowcoma scale score of 3. As Justin is brought to the trauma room, the paramedics tell the attending physician, Dr. Hardy, what they know about the accident. According to the EMTs, Justin fell out of a car that was traveling 70 miles per hour and landed on this head. After an extensive emergency room workup, Justin is declared brain dead. Prior to disconnecting him from the ventilator, the ER staff discovers that he has an organ donor card in his wallet. Familiar with the organ donation procedures, Sam calls the organ procurement agency while Dr. Hardy tells Justin’s family the news.

famiy disagreementAn hour later, Mr. Sterling, a representative from the organ procurement organization arrives at the hospital and introduces himself to the family. Justin’s father tells Mr. Sterling that his son definitely wanted to donate his organs, but Justin’s mother interjects. She is adamantly opposed to anyone’s taking organs out of her son.

Meanwhile, Sam asks Dr. Hardy what the plan for the patient is. Dr. Hardy says that Justin will remain on mechanical ventilation until a final decision is made regarding donation of his organs.

Commentary 1

by Douglas W. Hanto MD, PhD

When the death of a patient is imminent or has occurred, as in the case of Justin, all hospitals that receive Medicare and Medicaid dollars are required by the Conpatient on life supportditions of Participation published by the Centers for Medicare and Medicaid Services to have protocols in place for notifying the local federally designated organ procurement organization (OPO). This notification is mandatory whether the patient has a signed organ donor card or not. In Justin’s case, even if the ER staff hadorgan donor card not found an organ donor card in his wallet, Sam would have been correct in calling the OPO. The OPO determines the medical suitability of the potential donor and usually sends a trained organ donation coordinator to the hospital to review the patient’s records, speak to the family, clarify health-related information, and request permission for organ donation. Some OPOs have specially trained family counselors who request permission for donation from the family. If the family gives permission, the donation coordinator assumes the medical management of the donor, and all medical costs from the time of declared brain death are billed to the OPO, not to the patient’s insurance or family.

The refusal of families to grant permission is a major impediment to organ donation. Several factors have been shown to improve family consent rates. First, the request for organ donation should be separate—or “decoupled”—from the declaration of brain death. This allows the family time to understand and accept the concept of brain death. In this case, Justin’s mother may simply need more time to adjust and accept the death of her son. Second, the request for organs should be made by a trained OPO representative along with the hospital staff as a team. It is best that the physician or nurse caring for the patient not discuss organ donation with the family prior to OPO involvement. The hospital staff and OPO donation coordinator can work together to determine the best time to talk to the family. Third, the request should be made in a private and quiet setting. Higher consent rates have been shown to occur when these 3 procedures arefollowed [1].

Even when a patient has a signed organ donation card, the OPO oftenseeks family permission to proceed with donation. The Uniform Anatomical Gift Act (1968, revised 1987) established that a signed organ donation card is sufficient to proceed with donation, and it has been confirmed recently that such documents function legally as advance directives. In the UnitedStates, however, it is customary for the OPO to request permission from the next-of-kin due to fear of litigation.

Recently, several states have passed legislation establishing “first-person consent” whereby the family cannot override an individual’s documented desire to be an organ donor. Some states have established first-person consent registries for people interested in being deceased organ donors. This is based on the strong belief that the donor’s wishes should be adhered to. It is not dissimilar to a last will and testament that disposes of our personal property and assets after we die. Each year more states are passing first-person consent laws that are strongly supported by the OPOs and the transplant community.

Had Justin died in a state with first-person consent laws, the OPO would have informed the family of his pre-existing declaration to be an organ donor and would not have sought the family’s permission. First-person consent removes a burden from family members because they do not have to come to a decision while attempting to cope with the very stressful situation of the death of a relative. First-person consent also avoids the problem of family members’ disagreement, and it may benefit families later on: more than one-third of families whomade a decision themselves and declined to donate the organs subsequently regretted their decision [2].

In a case such as this one, where the mother and father disagree about organ donation, the donation coordinator would ask the mother why she was opposed to donation and would try to address her specific concerns. The coordinator would emphasize that her son had expressed a desire to donate and that his gift could save and improve the lives of several seriously ill patients. The coordinator would also try to dispel any myths about organ donation that Justin’s mother might have heard. It is important for her to understand that her son’s body will not be disfigured and that donation will not affect funeral arrangements or viewing of the body. Often times a hospital social worker or pastoral care representative can be called to counsel the family and resolve their disagreement. One of these individuals might have been able to help Justin’s mother agree to donation.

Because of the continued shortage of organs for transplantation, it has been argued that we should go beyond first-person consent and adopt the principle of “presumed consent.” Presumed consent has been legislated by many European countries with a resulting increase in organ donation rates [3]. Presumed consent is an “opt-out” policy in which everyone is considered an organ donor unless he or she registers opposition. This process contrasts with our current, “opt-in” system, in which the individual or next-of-kin must give explicit consent for organ donation. Individual choice is not removed in either case, but persons opting out have the additional responsibility of documenting their decisions. A recent analysis showed that the opt-out countries had a much higher organ donation rate than opt-in countries [4]. And in an online experiment, responders’ decisions about organ donation were dramatically influenced by whether the question was presented as an opt-in or opt-out choice; rates for donation doubled when the default position was opting out and documentation was needed to opt in; that is, to donate.

Once permission has been obtained, the donor is managed medically to maintain optimal organ function [5]. All organs are evaluated for their suitability for transplantation, the donor is screened for infectious diseases (eg, hepatitis, HIV), and blood and tissue types are obtained. The donor information is then entered into the national computer database maintained by UNOS (United Network for Organ Sharing) where it is matched with wait-listed patients. The computer produces a list of the potential recipients for each of the organs ranked by priority as determined by national organ allocation policies. At that point, the donor coordinator calls the transplant centers where prospective recipients are listed to ensure a recipient will be available and waiting for the organ. The organs are then removed in the hospital operating room, often by several surgical teams from different transplant centers in a manner that is respectful of the decedent and his or her family. The young patient in this case could potentially donate his heart, both lungs, liver, pancreas, both kidneys, and small intestine for transplantation,thereby benefiting as many as 8 recipients. He could help many more patients by being a tissue donor (corneas, skin, bone, blood vessels) as well. Many times families report great satisfaction after organ and tissue donation from knowing that so much good can result from so much pain.


References

  1. Gortmaker SL, Beasley CL, Sheehy E, et al. Improving the request process to increase family consent for organ donation. J Transpl Coord. 1998;8:210-217.
  2. DeJong W, Franz HG, Wolfe SM, et al. Requesting organ donation: an interview study of donor and nondonor families. Am J Crit Care. 1998;7:13-23.
  3. Gundle K. Presumed consent: an international comparison and possibilities for change in the United States. Camb Q Healthc Ethics. 2005;14:113-118.
  4. Johnson EJ, Goldstein DG. Defaults and donation decisions. Transplantation. 2004;78:1713-1716.
  5. Wood KE, Becker BN, McCartney JG, D’Alessandro AM, Coursin DB. Care of the potential organ donor. N Engl J Med. 2004;351:2730-2739.

Douglas W. Hanto, MD, PhD, is the Lewis Thomas Professor of Surgery at Harvard Medical School and chief of the Division of Transplantation at Beth Israel Deaconess Medical Center in Boston, Massachusetts.

Commentary 2

by Thomas G. Peters, MD

Patient-centered ethical dilemmas often arise in a trauma surgery rotation. For the medical student, a sudden and perplexing ethical dilemma may actually open the door to solving certain clinical problems and issues of family interaction.

In this case, there is no question that the patient, a 20-year-old man who sustained a massive head injury, is dead. With cardiorespiratory function being sustained artificially, the emergency room and trauma surgery staff have appropriately assessed the patient, tested and ruled out any possibility of survival, and determined the hopelessness of the patient care situation. With such a dire determination, however, comes new promise: helping others by way of organ donation. The student is a witness not only to the consequences of severe trauma, but also to the process of consent for organ donation.

The case narrative indicates that the patient, Justin, carried what we presume is a recognized legal organ donor card. Such a document is generally believed to be sufficient to go forward with organ donation. Some states including Florida, Pennsylvania, and Texas, have determined that the organ donor card is an end-of-life document that is afforded as much standing as a will or advance health care directive. Therefore, the issue of consent and legality of organ donation should not be a dilemma considering that a 20-year-old man is past the age of majority—18—in most states.

A dilemma does arise, however, because Justin and his father favor organ donation, but his mother does not. She is adamantly opposed to anyone removing organs from her son, and the story appears to end with the attending physician noting that mechanical ventilation and other support measures will be carried on until an agreement is reached regarding organ donation.

The best-known way to prevent the conflict between the mother and the father is for families to discuss organ donation before any tragedy occurs. Consent disagreements almost never arise when a family has talked about the idea of postmortem organ donation and the intentions of family members are fully understood by all.

It appears, however, that no such discussion took place between Justin and his parents, so the medical staff faces a dilemma: whether or not to maintain mechanical and artificial support, which use critical hospital resources, while the family is further counseled regarding organ donation. In fact, most acute care units have experienced similar circumstances, and giving time to grieving families in the final hours of life, whether organ donation is to occur or not, is not unusual. So, support might be continued for several hours during which resolution of the family conflict would become an important and, perhaps, intense matter.

The medical care team must, to the greatest extent possible, remove itself from this conflict resolution process and rely upon the expertise of the organ procurement professionals. It is likely that the procurement coordinator has been in similar situations, has been trained to deal with them, and will be able to adequately resolve most of the issues to the satisfaction of all. This professional should be able to apply techniques of personal communication to persuade the mother that the wishes of her deceased son should be honored.

In the majority of such situations, the procurement coordinator begins by facilitating an empathic discussion among all concerned persons with the aim of reaching a consensus on what the decedent really may have wanted. The presence of an organ donor card itself, while sufficient to preclude the need for family consent to organ removal, does not always silence the objections or satisfy the concerns of those who would prefer that organ donation not occur. Thus, the mother who is objecting might be given time to explore the reasons for her opposition to organ donation before being confronted about her son’s wishes. The astute organ procurement coordinator will use techniques of active listening to engage the reluctant—or opposing—person and to allow full expression of his or her thoughts and feelings. It is never enjoyable to talk about recovering organs from a young person who has died unexpectedly. The waves of emotion that must overcome parents are best managed by those trained to listen and respond appropriately in such difficult family circumstances.

Over a period of several hours, the effective procurement coordinator will have established a relationship with the mother and permitted her to work through the early stages of grief and to have her questions regarding organ donation and transplantation answered. It is highly likely that the mother will ultimately come to the understanding that her son’s wishes should be honored, even if she opposes organ donation.

It is, of course, possible that the organ procurement specialist is not as talented as one would wish, or that the mother remains adamantly opposed to organ removal no matter what. In such a case, the organ procurement team is beset with a difficult decision: whether or not to go forward with organ recovery since the signed donor card is suitable consent, and, thus, leave the family in conflict. The family would be left in conflict if organs are not recovered anyway, since the father favors organ donation. In the circumstance of unsuccessful counseling, the organ procurement agency would need to examine the procedures and experiences that have allowed for the best outcome of potential donor families and others. In many such situations, organ recovery is accomplished even when objections persist. While the family dilemma goes on, lives of other critically ill persons will be saved by organs recovered from the dead trauma victim.

Thomas G. Peters, MD, is a professor of surgery and chief of the Transplant Service at the University of Florida Health Sciences Center in Jacksonville. In 1988, Dr. Peters organized and directed the Jacksonville Transplant Center at Methodist Medical Center and served as chairman of the Department of Surgery at Methodist Medical Center for 10 years. He was co-chief of surgery at the University of Florida and Shands Jacksonville from 1989 until 2001.

Commentary 3
by Richard J. Howard, MD, and Danielle Cornell, BSN

The death of most people who become deceased organ donors is sudden, unexpected, and frequently tragic. The families of these donors are almost never prepared for this unfortunate situation. In addition to dealing with an unexpected injury or intracerebral accident, the family must come to terms with the fact that their loved one is dead. They may have a difficult time accepting this since the patient has a heartbeat, a measurable blood pressure, produces urine, and has good skin color and other indications that suggest life. Many individuals (even physicians) do not understand the concept of brain death. And now someone the family has not seen before comes in from something called an organ procurement organization and asks permission to remove the organs of their son or mother or sister for transplantation. The stresses associated with the initial injury, the death, and now the request for organs cannot be underestimated and can be difficult for anyone who has not gone through this process to fully appreciate.

Yet organ donation can salvage a great deal of good from a tragic circumstance. Knowing that their loved one can save and improve the lives of other individuals through organ and tissue donation can be a source of great solace and comfort. The organ donation can become a living memory of and tribute to their relative.

In the example cited here a 20-year-old man, Justin Lewis, died in an automobile accident, and testing showed he was a suitable potential organ and tissue donor. In this particular case, it was discovered that he had signed an organ donor card. The Uniform Anatomical Gift Act (UAGA) of 1968 clearly indicates that a donor card signed in the presence of 2 witnesses is legally binding. The act was adopted by all states within 3 years. Many organ procurement organizations (OPOs), however, do not take advantage of this provision because they are concerned about their relations with the family as well as about potential legal disputes and adverse publicity that could result in a decline in organ donation should they act upon the donor’s consent—even though such worries have not proved to be an issue in most places.

States have responded to this concern, and legislation authorizing the donors intent, called “first-person consent,” has now been enacted in 42 states. These laws acknowledge that a documented donation decision (donor card, drivers’ license, donor registry, etc) that has not been revoked by the donor prior to death, is legally binding and does not require the consent of any other person upon death. Despite this legislation, many OPOs are still reluctant to pursue first-person consent. Fifteen years following the enactment of the UAGA, OPOs in only 4 states reported they were actively practicing first-person consent organ donation recoveries.

In the case of this 20-year-old designated donor, our organ procurement organization, would have modified its approach to the family. The staff would have notified the parents that their son had clearly showed his intent to be a donor by so designating on his driver’s license and that we planned to honor his wishes. Even if both parents disagree with organ donation, the signed organ donor card is sufficient permission for the OPO to recover organs for transplantation. We have had only a few differences of opinion with the donors’ legal next of kin in honoring first-person consent.

The case of Justin Lewis would not be unmanageable for an OPO that is actively pursuing first-person consent cases. The OPO staff must discuss organ donation and what it entails with the family and answer their questions in a supportive, non-confrontational, non-threatening manner. We have found that much of the objection to organ donation is due to lack of accurate information. For instance, some individuals believe that if organ or tissue donation occurs, there can be no viewing of the body afterwards. Some will agree to organ donation once they realize that a viewing can still take place and that no incisions will be made on the head or neck.

Parental or next-of-kin refusal often has less to do with the concept of organ donation than with control or authority for decision making for their injured and now dead relative. Building a relationship with the family by asking questions about what type of person their relative was can assist in establishing communication related to the patient; the importance of this relationship cannot be overstated. Having a sympathetic OPO coordinator or designated requester who is willing to take time with the family, hear their concerns, and answer questions frequently means the difference between obtaining permission and being met with refusal. Asking the parents if they understood what the physician told them about brain death also provides an opportunity for educating and trust-building.

Even if the OPO staff or other designated requestors aren’t negotiating with family members to obtain consent, they should still speak to the next-of-kin in a quiet room that is softly lit and has enough chairs so that no person is left standing. The number of people in the room should be limited to 1 or 2 family members. The more people who are in the room, the more likely someone will object to donation. It is important for the requestor staff to state that the adult decedent willingly made a choice to give the “gift of life” upon his or her death, and that the purpose of the meeting is to answer any questions they may have about the procedure and to ask some questions about the medical history of the donor.

Although the law is on the side of the designated donor, it is critical to procurement organizations, transplant centers, and recipients that the OPO make a concerted effort to establish a cooperative relationship with the family. Legal and public conflicts that could result in fewer donors must be avoided. Willing participation from the family will also enable the procurement coordinator to obtain a thorough medical and social history, and will allow him or her to explain the procedure fully, confirm that donation will not interfere with the funeral, clarify that the OPO will assume hospital costs related to the donation, and convey much other information.

Perhaps the most compelling reason to establish a positive relationship with the family of a potential donor is the benefit it offers to the future of organ donation. Working cooperatively with the donor family will result in a positive continued relationship. The surviving family members of a donor are known as donor families, and, in our mission to increase awareness of the need for more organ donors, donor families remain an unparalleled resource for promoting the message.

When an OPO makes the choice to recover organs from a designated donor against the family’s wishes, an ethical balancing act may ensue. Some would argue that the wishes of the surviving family members should be given primary consideration; that procuring organs from a deceased patient in opposition to the family’s desire will add to their grief, especially in the case of parents. But others will dispute that the surviving family members deserve primary consideration, arguing that the patient’s wishes to be an organ donor upon death must be honored. Is it ethical for the OPO to walk away from a patient and not honor the documented decision he or she made while alive? Is it defensible to decide not to attempt to place and procure organs for transplant because the family doesn’t agree with the decision the adult patient made during life? Finally, is it right to ignore the patient’s request because he can no longer speak for himself?

Would we deny living patients’ the right to decline blood products, to see their religious representative, or to decline cardiopulmonary resuscitation? The answer, simply, is no. People who make the decision to become donors during their lives have a right to have that decision carried out upon their death. It is not ethical for an OPO to refuse to recover organs only because the donor can no longer speak for himself or herself. We believe the wishes of someone who signs a donor card should be respected even if the family disagrees. And yet we realize there may be unique circumstances where pursuing first- person consent might not be in the best interest of the family or of the transplantation community. Every potential donor situation has unique aspects. While some OPOs err on the side of the designated donor, there is no 1 formula that will always guarantee a good outcome.

There are also times when a disagreement about donation cannot be resolved among family members (and where the donor has not indicated his wishes while alive). If a resolution is not attainable despite the best efforts of the OPO coordinator, it may be appropriate for the OPO to withdraw and make no further efforts to get those who object to donation to change their minds. In these situations the family usually comes to a consensus and refuses permission for donation. If, for example, the family stated that the patient, in the presence of his mother, girlfriend, or other family member, verbally revoked his decision to become a donor, the OPO would have to withdraw all attempts of obtaining consent for donation.

Richard J. Howard, MD, PhD, is the Robert H. and Kathleen M. Axline Professor of Surgery and head of the Division of Transplantation at the University of Florida. Dr. Howard is also the past president of the American Association of Transplant Surgeons and is a member of the Board of Directors of UNOS (United Network for Organ Sharing).

Danielle Cornell, BSN, is the executive director of LifeQuest Organ Recovery Services, the organ procurement organization (OPO) that serves northern Florida.

The people and events in this case are fictional. Resemblance to real events or to names of people, living or dead, is entirely coincidental. The viewpoints expressed on this site are those of the authors and do not necessarily reflect the views and policies of the AMA.

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bob minus Jay full shotBob Aronson is a 2007 heart transplant recipient and the author of most of the more than 200 Bob’s Newheart blogs.  On occasion we publish guest blogs and welcome submissions.  We cannot guarantee that your submission will be used and it will not be returned.  We reserve the right to edit guest blogs but will always give full credit to the author or source. 

Today’s post is the last one of 2013.  Bob’s Newheart blogs are read in 142 countries and average 5,000 readers per month, mostly from the United States with English speaking countries rounding out the top ten.

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We send our best wishes and hopes that all of our readers, followers and friends have a happy, peaceful and safe holiday season. 


