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What You Need To Know About Your Liver and The Transplant Process


By Bob Aronson

cartoonThe liver is an incredibly important organ and the only one in the human body that can regenerate itself.  It is second only in size to the skin (yes the skin is an organ) and has been described as boomerang shaped.  Virtually every nutrient we consume passes through the liver so it can be processed and turned into a different biochemical form for use by other organs.

Located just below the rib cage in the upper right side of your abdomen the liver has three main functions.  It helps in digestion makes proteins and helps eliminate toxic substances.the liver

The liver is the only organ in the body that can easily replace damaged cells, but if enough cells are lost, the liver may not be able to meet the needs of the body.

The liver is like a very complex factory.  Included in its many functions are:          http://www.medicinenet.com/liver_anatomy_and_function/images-quizzes/index.htm

  • Production of bile that is required in the digestion of food, in particular fats;
  • Storing of the extra glucose or sugar as glycogen, and then converting it back into glucose when the body needs it for energy;
  • Production of blood clotting factors;
  • Production of amino acids (the building blocks for making proteins), including those used to help fight infection;
  • The processing and storage of iron necessary for red blood cell production;
  • Manufacture of cholesterol and other chemicals required for fat transport;
  • Conversion of waste products of body metabolism into urea that is excreted in the urine; and
  • Metabolizing medications into their active ingredient in the body.
  • Cirrhosis is a term that describes permanent scarring of the liver. In cirrhosis, the normal liver cells are replaced by scar tissue that cannot perform any liver function.
  • Acute liver failure may or may not be reversible, meaning that on occasion, there is a treatable cause and the liver may be able to recover and resume its normal functions.

The Liver can be affected by any one of a number of diseases.  Click on the item of interest in the list below for a complete explanation.

The Liver Disease Information Center provides information on a variety of topics related to liver health and liver diseases

liver disease. http://www.liverfoundation.org/abouttheliver/info/

How does alcohol affect the liver? (From the American Liver Foundation)  http://www.liverfoundation.org/abouttheliver/info/alcohol/

Alcohol can damage or destroy liver cells.

liver disease stagesThe liver breaks down alcohol so it can be removed from your body. Your liver can become injured or seriously damaged if you drink more alcohol than it can process.

What are the different types of alcohol-related liver disease?

There are three main types of alcohol-related liver disease: alcoholic fatty liver disease, alcoholic hepatitis, and alcoholic cirrhosis.

Alcoholic fatty liver disease
Alcoholic fatty liver disease results from the deposition of fat in liver cells. It is the earliest stage of alcohol-related liver disease. There are usually no symptoms. If symptoms do occur, they may include fatigue, weakness, and discomfort localized to the right upper abdomen. Liver enzymes may be elevated, however tests of liver function are often normal. Many heavy drinkers have fatty liver disease. Alcoholic fatty liver disease may be reversible with abstinence of alcohol.

Alcoholic hepatitis
Alcoholic hepatitis is characterized by fat deposition in liver cells, inflammation and mild scarring of the liver. Symptoms may include loss of appetite, nausea, vomiting, abdominal pain, fever and jaundice. Liver enzymes are elevated and tests of liver function may be abnormal. Up to 35 percent of heavy drinkers develop alcoholic hepatitis and of these 55% already have cirrhosis.

Alcoholic hepatitis can be mild or severe. Mild alcoholic hepatitis may be reversed with abstinence. Severe alcoholic hepatitis may occur suddenly and lead to serious complications including liver failure and death.

Alcoholic cirrhosis
Alcoholic cirrhosis, the most advanced type of alcohol induced liver injury is characterized by severe scarring and disruption of the normal structure of the liver — hard scar tissue replaces soft healthy tissue. Between 10 and 20 percent of heavy drinkers develop cirrhosis. Symptoms of cirrhosis may be similar to those of severe alcoholic hepatitis. Cirrhosis is the most advanced type of alcohol-related liver disease and is not reversed with abstinence. However, abstinence may improve the symptoms and signs of liver disease and prevent further damage

The Liver Transplant

Liver transplants are performed only for patients with end-stage liver disease for whom standard medical and surgical therapies have failed. Conditions that can lead to liver transplantation include: transplant(http://www.barnesjewish.org/conditions-leading-to-liver-transplant)

Liver transplants are the second most common transplants after kidneys.  They require that the blood type and body size of the donor match the person receiving the new organ. There are more  6,000 liver transplants are performed each year in the United States. The surgery usually takes between four and twelve hours and most patients can expect a hospital stay of up to three weeks following surgery. . .

Essential Information For The Transplant Patient

Most transplant centers function in pretty much the same manner, but Johns Hopkins Medical Center in Baltimore, Maryland offers one of the best summaries of what the transplant patient can expect.  http://www.hopkinsmedicine.org/healthlibrary/test_procedures/gastroenterology/liver_transplantation_procedure_92,P07698/

Risks of the procedure

As with any surgery, complications can occur. Some complications from liver transplantation may include, but are not limited to, the following:

  • Bleeding
  • Infection
  • Blockage of the blood vessels to the new liver
  • Leakage of bile or blockage of bile ducts
  • Initial lack of function of new liver

The new liver may not function for a brief time after the transplant. The new liver may also be rejected. Rejection is a normal reaction of the body to a foreign object or tissue. When a new liver is transplanted into a recipient’s body, the immune system reacts to what it perceives as a threat and attacks the new organ, not realizing that the transplanted liver is beneficial. To allow the organ to survive in a new body, medications must be taken to trick the immune system into accepting the transplant and not attacking it as a foreign object.

Contraindications for liver transplantation include, but are not limited to, the following:

  • Current or recurring infection that cannot be treated effectively
  • Metastatic cancer. This is cancer that has spread from its primary location to one or more additional locations in the body.
  • Severe cardiac or other medical problems preventing the ability to tolerate the surgical procedure
  • Serious conditions other than liver disease that would not improve after transplantation
  • Noncompliance with treatment regimen
  • Alcohol consumption

There may be other risks depending on your specific medical condition. Be sure to discuss any concerns with your doctor prior to the procedure.

Before the procedure

In order to receive a liver from an organ donor who has died (cadaver), a recipient must be placed on a waiting list of the United Network for Organ Sharing (UNOS). Extensive testing must be done before an individual can be placed on the transplant list.

Because of the wide range of information necessary to determine eligibility for transplant, the evaluation process is carried out by a transplant team. The team includes a transplant surgeon, a transplant hepatologist (doctor specializing in the treatment of the liver), one or more transplant nurses, a social worker, and a psychiatrist or psychologist. Additional team members may include a dietitian, a chaplain, and/or an anesthesiologist.

Components of the transplant evaluation process include, but are not limited to, the following:

  • Psychological and social evaluation. Psychological and social issues involved in organ transplantation, such as stress, financial issues, and support by family and/or significant others are assessed. These issues can significantly impact the outcome of a transplant.
  • Blood tests. Blood tests are performed to help determine a good donor match, to assess your priority on the donor list, and to help improve the chances that the donor organ will not be rejected.
  • Diagnostic tests. Diagnostic tests may be performed to assess your liver as well as your overall health status. These tests may include X-rays, ultrasound procedures, liver biopsy, and dental examinations. Women may receive a Pap test, gynecology evaluation, and a mammogram.

The transplant team will consider all information from interviews, your medical history, physical examination, and diagnostic tests in determining your eligibility for liver transplantation.

Once you have been accepted as a transplant candidate, you will be placed on the UNOS list. Candidates in most urgent need of a transplant are given highest priority when a donor liver becomes available based on UNOS guidelines. When a donor organ becomes available, you will be notified and told to come to the hospital immediately.

If you are to receive a section of liver from a living family member (living-related transplant), the transplant may be performed at a planned time. The potential donor must have a compatible blood type and be in good health. A psychological test will be conducted to ensure the donor is comfortable with the decision.

The following steps will precede the transplant:

  • Your doctor will explain the procedure to you and offer you the opportunity to ask any questions about the procedure.
  • You will be asked to sign a consent form that gives your permission to do the surgery. Read the form carefully and ask questions if something is not clear.
  • For a planned living transplant, you should fast for eight hours before the operation, generally after midnight. In the case of a cadaver organ transplant, you should begin to fast once you are notified that a liver has become available.
  • You may receive a sedative prior to the procedure to help you relax.
  • Based on your medical condition, your doctor may request other specific preparation.

During the procedure

Liver transplantation requires a stay in a hospital. Procedures may vary depending on your condition and your doctor’s practices.