By Bob Aronson

pain from the spouse pount of view

Chronic pain is of major interest to me because I suffer from it and have been denied treatment as well.  I have an established record as a sufferer and one who has tried a wide range of alternatives to the “controlled substances” the medical profession is so reluctant to prescribe.  I understand that we have a serious addiction problem in this country and that a very tiny minority of physicians over-prescribe controlled substances like Vicodin and Oxycodone.

I also understand that the U.S. Food and Drug Administration  (FDA) and the Drug Enforcement Administration (DEA) are cracking down hard on this activity but in the process are intimidating the entire medical profession in order to rout out the few who recklessly dispense narcotics to nearly anyone who wants them.  I know from first-hand experience and from the testimony of others that many physicians are so intimidated they refuse to prescribe pain killing narcotics to anyone.  I get all that and outline it in detail in this post.

Conversely, I believe that physicians have a unique opportunity and even an ethical responsibility to act as patient advocates rather than to retreat under fire and refuse treatment to those with legitimate pain issues.  The oath that says, Hipocrates“First, do no harm,” is broken any time relief is available but refused not because there is evidence that the patient is being dishonest but because the physician fears investigation. That to me is unconscionable and a terrible disservice to patients. Too many doctors at too many institutions have been intimidated by the threat of investigation and it is patients in pain who suffer as a result.

The publication, Scientific American  says this of chronic pain:  “Anyone living with chronic pain knows that it amounts to much more than an unpleasant bodily sensation. Fuzzy thinking, faulty memory, anxiety and depression chronic pain graphicoften accompany long-term pain, suggesting that the condition is more of a whole-brain disorder than simply pain signaling gone haywire. New research from Northwestern University reveals a possible cause: an impaired hippocampus, a region critical for learning, memory and emotional processing (you can read more by clicking on this link) http://www.scientificamerican.com/article.cfm?id=how-chronic-pain-affects-memory-mood

While chronic pain is a recognized medical condition that often can only be treated with controlled substances it is becoming more and more difficult to find physicians who will prescribe them.  The reasons? Abuse, misuse, suicides, crime, greed and among physicians fear and intimidation.

On October 24, 2013 this headline greeted readers when they picked up their morning paper; FDA Crackdowns on Painkiller DrugsThe move was prompted by one drug in particular — Hydrocodone otherwise known as Vicodin the highly addictive painkiller that has grown into the most widely prescribed drug in the U.S.

vicodinIn a major policy shift, the agency said in an online notice that hydrocodone containing drugs should be subject to the same restrictions as other narcotic drugs like oxycodone and morphine.  What this means is that the regulating agencies first made it difficult to get the major pain killers and now are restricting lesser ones as well.  The question is where will it stop and how will chronic pain sufferers be affected? History tells us that actions like this will cause fewer prescriptions to be written but that many patients who legitimately need these drugs will be caught up in the dragnet and lose their relief.

The latest move comes more than a decade after the Drug Enforcement Administration first asked the FDA to reclassify hydrocodone so that it would be subject to the same restrictions as other addictive painkilling drugs.

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Florida is or was at the epicenter of an explosion in narcotics prescriptions written by unscrupulous physicians who provided narcotics to almost anyone for exorbitant prices.  Pharmacies were caught playing the game with these docs and while the action by the feds reduced the number of pill mills, it also caused great agony for those who suffer from chronic pain and could no longer get relief. (http://www.firstcoastnews.com/news/health/article/333761/10/Pill-mill-crackdowns-hurting-those-in-real-pain

I will return to the legal and ethical conundrums faced by physicians and pharmacists shortly but let’s step back for just a moment or two to look at the human side.  The millions of people who suffer from chronic pain and who depend on controlled substances to provide them with some semblance of human life…and I’m one of them.

American pain foundationThe American Pain Foundation says that chronic pain is a complex condition that affects almost 50 million Americans.  Even after decades of research, chronic pain remains poorly understood and hard to control.

Chronic pain can be severe, so severe it has driven some to take their own lives.  It is a major problem and often even the most potent of pain killers has only a minimal effect.  Here’s how two patients describe their daily battle with chronic pain.

“It feels as though someone has stuck a white hot poker into the bones at the top of my spine and the base of my neck.  The pain radiates to both shoulders and down my back. I cannot stand without help and cannot sit in any one position for very long.  Turning my head is too painful to even contemplate.  Like a master torturer the pain seems to know just where to attack next to make me confess and confess I would – to anything at all if it would just go away for a few minutes.”  That’s the testimony of a Frank R. a Michigan man suffering from chronic pain brought on by osteoarthritis.

In the state of Virginia Mary T. says this. “It is my lower back and both of my legs.  The pain is not intense it is beyond that and it is unrelenting.   Sometimes I am so tired out from battling pain all night I will just sit and cry but the pain monster takes no pity.  I cannot walk without support, so now I have a cane which helps me get around but the pain doesn’t want me to walk and has begun attacking the arm and hand I use to hold the cane.  Death would be a relief; I can’t go on living like this.”

Frank and Mary are fairly typical chronic pain sufferers.  Both take narcotics to manage the pain neither gets much relief anymore because of building high tolerances for opiates.  Both have tried almost everything modern medicine has to offer and narcotics are all that is left to help them but because tolerances go up, one is forced to take more and more of the narcotic until finally the pain subsides – it doesn’t go away it just backs off for a while but the massive doses of narcotics can leave the patient in an almost Zombie like state, unable to concentrate or focus on any task and sleepy, so sleepy that some days patients don’t bother to get out of bed.  The result is that while the pain may be minimized so is the patient’s quality of life.

A survey by the American Academy of Pain Medicine found that even comprehensive treatment with painkilling prescription drugs helps, on average, only about 58% of people with chronic pain.  

What causes chronic pain, and what can you do about it?

Some cases of chronic pain can be traced to a specific injury that has long since healed. Other cases have no apparent cause — no prior injury and an absence of underlying tissue damage. However, many cases of chronic pain are related to these conditions:

  • Low back pain
  • Arthritis, especially osteoarthritis
  • Headache
  • Multiple sclerosis
  • Fibromyalgia
  • Shingles
  • Nerve damage (neuropathy)

Treating your underlying condition is important. But often that does not resolve the pain issue.  Increasingly, doctors consider chronic pain a condition of its own, requiring pain treatment that addresses the patient’s physical and psychological health.

Chronic pain can leave a person almost unable to function and the medical profession doesn’t seem to know what to do about it because they are getting mixed messages from state and federal governments. 

On one hand government says, ”Treat the patient, give them what they need to manage pain,” and on the other the Feds in particular are saying, “There are too many greedy quacks out there handing out narcotics like Pez dispensers and it has to stop.”  Here’s why:

centers for disease controlEarlier this year the Centers for Disease Control and Prevention reported that prescription painkiller overdose deaths among women increased about fivefold between 1999 and 2010. Among men, such deaths rose about 3.5-fold. The rise in both death rates is closely tied to a boom in the overall use of prescribed painkillers. 

The result is that many major medical centers are playing it safe and prescribing narcotics for short term relief following surgeries and a few other specific situations like terminal cancer victims but otherwise are telling patients to see their primary physician for pain relief.  The reason cited by many medical centers is that the laws are incredibly complex and therefore vague. For example, here’s just a short section of New York law (you can read all of it herehttp://www.medscape.com/resource/opioid/opioid-newyork

License. Only practitioners who are properly licensed and registered may issue a prescription for a controlled substance. Section 80.64 contains the full information about who may issue controlled substances.

Purpose of a Prescription. A prescription is the instrument to legalize an ultimate user’s possession of a controlled substance. To be effective then, a controlled substance prescription should be issued for legitimate medical purposes only. Section 80.65 contains the full text.

Initial and Corresponding Responsibilities: Prescriber and Pharmacist. The responsibility for the proper prescribing and dispensing of controlled substances is on the physician, dentist, podiatrist, veterinarian, or other authorized practitioner, but a corresponding liability rests with the pharmacist who fills the prescription.

A practitioner cannot supply prescriptions to maintain an addict or habitual user of controlled substances. There are some exceptions and practitioners should read the New York law very carefully. An order purporting to be a prescription issued to an addict or habitual user of controlled substances not in the course of professional treatment but for the purpose of providing the user with narcotics or other controlled substances sufficient to keep him or her comfortable by maintaining his or her customary use is not a prescription within the meaning of New York law.

It is no wonder physicians are reluctant to prescribe opiates, they fear losing their licenses.  In the preceding paragraph physicians are told they cannot provide controlled substances to addicts or habitual users but many people with chronic pain ARE habitual users and they may be addicted as well, and the New York law could easily be interpreted to read that prescribing controlled substances to chronic pain sufferers is a violation of the law.

In a document with the unwieldy title of; Use, Abuse, Misuses, and Disposal of Prescription Pain Medication Time Tool Clinical Referenceamerican college of preventive medicineThe American College of Preventive Medicine (ACPM) states its position on the patient’s right to pain relief very clearly but the issue gets clouded in the “Challenges” section.  It is easy to see why many physicians find it easier to “pass the buck” by saying, “See your primary care physician for narcotics,” or, “See a physician who specializes in pain for treatment with controlled substances (for the full transcript and more click on this link: http://www.acpm.org/?UseAbuseRxClinRef

 INTRODUCTION – THE RIGHT TO PAIN CONTROL

Adequate pain control is a fundamental right of every patient [1]. A consensus statement from 21 Health Organizations and the Drug Enforcement Agency (DEA) conclude that “Effective pain management is an integral and important aspect of quality medical care, and pain should be treated aggressively… Preventing drug abuse is an important societal goal, but it should not hinder patients’ ability to receive the care they need and deserve.” [2]

The consequences of not treating pain are significant [1] [3] and confer a tremendous economic impact [4]. Post-surgical pain increases heart rate, systemic vascular resistance, and circulating catecholamines, placing patients at risk of heart attack, stroke, bleeding, and other complications. Unrelieved acute pain often evolves into chronic pain syndromes, which are linked to a constellation of maladaptive physiological, psychological, family, and social consequences that result in:

  • ·        Reduced mobility; loss of strength
  • ·        Disturbed sleep
  • ·        Decreased healing due to immune system impairment
  • ·        Increased susceptibility to disease
  • ·        Dependence on medication
  • ·        Codependence with family members or care givers
  • ·        Psychological ramifications (depression, anxiety, social withdrawal)
  • ·        Slower return to function
  • ·        Decreased quality of life

. UNIVERSAL CHALLENGE

  • Physicians are currently challenged to deal with the “perfect storm”—a confluence of pain control versus risk of misuse and abuse of prescription medications [5].
  • This perfect storm is co-incident with the more general rise in unintended overdose deaths that may have resulted from aggressive efforts to have physicians treat pain without the education, skill and resources to manage the physiological and psychological complications that can arise when treating a patient for a chronic pain condition. Physicians must be able to safely and effectively prescribe scheduled drugs and, at the same time, must identify and manage misuse and abuse in their practices [6]. Ethics drive physicians to prescribe, but fear of sanctions may affect physician prescribing behaviors, which might compromise quality of care. The problem cannot be ignored because abusers often face complications, such as: [7]
    • ·        Overdoses
    • ·        Addiction and dependence
    • ·        Adverse effects
    • ·        Social and family dysfunction
    • ·        Criminal consequences

The universal challenge is to adequately control pain, having a variety of etiologies, in an environment where evidenced-based medicine is lacking or in conflict, while identifying and managing high risk situations, and possibly treating addictions resulting from initial pain control efforts. Physicians confront the dilemma of balancing pain relief against the reality that some patients may misuse and divert these medications. The scale weighs public health priorities against individual pain and suffering [8].

Some physicians are so nervous about prescribing painkillers that they just flat out refuse to do so. I had it happen to me at of all places a well-known pain clinic.  These physicians fail to recognize chronic pain for what it is and want to find the underlying condition that causes the pain but the fact is the pain is the underlying condition.

J. Donald Schumacher President and CEO of the National Hospice and Palliative Care Organization says, “According to a recent report from the Institute of Medicine, chronic pain itself can be the problem. Such pain can cause changes in the nervous system that worsen over time — even after the original source of the pain has gone away.

Because many doctors are not properly trained in the study of chronic pain, patients often suffer unnecessarily. One study of nursing home residents with chronic pain found that 44 percent were not getting any treatment at all.

In some cases, the need for pain treatment may not be obvious. Older patients, especially those with dementia, often struggle to communicate their needs.

Yet according to a report from the Hartford Institute of Geriatric Nursing at New York University, the burden to communicate with patients who may be in pain does not rest with the patients. Clinicians must take on that duty. They can do so by learning to identify non-verbal behaviors, such as “agitation, restlessness, aggression, and combativeness,” which “are often an expression of unmet needs.”

Old age must not become an excuse for the failure to pursue effective treatment for pain.

Of course, patients must assume some responsibility for treating their pain, too. Approximately 50 percent of patients do not take their medication as prescribed. Many mistakenly wait for pain to recur before administering another dose. Such on-again, off-again treatment just results in cycles of pain — rather than preventing it altogether by maintaining adequate levels of medication in the bloodstream.”

Schumacher also believes this, “Whatever the condition causing the pain, the person best equipped to take the lead in finding the proper treatment is the sufferer. People know their own bodies, and they can judge when medications are inducing unwanted side-effects.

No one deserves to be incapacitated by chronic pain. The means to alleviate it are available. All that’s required is the will to find the right treatment.”

So what else can patients do to get relief when the system seems obsessed with denying it?

In a Web MD Story, Rollin M. Gallagher, MD, MPH, director of pain management at the Philadelphia VA Medical Center said, “Today’s pain specialists understand how the sensation of pain occurs — how the nervous system, including the spinal cord, interacts with the brain to create that sensation.

Insights into the neurotransmitter system — the chemical messengers that pass nerve signals — have opened the door for important new modes of chronic pain relief, he explains. In recent years, scientists have learned how to manipulate those chemical messengers to change the way they interact with the brain’s signals.

That’s led to use of antidepressants and other drugs that work with specific brain chemicals that affect emotions, and help with perception of pain. We now have a whole new host of medications that are very effective for chronic pain relief,” Gallagher tells WebMD. http://www.webmd.com/pain-management/features/chronic-pain-relief-new-treatments 

medtronicIn November of 2011 Medtronic Corporation the manufacturer of a wide variety of medical devices announced a new treatment for chronic pain. In a news release the Minnesota corporation said, “The U.S. Food and Drug Administration (FDA) has approved AdaptiveStim™ with RestoreSensor™ neurostimulation system, the first and only chronic pain treatment that harnesses motion sensor technology found in smart phones and computer gaming systems to provide effective pain relief and convenience by automatically adapting stimulation levels to the needs of people with chronic back and/or leg pain.

The news release went on to say, “Data from the U.S. RestoreSensor clinical trial demonstrate that the AdaptiveStim with RestoreSensor neurostimulator provides effective pain relief and convenience. At the end of the study, 86.5 percent of study participants with chronic pain, who were included in an intent-to-treat analysis (n=74), experienced somewhat better or much better pain relief with no loss of convenience, or somewhat more or much more convenience with no loss of pain relief, when the device’s AdaptiveStim technology was turned on, compared to a control period when the participants manually adjusted neurostimulation settings using a patient programmer. With AdaptiveStim, study participants reported functional improvements, including improved comfort during position changes (80.3 percent).”

Not to be outdone, Boston Scientific is also in the chronic boston scientificpain management business On April 12 of this year they announced, Boston Scientific Corporation (NYSE: BSX) has received approval by the U.S. Food and Drug Administration and is beginning a limited launch of the Precision Spectra Spinal Cord Stimulator (SCS) System.  The Precision Spectra System is the world’s first and only SCS system with Illumina 3D™ software and 32 contacts, and is designed to provide improved pain relief to a wide range of patients who suffer from chronic pain.

The news release added, “The Precision Spectra System represents a paradigm shift in spinal cord stimulation,” said Giancarlo Barolat, M.D., medical director of Barolat Neuroscience in Denver.  “The Illumina 3D Software is the first SCS programming technology based on advanced anatomical and scientific principles.  When combined with 32 contacts and four lead ports—twice that of any other SCS system—the Precision Spectra technology gives physicians more flexibility to customize therapy for patients.”  

Medications for Treating Pain http://www.livestrong.org/we-can-help/preparing-yourself/finding-a-counselor/

Cancer pain is often treated with one or more medications. If you have concerns about taking certain medication, discuss this with your health care provider and pharmacist. Ask about long-term medication usage and side effects, such as allergies, constipation, sedation, memory impairment or other reactions.

  • For mild pain: Medications such as acetaminophen or non-steroidal anti-inflammatory drugs (NSAIDs) may provide relief. Some of these drugs, such as ibuprofen or naproxen, can be purchased without a prescription.
  • For moderate pain: Medications that combine an opioid (sometimes called a narcotic) such as hydrocodone or oxycodone with acetaminophen or aspirin may be needed. Vicodin and Percocet are examples.
  • For severe pain: Medications that contain an opioid only (sometimes called a narcotic) such as morphine, oxycodone, fentanyl or methadone are usually needed. These narcotic medications may be given orally or intravenously (or sometimes both).
  • For bone pain: When associated with metastatic cancer treatment for bone pain can include bone-strengthening steroid medication known as bisphosphonates. (Radiation therapy and surgery may also be very effective in relieving symptoms.)
  • Antidepressants medications: Amitriptyline and duloxetine, for example, can be very helpful in managing chronic pain.
  • Gabapentin and pregabalin: Originally developed to treat epilepsy, these can also be used for chronic pain, including neuropathic pain caused by nerve injury.
  • Topical anesthetics: Lidocaine pain patches, for example, may be helpful in some cases.

Complementary Pain Relief Options

Complementary (also called alternative or holistic medicine) treatments include massage, acupuncture, meditation, biofeedback or hypnosis. For some types of pain, heating pads, hot or cold packs and massage may be soothing and can help to reduce pain.

A health care provider may recommend counseling to help a patient cope with their pain or other distressing symptoms. Stress can make pain worse. It can also lessen the effect of pain management medications.

To learn more about these types of therapies, contact the National Cancer Institute. Talk with your health care team if you are interested in adding a complementary method of treatment. Let them know about supplements and herbs you want to try. Some types of complementary treatments can interfere with treatments prescribed by your provider.

Stem Cell Therapy

While there is a great deal of anecdotal evidence that stem cell therapy has beneficial applications there is little real medical evidence and many researchers, physicians and regulators still view much of stem cell therapy as modern day quackery.

I know you can find many people who have had stem cell therapy and swear by it but to the medical community that is still anecdotal evidence unsupported by clinical studies and therefore “iffy” or even dangerous.  It is important to note that even among physicians who are among the most trusted members of our society, there are those whose greed supersedes professional ethics.  These charlatans prey on a trusting public and can do more harm than good.  An example is the FDA and DEA crackdown on hundreds of physicians who indiscriminately prescribe controlled substances to anyone who wants them.  The best advice always is, “Buyer beware!”

In researching the subject for this blog I was struck again and again by conflicting opinions which convinced me that it is nearly impossible for a lay person like me to sort out the science from the pseudo-science and offer sound advice. I am simply not qualified to do so which means the burden falls back on the reader and depends on the illness in question, its severity and what has been done to treat it in the past.

I can only suggest this.  There are claims being made by clinics all over the world about successful stem cell therapies covering everything from bad knees to multiple sclerosis.  If you are seeking such therapy start out by talking to your primary care physician and getting his/her advice.  If still not satisfied look for a respected specialist in the field at a major medical center and finally if you still need more information, look up a highly respected medical school that also does research into stem cell therapy and inquire with them about your concerns.  I would avoid calling the stem cell clinics that sell the treatment because there is no way you will get an objective response from them.