Generally, a liver transplant follows this process:

  • You will be asked to remove your clothing and given a gown to wear.
  • An intravenous (IV) line will be started in your arm or hand. Additional catheters will be inserted in your neck and wrist to monitor the status of your heart and blood pressure, as well as for obtaining blood samples. Alternate sites for the additional catheters include the subclavian (under the collarbone) area and the groin.
  • You will be positioned on the operating table, lying on your back.
  • If there is excessive hair at the surgical site, it may be clipped off.
  • A catheter will be inserted into your bladder to drain urine.
  • After you are sedated, the anesthesiologist will insert a tube into your lungs so that your breathing can be controlled with a ventilator. The anesthesiologist will continuously monitor your heart rate, blood pressure, breathing, and blood oxygen level during the surgery.
  • The skin over the surgical site will be cleansed with an antiseptic solution.
  • The doctor will make a slanting incision just under the ribs on both sides of the abdomen. The incision will extend straight up for a short distance over the breast bone.
  • The doctor will carefully separate the diseased liver from the surrounding organs and structures.
  • The attached arteries and veins will be clamped to stop blood flow into the diseased liver.
  • Depending on several factors, including the type of transplant being performed (whole liver versus a portion of liver), different surgical techniques may be used to remove the diseased liver and implant the donor liver or portion of the liver.
  • The diseased liver will be removed after it has been cut off from the blood vessels.
  • The doctor will visually inspect the donor liver or portion of liver prior to implanting it.
  • The donor liver will be attached to the blood vessels. Blood flow to the new liver will be established and then checked for bleeding at the suture lines.
  • The new liver will be connected to the bile ducts.
  • The incision will be closed with stitches or surgical staples.
  • A drain may be placed in the incision site to reduce swelling.
  • A sterile bandage or dressing will be applied.

After the procedure In the hospital

After the surgery you may be taken to the recovery room before being taken to the intensive care unit (ICU) to be closely monitored for several days. Alternately, you may be taken directly to the ICU from the operating room. You will be connected to monitors that will constantly display your EKG tracing, blood pressure, other pressure readings, breathing rate, and your oxygen level. Liver transplant surgery requires an in-hospital stay of seven to 14 days, or longer.recovery

You will most likely have a tube in your throat so that your breathing can be assisted with a ventilator until you are stable enough to breathe on your own. The breathing tube may remain in place for a few hours up to several days, depending on your situation.

You may have a thin plastic tube inserted through your nose into your stomach to remove air that you swallow. The tube will be removed when your bowels resume normal function. You will not be able to eat or drink until the tube is removed.

Blood samples will be taken frequently to monitor the status of the new liver, as well as other body functions, such as the kidneys, lungs, and blood system.

You may be on special IV drips to help your blood pressure and your heart and to control any problems with bleeding. As your condition stabilizes, these drips will be gradually weaned down and turned off as tolerated.

Once the breathing and stomach tubes have been removed and your condition has stabilized, you may start liquids to drink. Your diet may be gradually advanced to more solid foods as tolerated.

Your immunosuppression (antirejection) medications will be closely monitored to make sure you are receiving the optimum dose and the best combination of medications.

When your doctor feels you are ready, you will be moved from the ICU to a room on a regular nursing unit or transplant unit. Your recovery will continue to progress here. Your activity will be gradually increased as you get out of bed and walk around for longer periods of time. Your diet will be advanced to solid foods as tolerated.

Nurses, pharmacists, dietitians, physical therapists, and other members of the transplant team will teach you how to take care of yourself once you are discharged from the hospital.

At home

Once you are home, it will be important to keep the surgical area clean and dry. Your doctor will give you specific bathing instructions. The stitches or surgical staples will be removed during a follow-up office visit, if they were not removed before leaving the hospital.

You should not drive until your doctor tells you to. Other activity restrictions may apply.

Notify your doctor to report any of the following:

  • This may be a sign of rejection or infection.
  • Redness, swelling, or bleeding or other drainage from the incision site
  • Increase in pain around the incision site. This may be a sign of infection or rejection.
  • Vomiting and/or diarrhea

Your doctor may give you additional or alternate instructions after the procedure, depending on your particular situation.

What is done to prevent rejection?

To allow the transplanted liver to survive in a new body, you will be given medications for the rest of your rejectionlife to fight rejection. Each person may react differently to medications, and each transplant team has preferences for different medications.

New antirejection medications are continually being developed and approved. Doctors tailor medication regimes to meet the needs of each individual patient.

Usually several antirejection medications are given initially. The doses of these medications may change frequently, depending on your response. Because antirejection medications affect the immune system, people who receive a transplant will be at higher risk for infections. A balance must be maintained between preventing rejection and making you very susceptible to infection.

Some of the infections you will be especially susceptible to include oral yeast infection (thrush), herpes, and respiratory viruses. You should avoid contact with crowds and anyone who has an infection for the first few months after your surgery.

The following are the most common symptoms of rejection. However, each individual may experience symptoms differently. Symptoms may include, but are not limited to, the following:

  • Fever
  • A yellowing of the skin and eyes due to bile pigments in the blood.
  • Dark urine
  • Itching
  • Abdominal swelling or tenderness
  • Fatigue or irritability
  • Headache
  • Nausea

The symptoms of rejection may resemble other medical conditions or problems. Consult your transplant teaoncerns you have. Frequent visits to and contact with the transplant team are essential.

Organ transplants are expensive and the cost goes well beyond the surgery itself.  If you are told you need a transplant and are sent to a transplant center for evaluation you can bet one of the first questions you will be asked is, “Do you have the financial resources to pay for your transplant?”

According to the National Foundation for Transplants http://www.transplants.org/faq/how-much-does-transplant-cost the average cost of a liver transplant and first year expenses in the United States is $575,000.

The Mayo Clinic developed this helpful list of questions that will help you develop the answer to that question. http://www.mayoclinic.org/departments-centers/transplant-center/liver-transplant/choosing-mayo-clinic/costs-insurance-information

Insurance information

Before your transplant, it’s important that you work closely with your insurance company to understand your benefit plan. You’ll be responsible for any of your transplant and medical care costs not covered by your insurance company.costs

You may want to ask your insurance company several questions regarding your transplant expenses, including:

  • What is the specific coverage of my plan? What are my deductibles, coinsurance, copayments, lifetime maximum amount and annual maximum amounts for both medical care and transplant services?
  • Does my plan have a pre-existing or waiting period clause? If so, what is the time frame? Can this be waived?
  • Does my plan include pharmacy coverage? If so, will my plan cover my current medications and immunosuppressant medications?
  • Does my plan require any special approvals for evaluation or transplant? How long does the approval process take once submitted to insurance?
  • Does my plan cover my transportation and lodging expenses during my transplant care?
  • Does my current insurance require enrollment in Medicare when eligible?
  • Does my insurance follow Medicare Coordination of Benefits guidelines?
  • How will my current coverage change after enrolling in Medicare? Will my plan become a supplemental or secondary plan?

If your plan is a Medicare supplement, ask questions including:

  • Does my plan follow Medicare guidelines?
  • Does my plan cover Medicare Part A and B deductible and coinsurance?
  • Does my plan have a pre-existing or waiting period? If so, what is the time frame?
  • Does my plan offer an option for Medicare Part D coverage?

Other expenses

Please plan for other expenses that may occur related to your transplant, which may include follow-up medical appointments, long-term medications, caregiver expenses, travel, parking, lodging and other expenses.

Financial Aid

If you need an organ transplant, but don’t have the financial resources to pay for it you should first work with the transplant center social worker to see what is available. There are a number of resources for which you may qualify.  Just click on this link for the complete list and explanation of services.  http://www.transplantliving.org/before-the-transplant/financing-a-transplant/directory/

bob 2Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 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.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

Sugar Could Be Killing us Physically and Financially


 By Bob Aronson

 sugar cartoonIn September 2013, a bombshell report from Credit Suisse’s Research Institute brought into sharp focus the staggering health consequences of sugar on the health of Americans. The group revealed that approximately “30%–40% of healthcare expenditures in the USA go to help address issues that are closely tied to the excess consumption of sugar.”  The figures suggest that our national addiction to sugar runs us an incredible $1 trillion in healthcare costs each year. The Credit Suisse report highlighted several health conditions including coronary heart diseases, type II diabetes and metabolic syndrome, which numerous studies have linked to excessive sugar intake.

This blog is not meant to be a condemnation of sugar.  It is a condemnation of our addiction to it.  We all love a sweet taste and frankly, we deserve it from time to time.  Often,there is no better reward, but we have to learn to limit our intake.  Like so many things in life it is the abuse of any substance that can cause us to suffer.  Sugar is particularly tough because it is unavoidable.  It is in almost everything and often is a naturally occurring substance.  We would all be a lot healthier if we would just read food labels and limit our excesses.  Having established this little disclaimer, we can now discuss sugar and its potential and real dangers.

 Women’s Health Magazine says that the typical American now swallows the equivalent of 22 sugar cubes every 24 hours. That means the average woman eats 70 pounds—nearly half her weight—of straight sugar every year. Women’s Health Magazine. http://www.womenshealthmag.com/health/dangers-of-sugar

In a major story on sugar Women’s Health goes on to say: When eaten in such vast quantities, sugar can wreak havoc on the body. Over time, that havoc can lead to diabetes and obesity, and also Alzheimer’s disease and breast, endometrial, and colon cancers. One new study found that normal-weight people who loaded up on sugar doubled their risk of dying from heart disease. Other research pinpoints excess sugar as a major cause of nonalcoholic fatty liver disease, which can lead to liver failure.