In December of 2012 I published a blog on the issue of stem cell therapy titled Stem Cell Therapy – Some Truth, lots of Snake Oil. http://bobsnewheart.wordpress.com/2012/12/03/stem-cell-therapy-some-truth-lots-of-snake-oil/

I spent a considerable amount of time researching the issue before posting and little has changed since then.  If Stem Cell therapy is a consideration for you please read it and click on the many links I have provided.  They may not give you the answers you want but they will give you objective and accurate information.  Ultimately the decision is yours and yours alone. The U.S. Food and Drug Administration (FDA) is still struggling with the stem cell issue and until they can sort it all out I would proceed with great caution.

As you can gather, there’s a lot of confusion and misleading information about stem cell therapy because research is really in its infancy.  The International Society for Stem Cell Research (ISSCR) has a lot of information about stem cells and lists 10 things you should know about the subject on this link http://www.closerlookatstemcells.org/Top_10_Stem_Cell_Treatment_Facts.html

Here is just one of the ten.

4.  Just because people say stem cells helped them doesn’t mean they did.

There are three main reasons why a person might feel better that are unrelated to the actual stem cell treatment: the ‘placebo effect’, accompanying treatments, and natural fluctuations of the disease or condition.

The intense desire or belief that a treatment will work can cause a person to feel like it has and to even experience positive physical changes, such as improved movement or less pain. This phenomenon is called the placebo effect. Even having a positive conversation with a doctor can cause a person to feel improvement. Likewise, other techniques offered along with stem cell treatment—such as changes to diet, relaxation, physical therapy, medication, etc.—may make a person feel better in a way that is unrelated to the stem cells. Also, the severity of symptoms of many conditions can change over time, resulting in either temporary improvement or decline, which can complicate the interpretation of the effectiveness of treatments.

These factors are so widespread that without testing in a controlled clinical study, where a group that receives a treatment is carefully compared against a group that does not receive this treatment, it is very difficult to determine the real effect of any therapy. Be wary of clinics that measure or advertise their results primarily through patient testimonials.

ISSCR offers a great deal more information on stem cell research and therapy on their home site at http://www.closerlookatstemcells.org/

Finally, Forbes magazine, admittedly very conservative in its approach to almost anything, ran this story about stem cells here’s an excerpt and a link. http://www.forbes.com/sites/gerganakoleva/2012/02/19/stem-cells-fda-and-the-edge-of-science-three-expert-viewpoints/

Forbes excerpt

“The question for us as a society is when something done at the edge of clinical care becomes something we want to study,” Scott observed. “My feeling is that in many cases clinics are scrambling to get approval, but don’t have the gravitas that the clinical literature provides that would give comfort to a regulatory agency or even an advisory board to say ‘go ahead and do it.’ So until we have a better idea of what the adverse effects would be, these things are moving too quickly.”

Other Pain Treatment Options

Biofeedback is a method that uses the mind to help with pain. Breathing exercises, relaxation techniques, yoga, tai chi, qigong, visualization, meditation or guided imagery exercises may also be effective. Sometimes, talking with friends, laughing or listening to music can offer a helpful distraction from pain.

For severe pain, a technique called a nerve block is sometimes considered. This procedure may involve injecting a substance directly into or around a nerve or around the spinal cord. These procedures block damaged nerves from sending pain signals to the brain so that the pain will not be felt. Nerve blocks may work to control pain for people who have advanced cancer or very painful nerve conditions. However, there can be serious complications associated with these procedures.

Talk with your health care provider about the benefits and risks before any treatment to decide what is best for your situation. Every survivor responds differently to pain management strategies. Open communication with your health care team can help you decide together what will work best to manage your pain.

Conclusion

After considerable research Bob’s Newheart has come to the conclusion that while there are forces at play that would deny patients relief from chronic pain, there is also help available.  Unfortunately the medical profession is more a part of the problem than the solution despite its protestations to the contrary.  For any doctor to deny relief to a patient with legitimate pain is to us a violation of their oath. 

Chronic pain is a medical reality that affects not only the body but the emotional stability of the patient as well.  Any patient who says, “I cannot go on living like this,” and is denied relief for fear of being investigated is in desperate straits.  When my pain specialist said to me, “I can’t give you narcotics, see your primary,” he was not only lying he was telling me he didn’t’ care about my pain.

Narcotics or controlled substances aren’t always the proper treatment but neither is denying these drugs to people who are in legitimate pain. 

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bob minus Jay full shotBob Aronson is a 2007 heart transplant recipient.  He is the founder of Facebook’s 3000 plus member Organ Transplant Initiative (OTI) and the author of most of these Bob’s Newheart Blogs. 

All that’s required to join OTI is that you support our mission and follow the rules for the group.  You can read about both in the “About” section on the right side of the OTI group page.

 

 

 


stop smoking cartoon

injured football playerAmericans are outraged when they hear that 12 high school and college football players die each year due to this brutal sport and we demand that something be done about it.

We demand greater regulation and protection for our youngsters upon learning the injured cheerleaderdangers of being a cheerleader and that five die in practice every year.

injured boxer70 fighters have died in the boxing ring since 1998 and the American public demands an end to the sport.

man hand with cig

443,000 die as a result of tobacco use every year and we hear not even a whimper from thought leaders, politicians or even the public.  And…we just accept the fact that our government makes billions of dollars in tax revenue on products that do not offer a single benefit but can kill or seriously injure those who use it

We almost totally ignore the fact that nearly 20 million (18,800,000) Americans have died as a result of tobacco products since the first warnings were put on cigarette packs in 1966. That is equivalent to wiping out the entire New York City metropolitan area and then some.

airbus a380-800Let me take the scenario a step farther. The Airbus A380-800 is the biggest airplane in the sky.  It can carry 555 people, maybe more depending on how the seats are configured.  What would you think, how would you react if two of these monstrous planes crashed every day, year after year after year?  I imagine the public outrage would be monumental.  Certainly the planes would be grounded wouldn’t they?

“But wait,” as the commercial says, “There’s more.”  What if these disasters were totally preventable?  What if the planes were crashing because of a faulty switch that everyone knew about but ignored — and the planes just kept on crashing killing 438,000 Americans a year — year after year.  Would there be outrage?  Would congress act?  Would there be demonstrations in the streets?  Count on it!

Why then is there no public outrage, no congressional investigation, and no mass media attention to that same number of people dying from totally preventable diseases caused by Cigarette smoke or other uses of tobacco products?

Are football players, cheerleaders and boxers lives important? Of course they are but how can we ignore nearly a half million deaths a year?  How?  Someone you know is going to die from the use of tobacco, it may have already happened.  We must, out of concern for one another rise up in protest and do whatever is possible to get people to quit smoking.

no smoking signI refuse to accept the “I’ve tried to quit smoking but I can’t” response because I tried and I did quit.  It took a lot of tries but I kept on quitting until I quit and that was 23 years ago.  Yes there is some discomfort hell there’s a whole lot of discomfort, but it pales in comparison to the discomfort of cancer, emphysema, and a host of other diseases.

I can give you a gazillion facts about cigarette smoke and how it can harm you, I can provide you with tons of scientific research that proves how deadly tobacco products can be and I can show you what it costs in terms of dollars and none of those things will convince a smoker to quit.  So I’m going to tell you about me.

I am almost 75 years old. I have already had a heart transplant, gastric surgery for ulcers; I have osteoporosis, osteoarthritis and Chronic Obstructive Pulmonary Disease (COPD).  Tobacco is likely the primary contributor to all of them.

Now you might ask, “What are you complaining about, you are 75?”  Well, let me put my health in perspective.  My father in law is 88 and in better shape than I am.  He has never had a cigarette.

Yes, I’m glad I’m alive but had I never smoked my quality of life would be a whole lot better.  My personal experience with the perils of smoking could fill several medical books but I’ll spare you that and give you the executive summary.

When I started smoking in 1954 it was not only acceptable it was recommended behavior.  This ad says it all. camels ad from 40s

I smoked for 37 years and often consumed up to four packs a day.  I quit smoking in 1991 after watching my father die of coronary artery disease and chronic bronchitis. He had been a heavy smoker.  He was 76 when he passed and so debilitated by lung and coronary artery disease he could not walk 50 feet without almost turning blue from lack of air.  He died gasping for air and nothing could be done for him.  I was there, I saw it first-hand.

I was there, too, when In November of 1998 I lost my wife of 35 years to lung cancer.  She, too, had been a heavy smoker.  She was diagnosed with the disease in 1996 when they found it in her legs.  It had already spread.  She went through both chemotherapy and radiation therapy — treatments that leave patients wishing they were dead.  So toxic are these treatments they nearly destroy the will to live but for a short time perhaps 14 months she got better and then in October of 1998 the cancer returned in a massive assault on her entire body from limbs to brain.

She died a horrible death and I watched every second of it.  I was holding her hand when I felt her body shudder for the last time and while saddened it was also a great relief that she had to suffer no more.  I could go on but suffice it to say that if you smoke, you could experience the same terrible ending. Smoking will kill you.  The only questions to be answered are when and how.

Now let me tell you about me and what cigarettes have done to the quality of my life and to my psyche.

When I quit smoking in 1991 I had already been diagnosed with Chronic Obstructive Pulmonary Disease (COPD) a progressive lung affliction that slowly takes away your ability to function normally because you cannot breathe like a normal person.  I’m not going to give you a medical explanation of COPD I’m going to let you experience it.

I could tell you about difficult breathing till the cows come home and you’ll say, “Yeah that sounds tough,” as you light another smoke — so try this.  Read the following instructions then bookmark this page and do what they say.

clothespin in nose 2Find a spring loaded clothespin if you can and pinch your nostrils shut.  Then find a drinking straw and place it between your lips as you would to  man with drinking straw in mouth 2drink a soda or a shake but instead of drinking anything breathe through the straw.

With it still in your mouth run around the room and continue to breathe through the little tube. It’s a bit of a struggle isn’t it?  Now crimp it somewhere so that it is only about half its normal size and continue to breathe through it.  Get used to that feeling because if you are a smoker that’s what you are headed for.

With normal lungs when you exert yourself you can open your mouth and breathe more deeply to get more air.  With COPD the crimped straw is all the capacity you have and as time goes on that very narrow passageway closes even more until you suffocate.  Fun way to die, huh?

Here’s what COPD has done to me.  And please, I do not want expressions of sympathy or of concern or support.  I got myself into this mess and I’m dealing with it.  I am telling this story because I want people to know what smoking will do to them.

When I emerge from the shower I have to sit to catch my breath, showering is too strenuous an activity.  The same is true when I get dressed — pulling my pants on and putting on a shirt leave me breathless.  If I have to bend over for any reason I am in major trouble because the action affects my diaphragm and further restricts my breathing so when I straighten up I am gasping for air.  There have been days when Robin has to put my socks on and tie my tennis shoes.

My COPD limits me to very little activity.  I have a disability parking permit but often the few spaces assigned are full (sometimes occupied by people who don’t belong there…”I just needed to go to the ATM”).  But tobacco has done other things to my body as well.  Just getting out of the car is sometimes an exhausting experience.

The Osteoporosis and osteoarthritis have left me unable to stand straight anymore because of extreme, chronic pain. I now must always use a cane when I walk and when I walk I don’t go very far or very fast.  I can hardly turn my head from side to side and nodding it up and down is just as difficult.  I cannot bold my head up anymore because of stiffness and pain.  It is tilted forward and looking down. My shoulders and neck always hurt and I am on narcotic pain killers because there is no other relief for me, I’ve tried everything.

The worst part of all of this is what it does to your self-respect and self-worth. another booth shot Call me a chauvinist if you like but when we go to Art Shows, Robin has to set up a tent and everything in it.  She has to carry heavy loads from our truck to the tent site and all I can do is watch.  I cannot even carry a small box any distance because the chevy express vanwalk tires me out.  Here I am a big strapping guy sitting in a van while my wife does all the work. I  often get looks of disgust from other artists who see Robin doing all the work as I sit in the truck reading.  I’ve been asked more than once why I’m not helping her. God knows I would give anything to be able to do so. Cigarettes have taken my health and even my dignity.

You might be asking yourself what all this has to do with organ donation/transplantation and related issues.  Well, let me tell you that if it weren’t for tobacco we might not have an organ shortage.  Tobacco has done two things to contribute to the ever widening gap between supply and demand.  First it destroys organs so people need transplants and secondly it can render your organs unfit for transplantation. So those who smoke are likely to need transplants but may be unsuitable donors (sign a donor card anyway…let the doctors decide).

I started this post by pointing out that tobacco (cigarette smoking and second hand smoke) kills 443,000 Americans a year.  Tobacco is the leading cause of preventable death in the world. Economic losses are also staggering. Smoking-caused diseases result in $96 billion in health care costs annually but that’s just the U.S.

The World Health Organization (WHO) takes the issue to another level.  Here’s what they say, “Tobacco use kills more than 5 million people per year worldwide. It is responsible for 1 in 10 adult deaths. Among the five greatest risk factors for mortality, it is the single most preventable cause of death.

  • Eleven per cent of deaths from ischemic heart disease, the world’s leading killer, are attributable to tobacco use.
  • More than 70% of deaths from lung, trachea and bronchus cancers are attributable to tobacco use.
  • If current patterns continue, tobacco use will kill more than 8 million people per year by 2030.
  • Up to half of the world’s more than 1 billion smokers will die prematurely of a tobacco-related disease

effects of smoking graphicFor roughly half of adult smokers it isn’t a question of if smoking will kill them but how — and most smokers erroneously think lung cancer is the biggest threat.  It’s a big one but the real threat is circulatory or cardiovascular disease.

It is a well-established fact that damage to normal blood flow is substantially worse than what is happening in your lungs.

According to the U.S. Centers for Disease Control, lung cancer is responsible for 28% of smoking related deaths while 43% are attributable to cardiovascular disease – primarily heart disease and strokes.

  • It’s easy to appreciate that the 43 cancer causing chemicals in each and every puff are slowly building an internal time bomb. What few comprehend is that it’s far more likely that smoking will cause some portion of their body’s blood piping to completely clog, with downstream oxygen deprived tissues suffocating and dying.
  • Picture the inside of once smooth coronary arteries whose job it was to feed our heart muscle oxygen instead gradually becoming narrower and narrower as they slowly fill with fats and cholesterols. Picture the same process occurring in blood pathways to the brain.
  • Eventually it happens. Complete blockage occurs. All downstream tissues serviced with oxygen by the blood vessel immediately begin to suffocate and die. By far the most common site of smoker circulatory tissue death is the heart muscle (a heart attack) followed by the brain (a stroke).

If you don’t care about yourself think about what your habit can do to others.  Second hand smoke is a killer, that’s no myth it is a fact smokers should consider before they light up near anyone.

A short summary of the effects of second hand smoke

From the Centers for Disease Control (CDC)

Health Effects: Childrencute kids

In children, secondhand smoke causes the following:

  • Ear infections
  • More frequent and severe asthma attacks
  • Respiratory symptoms (e.g., coughing, sneezing, shortness of breath)
  • Respiratory infections (i.e., bronchitis, pneumonia)
  • A greater risk for sudden infant death syndrome (SIDS)

In children aged 18 months or younger, secondhand smoke exposure is responsible for—

  • an estimated 150,000–300,000 new cases of bronchitis and pneumonia annually, and
  • approximately 7,500–15,000 hospitalizations annually in the United States.4

Health Effects: Adults

In adults who have never smoked, secondhand smoke can cause heart disease and/or lung cancer.3

Heart Disease

  • For nonsmokers, breathing secondhand smoke has immediate harmful effects on the cardiovascular system that can increase the risk for heart attack. People who already have heart disease are at especially high risk.3,5
  • Nonsmokers who are exposed to secondhand smoke at home or work increase their heart disease risk by 25–30%.3
  • Secondhand smoke exposure causes an estimated 46,000 heart disease deaths annually among adult nonsmokers in the United States.6

Lung Cancer

  • cancerous lungsNonsmokers who are exposed to secondhand smoke at home or work increase their lung cancer risk by 20–30%.3
  • Secondhand smoke exposure causes an estimated 3,400 lung cancer deaths annually among adult nonsmokers in the United States.6

There is no risk-free level of contact with secondhand smoke; even brief exposure can be harmful to health.

Our furry friends

It is bad enough that we are killing our friends, neighbors and children with smoke but innocent dogs, cats, puppy and kittenhamsters and birds are also victims. http://healthypets.mercola.com/sites/healthypets/archive/2009/09/17/how-cigarettes-and-smoking-impact-your-pets-health.aspx

  • A 2002 Tufts University study linked second-hand smoke to cancer in cats. The study found that cats living with smokers are twice as likely to develop malignant lymphoma—the most common feline cancer–as those in non-smoking households. Lymphoma kills 3 out of 4 afflicted cats within 12 months.

One reason cats are so vulnerable to the carcinogens in tobacco smoke is they are meticulous groomers. Daily grooming over a long period of time can expose their delicate oral tissues to hazardous amounts of carcinogens.

  • A 2007 University of Minnesota study showed that cats who live with smokers have nicotine and other toxins in their urine.
  • A 2007 Tufts School of Veterinary Medicine study linked second-hand smoke to oral cancer in cats (squamous cell carcinoma.) Cats living with more than one smoker and cats exposed to environmental tobacco smoke for longer than five years had even higher rates of this cancer.
  • A 1998 Colorado State University study, published in the American Journal of Epidemiology, found a higher incidence of nasal tumors and cancer of the sinus in dogs living in a home with smokers, compared to those living in a smoke-free environment. The nasal/sinus tumors were specifically found among the long-nosed breeds such as retrievers and German shepherds. Unfortunately, dogs with nasal cancer do not usually survive more than one year.
  • The same study showed higher lung cancer rates in short to medium nosed dogs who live with smokers, such as boxers and bulldogs. Their shorter nasal passages made it easier for cancer-causing particles to reach the lungs.
  • Another study published in the American Journal of Epidemiology found that dogs in smoking households have a 60 percent greater risk of lung cancer.

How to Quit Smoking

http://www.mayoclinic.com/health/nicotine-craving/SK00057

Tobacco cravings can wear you down when you’re trying to quit smoking or chewing tobacco. Delaying, internet alertavoiding triggers, yoga and nicotine replacement are among the ways to resist cravings.

By Mayo Clinic staff

For most tobacco users, tobacco cravings or urges to smoke can be powerful. But you’re not at the mercy of these tobacco cravings. When an urge to use tobacco strikes, remember that although it may be intense, it will be short-lived, and it probably will pass within a few minutes whether or not you smoke a cigarette or take a dip of chewing tobacco. Each time you resist a tobacco craving, you’re one step closer to stopping smoking or other tobacco use for good. But it can be difficult.