The magazine characterized the use of sugar this way, “The instant something sweet touches your tongue, your taste buds direct-message your obesity graphicbrain: deee-lish. Your noggin’s reward system ignites, unleashing dopamine. Meanwhile, the sugar you swallowed lands in your stomach, where it’s diluted by digestive juices and shuttled into your small intestine. Enzymes begin breaking down every bit of it into two types of molecules: glucose and fructose. Most added sugar comes from sugar cane or sugar beets and is equal parts glucose and fructose; lab-concocted high-fructose corn syrup, however, often has more processed fructose than glucose. Eaten repeatedly, these molecules can hit your body…hard.

Anne Alexander, editorial director of Prevention and author of The Sugar Smart Diet provided this explanation of what sugars can do to your body.

 GlucoseGlucose graphic

  • It seeps through the walls of your small intestine, triggering your pancreas to secrete insulin, a hormone that grabs glucose from your blood and delivers it to your cells to be used as energy.
  • But many sweet treats are loaded with so much glucose that it floods your body, lending you a quick and dirty high. Your brain counters by shooting out serotonin, a sleep-regulating hormone. Cue: sugar crash.
  • Insulin also blocks production of leptin, the “hunger hormone” that tells your brain that you’re full. The higher your insulin levels, the hungrier you will feel (even if you’ve just eaten a lot). Now in a simulated starvation mode, your brain directs your body to start storing glucose as belly fat.
  • Busy-beaver insulin is also surging in your brain, a phenomenon that could eventually lead to Alzheimer’s disease. Out of whack, your brain produces less dopamine, opening the door for cravings and addiction-like neurochemistry.
  • Still munching? Your pancreas has pumped out so much insulin that your cells have become resistant to the stuff; all that glucose is left floating in your bloodstream, causing prediabetes or, eventually, full-force diabetes.

FructoseFructose graphic

  • It, too, seeps through your small intestine into the bloodstream, which delivers fructose straight to your liver.
  • ​Your liver works to metabolize fructosei.e., turn it into something your body can use. But the organ is easily overwhelmed, especially if you have a raging sweet tooth. Over time, excess fructose can prompt globules of fat to grow throughout the liver, a process called lipogenesis, the precursor to nonalcoholic fatty liver disease.
  • ​Too much fructose also lowers HDL, or “good” cholesterol, and spurs the production of triglycerides, a type of fat that can migrate from the liver to the arteries, raising your risk for heart attack or stroke.
  • ​Your liver sends an S.O.S. for extra insulin (yep, the multi-tasker also aids liver function). Overwhelmed, your pancreas is now in overdrive, which can result in total-body inflammation that, in turn, puts you at even higher risk for obesity and diabetes

Robert Lustig, an endocrinologist from California gained national attention after a lecture he gave titled “Sugar: The Bitter Truth” went viral in 2009.  www.youtube.com/watch?v=dBnniua6-oM

Lustig’s research looked at the connection between sugar consumption and the poor health of Americans came to a conclusion that startled many.  The Doctor has published twelve articles in peer-reviewed journals identifying sugar as a major factor in the epidemic of degenerative disease that now afflicts our country.  Lustig’s data clearly show that excessive sugar consumption is a key player in the development of some cancers along with obesity, type II diabetes, hypertension, and heart disease. As a result he has concluded that 75% of all diseases in America are brought on by our lifestyle and are entirely preventable.

While most in the medical profession seem to accept Lustig’s assessment of sugar at least one MD David Katz the director of the Yale Prevention Center, disagrees.  http://www.huffingtonpost.com/david-katz-md/sugar-health-evil-toxic_b_850032.html  Katz says, among other things, “So those most motivated to get the sugar they need wind up getting the most sugar. They, in turn, benefit from this by having more of the needed food energy — and thus are more likely to survive. In particular, they are more likely to survive into adulthood, and to procreate. And thus they become our ancestors, who pass traits along to us.”

Lest you think I am making a mountain of a molehill allow some of the body of evidence that sugar can cause health problems.   The claims about the ill health effects of sugar are not just those leveled by Dr. Lustig, they are backed by a solid body of research.  Here are just a few of the research headlines.

  • Consumption of Sugar-Sweetened Drinks Linked to Heart Disease
  • How Fructose Causes Obesity and Diabetes
  • Fructose intake connected with an increased risk of cardiovascular illness and diabetes in teenagers
  • Fructose consumption increases the risk of heart disease.
  • The Negative Impact of Sugary Drinks on Children.
  • Sugar and High Blood Pressure
  • Sugar Consumption Associated with Fatty Liver Disease and Diabetes
  • The Adverse Impact of Dietary Sugars on Cardiovascular Health
  • Rats Fed High Fructose Corn Syrup Exhibit Impaired Brain Function
  • High Fructose Corn Syrup Intake Linked with Mineral Imbalance and Osteoporosis.
  • Diet of Sugar and Fructose Impairs Brain Function

 To be healthy and avoid sugar or at least limit your intake you simply must read labels.  Unfortunately those who seek to force sugar into our systems have found many ways of complying with the law and telling us there’s sugar in their food but they do it in a manner that sounds less menacing.  

SWEET SYNONYMS
Watch for these sneaky ingredients when reading food labels. Some sound scientific, some almost healthy—but in the end, they all mean “sugar.”

Agave Nectar
Barbados Sugar
Barley Malt Syrup
Beet Sugar
Blackstrap Molasses
Cane Crystals
Cane Juice Crystals
Castor Sugar
Corn Sweetener
Corn Syrup
Corn Syrup Solids
Crystalline Fructose
Date Sugar
Demerara Sugar
Dextrose
Evaporated Cane Juice
Florida Crystals
Fructose
Fruit Juice
Fruit Juice Concentrate
Galactose
Glucose
Glucose Solids
Golden Sugar
Golden Syrup
Granulated Sugar
Grape Juice Concentrate
Grape Sugar
High-Fructose Corn Syrup
Honey
Icing Sugar
Invert Sugar
Lactose
Malt Syrup
Maltodextrin
Maltose
Mannitol
Maple Syrup
Molasses
Muscovado Syrup
Organic Raw Sugar
Powdered Sugar
Raw Sugar
Refiners’ Syrup
Rice Syrup
Sorbitol
Sorghum Syrup
Sucrose
Table Sugar
Treacle
Turbinado Sugar
Yellow Sugar

PICK YOUR POISON
Ultimately, added sugar is added sugar—it all affects you roughly the same way, regardless of where it comes from. Below you will find a short list of the most active and dangerous evil doers. .

High-Fructose Corn Syrup (HFCS)

High fructose corn syrup

Derived from corn starch, syrupy HFCS might be the scariest sweet. Much of it contains mercury, a by-product of chemical processing. But another danger is its high artificial fructose content, not to mention that it can be 75 times sweeter than white sugar. (Listen up, agave eaters: The processed nectar can be up to 85 percent fructose and possibly more damaging to your liver than HFCS!)

Honey (http://tinyurl.com/ogge3r6

Honey sugar comparison

Often touted as far healthier than refined sugar, these do contain fewer chemicals and a better glucose-fructose balance (plus a few helpful antioxidants). However, says Anne Alexander, author of The Sugar Smartdiet even if the unique flavors of maple syrup and raw honey may lead people to use less, these sweeteners can still spike the body.

Natural Sugar

sugar

Sweet news! Unless it’s all you eat, it’s hard to go overboard on truly natural sugars that come directly from fruits and some veggies. Here’s the trick: You have to actually eat the produce. Fruit juices, even those without added sweeteners, will still sugar-bomb your bloodstream. The key is in the fiber, which slows sugar’s absorption in your body, preventing an insulin spike. Any fruit is fair game. “Ones with the most natural sugar have the most fiber,” says Robert Lustig, M.D.

So what’s the bottom line?  Should we avoid sugar completely?  Is that even possible?  Are sugar substitutes a healthy alternative?

First, you probably cannot avoid sugar completely and still eat because it appears naturally in so much of our daily diet.  Additionally, sugar is added to almost every product on the supermarket shelves so the best you can do is severely limit the amount you consume.  Here’s what the Mayo Clinic says. http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/in-depth/added-sugar/art-20045328

How to reduce added sugar in your diet

To reduce the added sugar in your diet, try these tips:

  • Drink water or other calorie-free drinks instead of sugary, nondiet sodas or sports drinks. That goes for blended coffee drinks, too.
  • When you drink fruit juice, make sure it’s 100 percent fruit juice — not juice drinks that have added sugar. Better yet, eat the fruit rather than juice.
  • Choose breakfast cereals carefully. Although healthy breakfast cereals can contain added sugar to make them more appealing to children, plan to skip the non-nutritious, sugary and frosted cereals.
  • Opt for reduced-sugar varieties of syrups, jams, jellies and preserves. Use other condiments sparingly. Salad dressings and ketchup have added sugar.
  • Choose fresh fruit for dessert instead of cakes, cookies, pies, ice cream and other sweets.
  • Buy canned fruit packed in water or juice, not syrup.
  • Snack on vegetables, fruits, low-fat cheese, whole-grain crackers and low-fat, low-calorie yogurt instead of candy, pastries and cookies.

The final analysis

By limiting the amount of added sugar in your diet, you can cut calories without compromising on nutrition. In fact, cutting back on foods with added sugar and solid fats may make it easier to get the nutrients you need without exceeding your calorie goal.

Mayo concludes it’s summary on sugary by saying, “Take this easy first step: Next time you’re tempted to reach for a soda or other sugary drink, grab a glass of ice-cold water instead.”

Artificial sweeteners

artificial sweeteners

“So if I am supposed to avoid sugar, but I like sweets what are my alternatives?”  Well, there’s a lot of controversy surrounding this topic so we’ll turn to Web MD for an answer. http://www.webmd.com/food-recipes/features/best-sugar-substitutes

Thanks to the newest sugar substitutes, it’s becoming easier (and healthier) to bake your cake and eat it too!

There are so many alternative sweeteners available now that they seem to be elbowing sugar right off the supermarket shelf. But what’s so wrong with sugar? At just 15 calories per teaspoon, “nothing–in moderation,” says Lona Sandon, R.D., an assistant professor of clinical nutrition at the University of Texas Southwestern Medical Center in Dallas. “The naturally occurring sugar in an apple is fine, but if we can reduce some of the added sugar in our diet, we can remove some of the empty calories.” Less than 25 percent of your daily calories should come from the added sugar in foods like cookies, cereal, and ketchup, she says. To satisfy your sweet tooth–especially if you’re counting calories, limiting carbs, or dealing with diabetes–try these options:

SWEETLEAF AND TRUVIA

What they are: These sugar alternatives are the latest made from stevia, an herb found in Central and South America that is up to 40 times sweeter than sugar but has zero calories and won’t cause a jump in your blood sugar. Stevia was slow to catch on because of its bitter, licorice-like aftertaste, but makers of Truvia and SweetLeaf have solved this problem by using the sweetest parts of the plant in their products.

Where to find them: In grocery stores and natural-food stores throughout the country and online at sweetleaf.com and truvia.com.

 How to use them: Both work well in coffee and tea or sprinkled over fruit, cereal, or yogurt. You can’t substitute stevia-based products for sugar in baked goods, though, because these products are sweeter than sugar and don’t offer the same color and texture. Makers of SweetLeaf promise to come out with a baking formulation soon.

Health Rx: “Truvia’s one of the most promising alternatives out there,” says nutritionist Jonny Bowden, Ph.D., author of The Healthiest Meals on Earth . “Right now, it looks safe. It tastes just like sugar and has almost no glycemic index, which means it won’t spike your blood sugar.”

WHEY LOW

What it is: Three naturally occurring sugars–fructose, the sugar in fruit; sucrose, or table sugar; and lactose, the sugar in milk–are blended to create this sweetener. While individually the sugars are fully caloric, when blended in Whey Low they interact in such a way that they aren’t completely absorbed into the body. As a result, at four calories per teaspoon, Whey Low has one quarter of the calories and less than one third of the glycemic index of sugar, so you’re less likely to crash after consuming it. It’s available in varieties similar to granular sugar, brown sugar, maple sugar, and confectioners’ sugar.

 

bobBob 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.

 

Thanksgiving in October. An Inspirational Organ Donation Story


pacemaker-cartoon.1.cartoon31_8775 By

Bob Aronson

With Chuck Price

We all know that life ends.  Most of us pretty much ignore that reality.  Thinking about one’s demise is not pleasant and many think that death is in the distant future anyway so why even consider it.  I have long believed that one of the reasons organ donation rates are so low (only 40 percent of Americans are registered donors) is that to be a donor one has to address one’s own death and people don’t like doing that.  It seems, too, that the younger you are the more invincible you feel

People on the national organ transplant list, though, are forced to think about death regardless of age because they have been told they are dying. You can’t get on the list unless it has been determined that only an organ transplant can save your life.

chuck prior to surgery 244-year-old Chuck Price was one of those people.  A mere six months ago he was very near death. Desperate to live and fighting with every fiber of his being he knew his chances of spending much more time with his wife and sons was diminishing rapidly. Price’ lungs were shutting down due to a disease you probably never heard of, Alpha 1 Anti Trypsin Deficiency. Only a double lung transplant could save his life and they are rare. This genetic (inherited) condition is passed from parents to their children.  Alpha-1 may result in serious lung disease in adults and/or liver disease at any age and Chuck Price was unable to escape it.  He has no memory of ever breathing like a normal person. He can only remember a constant struggle for air that has been both debilitating and discouraging.

There’s a lot more to this story but I’m going to stop here for just a few moments and tell you the Chuck Price story in an upside down fashion because that’s the way I learned about this inspirational, incredible and compassionate man.

It all began for me after Chuck got a double lung transplant and thenOTI logo about three weeks ago became a member of my 3,000 member Facebook group, Organ Transplant Initiative (OTI).  One of his first posts caught the attention of a lot of other members.  It came from the heart and it was powerful and moving.  His message was aimed at everyone and no one but it had special meaning for transplant patients, recipients and donors.  Here’s what Chuck wrote on his I-phone, then posted on OTI as he reflected on being able to breathe and live again.

Cuck Price prior to surgery“About 20 weeks ago I was sitting at UVA (University of Virgina) with 12-14% lung function, trying to keep a smile for the sake of my family, but believing that it was another dry run.

20 weeks + 15 minutes ago the flurry around me accelerated to a fervor that turned me to tears, as I feared I would die and never see my wife and kids again

20 weeks + 45 minutes ago I was rushed to a shower, signing reams of paperwork, getting IV and ports installed and told we were “live”, and I cried harder, my wife and I thought and prayed for the angel who was giving me a shot, and for their family.

I tried to picture my boys and burn them into my memory, as I feared it may be my last thought…I signed the last document, a confirmation, to donate my own organs should the worse come to bear.

20 weeks + 90 minutes ago, I was wheeled away adjusting my view tosurgical suite see my wife  for as long as the hall, would allow. I was wheeled into a room, filled with what seemed like futuristic machines and devices, and being attached to such.

My last words to no one and to everyone, “I’ve got 2 boys who don’t know how to be men yet people, and God let someone here be a Cowboy fan.”

20 weeks + 2 hours ago someone injected me with something that calmed me and made me very warm, a mask was placed over my face and I pictured my boys…the light faded to black…

just out of surgery 320 WEEKS LATER, I’m a different man, my lung function is above 100 % in all categories, I’m prepping for my first 5k, I’ve returned to work, started a donate life/alpha 1 awareness foundation…and I’m here to teach my boys to be proper men.

20 WEEKS LATER, thank you God, Thank You my Donor angel, for everything I’m able to experience. Thank you for the good and even the bad days, thank you for the recovery, thank you for the strength when I lack it. Just thank you.”

Then articulating his feelings further he added these heartfelt words as advice to other transplant recipients:

“When you get the call (saying there’s an organ available for you), put it in God’s hands and never waste the chance to thank your donor and donors everywhere. Be humble because no matter what pain you went through to get there, you deserve this no more than others waiting.  You are very lucky to receive such an inexpressible gift. When you heal give back…you’re not an inspiration, you’re not special, you’re not a chosen saint, you’re the recipient of a life-saving organ from another human being.  It is the most precious, special gift anyone of us could imagine….and… YOU OWE!

From myself and all like myself…THANK YOU!”

When I read the post I knew I had to have “The rest of the story,” as newsman Paul Harvey used to say.  I needed to know what brought him to the point where he tapped out that inspiring note on his I-phone so I contacted Chuck and found that he is taking full advantage of his new life.

His youthful exuberance is exciting and contagious.  He sounds like a man who has a thousand things to do but only ten minutes to complete them.  Ideas flow from him like oil from a new gusher and all of it, all of it is based on gratitude aimed at his unknown donor.

I will relate more about Chuck’s plans his feelings and his gratitude but I think it is important to add some perspective here before we do.  First, if you are not an organ donor and want to be just click on this link http://www.donatelife.net and you can register right now.  It only takes seconds.

There are about 120,000 people on the U.S. organ transplant list and only about 28,000 transplants are done each year.  At any given time there are about 1,500 people on the Lung transplant waiting list.  The wait time for lungs is from four to five months.  Unfortunately only one in 5 donors has lungs suitable for transplant. That means that a lot of people die waiting.

For those unfamiliar with the organ transplant process, you can only be added to the waiting list if an organ transplant center committee certifies you as being in the end stage of a disease and that there is nothing more conventional medicine can do to save or prolong your life. In other words you have been told that you are dying.  That news is not only depressing it is irritating and frustrating.  In Chuck Price’ case it was doubly frustrating because he is a “can-do” kind of guy and with Alpha 1 there was nothing he could do — but wait.

As his time on the list lengthened, Chuck believed he might be one of the unlucky ones for whom there was no life-saving organ.  The thought that he would leave behind his lovely wife Lisa and his two sons, 13-year-old Chase and 20-year-old Skyler tore his heart out.  At 44 Chuck had hoped to have a long life ahead of him but now, struggling for air with each breath his time was dwindling to days, maybe hours — and he knew it.

Not being able to breathe is terrifying.  I have Chronic Obstructive Pulmonary Disease (COPD) and while nowhere near as serious as what Chuck experienced I know what it is like to struggle for every breath.  Any amount of exertion can cause breathing to become even more labored and with that difficulty often comes panic…which makes it even worse.  Add difficult breathing to knowing that you are dying and you can imagine Chuck’s state of mind.