So here are 10 ways to help you resist the urge to smoke or use tobacco when a tobacco craving strikes, no matter where you are:

  1. Delay. If you feel like you’re going to give in to your tobacco craving, tell yourself that you must first wait 10 more minutes and then do something to distract yourself for that period of time. This simple trick may be enough to derail your tobacco craving. Repeat as often as needed.
  2. Don’t have ‘just one.’ You might be tempted to have just one cigarette to satisfy a tobacco craving. But don’t fool yourself into believing that you can stop at just one. More often than not, having just one leads to another, then another — and you may wind up using tobacco again.
  3. Avoid triggers. Urges for tobacco are likely to be strongest in the situations where you smoked or chewed tobacco most often, such as at parties or bars, in the car or while watching television. Identify your trigger situations and have a plan in place so that you can avoid them entirely or get through them without using tobacco. Don’t set yourself up for a smoking relapse. If you usually smoked while you talked on the phone, for instance, keep a pen and paper nearby to occupy yourself with doodling rather than smoking.
  4. Get physical. Physical activity can help distract you from tobacco cravings and reduce the intensity of cravings. Just 30 minutes of moderate physical activity can make a tobacco craving go away. Get out for a walk or jog. If you’re stuck at home or the office, try squats, deep knee bends, push-ups, running in place, or walking up and down a set of stairs a few times. If physical activity doesn’t interest you, try prayer, needlework, woodwork or journaling. Or do chores for distraction, such as vacuuming or filing paperwork.
  5. Practice relaxation techniques. In the past, smoking may have been your way to deal with stress. Trying to resist a tobacco craving can itself be stressful. Take the edge off stress by practicing relaxation techniques. These include deep-breathing exercises, muscle relaxation, yoga, visualization, hypnosis and massage.
  6. Call reinforcements. Touch base with a family member, friend or support group member for moral support as you struggle to resist a tobacco craving. Chat on the phone, go for a walk together or simply share a few laughs — or get together to commiserate about your cravings.
  7. Remember the benefits of quitting. Write down or say out loud the reasons you want to stop smoking and resist tobacco cravings. These might include feeling better, getting healthier, sparing your loved ones from secondhand smoke or saving money. And if you’re a closet smoker, you may save hours of time since you no longer have to spend time trying to conceal your habit.
  8. Go online. Join an online stop-smoking program. Or read a quitter’s blog and post encouraging thoughts for someone else who might be struggling with tobacco cravings. Learn from how others have handled their tobacco cravings.
  9. Try nicotine replacements. Try a nicotine replacement product instead of a cigarette. Some types of nicotine replacement therapy, including patches, gums and lozenges, are available over-the-counter. Nicotine nasal spray and the nicotine inhaler are available by prescription, as are the stop-smoking medications bupropion (Zyban) and varenicline (Chantix).
  10. Chew on it. Give your mouth something to do to fight a tobacco craving. Chew on sugarless gum or hard candy. Or munch on raw carrots, celery, nuts or sunflower seeds — something crunchy and satisfying.

Remember, trying something to beat the urge is always better than doing nothing. And each time you resist a tobacco craving, you’re one step closer to being totally tobacco-free.

Electronic cigarettes

Electronic cigaretteThe jury is out but so far no evidence of harm from them. From what little research I’ve done, though, they may be a good alternative (that’s not smoke…it is a vapor that quickly dissipates). The cost is comparable to real cigarettes if not a little cheaper and those who have tried them say the effect is the same.  The difference is that you don’t get the carcinogens and other chemicals that are so deadly.  Follow this link for more information.  http://health.howstuffworks.com/wellness/smoking-cessation/e-cigarettes-help-stop-smoking.htm

Conclusion

You can quit smoking.  You must or it is quite likely you will die from it and your death will be less than pleasant.  There is plenty of help available.  Talk to your doctor, Google “How to quit smoking” you will find something that works for you.  Not every method works for everyone.

When I quit smoking in 1991 it was after several maybe scores of attempts, I lost track of how many.  I wish I had the money for every time I threw my cigarette lighter and cigarettes out the window of my car, only to buy more at the next stop. Finally, though, with the help of Nicotine gum I was successful.  I chewed that damned gum for two years after I quit and then switched to lemon drops for another two years but I am smoke free and loving it.  You can do it but you have to try and try and keep on trying until you quit for good.

smaller stillBob Aronson is a 2007 heart transplant recipient.  He is the founder of Facebook’s 3000 plus member Organ Transplant Initiative (OTI) and the author of most of these Bob’s Newheart Blogs.  All that’s required to join OTI is that you support our mission and follow the rules for the group.  You can read about both in the “About” section on the right side of the OTI group page.


“One can never pay in gratitude: one can only pay ‘in kind’ somewhere else in life.”

Anne Morrow Lindberg

A note from Bob Aronson

This post falls under the category of “Inspirational stories” in my blog index.  We’ve had several such stories but none outshines this one.  It is truly remarkable. 

“Officer Down” are two words no one ever wants to hear and we hope and pray they never have to be said again.  Too many fine young men and women have died in the line of duty.  This is the story of one of them and how despite his death a part of him lives on.

Officer david moore officer downDavid Moore of the Indianapolis, Indiana Metropolitan Police Department was an  “officer down” in that particular call.  He was a bright, energetic, well-liked and committed policeman who was taken from us in his prime.

Lance Lewis was struggling for every breath he took when Officer Moore was gunned down.  Lewis was suffering from a genetic lung disease that was destroying his lungs.  He never knew what it was like to take a normal breath, to run with other kids and take part in activities that called for exerting himself.  lance lewis croppedIt just wasn’t possible.  He is seen in the picture to the right some two and a half years before Officer Moore’s untimely death.  Lewis was extremely thin and struggling to make it through every day.

By now you’ve guessed that Lance Lewis was the recipient of David Moore’s lungs but if you stop reading here you will be doing both men and yourself a disservice.  You simply must read, re-read and digest this incredible story.

Everyone who gets a transplant has been through an epic journey and experiences all the extremes human emotions can allow.  And…no transplant patient travels the road alone.  It is usually a family affair, sometimes it’s a community affair but great numbers of people are ultimately involved in every transplant.

You don’t hear about donors quite as often as you hear about recipients for two reasons 1) most donors are deceased and 2) many donor families prefer to remain anonymous.  When recipients and donors or donor families do get together, which is not common, the story becomes doubly important.  The recipient gets a new life and the donor family most often has an uplifting experience and develops a strong relationship with the recipient of their gift of life.   Donor families often suffer great grief and then great joy simultaneously.  Grief from having lost a loved one and joy from knowing they saved at least one life and further joy often when they meet the recipient(s).

This blog is about two wonderful families and a sad but wonderful outcome.  It is a story that should be told again and again and again.  This is long for a blog, just like my last post, but I believe our readers want some meat on the bones of the stories I tell and this one has plenty of that.

Officer Moore was a true hero whose memory will live for a very long time.  Lance Lewis is also a hero because of the way he honors the gift of life from his donor.  Lance does everything he can to not only take good care of his new lungs but to keep this story alive in hopes that by telling and re-telling it he can encourage others to become donors as well.  These two men didn’t know each other but their lives intersected in a very meaningful way.

At the end of this post you’ll find an update from Lance Lewis and several pictures that relate to experience with his donor family along with his individual accomplishments.

A true organ donation story as

 reported in the Indianapolis Monthly magazine.

 by Evan West

12/27/2011

Two years ago, policeman David Moore was gunned down in the line of duty. A family lost their only son. But his lungs have given another man a remarkable second chance.


Editor’s Note, June 21, 2012: Thomas Hardy was sentenced to life in prison without parole in April. Eric Jenkins was indicted today on three counts of possessing a firearm as a convicted felon. Authorities allege that he sold the semi-automatic handgun noted in this story to Hardy in 2011.

When you’re on the list, you pick up the phone—middle of the night, in the bathroom, driving. Lance Lewis knew the statistics: on average, every day in the United States, 18 people on the list die waiting. When the phone rings, you answer.

Lance was on the couch when the call came. The computers had identified him as a potential match. He and his wife, Cathy, lived on the south side, and they would need to get to Methodist Hospital, in downtown Indianapolis, as soon as possible. “We think we have a pair of lungs for you,” the caller said.

The date was January 26, 2011. The last time a call had come, almost exactly a year earlier, Lance wasn’t ready. Making it through a lung transplant was difficult enough, even for a relatively healthy patient, and Lance had been recovering from a bout of pneumonia and had a fever. Several calls went back and forth between him and the hospital, touch and go, until doctors decided to move on to the next name on the list. He and Cathy cried. Then they regrouped. “That wasn’t the call,” she told him. “Those weren’t your lungs.”

The two had grown used to waiting. When Lance first went on the list, in 2003, about 30 other would-be recipients stood ahead of him. After two years, his name had moved up to number 10. When the Indiana Organ Procurement Organization, or IOPO, changed the rules so that the sickest patients would get lungs first, Lance dropped back to number 36. He and Cathy agreed it was only fair. His doctor suggested they pull his name off until things got worse. “When you get sicker,” he said, “come back and see us, and we’ll get you right back on.”

Now Lance had difficulty carrying a gallon of milk from the car and up the three steps to his front porch. He had used an oxygen tank off and on for the past two-and-a-half years—and for the last year, he had been hooked to the thing constantly. So when this pair of lungs became available, Lance’s name was near the top of the list. A blood test confirmed his match with the donor, and that night, at about 10:30, technicians wheeled Lance into an operating room. His adult children, two of whom lived hours away, arrived just in time to tell their father they loved him. They didn’t know if they would have the chance to tell him again.

In the waiting room, Cathy watched two televisions flash updates about a young policeman shot during a traffic stop a few days earlier, who was at another hospital just blocks away. It has been a turbulent few days for the Moore family and fellow IMPD officers, as David Moore has fought for his life … Now they’re forced to face the worst, as his battle has been lost … It seemed like everywhere she looked, Cathy saw a television with another report about that policeman and his parents. She felt like crying for them. And it seemed like everyone around her was talking about it. Strangers kept asking her why she was there. “My husband is having a lung transplant,” she told them.

David Moore grew up in a police family. His father, Spencer, served in Vietnam with the Air Force’s security police. In 1968, he joined the Indianapolis Police Department where he would climb the administrative ranks to the level of lieutenant.

After joining the department, Spencer founded Explorer Post 435, part of an outreach initiative for teenagers interested in law enforcement. In 1974, a 17-year-old high school senior named Jo Ann Cord—Jo, as her friends called her—walked into a meeting in a church on the south side. She had wanted to become a police officer since reading The Super Cops, an action-packed book about real-life New York policemen. The first day he met Jo—self-confident, outspoken, pretty—Spencer, then 30, says he knew he was going to marry her, even though she thought the older policeman was, in his words, “an unmitigated, arrogant asshole.” But past the wisecracking exterior, she saw a man who was fun, and caring.

Spencer asked Jo’s father for permission to “court” her. Jo wasn’t pleased. “I thought courting meant getting married, and I thought we were just dating,” says Jo. “I got all upset in front of my dad. Courting? What’s courting? Spencer was like, ‘Oh, good Lord,’ because it showed the 12 years of age difference.”

The following March, Spencer bought a pair of rings, then waited until Jo graduated, in May, to propose. “I told Spencer, ‘If you don’t want your wife to be a policeman, don’t marry me,’” she says. “That would have been a deal breaker.”

They married in the fall, and a daughter, Carol, came four years later. They had their second child, David, in 1981. When David was 4, Jo decided to join the department. In preparation for the entrance exams, she carried study materials around their southside tri-level to look them over while she did housework. One morning, she heard David crying in his room. “If you’re going to become a police man,” he asked her, his little face streaked red, “then who will be my mommy?”

Young David spent a lot of time around the department. Jo worked on Mounted Patrol, and he would feed and groom the animals in the horse barn. He also visited headquarters, where his father worked. “I was in administration, so I had offices instead of squad cars,” says Spencer. “People got to know him. David was just a nice kid, pleasant and respectful. He was always around police. Our friends were police. By the time David was into his formative years, that’s all he knew.” He talked about being a police officer when he grew up, just like his mom and dad.

David was a big, strong boy (he would grow to be over 6-feet tall and a muscled 200 pounds), but he was also kind, and children around the neighborhood looked to him to settle disputes. He and Carol, his older sister, were close. The two of them were home alone one day, and David, roughhousing, punched a hole in the wall. Carol carefully patched and painted it to hide the evidence. Their parents never knew about the damage until years later, when Carol, as an adult, finally copped to the cover-up.

From the time they were married, Spencer encouraged Jo to be an equal partner. He wanted her to know how to fix stuff around the house. Independent by nature, Jo relished such tasks, and Spencer would sometimes return from conventions to find that she had remodeled an entire room. Spencer had never wanted a “grocery-shelf” wife. More important, he says, “I knew that if something happened to me, she would be left alone.” The two bought funeral plots, so that if one of them was killed in the line of duty, the other wouldn’t have to decide in mourning where to hold the burial. “With him being a police officer, and with my years of service,” Jo says, “the idea of not coming home is kind of in the back of your mind.”

When David was 6, his parents brought him to a memorial service held for Officer Matt Faber, shot after entering an eastside home. When David was 11, he attended a service for Officer Teresa Hawkins, killed in a crash while driving her patrol car. The elaborate ritual, the regalia, the bowed heads, the tributes—all the trappings of the police funeral seemed to move him deeply. He looked off to the distance through the window of his mother’s squad car as the two rode along in the procession.

Cathy Lewis used to tell Lance that he moved “like a turtle,” because it took him a long time to do anything. They would go shopping, and he would still be climbing out of the car after she had already walked into the store. The two married in 1977, just six months after they met. (On their first date, he had moved to kiss her good night. “If you’re not looking for a real relationship, then you’d better run,” she told him, “because I could see myself falling for you.” He called her the next day.) Lance had never been particularly active; his mother told Cathy that, even as a boy, he frequently struggled with bronchitis. They had always assumed he had asthma. But over time Lance seemed to be getting worse. He would lose his breath and need to rest after simple tasks.

In 2000, when Lance was 43, he went to the doctor for chest X-rays. The doctor looked at the X-rays and recommended he see a pulmonologist. Then, the pulmonologist looked at the X-rays. “Lance,” he said, “you have the lungs of an 80-year-old man.” The images showed lung deterioration consistent with emphysema. But unlike the emphysema of, say, long-term smokers, which damages the lungs from the top, the deterioration in Lance’s lungs seemed to be spreading from the bottom. “I can tell you exactly what the problem is,” he said. “But we’ll have to do a blood test to confirm it.” A lab in California proved what the pulmonologist had surmised: Lance had alpha-1 antitrypsin deficiency, an inherited genetic disorder that allows the body’s immune system to attack healthy tissue in the lungs. Since birth, Lance’s white blood cells had been slowly devouring his ability to breathe.

Although Lance’s condition appeared in his lungs, the disease actually originates in the liver, which is supposed to produce an enzyme that prevents the lung damage. But no doctor would agree to replace a liver that was, as in Lance’s case, otherwise perfectly healthy. Eventually, Lance’s lungs would stop functioning completely—but no one could say for sure when that would be. Five years? Ten?

Lance would need a lung transplant to save his life. But he faced a difficult decision. If he did nothing, mortality would overcome him in a gradual, measured advance. On the other hand, lung transplantation carried tremendous risks. Recipients died on the operating table. They died when their bodies rejected the donor organs. They died of infection. The average five-year survival rate was a flat 50 percent. Lance had to weigh an impossible dilemma: When should he trade the certainty of a gasping, drawn-out demise for a surgery that gave him a 50/50 shot at a longer life—but also a 50/50 chance of dying even sooner than the disease would kill him?

Lance’s son, Jason, told Lance that he would “rather have a sick dad for 10 years than a healthy dad for five.” But three years after the diagnosis, Lance and Cathy decided to let doctors put his name on the transplant list.

Then they waited.

In 1996, David Moore enrolled at Franklin Central High School. Sometimes David got into fights. As a freshman, he had a man’s body and a deep voice, and when other children were bullied, they seemed to look to David for help. One day in the hall, a student dropped some books, and as others jeered and kicked, David stooped to help gather them up. When another boy persisted in kicking at the books, David shoved him away. A teacher contacted David’s parents and told them the altercation typified David’s troubles. “He is quite the protector,” the teacher said.

Before the school year was over, David’s parents moved him to Roncalli, a Catholic high school. Not long after starting there, he told his mother that a classmate had dropped some books on the floor, and David had braced himself for another fight—until everyone else bent to pick up the books. “He knew he had found a home,” says Jo.

“This big, burly guy just kind of walked in the middle of freshman year,” says Zack Conover, a close friend of David’s. “Everyone was gawking at him, because he had a full-grown beard, and he was real quiet. He intimidated a lot of people.” When David warmed up, though, Conover discovered that he was “a B.S.er.” He had a “shit-eating” grin (as David’s dad called it) that signaled his intentions for mischief. Conover, who played football with David, says he liked to sneak into the locker room and move around teammates’ photos and other personal items.

David became a star defensive end and co-captain on the Roncalli team that went undefeated and won a state championship in 1999. David excelled in the classroom as well, and he was drawn to the physical challenge and discipline of military training; as graduation approached, he fielded scholarship offers from The Citadel and the United States Coast Guard Academy. He opted for a Marine Officer NROTC scholarship at Purdue, in 2000, and once there, he left the same strong mark he had in high school. On one occasion, Spencer and Jo visited the school’s administrative offices, and the reaction they got made them think they had been mistaken for celebrities. “The place went crazy,” says Spencer. “You’re David Moore’s parents? Hey everybody, David Moore’s parents are here!

For David, a military career beckoned. He introduced his father to an old Marine master gunnery sergeant who worked with him at Purdue, and Spencer recalls the man telling David, “You are one of the few people I’ve met at your age that I’d follow anywhere—even into the gates of Hell.” When it became apparent that an old knee injury would keep David out of the Corps, a colonel pleaded with superiors to keep him.

But fate, it seemed, had other plans. In 2004, David, then 22, returned home to join the Indianapolis Police Department’s 102nd class of recruits.

Officer David Moore was driving a patrol car down Michigan Street in the near-westside neighborhood of Haughville, at close to midnight, when he heard bursts of gunfire. It sounded like they were coming from the side street he had just passed. Another officer patrolling the area, Adam Chappell, passed him coming from the opposite direction on Michigan just moments after the shots rang out. The two were on street-level enforcement detail, or SLED, a unit focused on crime “hot spots” around the city. David picked up the radio. “Chap, did you hear that?” he barked.

“It sounded like what I imagined Fallujah sounded like,” says Chappell. “It was a gun battle.” The two officers made quick U-turns and steered down Goodlet Avenue toward a parked van. They heard more gunfire and saw the outline of figures scrambling away into the shadows. As David drove on toward the van, Chappell, following behind, turned down an alley and then jumped out of his cruiser to chase the fleeing assailants. Then he heard more gunshots. BAM. Pause. BAM BAM BAM BAM. They had come from the street, right where he had last seen David pulling up on the parked van.

“It sounded like what I imagined Fallujah sounded like,” says Chappell. “It was a gun battle.”

Suddenly, quiet. Chappell called out. Dave, you okay? No answer. David! He jumped back into the car and sped around to the front of the house, fearing the worst.

“It sounded like what I imagined Fallujah sounded like,” says Chappell. “It was a gun battle.”

As he pulled up to the van, he saw David. He was standing there, gun drawn, with five men lying on the ground before him. Four were facedown on the pavement, surrendered. The fifth was fatally injured. A Bersa .380 semi-automatic handgun—a cheap, easily concealable pistol the man had fired at David from a few yards away—still lay by his side. For the incident, which occurred in 2008, the department would award David the Medal of Valor.

“We all work with these officers—they’re just kind of there, soup and sandwich,” says Chappell. “You think, ‘Man, if something ever happens, I hope he’s not my backup.’ But David was a go-to guy. I knew that if I was involved in something serious, David was going to come running.” Officer Jeremy Gates used to patrol with David in the North District, and he says he could barely get David to slow down long enough to grab a gas-station sandwich for dinner. He had a preternatural ability to spot suspicious activity. Without notice, he would stop the cruiser, jump out, and take off on foot toward a suspect. “Aside from the receding hairline,” says Gates, “he was the poster boy for what a police officer is supposed to look like. His uniform was always squared away, boots shined—the whole nine.”