If you want to get a hint as to what Chuck and those like him experience with a disease like Alpha 1 take a standard drinking straw between your lips, block your nose and breathe through the straw.  drimped drinking strawNow crimp the straw…and try to breathe.  That’s what Chuck felt like 24 hours a day for almost all of his 44 years.

As a heart transplant recipient I and others with new organs can identify with the emotional roller coaster ride Chuck was on.  Knowing you are dying and that chances of getting a transplant are very slim leaves you with a burning sensation in your chest and gut not unlike acid reflux only there is no quick Pepto Bismol or Zantac relief for it.  The burning never goes away and just when you think it has reached its zenith it gets worse.

The sinking feeling burns through your heart and into your soul leaving you with a smoldering desperation that cannot be defined or explained.  There simply are no words to describe the emotional agony.   It is not so much the fear of dying, although that’s certainly part of it but rather a deep concern for the well-being of loved ones once you are gone.  You desperately want to show a brave face but your insides are mush and you want to scream at the top of your lungs that this just isn’t fair.  When you hug your wife or kids you don’t want to let go.  You almost feel as though dying is an abdication of responsibility to your family and you are wracked with guilt and remorse and even anger…sometimes rage.

Not only did Chuck have a family to which he felt obligated but he was the owner and President of American Weld Worx, an industrial service contractor that serves mining and heavy industrial manufacturing businesses.  So on top of his family concerns were those of his business, his employees and customers.  Chuck was carrying an immense emotional load.

As of six months ago all of that changed because of a generous anonymous stranger.  Chuck Price got his new lungs then.  He still worries about his business and his family, but now that he can breathe he can act on his concerns and fix them.  He is no longer helpless and that makes him very happy indeed.

Price has lots of goals and apparently the energy he’ll need to make them real.  One of his plans has him forming a foundation that will help transplant patients and he talks about it with an excitement that causes excitement.

“I named our foundation Chuckies Second Wind because I can breathe again but I should have named it Chuckies First wind because I have absolutely no memory of ever breathing like this.  I would like to say I breathe like a normal person, but that wouldn’t be true, our Lord and my Donor Angel saw fit to take me from a lung function of 12-14% to well above 100% in all measurable categories.  My Pulmonologist says my lung function is that of a 22-year-old competitive swimmer.  I can’t help but be giddy with happiness, and give daily thanks for the “second wind” I’ve been given.  None of this was possible without the selfless gift, given by my Donor Angel.”

Price’s plans for the foundation are simple.

“My overall goal is to help others receive the same gift that I received regardless of financial standing, I hope the Affordable Care Act (Obamacare) makes that dream come true but that remains to be seen.  Short term  I hope to stimulate people to become donors and reduce the gap between supply and demand. 

Additionally I plan to set up two scholarships.  “The Donor Angel scholarship will be the original and when I discover the name of my donor we will have a second one named after him or her.  I know I’m sounding like an over-achiever here but I think Robert Browning best captured my philosophy, “Ah, but a man’s reach should exceed his grasp, Or what’s a heaven for?”

One might read what I have written and what Chuck Price said and ask, “Is this real, is he really that grateful?”  The answer is, “Yes He is that grateful.”  I asked him what if felt like to take that first breath with new lungs.  Word for word, here’s his response.  Again, Chuck Price’ own words:

“I was on a ventilator and frightened because I had never been on one before.  Waking up to find out one in your mouth and lungs and that you can’t speak is scary.  I had to communicate with family by handwritten notes. 

About 40 minutes after awakening they told me I was over breathing and the vent would have to come out.  That scared me, too.  I just knew I was going to die when it was removed and I wrote a note to my wife and my dad begging them to prevent the procedure. Of course the doctors knew best and it was withdrawn – and I didn’t die and then—-I took my first breath, the first real breath in my entire life.  Wow!  I streamed tears, I can’t remember ever taking a breath like that so I took another and filled my new lungs to the hilt.  Nothing in life had ever felt that good.  I could find no words so I just grasped my wife’s hand and cried. 

An hour after those absolutely delicious breaths they also removed the oxygen and the saturation meter they put on your finger showed it was 98-99 % which amazed everyone — the docs included.  I was in a chair and walking very soon after.”

You’ve heard the commercials on TV that pitch some amazing deal and then add, “But wait, there’s more!”  Well, there’s more to the Chuck Price story.  Not only is he rebuilding his company, establishing a foundation and setting up two scholarships he plans on running a 5K. And, remember this.  It’s only about six months since his double lung transplant.  Price talked about the 5K race.

foot race“The 5k is called the Apple Trample 5k, it’s a yearly event in a much larger event, The Apple Harvest Festival held in Martinsburg WV.  We will not only be competing but will have a booth during the race signing up as many Organ donors as humanly possible.  We will also be raising awareness for both organ awareness and Alpha 1 Anti Trypsin Deficiency.”

Thee you have it, the Chuck Price story.  If his enthusiasm doesn’t affect you then it is quite likely you are a Vulcan, you know, the pointy eared people who are totally devoid of emotion as represented by Spock on Star Trek.

God bless and keep you Chuck.  You’ve got your work cut out for you and with your attitude we know you will accomplish everything you set out to do and more.  If not, Robert Browning will be very disappointed.

-0-

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative 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.

Please view our new 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. 

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just email me bob@baronson.org and ask for a copy of “Life, Pass it on.“  This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. 

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Artificial and Bioengineered Organs Can End the Shortage


There are over 117,000 people on the U.S. Transplant list and hundreds of thousands more around the world.  The shortage of transplantable human organs is severe everywhere and it is unlikely the supply will ever even come close to the demand.  To depend on organ donation to save the lives of those who need organs is just plain unrealistic, that’s why we must devote as much time, energy and money as we can to develop alternatives to human organs…and there are many.

In the coming weeks, Bob’s Newheart will explore the alternatives to human organ donation and how soon they might be available.  There is no end to the number of ideas  scientists, engineers and researchers have but it takes time to sort through them, find the money for further research and then send each through some kind of trial.  The time from concept to practical use is usually quite long but there are many alternatives already in the pipeline.   Below you’ll find just a few and we will expand on them in weeks to come.

A Heart Without a Pulse

Heart transplantAs many as five million Americans suffer some form of heart failure, but only about 2,000 hearts a year become available for transplant. The obvious solution to that scarcity is to build an artificial heart, and how hard could that be? The heart’s just a pump, after all, and people have been making pumps since the Mesopotamians invented the shadoof to raise river water 3,000 years before the birth of Christ.

To understand why they still haven’t succeeded, pick up a two-pound barbell and start curling it. Two pounds: nothing. But see how long you can keep it up. Twenty minutes? An hour? Two? Your heart does that all day and all night—35 million beats a year—for as long as you live, without ever taking a rest. Manufacturing a metal and plastic heart capable of beating that way for more than about 18 months has so far proved impossible.  But, now, there’s the possibility of a continuous flow artificial heart and it’s working well in experiments.

Growing Organs in a lab

In June 2011, an Eritrean man entered an operating theater with a cancer-ridden windpipe, People had received windpipe transplants before, but this one was different. His was the first organ of its kind to be completely grown in a lab using the patient’s own cells.

The windpipe is one of the latest successes in the ongoing quest to grow artificial organs in a lab. The goal is deceptively simple: build bespoke organs for individual patients by sculpting them from living flesh on demand. No-one will have to wait on lengthy transplant lists for donor organs and no-one will have to take powerful and debilitating drugs to prevent their immune systems from rejecting new body parts.

Scaffolds for Tissue Repair energy pulsar

Researchers are making use of advances in knowledge of stem cells, basic cells that can be transformed into types that are specific to tissues like liver or lung. They are learning more about what they call scaffolds, compounds that act like mortar to hold cells in their proper place and that also play a major role in how cells are recruited for tissue repair.

Tissue engineers caution that the work they are doing is experimental and costly, and that the creation of complex organs is still a long way off. But they are increasingly optimistic about the possibilities.

Bioartificial Liver

Boston company HepaLife is working on a “bioartificial” liver using a proprietary line of liver stem cells. Once the patient’s blood is separated into plasma and blood cells, a external bioreactor unit with those stem cells inside can reduce levels of toxic ammonia by 75% in less than a day.

Bioartificial Hand

Smarenergy coming from a handtHand is a bioadaptive hand that can actually feel. Its 40 sensors communicate back and forth directly with the brain using nerve endings in the arm. The hand sends its sensory input to the brain, and the brain sends instructions for movement to the hand. The result? It can pick up a plastic water bottle without crushing it, or pour a drink without spills.

BioLung

MC3 BioLung is a soda-can-shaped implantable device that uses the heart’s pumping power to move blood through its filters. It’s designed to work alongside a natural lung, exchanging oxygen from the air with carbon dioxide from the bloodstream. So far, it’s been tried on sheep, where six of the eight animals on the BioLung machine survived for five days. Human trials are expected within the next couple of years.

3D Organ Printing

Organ printing, or the process of engineering tissue via 3D printing, possesses revolutionary potential for organ transplants.