David was also a good guy who knew how to have a good time. Single (and something of a ladies’ man), he took Christmas-day shifts for officers with families. And he was a “slim jim” master. Gates remembers parking his car downtown to testify in court, then returning to find it wasn’t where he’d left it. “I thought, ‘Holy shit, my car’s gone,’” says Gates. “I thought I was going to have to be that guy who reports his police car stolen.”

But if David’s horseplay endeared him to colleagues, he took a thoughtful approach to his duty as an officer. After a few years in the department, a former employer’s daughter, interested in law enforcement, asked for guidance, and the two exchanged emails. “Think about this,” he wrote. “I had a house on my beat. A lady was raising a boy and a girl. The boy was 10 and the girl was 8. They literally had to pay for lunch and dinner. The mom was so broke she couldn’t afford the food, so if the kids wanted to eat they had to pay her!!! The boy was out stealing and selling things. Do you know any of your friends who have had to do that? … That is how this job will change you. It changes your black and white outlook to a grayness.”

Danger—the danger that led to the police funerals he attended as a child, the danger that made his parents buy burial plots, the danger that placed him in a kill-or-be-killed shoot-out—wasn’t something David talked about. The job wasn’t about catching bad guys; it was about making people’s lives safer. But he wasn’t naive.

“We can’t help everyone, and if you try you will be beat down emotionally,” he wrote. “There will always be bad people.”

On January 22, 2011, at around 5 a.m., a 60-year-old ex-con named Thomas Hardy pulled into the Mallard Cove apartment complex, off of North Shadeland Avenue. According to witness statements, he walked into an apartment to smoke crack cocaine. At some point, he and a man in the apartment named Eric “Boo” Jenkins struck a deal: Hardy would trade a crack rock for Boo’s Bersa .380 semi-automatic handgun. Hardy wanted to settle a beef with another man he claimed had cheated him out of $100.

On January 23, at around 5:30 a.m., David left the IMPD’s North District headquarters, on East 30th Street, to start his patrol. It was his second morning on the day shift. He had requested the new assignment because he preferred the schedule to the overnight hours of the middle shift—done by 2 p.m., with the rest of the day to do what he wanted. He had called his mom after that first day. “I think I’m going to like this shift,” he said.

At close to 9 a.m., David was driving down East 34th Street when he followed a gold-colored Camry onto North Temple Avenue, into a modest working-class neighborhood. David flipped on the flashing lights, and the Camry came to a stop; no one knows why the car caught his attention. “The hardest thing I face is a traffic stop,” David once wrote to his young email friend. “Regardless of how rough an area is there are always good people who live there. Honest hard-working people. I make a lot of good arrests off of the simplest traffic stops you can imagine.” David pulled up behind the car and ran the plates, then got out of his cruiser and walked up to the driver’s-side window.

A few blocks away, officer Matthew Mielke was pulling out of the parking lot of North District headquarters when he heard gunshots. Then a voice came over the radio. Officer down in the 3400 block of North Temple. Mielke rushed to the scene. Moore’s police cruiser was parked at an angle to the curb. The lights were still flashing. In front of the car, on the snow-covered street, lay the rumpled figure of a uniformed police officer. Mielke called in the medics, then ran over and kneeled down beside the officer. It was David Moore. He was lying on his side, not moving. His pulse was fading. Another officer arrived, and the two of them gingerly rolled David over onto his back. That’s when they saw that he had been shot in the head and neck area. His gun was still in its holster.

When medics arrived, David was still alive. But just barely. They cut off the front of his bullet-resistant vest, loaded him into the ambulance, and, led by a police escort, rushed him downtown to Wishard Hospital. Another officer helped remove and secure David’s gun. One of the medics handed the officer a .38-caliber slug that had fallen out of David’s clothing.

Back on Temple Street, investigators swarmed over the scene to try to figure out what had happened. The plate number of the Camry was still up on the monitor of the laptop computer in David’s cruiser. It turned out the car had been reported stolen about a month earlier. A crime-scene specialist found seven spent .38-caliber shell casings and one .38-caliber slug on the ground near where David had fallen. Police interviewed neighbors on the block, and a blind man who lived nearby told them he had heard four gunshots, a pause, then three more. Another neighbor had looked out the window of her house to see an officer lying in the street and a gold-colored car speeding away.

About an hour later, the manager of a southside Dollar General store called the police to report that a man had just carried several bags of Cheetos to the counter, then pulled a handgun on the clerk and swiped $101 from the register. The clerk said he was wearing tan slacks, dress shoes, and a black leather jacket with a fur-lined hood. He had left a bag of Cheetos on the counter.

Although it’s not clear why, police soon turned their attention to a man named Thomas Hardy. They found an address, just a few blocks from the Dollar General robbery. There, Hardy’s niece told investigators that he had called her that morning from a number that turned out to be a downtown pay phone in Circle Centre mall. Detectives checked the mall’s surveillance tapes and saw a man who matched the description of the robber. They later found the Camry parked in the garage of the JW Marriott hotel a few blocks away. Surveillance videos showed that the same man who had robbed the dollar store and used the mall pay phone had left the car there at around 10:15 a.m. Later that afternoon, a crime-lab examiner found fingerprints on the Cheetos bag left behind at the dollar-store robbery. They were a match with Thomas Hardy.

As detectives tracked Hardy’s movements on the morning of the shooting, a federal law-enforcement agency contacted police to let them know they had received a tip from an informant named Penny Torrence. At close to 5:30 that evening, a team of IMPD officers surrounded Torrence’s near-westside home, looking for Hardy. They ordered Hardy to come out. When police took Hardy and Torrence into custody, she told them to go into the house and look inside a green bag. When they returned with a warrant, they found a Bersa .380 semi-automatic handgun.

Torrence told detectives that Hardy had showed up at her house at around 9:30 that morning. He had asked for money. She didn’t have any. So he told her he was going to go get some. When he returned, he had cash, and he said it had come from the dollar store. He told Torrence he needed to ditch the car because police were looking for it.

She asked Hardy what he had done. He said a cop had pulled him over that morning and walked up to his car. He said he had a gun he had picked up at Boo’s place. Hardy was on parole, and if the cop found the gun, he would go back to prison. So, he said, he put a round in the chamber and switched off the safety. Then, he told her, “One thing led to another.”

David had been shot six times—twice in the face. Two bullets hit him in the leg; another struck his ammunition pouch. It appeared that his bullet-resistant vest had stopped at least one shot from penetrating his torso—the round was still lodged in the vest when David was found.

David’s parents stood sentry at the hospital and held news conferences to address the public’s concerns over David’s condition. Worried IMPD officers hung around the hospital lobby at all hours of the day and night. Across the city, people who knew David, and many more who didn’t, prayed for his survival. Close to 300 showed up for a vigil at a church near where he was shot.

On Tuesday, January 25, a hospital MRI indicated that David would not regain consciousness. That evening, IMPD chief Paul Ciesielski convened a news conference to announce that David’s parents had decided to take him off life support. He would be the first officer in the newly organized department to be killed in the line of duty. IOPO staffers rushed to identify potential organ recipients. In David’s room, nurses moved him over on his bed, so Jo could lie next to him during his last hours.

Officer David Moore was pronounced dead at Wishard Hospital at 6:18 a.m. on Wednesday, January 26, 2011. Because he had been in such peak physical condition, and because the bullet-resistant vest had protected his chest and abdomen, doctors were able to recover his lungs, heart, liver, and both kidneys. Although his fatal head wounds had left his eyes intact, IOPO staffers feared that recovering any tissue from the neck up might interfere with the autopsy. At the last minute, the coroner’s office gave the okay to remove and transplant both corneas as well.

That afternoon, Lance Lewis received his phone call, and late that night he went into surgery. The procedure would last nearly nine hours. Before going to the hospital, Lance had followed the young policeman’s shooting, and he had a hunch that he was getting the officer’s lungs. It was one of many thoughts that ran through his mind as he lay on his side waiting for the anesthesia to take hold.

Some of the family members who waited out Lance’s surgery at the hospital shared his speculation about the donor, and they chatted about it to help pass the time. “I told my daughter, Angie, ‘I wish everybody would stop talking about the officer, because we don’t know whose lungs these are,’” says Cathy. “But she said, ‘I don’t care. I’m going to believe they’re the officer’s lungs.’ To her, it just made sense.”

“I told my daughter, Angie, ‘I wish everybody would stop talking about the officer, because we don’t know whose lungs these are,” says Cathy.

Cathy got phone calls throughout the early morning from a transplant coordinator. “They just put him on his side,” he told Cathy. Then, “They’re getting ready to take out the right lung—he’s doing great.” Then, “The right lung is out, and the new one is in. We’re getting ready to flip him over.” Calls every hour, until the last call, well after daybreak. “Everything went well,” the coordinator said. “He got a really good set of lungs.”

When Lance awoke, his belief that the donor must have been the policeman remained. IOPO keeps all organ donor and recipient information strictly confidential, but Lance knew that, someday, he needed to meet the family that lost a son in giving him new life.

Months after David’s death, Jo Moore composed seven handwritten letters. She didn’t know who would read them, only that they had received David’s organs. She wanted the people who carried around parts of him to know what kind of man he had been, how much he had meant to her.

IOPO delivered the letters, and Lance got one of them a few days later. “I am so glad you received David’s lungs,” she wrote. “I admire your strength and courage to be an organ recipient. We pray that you live your life and enjoy what the future brings.”

Lance began to handwrite a reply, until he realized that the tremors in his extremities, caused by medication he took to prevent his body from rejecting David’s lungs, made the words illegible. So he typed. “Words cannot express how blessed I am to have been entrusted with David’s lungs,” he wrote. “I will cherish, protect, and use them to their fullest. Your family’s gift of love has given me a new life for which I will always be grateful.” He told her he hoped they would meet one day.

As Jo and Spencer Moore began the process of coming to terms with their loss, authorities moved swiftly to impose justice on the man accused of pulling the trigger. On January 27, a day after David Moore was removed from life support, Marion County prosecutors charged Hardy with murder, robbery, and unlawful possession of a firearm by a serious violent felon. A few weeks later, they filed a request for the death sentence.

Hardy has a long rap sheet, mostly property crimes and drug offenses, accumulated over several decades. Hardy’s niece, who helped investigators locate him before his arrest, told The Indianapolis Star that the crime he now stands accused of “is not in my uncle’s character.” In a written statement, his attorneys, Ray Casanova and Monica Foster, wrote that “Thomas Hardy, like all Americans accused of crime, is presumed innocent,” and, they continued, “there are many aspects of what happened that are not at all what they seem at first blush.”

At press time, Hardy’s trial was scheduled for October 1, 2012, and it is far too early in the proceedings to predict an outcome. But it probably won’t be a cut-and-dried case. In ballistic tests, the pistol that Thomas Hardy allegedly used to shoot David Moore “slam-fired”—a malfunction that causes a gun to discharge a round without the trigger being pulled. Denise Robinson, a deputy prosecuting attorney, says the matter is “still under investigation.” Depending on how that investigation plays out, the malfunction could leave the defense room to argue that Hardy hadn’t intended to fire the gun as many times as it went off—or at all. But even Hardy’s lawyers, it seems, are saddened by David Moore’s fate. “There is one thing with which we will not disagree with the prosecutor,” they wrote. “Officer David Moore was a good police officer and an extraordinary human being whose life was taken from us far too soon.”

Sadly, none of this might have happened, if not for a simple administrative error. Hardy was arrested in 2010 on felony theft charges, while he was still on parole for an earlier theft conviction. Had Thomas Hardy’s parole officer performed a routine arrest check, as policy dictated, she likely would have requested that the parole board send him back to prison. Instead, on December 21, 2010—about a month before David Moore was shot—Thomas Hardy walked out of jail.

It’s a crisp, fall afternoon, and Lance and Cathy Lewis have come to visit Spencer and Jo Moore at their northside home. It is just around the block from where David used to live—his sister, Carol, moved into his house after he died, and his parents later bought a place nearby. Since their first meeting in May, the Lewises and Moores have continued to get together. It feels right to them, somehow. They share stories about their grandchildren. They tell jokes and make fun of one another. And they marvel at how much they have in common.

The Moores raised their family just a short distance from the southside home where the Lewises raised theirs. When Lance was David’s age, he was also a law-enforcement officer, with the Marion County Sheriff’s Department. When Jo was in the hospital delivering David, Cathy was in the very same hospital, delivering her son Aaron. There is a lot to talk about.

They gather for lunch in the Moores’ kitchen and talk about Lance’s recovery. “He’s doing so well, it’s like having a new husband,” Cathy says. “He looks different. His color is different. I smile every day, just looking at him.” Her joy, she admits, is tempered by a kind of survivor’s guilt that her family’s blessing arose from another family’s heartbreak.

Lance says that before the transplant, he always felt that people were giving him disapproving looks, like when they’d see Cathy loading heavy groceries into the car, while he stood by watching. “I couldn’t help but think, all those people standing around were wondering, ‘Why in the world is he making her unload that car while he’s standing there like a lazy bum?’” he says.

Cathy once told Spencer that it used to be easy to find Lance when she needed him, because he was always on the couch. “Now she has to go to the front door, the back door, down the street, the park—because he’s out mowing the lawn, riding his bike, up on the roof,” Spencer says. “Now, she can’t keep up.” He jokes that when Lance is driving behind a car that runs a stop sign, he has a strange urge to pull it over.

Jo brags about how Lance recently finished a 12-mile bike ride. Sometimes when she looks at Lance, she beams, and her eyes well up. She likes to call the heart-shaped scars around Lance’s shoulder blades, from the incisions where doctors opened his body cavity, his “angel wings.”

After lunch, Spencer and Jo take Lance and Cathy on a walk through the neighborhood to show them a stone memorial to David that neighbors have placed in a front yard. They point out the house of two women, raising a son, who liked David coming over to spend time with their boy because he was a good male role model. Over there is the home of an older woman who called David frequently to tell him about goings-on in the neighborhood; having him nearby made her feel safe. Along the way, flags and other tributes to David dot house after house, yard after yard. He had only lived in the neighborhood for a few years, and somehow he seems to have known everyone.

On the way home, Spencer falls back to walk beside Lance.

“I’m 12 years older than Jo,” he says. “I always figured David would be there to take care of his mother when I am gone. When you have a son, you imagine what he’s going to accomplish. I saw David being in a high leadership position in the department some day. Now that he’s gone, it leaves a hole.”

Lance doesn’t say anything for a moment. His eyes redden a little, and he takes a deep breath—something he had not been able to do for a very long time.

For information about the Officer David S. Moore Foundation, visit www.davidsmoorefoundation.org.
Donations can be mailed to:
Officer David S. Moore Foundation
PO Box 39284
Indianapolis, IN  46239

An update from Lance Lewis

November 27, 2013

The three years since my double lung transplant have been amazing. For me at least, the transplant did not allow me to return to my old life…I never had this life. This is something completely new.

Cycling in Indiana, Kentucky and Montana, stair climbs in Indianapolis (35 stories) and Chicago (103 stories), walking along the Las Vegas strip in 117 degree weather, and zip lining over the Gallatin River in Montana. None of these things would have even been considered, let alone possible, without my transplant.

Although the relationship we have with my donor family is our only experience and seems normal to us, we are keenly aware that it is anything but normal. Many recipients attempt to contact their donor family with no response. I have been blessed with a donor family who encourages contact, and who have opened their hearts and lives to us without limitation. As a result, a whole new world of friends and relationships has blossomed.

We have had the opportunity to encourage other transplant patients through our local transplant support group and to speak to individuals and groups about the importance of organ donation. As a volunteer for the Indiana Organ Procurement Organization, I have spoken to such diverse groups as hospital executive committees, and third shift emergency room nurses. At one meeting, I was able to speak to some of the nurses who had cared for my donor in the ICU. They had no idea who I was until the end of my talk, and it was a very powerful moment.

No one knows where this journey will ultimately lead, but I am thrilled to be on the trip and have no regrets about the decision to pursue a transplant.

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Lance thin and ill prior to transplant surgerylance lewis cropped

Lance on his way to get new lungsHeaded to Transplant Jan 26 2011

Lance and Joanna Moore after 5 K Walklance and Joanne Moore after 5 k walk

Lance and Grand Children Reid and Morgan Lewislance and grandchildren Reid and Morgan Lewis

He climbed the stairs of the Willis (formerly Sears) Tower, Chicago’s tallest building and one of the tallest buildings in America.Willis Tower Climb 2012

And…he took on a Montana Zip LineZip Line in Montana 2013

Here’s a disturbing number  60% .  60% of Americans are NOT organ donors.  That means that only four out of every ten people is a donor and that’s why thousands of Americans die every year.  And…more and more will die because the gap between available organs and those who need them grows daily. This isn’t happening because Americans don’t care.  Polls show we overwhelmingly support donation.  It is happening because we don’t see the urgency and don’t get around to signing up and the result is 20,000 perfectly transplantable organs are buried every year.  Don’t take your organs to the grave when so many gravely ill people need them.

There are millions of other Lance Lewis’ in America.  They may need other organs but they are all suffering and are all facing death.  20 people will died today because of the organ shortage.  20 more will die the next day…and the next day too.  Save a life or maybe save many lives by becoming an organ/tissue donor right now.  Up to 60 people can benefit from each donor so don’t hesitate a moment longer.  Go to http://www.donate.life.net right now and sign up.  It takes just seconds.  Then, be sure to tell your family your wishes so there is no confusion when the time comes.

Give the gift of life. There is no nobler action you can take.

Bob AronsonBob Aronson is a 2007 heart transplant recipient who founded both Bob’s Newheart and Facebook’s Organ Transplant Initiative (OTI).  The Newheart blog has 200 others posts that cover a wide range of subjects that may be of help to you or someone you love.  We also invite you to visit and join OTI a group of well over 3,000 members who share experiences, help each other and provide invaluable information to make daily living a little bit easier.


heart transplant cartoon

“Some men see things as they are and say why.  

I dream things that never were and say, why not”

George Bernard Shaw

This is post number 200 in the Bob’s Newheart Series of blogs on organ donation/transplantation and related issues

On February 17, 2014 I will turn 75.  It is an incredible feat for someone who abused his body as badly as I did.  By my count I have been dead three times. Once from sudden cardiac arrest, once during surgery in a hospital and I suppose once when they took my heart out to give me a new one (maybe that one doesn’t count).  I have to believe that I am only alive today because I was given a mission to do everything in my power to help others who face critical and/or life threatening illnesses.  The social media offer me that opportunity and I have gladly accepted it.

Before I launch into my story I think it is important to point out two factors that may have contributed to my condition but cannot be directly or medically linked to it. First, for 37 years from 1954 until 1991 I was a heavy smoker.  Some days I went through as many as four packs of cigarettes.  There are 20 in a package.  I quit smoking in 1991 because of the onset of Chronic Obstructive Pulmonary Disease (COPD)  and after watching my father die of the same disease in January of that year.  It took many tries, perhaps dozens but finally with the help of nicotine gum I kicked the habit.

I am also a recovering alcoholic.  I was a very heavy drinker for many years.  I won’t go into detail here but finally on July 17 of 1982 I checked myself into treatment at an in-patient center in St. Paul, Minnesota.  I have not had a drink since. While there is no direct medical evidence to tie my tobacco and alcohol use to my heart condition I have no doubt that they were great contributors.  You cannot consume all the chemicals contained in cigarette smoke and the hundreds of gallons of alcohol I drank and not cause damage.  I am quite frankly amazed that I lived long enough to get a heart transplant.

It took 12 years from the time I was diagnosed with Cardiomyopathy (heart failure) until I was listed for and got a heart transplant. When I started the Facebook group Organ Transplant Initiative in 2007 I wrote this mission statement:

The mission of Organ Transplant Initiative is to work to ensure than anyone who needs an organ/tissue transplant can get one. 

Some say that’s an impossible dream.  I refuse to accept that.

Bob Aronson

My Story

St. Paul, Minnesota — it is 5 PM on a Friday in mid-July 1995.  I was having a very difficult time breathing all day but chalked it up to my life long battle with asthma.  I removed my albuterol rescue inhaler from my shirt pocket and took two puffs inhaling deeply and holding my breath for a few seconds to give the drug time to work.  It didn’t. I tried again, it still didn’t work so I thought that either the medicine was old or the inhaler just wasn’t working properly.  My breathing was not only labored it was sometimes audible.

IGIF shot bob by TV was the founder; owner and CEO of the Aronson Partnership, Inc. a highly specialized communication consulting firm that helped executives communicate their messages in crises, media interviews, testimony and presentations.  It was going to be a long day because my last coaching session of the day would begin at 6 PM and end around 9. My staff left at 5 so I would be there alone with my client. Being a consultant doesn’t require a lot of physical activity so I thought I could make it through the evening and then use my nebulizer when I got home.  A nebulizer provides for a longer more effective dose of albuterol, the asthma fighting drug.

At 6 o’clock my client arrived.  She was a well-known professional spokesperson jojo cartoon flyerfor a syndicated home improvement TV show and had hired me to help refine her on camera skills.  My studio was equipped like a TV studio with lights, cameras, microphones TV monitors — everything necessary to simulate the real thing. As we worked I stayed seated, unusual for me because I am usually an energetic person who moves around the room to keep my client engaged.  I knew, though, that if I got up the session would be over because my breathing was becoming more labored.  I struggled through three hours and finally my client left pleased with the session. parking ramp 3

Normally I would straighten up the studio before I left.  Not this night.  I turned out the lights, grabbed my briefcase, locked the door and took the elevator down six floors to the parking ramp. I had a breakfast meeting with a client that day and arrived at the office late.  The ramp was almost full so I had to park at the far end which was at least a block from the door of the building.

When I exited the elevator and entered the ramp I was in a very bad way.  I was struggling for every breath and my legs felt like rubber. Repeatedly I tried to use the inhaler but to no avail.  It gave me no relief…very unusual.  Stumbling my way to the car through the deserted ramp I was stopping about every ten feet to lean on a post, another car, anything that would support my weight for just a few seconds.  Had anyone else been in that ramp that would have sworn I was drunk. I was so starved for oxygen that my vision was getting blurred.  I could see the outline of my car perhaps 50 yards away but it might as well have been on the moon.  I was beginning to believe I could not make it there and panic began to set in.  Panic made my breathing even more labored. Half way through the ramp my legs buckled under me, I dropped the man on all fours 2briefcase and fell to my hands and knees. I remember thinking that I had not had an asthma attack this severe since I was a child.  I looked around — there was no one in the ramp and very few cars.

On all fours gasping for air I somehow managed to collect myself, pick up my bag and stand on wobbly legs.  Leaning on cars helped but there were few of them in the ramp, I kind of lurched from car to post to car. I don’t know how I did it, but I made it to the end of the ramp and my car — falling twice more on the way there.  The knees on my suit pants were a mess, one was torn and my hands were dirty, gritty and bloody from breaking my fall palms down on the concrete floor, somehow I had cut myself and I didn’t care..  My glasses were streaked with perspiration and more opaque than transparent. And…I was cold, bone chilling cold. Perspiration had soaked my clothing and chilled me even though it was a summer night.

I opened the door, sat, started the engine and despite being cold turned on the air condition thinking the cold air in my face might help.  Soaked with sweat, grimy and a  little bloody from three falls in the ramp I was still struggling to breathe so I loosened my necktie and just sat there trying to calm my nerves and catch my breath.  Because I was no longer exerting myself my breathing slowed a tiny bit but enough for me to believe I could make it.  The cold air from the AC unit felt good on my face and I sucked in as much as I could but it wasn’t nearly enough.  My heart was beating so fast it felt like it was trying to pound its way through my ribs to find freedom outside of my chest.

That’s when I remembered I had just purchased my first cellphone (they were pretty clunky by today’s standards and did nothing but make calls,)  I took it fromcell phone from last century my inside coat pocked but instead of dialing 911 I called home. When my wife answered I breathlessly told her I was having a serious asthma attack that I would pick her up and she could drive me to an ER.  In retrospect a dumb plan, but I really thought it was asthma.  Not once did I even consider that it could be something else so I knew I could make it.

That’s when I made my second stupid decision.  In my oxygen starved brain I determined that going to a nearby major medical center would be a wrong move because their ER was always very busy and the wait would be a long one.   Emergency roomInstead, I asked my wife to drive me to a small rural hospital in Hastings, She objected saying I’d be better off at United in St. Paul but I countered with the fact that the Hastings ER would not be jammed like a bigger hospital. I was right. There was not a single patient there when we arrived.  She was right, too, Hastings was the wrong place for me.

By the time we got to the Hastings ER I was turning blue and almost unable to breathe yet somehow summoned up the strength to walk in and make it to the admitting desk where I struggled to tell the nurse on duty, “I’m having a very bad asthma attack, my inhaler is not working.” I think I fell into the chair next to her. The nurse quickly took my vitals, listened to my heart and said, “I don’t think it is asthma,” and called for a crash cart.  There was a scramble as I was placed on a gurney, rushed to a room, wired, had an IV placed in my arm and was given a tablet of nitroglycerin to hold under my tongue. ECG leads were taped to my chest, someone shot something into the IV, and a Doctor appeared, giving orders.  I was nearly unconscious and confused not knowing what was happening I just kept thinking, “What’s wrong with these people, all they have to do is give me a shot of adrenalin and I’ll be fine.”  The nitro made me sick to my stomach but my breathing was easing. United hospital st. paul

Then the Doctor spoke up, “Mr. Aronson, it’s not asthma, it is your heart and we can’t handle you here.   We’re sending you by ambulance to United Hospital in St. Paul (United was a major heart center and the hospital I chose not to go to in the first place). By now I was stabilized and almost breathing normally but the ambulance wasted no time and made the 20 or so miles from Hastings to St. Paul, Minnesota in about fifteen minutes with the aid of the siren and flashing lights.  I told the attendants I felt fine and they should just take me home but they were having none of it and brought me straight to the hospital where we were met by a medical team that rushed me to cardiac intensive care.    That’s when the excitement, the drugs and exhaustion caught up with me and I lost consciousness.

When I awakened I was surrounded by people who wereecho 2 setting up some equipment.  “We are going to do an echogram, Mr. Aronson, and that will tell us how well your heart is functioning so please lie on your left side.”  I did and the operator of the machine got on my right side, reached over with what looked like one of those mortar things that pharmacists use and placed it on my chest.  It had some kind of cold wet clear goo on it and as he moved it over my chest I could hear my heart on the monitor going “squish boom boom, squish boom boom.”  echo screen 2The monitor was in front of me so I could see what the operator saw. The difference was that he knew what he was seeing, it meant nothing to me.  Again, though, exhaustion set in.  Each of my eyelids felt as though they weighed twenty pounds.  I could not stay awake and drifted off only to awaken to the sound of the echo machine being wheeled out of the room about twenty minutes later.  As the operators were leaving I thought I caught a glimpse of my wife and some family members but again fell into a very deep sleep.

It was morning when I began my return to the conscious world and for a while I was confused, I didn’t know where I was until I heard the voice of my daughter Hank.  “Hi daddy, we are all here with you.”  For just a minute I didn’t know where “here” was or why they were all there.  Then I heard the beeping of a monitor, saw the IV drip, felt the oxygen tubes in my nose and saw the nurse reading my blood pressure.  I got the idea that the situation was not a good one.  Families don’t gather first thing in the morning in a hospital room unless you are in dire straits.

I looked around and saw my wife, two daughters and their husbands, my son and his wife and several medical people.  My usually jovial family looked very somber. “All of this, I thought, for asthma?” forgetting about the echogram and what the doctor in Hastings had said just a few hours earlier.  Just then a very distinguished gentleman walked in.  Dressed like a model from Gentleman’s Quarterly, he was relatively young but had white hair and spoke softly but firmly. “Mr. Aronson,” he said. “My name is Dr. Thomas Johnson and I’m a cardiologist.  You have a very serious heart problem.  It’s called cardiomyopathy which means your heart muscle is failing and you may need a heart transplant.”

“Boy,” I thought, “that’s laying it on the line.”  I felt as though I had just had a nuclear weapon detonated in my gut.  But strong men don’t show weakness in front of their family.  I noticed that my youngest daughter was crying and everyone else was silent.  “Ok, I said, if that’s what it takes let’s do it.”  I had a passing acquaintance with organ transplants but really had no idea how complex the process was or how difficult it was to get a heart, plus I had to put on a brave face for my family.

While my mind was racing Dr. Johnson began to explain my condition.  His style was firm but calming and compassionate.  He explained that while they would do further testing he was certain that I suffered from cardiomyopathy which is a very fancy term for heart failure.  He pointed out that I would likely be able to get out of the hospital in a few days and go back to work but that my energy level would not be the same. He also said that while I would likely not need a heart transplant right away it was inevitable that I would need one at some point.  He said he had scheduled a stress test for later that afternoon.  I thought the whole situation was a stress test and that this must be a bad dream. Someone brought in a tray of something that resembled food but I wasn’t hungry just very, very tired and I drifted off again after telling my family to go home and come back later. It was obvious then that I was in no immediate danger at least not anymore. cardiac stress test

“Mr. Aronson,” the voice said, “Mr. Aronson, it’s time for your stress test.”  Again feeling dazed and almost hung over I awakened and was helped up so I could sit on the side of the bed.  I was given a fresh gown and robe to put on and helped into a wheelchair.  A friendly and talkative male nurse pushed me through a series of hallways to the stress test room.  It was tiny.  There was room only for a treadmill a table with a lot of electronic gear on it and a chair.  Dr. Johnson was already there and I was wired again with several of those sticky leads that rip the hair off your body when they remove them. I had no idea what a stress test was other than getting on a treadmill.  I found out quickly enough that it involved walking on the treadmill as the operator slowly increased the speed and the grade.  Dr. Johnson was there carefully watching me and the monitor.  The speed and grade changed every couple of minutes and by the time I reached 8 minutes I could go no longer, my legs were rubber, my lungs were about to explode and my heart felt like it was going to hammer its way out of my body and then out of the room. I did not know that one could get so thoroughly exhausted in 8 minutes.

The stress test was just one of a series of tests, labs and other evaluations that confirmed the initial diagnosis of dilated cardiomyopathy, cause unknown.  My heart was growing larger because it was not pumping enough blood out.  Dr. Johnson explained that my Ejection Fraction (EF) was between 20 and 25.  Here’s what that means.  Normally the heart pumps out about 60% of the blood it contains.  That’s the EF. My heart was only pumping out 25% so in order to contain the excess blood the heart had to grow but there’s a limit to the growth and to how long your other organs can survive when they are not getting enough blood. In a few days I was released from the hospital with a boatload of medication and strict diet orders. Sodium intake was limited to 1800 milligrams a day, liquid consumption was capped, I was told to lose weight (at 6’4” I weighed about 240 lbs. and have a large frame so I didn’t appear to be overweight) and exercise, lots of exercise.

I took it all very seriously and followed the diet and all the other restrictions and suggestions very carefully.  I dropped about 40 lbs. and with daily exercise got in the best condition of my life.  Each morning I would get up and do 75 stomach crunches, 100 pushups, walk the treadmill for a half hour, do about 40 curls with 20 lb. weights in each hand and then go to work. Actually I felt better than I had felt in a long time but I tired easily.  By 10 AM I would get sleepy but I’m a Type A personality and push myself so I kept up the same pace I had always been on. I was a consultant and traveled a great deal. At least once or twice a week I was running through airports to catch a plane or make a connection somewhere and for a while I did pretty well but I could feel myself slowing down.  I saw Dr. Johnson regularly and he kept adjusting my meds and re-testing me but it was not yet time to be listed for a heart transplant, I was not sick enough to qualify.

Then in 1996 we got the news that my wife, Avis, had lung cancer.  They found it in her legs which meant it had metastasized or had already spread from her lungs to other parts of her body.  The news was a devastating blow for the entire family and I simply forgot about my condition as I took her to the series of chemo and then radiation appointments.  The side effects were sheer hell and even expensive drugs like Zofran for nausea didn’t always work.  The treatments took place over several months and took a heavy toll on her.  Cancer is ugly but so are the treatments. 

Slowly, though, the combination of therapies started to have a positive effect.  Her hair grew back, the pain was gone and there was no sign of the cancer.  We all thought that maybe she had beaten it.

We were feeling good about Ave’s progress and I was still following all the instructions that had been given to me but my health was deteriorating, I could feel it.   My ejection fraction was about 20 and I was tired all the time.

Ave did quite well for about a year and then in October of 1998 she started complaining of pain again and tests made real our worst fears.  The cancer was back but far worse than it had been originally and there was no longer any treatment that would offer hope.  The disease had invaded not only her lungs but also her colon, legs and brain.  She entered United Hospital in St. Paul in Mid-October never to return home.  She passed away with her family around her on November 28 of 1998.

After the funeral I took time off to try to figure out my life.  35 years of marriage does not prepare you for living alone.  It was awful.  Staying home only made things worse.  My way of dealing with the loss was work.  I spent more time than ever at the office and on the road.  I traveled even more than I had in the past.

Finally, exhausted, I decided I quirinale interiorneeded a rest away from phones, clients, employees and everyone else.  In May of 1999 I  booked a flight to Rome, Italy to see my friends Ron and Carla Marinelli.  They arranged for me to stay at the lovely old Hotel Quiranale on the via Nacionale.  The rest, the food, the surroundings did wonders for my mental health. Each morning I would arise, go to the breakfast restaurant and quirnale breakfasthave a cappuccino, some biscotti, melon and a little bit of prosciutto (Italian ham and definitely not on my heart diet).  After a couple of days the waiter didn’t ‘even ask me what I wanted, he saw me come in said, “Buon Giorno” and brought what I just described.

The visit with Ron and Carla was magnificent.  Ron was the man who hired me for my first job as a radio announcer in 1960 in Hibbing, Minnesota.  He later married Carla, an Italian national, and moved to Rome where he taught English as a second language to Italian military officers. One day Ron and Carla decided we should take a trip.  It was a lovely surprise, too.  They sassoferrato, Italywould take me to Sassoferrato to the North East of Rome in the mountains of the province of Ancona about half way to the Adriatic Sea.

The trip was significant because Sassoferrato is the town in which my grandmother and grandfather on my mother’s side were born and from which the emigrated in the early 20th century.  I won’t go into detail but to stand near the sulfur mine where my grandfather worked and to walk the roads where my grandmother delivered the mail stirred my emotions in a special way.  But all of this is another story for another time.

I left Italy feeling good and arrived in the U.S.  ready for work and threw myself into it like never before almost forgetting that I had a very serious heart disease. It was about then that I met Robin Diffie.  She lived in Jacksonville, Florida a city I visited often because the Mayo Clinic there was one of my clients.  We hit it off immediately and in August of 2000 were married in my home in Eagan, Minnesota, a St. Paul suburb.

It had now been five years since my diagnosis and while my ejection fraction had not changed I was noticeably tired more often. byerlysAbout a year later I was driving to visit a client that had an office in a shopping center across town and got hungry so I stopped at a supermarket and got a deli sandwich that came close to my dietary requirements.  I sat in the car and ate it then, with seat belt off drove around the corner to my client’s office.

As I entered the parking lot I slowed to about 5 or 6 miles an hour to pull into a business center parking lotparking place when suddenly everything turned the brightest white I’ve ever seen…cars in the lot next to me danced in the light and I felt really good but sleepy.  I know not how much later it was that I awakened but I was slumped over the steering wheel and the car was up against a tree.  I awoke with a terrible headache and my balance and speech were not quite right.  Somehow I made my way into the client’s office and told them I had fainted.  The client was a medical company and they told me to stay seated and called Robin who came to get me and took me to the hospital.

At the emergency room a cardiologist examined me and said, “You need to have a defibrillator implanted, it appears as though you may have suffered sudden cardiac arrest and running into that tree may have jarred you enough to save you, it was a good thing you weren’t wearing your seat belt.

I said, “Ok doc let me check my calendar and I’ll see when we can schedule the defibrillator.”

He chuckled, “No,” he said, “We need to do that right now, you could have another attack any time and the defibrillator could save your life.” defib icdNeedless to say, we were in surgery within the hour and the Medtronic Implantable Cardioverter Defibrillator (ICD) was implanted.  It was a little smaller than a hockey puck and was just to the right of my left shoulder.  You could hardly tell there was anything there.  The bad news was that my heart condition was changing and not for the better.  This new development was not good.  And..if in fact I did have cardiac arrest when I hit that tree I was extremely fortunate because only about 5 percent of cardiac arrest victims survive.  It is unpredictable and there is really no way to diagnose it.  About 350,000 people die every year due to sudden cardiac arrest.  Those who survive usually do so because of a defibrillator.  Either the implanted variety or the kind you find hanging on walls in public buildings.

By 2003, eight years after my diagnosis I was on a drug called Amiodarone which is used to correct abnormal heart rhythms. The medication is prescribed only for people with serious heart problems. It is a powerful and effective drug but also one with many side effects some of which are potentially fatal.  One of the side effects and the one that most affected me was weight gain because Amiodarone can have a very negative affect on the Thyroid gland.  For me the result was ballooning up to nearly 250 pounds despite my making every conceivable effort to stop it.   For the first time in my life I was buying pants with a 40 inch waste and had developed a belly that hung over my belt.  I took to wearing suspenders to keep my pants up.   I didn’t like the way I looked and I couldn’t do a thing about it.

It was summer and I had just showered and shaved and was getting dressed for work when I felt as though a mule or a horse had kicked me in the chest.  The impact sent me to my knees in the bathroom and at first I didn’t know what happened. Slowly it occurred to me that my defibrillator had just gone off.  That means the rhythm of my heart was also off so I called 911 and explained what happened.  The voice on the other end said, “So what would you like us to do?”

I responded, “I don’t know, I thought you could tell me what to do.”

She said, “Often patients do nothing and sometimes we take them to the hospital.  Would you like an ambulance?”

“I guess,” I said.  Not really sure what to do but still unsteady on my feet as a result of the shock. The ambulance was there in a flash and I walked out the front door of our town home.

Tambulanche attendants made me lie down on the gurney and carted me into the back of the big Red and White vehicle where they wired me with the electrocardiogram and started an I V.  I heard the paramedic on the radio saying something about atrial fibrillation and they turned on the lights and siren.  Déjà vu all over again as we raced for United Hospital in St. Paul.

Robin had been out when I was shocked by the ICD but I called her immediately and she met us at United. More tests and finally the same Doc that placed the ICD in my chest came in to say that I needed a new and different one.  Mine had two leads and they wanted to put one in that had three leads but that meant the procedure was a little trickier because one lead had to go behind my heart.  He said they would do the procedure the next day but that he was going to Greece on a vacation and one of his highly skilled colleagues would do it.

They wheeled me away in the morning for a routine procedure that almost killed me.  In order to place the ICD and connect it they have to stop your heart for a while and then start it again.  Well, they had trouble with the third lead; they couldn’t get it in no matter what they tried so they gave up on it and decided to try again on another day.  Now they had to restart my heart — again and again they tried the paddles but it wasn’t until 6th or 7th attempt that the damaged organ began to beat.  Now there was a new concern because a long time had elapsed and there was fear of brain damage.