The creation process of artificial tissue is a complex and expensive process. In order to build 3D structures such as a kidney or lung, a printer is used to assemble cells into whichever shape is wanted.

For this to happen, the printer creates a sheet of bio-paper which is cell-friendly. Afterwards, it prints out the living cell clusters onto the paper. After the clusters are placed close to one another, the cells naturally self-organize and morph into more complex tissue structures. The whole process is then repeated to add multiple layers with each layer separated by a thin piece of bio-paper. Eventually, the bio-paper dissolves and all of the layers become one.

Using the patient’s own cells as a catalyst, artificial organs may soon become mainstream practice among treatment centers worldwide. As the health of the nation delves down to record negatives, organ printing may be the establishment’s answer to a number of preventable conditions.

The above alternatives to human organs are but the tip of the iceberg.  Medical science and technology are on the verge of incredible breakhroughs  that will extend life and, at some point, end the need for human organ donation, anti-rejection drugs and maybe even invasive surgery. 

There is no way human organ donation will ever be able to meet the demand for organs.  Even if donation were mandatory there likely would not be enough healthy organs to be able to provide one for everyone who needs one.  That’s why Facebook’s Organ Transplant Initiative and Bob’s Newheart strongly supports more government and private investment in developing mechanical organs, bio-mechanical organs, organ re-generation, organ cloning and other technologies like 3D printing. 

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

 Espanol

Bob Aronson Newheart de Bob es un receptor de trasplante cardiaco 2007, el fundador de Facebook, casi 2.500 Iniciativa miembro de Trasplante de Órganos y el autor de la mayoría de los blogs de donación / trasplante.

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

Por favor vea nuestro video “Gracias desde el fondo de mi corazón Donante” en http://www.organti.org Este video fue producido para promover la donación de órganos por lo que es libre y no se necesita permiso para su uso.

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

A DAY IN THE LIFE OF A LIVER TRANSPLANT TEAM


Most of us have little contact with our transplant teams.  We meet the surgeon and perhaps a coordinator but very few others and once the transplant surgery is over, we are generally turned over to other specialists to follow our recovery.

Transplant teams are in the life saving business and while it is a hectic life it can be intensely rewarding.  You might have wondered exactly what a transplant team does.  Well, there’s not enough space or time here to go into great detail but I found this account of one day in the life of a transplant team fascinating.  I hope you do, too.

A DAY IN THE LIFE OF A LIVER TRANSPLANT TEAM

BY MARY ANN LITTELL

http://www.umdnj.edu/umcweb/marketing_and_communications/publications/umdnj_magazine/spring-2012/034.html

At age 57, Morristown resident Dagoberto Alvarado looked much older, a result of the devastating illness he’d been battling. It left him pale and weak, vomiting and losing weight. In February he was diagnosed with advanced cirrhosis. His physician advised him to go straight to the liver transplant center at University Hospital (UH): “They will save your life.”

At UH, Alvarado was evaluated and put on the liver transplant list. On March 10, he received a new liver in a grueling 12-hour operation. The next morning, his wife was amazed to find him sitting up in his hospital bed, eating a light breakfast. “I couldn’t believe the transformation in my husband — in less than a day,” she said.

“There are only two liver transplant programs in New Jersey. We are the first and the largest,” says Baburao Koneru, MD, chief of liver transplant and hepatobiliary surgery at UH and professor of surgery at New Jersey Medical School (NJMS). He launched the program in 1989 and that year, 15 transplants were performed. Since then, Koneru and his team have transplanted more than 1,000 livers, currently averaging 45 to 50 transplants a year. One-quarter of these patients have liver cancer. Other major reasons for liver transplantation include hepatitis C, alcoholic cirrhosis, primary sclerosing cholangitis, autoimmune hepatitis, primary biliary cirrhosis, Wilson’s disease and other serious disorders. The team also performs approximately 150 major liver operations annually.

The program is organized around a multidisciplinary team that includes surgeons, hepatologists, physician assistants, social workers, a psychiatrist with expertise in transplant issues, and financial coordinators to help navigate the maze of payment and reimbursement. Nurse coordinators (pre- and post-op) serve as the liaison between the transplant team and patients, overseeing the logistics of surgery and recovery.

A typical day with the medical/surgical team includes much more than surgery. This group is all about sharing knowledge and technical skills with residents, fellows, medical students, nurses, physical therapists, nutritionists, pharmacists and other hospital colleagues, on rounds and at weekly meetings and conferences. “There are many key players,” says Koneru. “Teamwork is what makes this program so successful.”

8:00 am

The day begins early with a radiology conference where the team evaluates the X-rays of many patients, identifying those who might benefit from a clinical trial or liver transplant. Patients are referred to the UH program from throughout the state. “We’re known for our excellent outcomes,” says Koneru.

9:45 am

Above left: Samanta and Koneru on rounds, which are attended by residents, medical students, social workers, nurses, pharmacists, physical therapists, dietitians and others. Above right: Koneru discusses patient histories with Michelle Wilkins, MD (left), NJMS’09, an intern at Robert Wood Johnson Medical School; and UH hepatology fellow Eleazer Yousefzaden, MD.

11:45

The team checks on Dagoberto Alvarado, now three days post-transplant. Dramatically improved, he’ll soon be heading home. Patients can wait for months on the transplant list — or in the case of Alvarado, be fortunate enough to secure a liver within a few weeks. “He might not have made it otherwise,” says his wife. The length of time a patient spends on the waiting list depends on many factors, among them the severity of their illness and the availability of donated organs.

1:30 pm

NJMS students may take clinical electives in a variety of specialty areas, including hepatology. This offers opportunities for collaborative learning from those in other health professions. It’s also a chance for students to ‘try out’ a specialty and experience first-hand what it’s like to be an active member of a medical team. Left: Cynthia Quainoo, MD, transplant hepatology fellow, discusses patient management with Samanta.

2:05 pm

Above Left: Patient Jamie Feireria was admitted to UH with cirrhosis of the liver and a severe rash (a common complication of liver disease). “I gained 30 pounds in one month,” she says. The physicians order tests to find out why. Above Right: Arun Samanta, MD, is professor of medicine at NJMS and chief of hepatology and transplant medicine at UH. The UH liver unit accommodates patients who are potential transplant candidates; those who are listed for transplant and await a donor organ; and those with severe liver disease — for example, acute liver failure, metabolic liver disease, advanced liver disease complicated with acute kidney failure, or drug-induced liver injury — who require care but do not need a transplant.

2:35 pm

Patient Alita Cruz has hepatitis C and has been on the transplant list for four weeks. She was admitted to UH when a liver became available, but unfortunately, the organ wasn’t in transplantable condition. Her wait for a donor liver continues.
FRONT ROW, LEFT TO RIGHT : GEORGE MAZPULE, MD, SURGICAL RESIDENT; BABURAO KONERU,MD; ARUN SAMANTA, MD.

MIDDLE ROW: ELISABETE DASILVA, PHYSICIAN ASSISTANT; EDITH MENCHAVEZ, RN, NURSE COORDINATOR; MARIA DEALMEIDA, FINANCIAL COORDINATOR; VALERIE BROOKS, SECRETARY; HELEN EDUJARDIN, PROGRAM ADMINISTRATOR; MALIHA AHMAD, MD, ASSISTANT PROFESSOR OF MEDICINE; CONNIE MUNOZ, PATIENT NAVIGATOR/REFERRALS COORDINATOR; ESTHER CALADO-ALIGMAYO, RN, NURSE COORDINATOR; THOMAS LYNCH, MD, SURGICAL RESIDENT; MARLENE ANDRADE, MEDICAL ASSISTANT; FELMA IZAR, FINANCIAL COORDINATOR; ADITI PATEL, PHYSICIAN ASSISTANT; DOROTHY O’HARE, RN, NURSE COORDINATOR; MAUREEN HESTER, RN, NURSE COORDINATOR ;ELOISA LAUDATO-HUFALAR, RN, NURSE COORDINATOR; IONA MONTEIRO, MD, ASSOCIATE PROFESSOR OF PEDIATRIC GASTROENTEROLOGY.

BACK ROW: GEOFFREY KOIZUMI, DATA SYSTEMS MANAGER; JACQUELINE O’BRYANT-TRAVIS, PROGRAM ASSISTANT; FONDA STEWART, MEDICAL ASSISTANT; LATONIA BALDWIN, MEDICAL ASSISTANT ;CARLO OPONT, PHYSICIAN ASSISTANT; ADRIAN FISHER, MD, ASSOCIATE PROFESSOR/TRANSPLANT SURGEON; AND DORIAN WILSON, MD, ASSOCIATE PROFESSOR/TRANSPLANT SURGEON.

3:20 pm

Transplanting an organ is not unlike staging a large, complex opera. There is so much drama — some of it life and death. The starring players — physicians, patients, nurses and myriad support staff — often face obstacles and conflict. There’s the quest for a ‘holy grail’— in this case, a healthy liver.

The group of people pictured above makes it happen at University Hospital. “Most patients are referred by their physicians, but some people find us by themselves,” says UH nurse coordinator Maureen Hester. “When they come here, they’re frightened. They expect to go on the transplant list right away, but it doesn’t work that way.”