Robin tells me that when I awakened I was babbling.  What I was saying made no sense and I stayed that way for a while.  The hospital sent a neurologist in to see if I had suffered brain damage in the aborted attempt to place the third lead of the ICD.  By the time he got there I was doing a little better so the questioning began.  Who are you?  Where were you born? What month is it?  Robin said she thought I was doing pretty well.  Then the Doctor asked who the President of the United States was and I said, “George W. Bush the SOB.”  I don’t remember saying that but Robin said she knew then I was OK. That episode, though, was not the end of the saga.

The third lead still needed to be connected and I couldn’t leave the hospital until it was.  They said I could rest for a day or two and the would try again.  They did in the following week and this time with a different doctor but the same result.  They could not attach the third lead and again had trouble reviving me. I told the medical team that there would be no more attempts until my Dr. returned from his vacation and no one argued the point.  Finally when he returned he was amazed to find me still in the hospital.  It had been almost three weeks.  The next day we went back to surgery and this time at the hands of the master it worked flawlessly and I was released.

All of this had taken a toll. I was still working as a consultant but had to change my style.  When I trained or coached people for various communication situations or when I made a presentation on communication I was animated, energetic, walked around a lot, invaded people’s space and did a good job of getting and keeping people’s attention.  I could no longer do that.  Moving about left me exhausted. For a while I tried to walk around, sit a little and then walk around again but I finally had to give in and do my presentations sitting and I always explained to my audience why I was sitting.

mayo rochesterFor about 25 years the Mayo Clinic in Rochester, Minnesota had been my client, at least once a week I traveled from the twin cities to Rochester to work with Mayo physicians or executives and when I did I’d stay at a Hotel about a block from the studio they had set up for me.  I found that I could no longer walk the block without stopping several times to rest and I knew the end of my career was near.  That’s when Robin and I decided to move back to her hometown of Jacksonville because there was a Mayo Clinic there also and they had an excellent record of getting organs. Reluctantly I told my long-time client Mayo that I had to retire, that I could no longer take the physical strain of doing the work and I recommended another consultant.

Then came the task of selling our Eagan, Minnesota town home.  It was 2006 just the beginning of the real estate market bubble burst.  We purchased a home in Jacksonville thinking our very nice town home would sell quickly. It didn’t.  It took ten months to sell it after we had dropped the price several times.  Needless to say we took a bath on that sale.

The next step was to go through the transplant evaluation process at mayo jacksonvilleMayo in Jacksonville..  There was a battery of tests over a period of several days but the outcome was never in doubt. By now my ejection fraction was around 10 I could not walk from our family room to the bathroom which is about 25 feet without stopping to rest.  It was clear to me and to my docs that I was in end stage cardiomyopathy.  I was dying and there was nothing that could be done short of a heart transplant. “Ain’t gonna happen,” I told myself. “I am 68 years old and not hospitalized, there’s no way I get a heart.  Certainly if there is one available it will go to a much younger and sicker person.”  I had pretty much given up hope.  The Mayo clinic hadn’t and neither had Robin. Dr. Hosenpud, my transplant cardiologist at Mayo took my case before the transplant committee and I was approved for listing.  I gave it no further thought.  Although I was convinced that I would not get a heart I said nothing to Robin or my family.  I’ve always prided myself on being very logical and the logic said I would not get a heart.  Well, Mr. Spock, the logic was wrong.

It was thirteen days after being listed when the phone rang.  Here’s the play by play. Tuesday August 21, 2007 noon.  My home phone rings, “Hello.” “May I speak with Robert Aronson please?”

“Speaking.”

“This is Dr. Hosenpud from the Mayo Clinic in Jacksonville.  We may have a heart for you.”

Silence, confusion, “Did you say you may have a heart for me?”

“Yes,” pack a bag with some essentials and come to the clinic in the next couple of hours, I’ll see you then.” Click.

I hollered for Robin who was in the next room.  “I struggled to hold back tears when I said, “Dr. Hosenpud called, and they may have a heart for me.” I have always taken pride in being able to be cool under fire.  I don’t panic, I logically work things out.  Not today.  I think I packed a tennis shoe a sandal a toothbrush a comb and some mouthwash….nothing that made any sense.

I thought I was supposed to rush to the hospital even though Dr. Hosenpud did not say I should.  So we raced to the car and made record time. I had visions of pandemonium when I got there.  I thought I would say, “I’m here for a heart transplant” and all hell would break loose.  I thought there would be people running around, bringing out a gurney for me…tearing my shirt off and rushing me into surgery…Hah! None of that happened.

Here’s reality. mayo receptionMe at reception desk in hospital, “Hi I’m Bob Aronson and Dr. Hosenpud just called to tell me there might be a heart for me and I’m here for a transplant……”  I fired words out like a machine gun my eyes darting here and there and everywhere, my voice shaking.
Receptionist.  “Your name again?” I told her. Click, click, click (computer keys)

“Ok here you are Mr. Aronson.  Have a seat and someone will be out to get you in a little while.”

We sat.  There was no pandemonium.  There was no movement of any kind.  No one seemed to care that the all-important Bob Aronson was here for a heart transplant We waited for maybe a half hour when finally I was called to go back to a room to answer some questions, change into a hospital gown and begin the preparation process.  I was still amazed that no one was excited about what was happening, they were all so calm and just went about doing their jobs.  I wanted pandemonium, I deserved pandemonium, the situation called for pandemonium…but it never happened.  I guess I’ve seen too many movies.

Robin accompanied me to what I called the “Staging” area, that’s where everyone buzzes around you each with a special job, all of them pleasant and very formal.  Mayo has it so ingrained in their system to refer to people by their title (Mr.) I quit trying to get them to call me Bob for fear they might choke.

With the IV line in and working we talked for a while with the people in the room and finally someone said, “It’s time.”  A syringe appeared out of thin air and the needle was inserted into my IV, “Just a little something to relax you,” the voice said and I was in la la land in a split second.

I was tied tightly and they were coming to interrogate me again.  They thought they were being quiet but I could hear them coming, “No, no please not anymore, please don’t cut me up for parts anymore,” I begged as they tugged at my arm.

“Mr. Aronson, are you awake, we are doctors and we are here to remove your dressing,” was what I heard when I awakened from my dream where I was being held captive while my organs were removed. In my haze I vaguely remember some doctors coming to intensive care and ripping off the dressing that covered my chest.  It sounded to me like they had torn a 50 foot sheet of canvas in half.  I felt nothing but I’ll never forget that sound then.

“Are you in any pain Mr. Aronson if so give me a number between 0 and 10…ten being the worst.”  I must have picked the right number because I was out again. robin

While all this was happening Robin and her sister April were sitting in the surgical waiting room.  april diffie guittar croppedIt was August 21st which is also April’s birthday and instead of spending it celebrating she chose to sit with Robin praying for my recovery.  Robin and April are people who gain great satisfaction from giving and in helping others.  These sisters, like their parents are generous and considerate to a fault. T

The next time I awoke I was more alert and Robin was holding my hand and saying, “It’s OK, you are fine and you have a new heart.

I felt a great sense of relief, like a huge weight had been lifted from my shoulders and I was thirsty, so incredibly thirsty.  I asked for water and a nurse brought me ice chips. I sucked on those for a while and then fell asleep again.  I don’t know what time it was when I once again blinked myself into being awake but Robin was gone and it was just me, a bunch of beeping, flashing machines and a nurse.

“Water,” I feebly said.

“Not yet,” she said with what sounded like attitude. I was so dry my lips were stuck together, my tongue felt a foot thick, my throat was parched and I was almost without a voice because of the tube that had been down my throat.

“Please,” I’m so thirsty.

glass of ice chipsI’m sorry sir you can only have ice chips once an hour.”

“It’s time for once” I said may I please have the ice chips now?”

“In ten minutes,” she said.  At that moment that nurse became the “Ice Nazi.”  I remember watching the clock waiting for the next hour so I could get more ice chips but despite my impassioned pleas, appeals to fairness and kindness and outright sycophantic flattery she never budged a second.  I got my ice chips exactly on the hour not a split second sooner or later and….I lived.

Once released from the hospital I entered cardiac rehab where I met a strange mixture of people.  I quickly found that while all of us had transplants in common some were more committed than others.  One man whom I shall never understand just refused to comply.  He wouldn’t follow the diet or the exercise regimen.  He was very nice but just wouldn’t comply despite being alternately cajoled and chewed out by both physicians and nurses.  I don’t know what happened to him but his survival chances weren’t good. Conversely there were some there who so desperately wanted to live they would have doubled their effort if asked.  I was one of the very oldest people in the rehab program at the time and decided that the older you get the more you realize the value of life and the harder you are willing to work to stay alive.

Lee AaseI hadn’t been out of rehab for but a few weeks when a friend and former Mayo Client Lee Aase called me.  Lee is the social media guru for the Mayo Clinic (the whole system).  He is a 6’5” blond Scandinavian with a winning smile and attitude.  Lee could gain the confidence of almost anyone in a matter of seconds based on personality alone. And…he is one of the brightest communications professionals I know.

Because of my age my recovery from the heart transplant was slow. My body just didn’t want to regain its strength but I could still think and I could still type and the internet kept me connected to the goings-on in the world.  When Lee called me at the end of October 2007 to suggest I get involved in the social media on behalf of organ donation I had no idea what he was talking about.  When he mentioned Facebook and WordPress I had not heard of either of them.  I was somewhat familiar with blogs but had never written one and had read only a few. What rang my bell was when Lee said I could use these forums to promote organ donation.  I knew I wanted to try to pay back the gift of life that was given to me by a stranger but I had no idea how I would do it.  Lee just opened that door.  He took a great deal of time on several occasions on the phone to “Train” me in the use of social media.  He helped me set up the Facebook group and my WordPress blog and it was Lee Aase who came up with the name, “Bob’s Newheart.”  And so it was on November 3rd 2007 that Organ Transplant Initiative and Bob’s Newheart were born.

It was also on or near that date that I began to suffer extreme pain for reasons unknown.  Some of it may have been the result of the position the surgeons placed my left arm so they would have better access to my heart.  Whatever the cause the pain was extreme and it was spreading and debilitating. Both shoulders were affected as was my neck and lower back.  Sometimes the pain was so great I sat in my recliner and cried.  Even powerful painkillers only dulled it..it never went away.  Specialists gave me injections in both shoulders which helped.  Later it was determined I had torn rotator cuffs in both shoulders but not how I got them.  The pain seemed endless and in fact lasted for over a year.  Oxycodone helped but did not kill the pain completely. In the meantime I would get up early in the morning and take a pain pill so I could tend to the Facebook group and the blog.  It was only early in the morning that I could produce anything that made sense.

As the day went on the pain grew and I was unable to think never mind write anything worthwhile.  I could not drive because of the pain and often because of the pain pills I would forget to set up my meds for the week. The narcotics, I believe, also caused me to forget to eat so not only was I not following the suggested diet I wasn’t following any diet Robin had her hands full.  She had two businesses that she started and was running out of our house and she had me to take care of.  She drove me to medical appointments, took care of my needs at home, reminded me to set up meds and renew prescriptions and made sure I ate, even though I didn’t want to.

The biggest challenge for both of us was that I was becoming increasingly more depressed.  Because of the pain I slept in my recliner in the family room at the depreessionback of the house.  The comfortable leather chair was in a corner of the room that was naturally dark – a great place to be depressed.  When I awakened each morning I would leave the lights off …sometimes I would shower, often not.  I didn’t care about anything.  I would sit for hours with the TV on but never look at it.  It created flickering shadows in the room but no light.  Usually I had the volume turned down so it was just white noise.  I was crabby, uncommunicative, looked like a homeless, deranged old man and didn’t care and yet I continued with Facebook and WordPress for at least an hour each morning.  It was the only thing I felt I had an obligation to do each day.

One day, though, something clicked, I think it was guilt. Somewhere in the dark reaches of my mind I knew I was being unfair to Robin and I loved her too much to put our relationship at further risk so I called Mayo and asked for psychiatric help.  It was almost two years after my transplant before we found the right combination of medications and then one day even though the sun didn’t come up (it was hidden by clouds)…it did.  I felt something stir — a twinge of optimism of ambition a feeling that life might be worth living after all –.and each succeeding day got a little bit better. The pain diminished, I began sleeping in bed again and best of all began looking toward the future and participating in family life. The anti-depressants I was taking changed my mood completely.  I started doing the grocery shopping, some light housework and best of all Robin had asked me to make some fixtures for her art show booth and I was doing woodwork…one of my great loves.

As time when on my assignments in the woodworking shop became more interesting and challenging.  Whenever Robin needed a shelf, a display case, an ear ring display frame or box or lazy susan I would make it and I found it most enjoyable.  Then we decided to try Jewelry boxes and I found a new artistic niche for myself.  Soon I found myself busier than I ever imagined I would or even could be.  I was up and around and using both my head and my hands to be productive and in the process was helping Robin.  After all she had done for me it was the least I could to help her and it felt good to do it.

So here we are at 2013 and this is my 200th blog. I’ve written and posted on subjects ranging from anorexia to Xenotransplantation.  Our blogs have become internationally famous and respected.  Bobs Newheart is a leading source for transplant and donor information in the world.  We are now averaging nearly 4,000 readers a month. Organ Transplant Initiative (OTI) recently got its 3000th member and we grow larger every day … no small achievement when there are scores of transplant groups on the internet.  Size is important if we are to be an effective advocacy group.  Decision makers listen when large groups of people speak up.  The bigger we get, the more the people who make life and death decisions will listen.

I am not a particularly religious person but I am positive that my life was saved so I could help to save or at least comfort those who languish on the transplant list.  I have committed to my unknown donor and to all who join OTI and read my blogs that I will do whatever I can to get more organ donors, promote and support further scientific and technological research into alternatives to organ donation and to provide information that people need to make good sound medical decisions.  I will not quit until this new heart I have stops beating and then I’m hoping others will pick up what I started and make it even better.

That’s my story.  It isn’t much different I’m sure from thousands of other transplant recipients who underwent some tough times but overcame them.  We all have a thousand thank you notes to send primarily to our donors and donor families but also to medical team that retrieved then implanted a new heart or other organ, the nurses and doctors who took care of us In the hospital, for continuing care and of course our caregivers…what on earth would we ever do without them?

In my case my thanks go to my unknown donor and his family, my wonderful loving wife Robin, my  kids and Robin’s, our grandchildren and great grandchildren my brother and sister and cousins, the Diffie family, Mayo Doctors Hosenpud, Yip and Patel and  coordinator Stephanie Orum and all my Facebook and WordPress friends.

The mission of Organ Transplant Initiative is to work to ensure than anyone who needs an organ/tissue transplant can get one.  Some say that’s an impossible dream.  I say nothing is impossible.

Bob Aronson

The song Impossible Dream from Man of LaMancha seems fitting in many ways but more than anything else it speaks directly to the OTI Mission.

To dream … the impossible dream …

To fight … the unbeatable foe …

To bear … with unbearable sorrow …

To run … where the brave dare not go …

To right … the unrightable wrong …

To love … pure and chaste from afar …

To try … when your arms are too weary …

To reach … the unreachable star …

This is my quest, to follow that star …

No matter how hopeless, no matter how far …

To fight for the right, without question or pause …

To be willing to march into Hell, for a Heavenly cause …

This blog is dedicated to my unknown donor and to all those who are awaiting transplants all over the world.


kidney cartoon 2

Blog by Bob Aronson

My last blog was about kidney disease and so is this one.  “Steering Toward Hope” told about Johnny Racine the Canadian father of 16 year old twin boys and how they turned their 2007 Ford Mustang into an 800 horsepower fire breathing showpiece named “The Kidney Hope Car.”  Racine, his boys and the rest of the “Steering” team will travel the width of Canada to promote organ donation and to raise money for kidney research.

This post will take a different but complimentary approach.  The law of supply and demand applies to human organs as it does to many other commodities.  While we must work harder than ever to increase the supply we must concurrently do everything we can to reduce the demand.  It is the only way we will ever arrive at anything even close to resembling a balance of the two. 

The following paragraphs will examine kidney disease from several angles — from listening to how patients describe their illness to prevention, treatment and what the future holds.

Before I get into the real life, real people part of this blog, let me first lay out the facts about Chronic Kidney Disease (CKD).  It is a major health problem that affects more than 26 million Americans.  It is the ninth-leading cause of death in the U.S.   While the numbers are different elsewhere every country is having the same experience.  Whether you are from Singapore, New Zealand, Canada or Peru you will find that kidney disease is on the rise and there are not enough organs for the number of people who need transplants.

Of the 26 million Americans with kidney disease, about half a million face kidney failure, the condition that requires dialysis. Dialysis, though, is not a cure and in many cases is a stop gap effort while the patient awaits an organ transplant — but transplants are hard to get. 

At this writing in November of 2013 there are almost 100,000 people on the list awaiting kidney transplants but 5-6,000 of them die while waiting because the supply of organs not only does not meet demand it is falling farther and farther behind.  Unlike other transplants though, one can also get a kidney from a living donor but there aren’t enough of them either in fact the number of living kidney donors has fallen steadily for the past several years, to 13,040 in 2012, despite the growing need.  Regardless of the source the average wait time for a Kidney Transplant in the U.S. is 1,121 days. 

I’m hoping this blog will help people understand two things. 1) how to prevent kidney disease and 2) what to expect if you get it.  But first, I think it is important to discuss what causes CKD.

Causes of Kidney Disease

The two main causes of chronic kidney disease are diabetes and high blood pressure, which are responsible for up to two-thirds of the cases. Diabetes happens when your blood sugar is too high, causing damage to many organs in your body, including the kidneys and heart, as well as blood vessels, nerves and eyes. High blood pressure, or hypertension, occurs when the pressure of your blood against the walls of your blood vessels increases. If uncontrolled, or poorly controlled, high blood pressure can be a leading cause of heart attacks, strokes and chronic kidney disease. Also, chronic kidney disease can cause high blood pressure.

Other conditions that affect the kidneys are:

  • Glomerulonephritis, a group of diseases that cause inflammation and damage to the kidney’s filtering units.
  •  Inherited diseases, such as polycystic kidney disease, which causes large cysts in the kidneys that damage the surrounding tissue
  • Repeated urinary infections.
  • Pregnancy problems. Sometimes a narrowing of the womb can occur that prevents normal outflow of urine causing it instead to flow back up to the kidney causing infections and kidney damage.
  •  Lupus and other immune system diseases
  • Obstructions caused by kidney stones, tumors or, in men, an enlarged prostate gland.

High risk groups include those with diabetes, hypertension and family history of kidney failure.  African Americans, Hispanics, Pacific Islanders, American Indians and senior citizens are at increased risk.

Before we get into the details of kidney disease and what to do if you have it, let us first discuss how to avoid it.  While there is no sure fire way to prevent kidney problems there are many very effective steps you can take because lifestyle can be a great contributor to the development of all diseases.

Avoiding Kidney Disease

national kidney foundation logoThe National Kidney Foundation has the following guidelines to reduce the risk of developing kidney disease:

  • Reduce sodium intake: Americans consume too much sodium (salt)
  • Limit red meat: Diets high in protein – especially those with animal protein – may harm the kidneys. Red meat is also high in saturated fat.
  • Avoid soda: Sugar-sweetened drinks, like sodas, are high in calories and contain no nutritious value. Additionally, colas have phosphorus additives which can damage kidneys.
  • Give up processed foods: Potato chips, crackers, cheese spreads, instant potato mix, and deli meats are all examples of processed foods that are high in phosphorus additives and sodium – both of which can have a damaging effect on the kidneys.
  • Reduce sugar intake: Consuming too much sugar can result in diabetes or obesity – both linked to kidney disease.
  • Sit less and stand more: Recent research has linked sitting for 8 hours or more a day with developing kidney disease.
  • Exercise and lose weight: Diabetes is responsible for 44 percent of all new cases of kidney failure. Obesity and Type 2 diabetes are on the rise and can often be treated and reversed.
  • Manage high blood pressure: Both considered silent killers, many people don’t realize high blood pressure and kidney disease are linked. Controlling blood pressure levels can prevent kidney damage and failure.
  • Avoid long term use of kidney-toxic drugs: Over-the-counter (OTC) pain medications, nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen brand names (Motrin, Advil, and Nuprin).
  • Get tested: Ask your doctor for an annual urine test to check for protein in the urine, one of the earliest signs of kidney disease, and a blood test for creatinine

But…there’s a whole lot more to preventing kidney disease.  The Correct Diet Can Help Avoid Kidney Disease  http://www.medicalnewstoday.com/articles/259203.php (See this link for the full story.)

Bad diet choices and habits like smoking and obesity are linked to ajkd logoan increased risk for kidney disease, suggests a new study published in the American Journal of Kidney Disease.

A group of investigators, led by Alex Chang, MD, of Johns Hopkins University, discovered that people with regular kidneys whose diet quality was bad – high in processed and red meats, sodium, and sugar-sweetened beverages, and low in fruit, nuts, legumes, whole grains, and low-fat dairy – were more likely to develop kidney disease.

Just one percent of people without unhealthy diet or lifestyle choices developed protein in their urine – an early sign of kidney damage. On the other hand, 13% of participants who had at least three unhealthy factors such as obesity, smoking, and poor diet developed protein in their urine.

Obese people, i.e. those with a body mass index (BMI) of at least 30, were twice as likely to develop kidney disease, the authors reported. A poor diet independently influenced risk for chronic kidney disease after adjusting for weight and other influential factors.

In total, those who ended up with kidney disease were more likely…

  • to be African American
  • to have high blood pressure
  • to have diabetes
  • to have a family history of kidney disease
  • have a higher intake of soft drinks, fast food, and red meat compared to those who did not have kidney disease.

How it Feels to Have Kidney Disease

Now let’s get to the disease itself. The medical profession can describe it in terms no one can understand but I prefer to hear from patients.  What does it feel like to have kidney disease, how does your body change?  That’s a tough question to answer because so many people have no symptoms or symptoms that are so mild they don’t notice them but we did find some clear, understandable and frightening explanations.

We are going to look at symptoms of kidney failure from two perspectives. First the little tell-tale signs that something might be amiss and secondly the more specific complaints as told by patients.  Fist the little signs that indicate you might have kidney disease but don’t diagnose yourself.  See your physician.  You might have kidney disease if you:

  • feel more tired and have less energy
  • have trouble concentrating
  • have a poor appetite
  • have trouble sleeping
  • have muscle cramping at night
  • have swollen feet and ankles
  • have puffiness around your eyes, especially in the morning
  • have dry, itchy skin
  • Need to urinate more often, especially at night

Now let’s look at more serious conditions. If you are feeling anything like any of the following people you probably should see your doctor as soon as possible.

  • “I feel like I have the flu and am cold most of the time and. When I take my temperature, it is normal. I feel sort of dizzy, have a loss of appetite, food doesn’t have any taste, I have shortness of breath, no energy, and am nauseous.  It’s pretty miserable.”
  • “When I first got sick I really thought it was a normal cold. I had a fever, was sneezing, runny nose etc. Then it got worse to where I was throwing up, had blood coming out in spits, vomit, urine, etc. Then it became really hard to breath and I couldn’t lay down anymore as it would cause me to suffocate. I ended up in the hospital where they told me both my kidneys failed and liquid was pushed up to my lungs which was causing me to suffocate. I don’t want to scare anyone but please learn from my mistake of not going to the hospital for about 3 weeks after I first got the cold like symptoms. Get a check up even if you think it is a cold!”
  • “My kidney failure was discovered by accident through routine blood work at the time of my yearly physical. The first red flag was a high potassium level on two different blood draws over a two month period of time. I had observed several symptoms too,  The first symptom strangely was an “itchy back,” another one was an “ill feeling” — not being very hungry – sweating — breathlessness — a rapid heart rate — and discomfort (pain) in the location of the left kidney. These “symptoms” did not appear all at once or I would have seen a doctor. I now know that all of these are symptoms of chronic kidney failure. It is vital to be informed and educated.” 
  •  “I was diagnosed about three years ago with stage 3 kidney failure. I had no signs that I was aware of as I also have congestive heart failure.  Now, I itch alll over my body, perspire excessively and have extreme pain in my back, neck,shoulders and legs, as well as increased ankle swelling.”
  • “I did not realize I had quit urinating until my husband and I went on a long road trip. I didn’t feel the need to stop to urinate at all. I paid no attention at the time but now I remember that I was very nauseous, vomiting, and had horrible leg cramps. On the third day I went to the ER and was admitted to the ICU. After five dialysis treatments I started to recover.   I now measure my output just to be sure.”

For the sake of education let’s assume you have been diagnosed with kidney disease. What are your options?  There really are only two.  1) you can choose to allow your medical team to treat it with medication and ultimately dialysis.  2) a kidney transplant but you must qualify and only a medical team at a transplant center can determine if you are a candidate for a transplant.

If Dialysis is Ordered

Chronic kidney disease continually gets worse and eventually leads to end-stage renal disease, also known as kidney failure.

\Your doctor might recommend you begin dialysis treatments once you reach the point where you have only 10 to 15 percent of kidney function left.

With kidney failure, the toxins and excess fluid that your kidneys should be releasing begin to build up in your body. People suffering from kidney failure begin dialysis to help their bodies remove these wastes, salts and fluid.

Two kinds of Dialysis

  1. Hemodialysis and
  2. Peritoneal dialysis.

Hemodialysis is typically performed at dialysis centers or hospitals but some clinics offer smaller devices for home use.

Hemodialysis, patients generally have an access point  in their arm to which the dialysis machine is connected.  On average It takes aobut four hours for the blood that is drawn from your body to be cleansed and returned.

Peritoneal dialysis is more likely to be done at home after you have a catheter placed in your stomach (a minor surgery).

There are two kinds of Peritoneal dialysis, 1) continuous ambulatory and 2) continuous cycling

Continuous cycling peritoneal dialysis is usually done at night. Before retiring you attach the dialysis machine tube to your catheter which pumps a solution into your stomach.  It stays there for a few hours so your stomach can act as a filter allowing waste and other fluids to pass through it into the solution.

Continuous ambulatory peritoneal dialysis is much different because you don’t need a  machine. You simply run dialysis solution into your abdomen through the catheter and after 4k to 6 hours drain it into a bag.  A physician can tell you how often during the day you need to do this

Risk Factors

There are several.  They include anemia, bone disease, high blood pressure and depression. Some patients on hemodialysis might have also have problems with low blood pressure.

Patients undergoing peritoneal dialysis are at risk of developing peritonitis which is an infection in the stomach lining. Your doctor will likely prescribe antibiotics to treat the problem.

 Got questions?  Many answers can be found here.

http://www.nwkidney.org/dialysis/startingOut/basic/faqs.html

 A Kidney Transplant

If it has been determined that a Kidney transplant is your only option this information may prove to be invaluable. 

KidneyBuzz.com encourages patients to stay as healthy as possible by managing stress, eating well, and staying active. It is important for patients to remain as well as possible during this time, so they are ready for kidney transplant surgery as soon as a donor organ becomes available. For patients who have a living organ donor, scheduling transplant surgery can take into account the health status of the recipient as well as other factors.

Manage your stress. Many patients constantly worry about their treatments, blood work results, future surgeries, etc. Education and support groups both online such as KidneyBuzz.com, and offline provide patients with tools and support to manage their stress and cope with the challenges associated with their condition. Recommended Reading: Will You be Ready when Your Time Comes for a Kidney Transplant? (this link and links below from KidneyBuzz)

There are other strategies that you can employ to expedite obtaining a Kidney Transplant including listing at more than one transplant center (Multi-Listing). Research has consistently shown that patients who are strategically Multiple Listed will greatly increase their chances of receiving a Kidney Transplant faster.   Nevertheless, only a mere 4.7% of individuals with CKD utilize the Multiple Listing technique.

KidneyBuzz Recommended Reading: “Ins-and -Outs” of Increasing your Chances of Getting a Kidney Faster

There are also website resources available that assist people with CKD to find Kidney Transplant Centers with the lowest average wait times that are the closest to where they live. These free user friendly website tools can be particularly helpful to people who are on a Kidney Transplant Waiting List in a high wait time area because it can significantly increase their access to  Kidney Transplant Centers options with far lower wait times. You can email KidneyBuzz.com at contact@kidneybuzz.com for more information and direct links to discussed sites.

Once you have determined the treatment track you will take the next logobig question most people have is, “How do I pay for the it?”  Well, if you have regular health insurance that might cover it.  If not the National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) http://kidney.niddk.nih.gov/kudiseases/pubs/financialhelp/ offer this information”

In 1972, Congress passed legislation making people of any age with permanent kidney failure eligible for Medicare, a program that helps people age 65 or older and people with disabilities pay for medical care, usually up to 80 percent. The remaining 20 percent can still pose a significant financial burden on patients. Fortunately, other public and private resources can help. Anyone with permanent kidney failure who does not have adequate insurance coverage should seek the help of a certified or licensed social worker. Every dialysis and transplant center has a social worker who can help people with kidney failure locate and apply for financial assistance. Social workers who specialize in helping kidney patients are called nephrology social workers.

Patients can also enlist the assistance of the State Health Insurance Assistance Program (SHIP). The SHIP is a national program that provides free counseling and assistance to Medicare beneficiaries on a wide range of Medicare and supplemental insurance matters. Patients can find a state program by visiting shipnpr.shiptalk.org/shipprofile.aspx click to view disclaimer page.

Medicarecms logo

To qualify for Medicare on the basis of kidney failure, a person must require regular dialysis or have had a Medicare-covered kidney transplant and must have paid into Social Security through an employer-or be the child or spouse of someone who has or have worked under the Railroad Retirement Board, or as a government employee-or be the child or spouse of someone who has or already be receiving Social Security, Railroad Retirement, or Office of Personnel Management benefits.

The Original Medicare Plan has two parts: Part A is hospital insurance, and Part B is medical insurance. Part B covers most outpatient services, including kidney dialysis, doctors’ services, outpatient hospital services, and many other health services and supplies. While Part A has no premiums, most Part B services require premiums, deductibles, and coinsurance.

Some people who are not eligible for Medicare because they have not worked at a job that pays into Social Security may still be eligible to buy Medicare coverage by paying premiums for Part A.

For more information check with the NKUDIC (link posted above)

935503_10201217871274032_357839664_nJay Robare is a friend and a member of my Facebook group Organ Transplant Initiative.  He is the talent behind the design of the OTI logo.  Jay is legally blind and has been on the kidney transplant list for about four years.  He wrote this about two years ago when he lived in Fort Lauderdale, Florida.  He is now a resident of Philadelphia, Pennsylvania.  Here’s Jay’s story….he’s still waiting.

The Jay Robare Story

Waiting for a Kidney

By the time that I was approved for Medicare, I had gone through all my savings and my limited insurance coverage. I had to quit working because my endurance was gone and because I was not working, I could not afford my apartment anymore and I had to start living with others that helped me out. I lost all my furniture and most of my art equipment.

I finally got disability insurance and was qualified for Medicare but not Medicaid since I was making too much money from disability; I got enough to pay rent and had some money for paper products, which costs a lot. I have to dry my hands on paper towels to stay sterile.

I was blessed with $200 in food stamps last year but that has been decreased too; I am out of food by the third week of the month. I keep asking for rides to the various food banks but people are too busy. I am not the only one going through this; most people just can’t understand the magnitude of what we are going through in our lives and in our bodies. I know everyone is having problems for I hear that all the time but when I got sick and started working to get on the waiting list, all my doctors and nurses treated me like I was given a special gift which it is…the gift of life but many people would rather worry about their financial or relationship problem that they will outlive. We won’t outlive our problems, they are literally killing us.

****Editors note.  (When Jay lived in fort Lauderdale he was on Peritoneal Dialyisis…he is no longer but I included it because patient should know about it.)

I didn’t even talk about having to do dialysis every night. The type of dialysis that I do is called Peritoneal Dialysis where I store 2,500 milliliters of sugar saline solution for 2 and a half hour cycles 4 times which is all carbohydrates. I have gained 30 Lbs and I look very well fed; my fried Dirk said I looked like I had a beer belly…my last beer was a Heineken last Christmas. One nice thing about PD instead of hemo dialysis is that I have no liquid restraints. On hemo, I could only have 60 Oz a day or I would risk cramping and THAT was a bitch. Cramps formed in muscles that I thought I never had and the pain was so bad it made me yell out for Jesus…made my tech laugh at me.

Speaking of techs, I had clowns that would not listen to me and do the treatment their own way ending up hurting me. For you on Hemo, THIS IS YOUR TREATMENT AND YOUR BODY, don’t take any crap from these people; make sure that your nurse knows and the director knows that you do not want this person touching you again. Another thing that I like about PD is that it is robbing my body of potassium and this lets me eat things that hemo would never let me eat like bananas, mashed potatoes, spinach, hummus, vegetables and fruits. I do have to take something called a binder every time that I eat something. This medicine absorbs all the phosphorus in the food. The binder can be nasty at times, it is very dry and tastes like I am eating chalk. The chalk does a good job but sometimes it is difficult to take. The meds are a chewable but I think they are coming out with a powder soon.

Another med that I have to take because of PD and a bad parathyroid, caused by ESKD is a drug called Zemplar and Sensipar. Both keep my calcium land my PTH levels down. The only problem is that Sensipar has made me nauseous for the last 4 years; I have been throwing up every time I took this drug for 7-8 months. I guess my body has had enough. The doctors, dietitians and I have been playing games for years. I have finally decided to have a perthyroidectomy. After this surgery, I will need to start taking calcium supplements, including eating more pizza and lasagna…LOL I

I get extremely tired sometimes during the day from either walking to the bus stop and going to Publix to get some noodles or walking from the bus stop to my Davita dialysis clinic to get labs done every Monday or Tuesday; I need to send a vile of blood to my transplant hospital every week so they can keep an eye on my health and changes in my DNA.

*** Editors Note (Jay is now living in Philadelphia and is on hemodialysis which limits his liquid intake.  He is desperately trying to find a living donor.  This journey has been very hard on Jay yet somehow he manages to keep his spirits up.

The Kidney Transplant

kidneysEveryone has two kidneys, each the size of a fist and they have a very important job to do. They filter waste and remove extra water from your blood to make urine.  But…there’s more.  Your kidneys also control your blood pressure and make hormones that your body needs to stay healthy. 

During a kidney transplant

Kidney transplants are performed with general anesthesia, so you’re not aware during the procedure. The surgical team monitors your heart rate, blood pressure and blood oxygen level throughout the procedure.

During the surgery:

  • The surgeon makes an incision and places the new kidnKidney transplantey in your lower abdomen. Unless your own kidneys are causing complications such as high blood pressure or infection, they are left in place.
  • The blood vessels of the new kidney are attached to blood vessels in the lower part of your abdomen, just above one of your legs.
  • The new kidney’s ureter — the tube that links the kidney to the bladder — is connected to your bladder.

Kidney transplant surgery usually lasts about three to four hours.

After a kidney transplant

After your kidney transplant, you can expect to:

  1. Spend several days to a week in the hospital. Doctors and nurses monitor your condition in the hospital’s transplant recovery area to watch for signs of complications. Your new kidney will make urine like your own kidneys did when they were healthy. Often this starts immediately. In other cases it takes several days. Expect soreness or pain around the incision site while you’re healing.
  2. Have frequent checkups as you continue recovering. After you leave the hospital, close monitoring is necessary for a few weeks. Your transplant team will develop a checkup schedule for you. During this time, if you live in another town, you may need to make arrangements to stay close to the transplant center.
  3. Take medications the rest of your life. You’ll take a number of medications after your kidney transplant. Drugs called immunosuppressants help keep your immune system from attacking your new kidney. Additional drugs help reduce the risk of other complications, such as infection, after your transplant.]

http://www.mayoclinic.org/kidney-transplant/kidney-transplant-procedure.html

The Future

What does the future hold?  It is easy to speculate about what the future holds and absolutely impossible to be accurate.  We just don’t know.  Is there promise? Yes! There are many promising developments taking place in laboratories around the world every day.  We won’t go in to all of them because if history is any indicator most of those experiments will fail.  There are some, though, that hold some promise at least for now…like this one.

Intravenous Kidney Cell Transplant Experiments Raise Hope for Future Human Kidney Failure Treatments

May 31, 2012 — Indiana University School of Medicine scientists have successfully transplanted primary kidney cells intravenously to treat renal failure in rats, pointing the way to a possible future alternative to kidney transplants and expensive dialysis treatments in humans.

The researchers, Katherine J. Kelly, M.D., associate professor of medicine, and Jesus Dominguez, M.D., professor of medicine, genetically modified the cells in the laboratory to produce a protein — called SAA — that plays an important role in renal cell growth, embryonic kidney development and kidney regeneration after an injury. Modified cells found their way to the appropriate locations of the damaged kidneys, resulting in regeneration of tissue and improved function in the kidney.

The researchers’ work has been accepted for publication in the American Journal of Physiology — Renal Physiology, which published an advance online version of the paper on May 16.  You can read more here http://www.sciencedaily.com/releases/2012/05/120531135645.htm

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Bob_Aronson at Mayo Jax tight shot 2008-01-30DJH--02Bob Aronson is a heart transplant recipient.  He got his new heart on August 21,2007 at the Mayo Clinic in Jacksonville, Florida where he now lives with wife Robin and their two dogs Reilly, a soft coated Wheaten, and Ziggy a Mini Schnauzer.

For some 25 years before his transplant Bob was an international communications consultant and owner of the Aronson Partnership which became the  Aronson Communications Group after the surgery.  Today he is semi retired and also assists his artist wife Robin with her Jinglers Jewelry art show business.

Prior to starting his consulting firm in the 1980s he served as the Communications Director for a Minnesota Governor;  was the first Anchor of Morning Edition on the Minnesota Public Radio Network; worked as a journalist at several Midwest broadcast facilities and from 1965 to 1974 was one of the first radio talk show hosts in the country.   

Aronson founded Bob’s Newheart and Facebook’s Organ Transplant Initiative (OTI) on November 3, 2007.  OTI is a 3,000 member transplant patient, recipient, caregiver and donor/donor family support and education group. 

Readers are welcome to Join OTI with the only requirement being that you support our mission which can be found in the “About” section of OTI.  We seek to grow our membership because by so doing will have more influence with decision makers as we pursue those issues which would most benefit our members.

Please view our music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

Thank you for reading our Bob’s Newheart blogs and please leave a comment or contact Bob directly at bob@baronson.org.  We intend to continue to expand the number of issues we cover and the availability of information to the public.  You’ll find scores of other posts on Bob’s Newheart, just check the index for topics, click and read.

If you are an organ donor we thank you.  If not you can become one by going to www.donatelife.net it only takes a few minutes.  Then, tell your family what you have done so there is no confusion later.