Patients are first examined to determine whether they are transplant candidates. The workup includes evaluation by transplant hepatologists and surgeons, cardiologists, social workers and dietitians. A psychiatric workup includes support for patients and evaluation for drug and alcohol abuse – both primary factors in hepatitis C infection. Transplant candidates with alcohol or drug-related illness must agree to give up these substances completely. Their names will not go on the waiting list until they complete six months of sobriety.

Those who are accepted into the program go on a national waiting list until a liver becomes available. Statistical formulas are used to predict which patients’ are in the greatest need of a new liver and they are placed higher on the list. Patients’ placement on the list changes as their health status changes.

The wait for a liver can be days, weeks, or months. It’s part of the drama. When the call finally comes that a liver is available, the patient and the team are ready. And in the best-case scenario, there is a happy ending,

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Transplants — With An Emphasis on Recovery (by organ)


The organs most commonly transplanted are Heart, Kidneys, Liver, Pancreas, Lungs and Intestines.  The entire process of organ transplantation is traumatic, from the time you are diagnosed  through the evaluation process, your time on the waiting list and finally recovery from the surgery.   If you are told you are going to need an organ transplant you are also being told that your life is about to change dramatically.

THE DIAGNOSIS

When you are diagnosed as needing a transplant you are being told that there are no good recovery alternatives for your disease.  It is likely that most of them have been tried.  While the physician is unlikely to tell you that your days are numbered you will probably hear that you that you have an end-stage disease.  That’s Dr. talk for, “You are dying.”  Getting that news is a traumatic event and you may need to discuss it with someone or even get professional help.

In order for your medical team to determine if you need a transplant you will have to undergo a thorough physical and mental evaluation.  Before they do that, though, there is a critical questions that must be answered,  “Do you have the financial resources to pay for a transplant should they find that you need one?”  If you cannot answer that question affirmatively a hospital social worker might be able to help but your chances of getting a transplant will be delayed until that single question gets a positive answer.  Once answered, though, the evaluation process begins and you will embark on an unprecedented medical voyage.   Among other things they have to determine  that you are a good surgical risk.

In addition to assessing  your physical condition, the team will consider  your attitude and psychological state among other factors. Donated organs are a rare commodity, so doctors don’t want to proceed unless they are sure that a patient is physically and mentally prepared for both the procedure and for life following it.  Your transplant team will also want to ensure that you have a competent caregiver,  someone you can depend on to watch over your recovery.  This is a key element of the process, you simply must be able to show that you have a caregiver who will make a significant investment of time as you regain your strength so you can return to a “normal” life. 

And…a caution if you smoke or are addicted to either drugs or alcohol chances are you will be told you must quit or there will be no transplant.  Generally you have to show that you have abstained from the two for at least six months.   Again, organs are precious and there aren’t very many available so medical facilities want transplant candidates that can prove they will take good care of them.

When the tests are complete and show clear medical evidence that you need an organ transplant, your physician will present your case to the medical center transplant committee.  If they approve, you will be added to the national transplant list at the United Network for Organ sharing (UNOS).  Then the wait begins and that, too, is traumatic.  Some people never get an organ, others wait a long time and some, like me are luckier and have a short wait.  Mine was only thirteen days but it took twelve years after my diagnosis before I was sick enough to get on the list.

THE SURGERY

Once the transplant committee approves you for the procedure you will be placed on the national transplant list and then you wait…you wait for “THE CALL.”    When it comes  you will be asked to get to your medical center rather quickly where they likely will perform additional tests in preparation for the surgery.  Prep includes giving you something that will “relax” you.  In reality it will knock you out.

You will awaken in intensive care, surrounded by beeping, chirping monitors, IV bags hanging from chrome stands, electrodes attached to your body and perhaps a ventilator.  Awakening from the surgery can be scary, because you may not be fully aware of what happened or where you are, and because of the ventilator you will be unable to talk. Most often they remove the “vent” as soon as possible.  In my case it was gone when I awakened.

Usually the medical staff will try to get you on your feet and moving around as soon as possible but depending on the transplant and your condition hospital stays can range from a week or so to a much longer period of time.  Then there is the recovery process and having gone through it this blogger strongly advises you to do everything your physicians suggest because that’s what will keep you alive.  

As I mentioned earlier, the organs most commonly transplanted are Heart, Kidneys, Liver, Pancreas, Lungs and Intestines.  Recovery from these surgeries is sometimes difficult and for a while following surgery you will make many return trips to see your coordinator and physician.

THE RECOVERY

Critical Information You Need To know

Below I have listed the recovery process for all six of the organ transplants I listed earlier.  I chose to use a different transplant center for each organ to show that while centers may differ a little in the recovery process the bottom line is always the same and that is to ensure that the patient has a sound recovery and can then lead a healthy and satisfying life.  

Kidney Transplant Recovery

Cleveland Clinic

http://tinyurl.com/bh9jp4o  

Frequently Asked Questions

Now that I feel better, when can I return to my regular activities?

You can resume your previous activities as soon as you feel better — and you might even feel good enough to add some new activities. A daily exercise program will continue to improve your health and help you maintain a positive attitude.

You will not injure yourself or your new kidney if you follow some of these general guidelines:

  • Avoid lifting heavy objects and strenuous physical work for at least six to eight weeks following surgery. It is important that you also do not lift anything heavier than 20 pounds for two to three months, and nothing heavier than 40 pounds for four to six months from the date of your surgery.
  • Avoid driving for at least six weeks following surgery. Plan ahead so a friend or family member can help out during this time. When you are in a moving vehicle, always use your seat belt.
  • Exercise is encouraged, and we recommend beginning with stretching exercises and walking. Other excellent exercises include jogging, hiking, bicycling, tennis, golf, swimming, and aerobics. All of these can help you regain your strength and may be started gradually after your incision has healed.
  • As a general rule, rough contact sports should be avoided since they might cause injury to your transplanted kidney. If you have doubts about any activity, please ask the Transplant Team.

When will I be able to return to work?

Many kidney transplant patients are able to return to work within a few months following a successful surgery. However, various aspects of the recovery process can effect the timing of your return.

You will need to discuss returning to your job with the Transplant Team. When the time approaches, a “return to work” letter will provided. This will let your employer know when you may begin working and what limitations, if any, you have.

How soon can I take a vacation?

You may travel as soon as you are feeling better, but always let the Transplant Team know when you plan to go and provide a phone number where you can be reached. By remembering these traveling tips, your vacation will be worry free:

  • Always take all of your medicine with you and make sure you have enough medicine to last throughout your trip.
  • If you are traveling by plane, carry your medicine with you. Never check them with your luggage.
  • Make sure you have your Transplant Center’s phone number.
  • Check to see if there is a medical laboratory or transplant center nearby where you can have your blood work completed. This lab will need to report your results to your Transplant office.

Heart Transplant Recovery

Mayo Clinic

http://tinyurl.com/bf6692s

Because I got a heart transplant at the Mayo Clinic in Jacksonville Florida in 2007 it is the one with which I am most familiar.  I was in the hospital for 9 days and experienced little discomfort other than feeling weak.

What you can expect

During the procedure
Heart transplant surgery usually takes about four hours — longer if you’ve had previous heart surgeries or if there are complications during the procedure. The surgeon will open your chest and connect you to a heart-lung machine to keep oxygen-rich blood flowing throughout your body. The diseased heart is removed, and the donor heart is sewn into place. The new heart often starts beating when blood flow is restored. Sometimes an electric shock is needed to make the donor heart beat properly.

You’ll be in pain after the surgery, which will be treated with medications. You’ll also have a ventilator to help you breathe and tubes in your chest to drain fluids from around your lungs and heart.

After the procedure
After you’ve had surgery to place your donor heart, you’ll likely remain in the hospital for a week or two, and then you’ll be closely monitored at your outpatient transplant center for about three months. While at the transplant center, you’ll have regular tests on your donor heart, including blood work, echocardiograms, electrocardiograms and heart biopsies.

There are also several long-term adjustments you’ll need to make after you’ve had your heart transplant. These include:

  • Taking immunosuppressants. These medications decrease the activity of your immune system to prevent it from attacking your donated heart. Because your immune system will most likely never get used to the new organ, you’ll take some of these medications for the rest of your life.

These medications may cause noticeable side effects. With taking some post-transplant drugs, such as corticosteroids, your face may become round and full, and you may gain weight, develop acne or facial hair, or experience stomach problems. Some of the effects are more noticeable when you first start the drug regimen, but decrease in severity later on.

Because immunosuppressants make your body more vulnerable to infection, your doctor may also prescribe antibacterial, antiviral and antifungal medications. Some drugs could worsen — or raise your risk of developing — conditions such as high blood pressure, high cholesterol, cancer or diabetes. Over time as the risk of rejection is reduced, the doses and number of anti-rejection drugs can be reduced, but you will need some immunosuppressant medications indefinitely.

  • Managing medications and therapies. After a heart transplant, taking all your medications as your doctor instructs is important. It’s a good idea to set up a daily routine for taking your medications so that you won’t forget. Keep a list of all your medications with you at all times in case you need emergency medical attention, and tell all your doctors each time you’re prescribed a new medicine.
  • Cardiac rehabilitation. After your transplant, you may find it difficult to adjust to new lifestyle changes, such as diet and exercise. Cardiac rehabilitation programs can help you adjust to these changes so that you can regain your strength and improve your quality of life.
  • Emotional support. Your new medical therapies and the stress of having a heart transplant may make you feel overwhelmed. Many people who have had a heart transplant feel this way. Talk to your doctor if you’re feeling stressed or overwhelmed. Transplant centers often have support groups and other resources to help you manage your condition.

Lung transplant Recovery

Duke University Medical Center

http://tinyurl.com/ajp7n8h

Use these patient resources to understand steps you need to take after your lung transplant procedure at Duke.  Click on the links for full details.

Infections in a transplant patient can be quite serious, even life-threatening. Good hand washing, along with a few other practices will help prevent infection.

After lung transplant, your health will be constantly monitored to ensure that your lungs are healthy and not being rejected .

Learn what symptoms may signal infection and find out what steps to take to maintain your health and prevent infection.

After transplant, your body is more susceptible to infection. Learn how to avoid and manage common infections.

Rejection of your transplanted lung(s) can occur at any time following your surgery. Discover steps to take to avoid rejection or ways to manage your health if you do experience rejection of your new lungs.

Learn what to expect in regards to pulmonary preparation and rehabilitation before and after lung transplant.

Diet and nutrition are very important aspects of everyday care after a lung transplant. Find guidelines to keep you healthy after transplant.

Sexual activity doesn’t have to be avoided after lung transplant. Following a few simple guidelines will ensure that you stay healthy while enjoying sex.

When patients show signs that their new lungs are being rejected, we have a number of ways to combat that rejection including steroids, RATG, and Campath.

Pancreas Transplant Recovery

Vanderbilt University Medical Center

http://tinyurl.com/avkgyhe

You will be encouraged to get out of bed as soon as possible– usually the first or second day after surgery. This is an important way to prevent pneumonia. We will encourage you to walk around your room and down the hall at least three times a day. Walking increases your blood circulation, helps relieve gas pains, and helps maintain your muscle tone.

Each morning, we will draw blood to follow your progress and adjust your daily medicines. The most important blood tests to measure your kidney function are B.U.N. and CREATININE.

Another way to watch your new kidney’s progress is to accurately measure how much fluid you drink each day and how much urine you put out. At first the nurses will measure this for you. Eventually you will be taught to do this for yourself.

You will be weighed daily before breakfast. It is important to weigh at the same time each day on the same scales with the same clothes on. This is a habit you’ll need to continue after you’re sent home. Weight gain can be a sign of rejection of your new kidney.

Once you and your nurse feel you are able to care for yourself outside the hospital you will be sent home. If you live out of town you may want to stay at the Guest House Inn near Vanderbilt for a short period of time after discharge. During this time you will be coming back to Vanderbilt for outpatient evaluation two to three times per week.

Liver Transplant Recovery

University of California San Francisco

http://tinyurl.com/bxbfptz

After surgery, you will go directly to the intensive care unit (ICU), usually for one or two days. Immediately after surgery, a breathing tube will be inserted to help you breathe. In most cases the tube can be removed within 24 hours after surgery. Many monitoring lines also will be attached; these, too, will be removed as you become more stable. When you are ready to leave the ICU, you will be cared for on the 14th floor of the hospital if you’re an adult. Children are cared for on the sixth or seventh floor. Everyone recuperates from liver transplantation differently. Depending on your condition, you will be hospitalized for two to eight weeks following the transplant.

After the Hospital

After you are discharged from the hospital, you will be seen in the liver transplant clinic at least once a week for the first month. As you improve, you will be seen less often; eventually, you will be seen once a year.

If you are not from the San Francisco area, you probably will need to stay close by for the first month after discharge. After that, your doctor or a specialist near your home will provide follow-up care. Laboratory blood tests are obtained twice a week following transplantation. Gradually, the frequency of blood tests will be reduced.

You will be notified about any adjustments in your medications. Complications can occur with any surgery. Patients undergoing organ transplantation may face additional complications. The life-threatening disease that created the need for your transplant may affect the functioning of other body systems. Other risks, such as rejection, also may occur.

Some possible transplant complications and medication side effects include:

  • Hemorrhage — One function of the liver is to manufacture clotting factors. When a liver fails, the ability to produce clotting factors is impaired. To correct this problem, you will receive blood products before and after surgery. It is expected that your new liver will start working very quickly to help prevent any excessive bleeding, but it is possible that you may be returned to surgery to control the bleeding, particularly if it occurs within the first 48 hours after transplant.
  • Thrombosis — This is a serious complication that may require a second transplant. If a blood clot forms in a vessel leading to or from your liver, this may injure your new liver. You will receive special anticoagulation medication to prevent thrombosis.
  • Rejection — Your body’s defense system, the immune system, protects you from invading organisms. Unfortunately, it also views your new liver as foreign and will try to destroy it in an attempt to protect you. This is known as rejection. To prevent this from occurring, you will be given special immunosuppressive medication that must be taken for the rest of your life. Rejection can be diagnosed early by performing weekly liver biopsies during the first few weeks after liver transplant. Although rejection is common, with early diagnosis and treatment the situation can be controlled in more than 95 percent of cases.
  • Recurrent disease — Many liver diseases may come back after your transplant. Hepatitis C is the most common disease that can reoccur following a liver transplant. Your doctors will discuss this further with you.

Intestinal Transplant Recovery

Georgetown University Medical Center

http://tinyurl.com/a48grko

The Healing Process

After your small bowel transplantation, there are two challenges. First, you must manage the pain and recover. Second, you must learn to manage living and eating with a transplanted small bowel.

Will I be in pain?

Immediately following surgery, you will experience pain. We will do everything we can to make you as comfortable as possible. Most transplant patients have a significant reduction in pain several weeks after surgery. Some people continue to have some discomfort for a longer time.

Where will I spend my time in the hospital?

Immediately after surgery, you will be transferred to the intensive care unit. You will spend several days there as the Transplant Team monitors you very carefully.

After your stay in the intensive care unit, you will be transferred to the General Transplant Unit, where you will be instructed on how to assume responsibility for your everyday care. You will be encouraged to get out of bed at least three times a day and walk around your room and the halls. This increases your circulation and aids in healing.

What are the possible risks and complications?

You team is watching for the following possible complications:

  • Increased ostomy output
  • Fever
  • Nausea and/or vomiting
  • Blood in stools/ostomy output
  • Change in appetite

Please do not be scared or anxious about possible complications. Our team has many solutions for possible complications. All transplants carry risk and we will do everything we can to minimize those risks.

How long will it take to know if the new small bowel is working?

There may be a delay in the function of your transplanted small bowel. This may increase the length of your stay in the hospital as well as the risk of complications. There is also the possibility your transplanted small bowel will not function. You would be relisted in the highest priority category allowed.

What about the possible risk of infection?

Infection is always a concern following any major surgery. The Transplant Team will monitor you for signs and symptoms of an infection.

How long before I can leave the hospital?

You must remain in the local area (within two to three hours of Washington, DC) for four to six weeks post discharge for monitoring

While the information you just consumed is general in nature you will likely find that with a few modifications it is the process most transplant centers will follow.  If you have more specific information needs you should call your transplant coordinator, social worker or physician.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

The Future Of Organ Transplants — No Waiting!


Since the National Organ Transplant Act (NOTA) went into effect in 1984 we have had a shortage of transplantable organs and there doesn’t seem to be any way we will ever not have a shortage as long as we depend on altruistic donation of “natural” organs.
.
There are two ways to end the transplantable organ shortage.  One is to prevent organ damage by living healthier lives and the other is to find the means to develop and provide artificial organs which can be mechanical, biological or a combination of the two.
.
Popular Science  magazine has been around as long as I can remember and has always fascinated me with its reports on astonishing achievements in science and technology.  The information below comes from one of their issues.  Read these stories with the expectation that a future where there is no waiting for a transplant is possible.  If these reports are accurate the days of organ shortages could be numbered and we will be able to put a stop to the ever increasing number of people who die waiting for an organ transplant. .
.

Video: The Doctors Who Made the No-Pulse Heart

              By Jeremiah Zagar                  Posted 02.29.2012 at 2:04 pm                  9
       

Heart Stop Beating is a three-minute documentary film about the no-pulse, continuous-flow artificial heart, which Dan Baum writes about in our Future of Medicine issue. It tells the story of Billy Cohn & Bud Frazier, two visionary doctors from the Texas Heart Institute, who in March of 2011 successfully replaced a dying man’s heart with the device they developed, proving that life was possible without a pulse or a heart beat.

Feature

No Pulse: How Doctors Reinvented The Human Heart

      This 10,000-rpm, no-pulse artificial heart doesn’t resemble an organic heart–and might be all the better for it
              By Dan Baum                  Posted 02.29.2012 at 12:13 pm                  37 Comments
       

Meeko the calf stood nuzzling a pile of hay. He didn’t seem to have much appetite, and he looked a little bored. Every now and then, he glanced up, as though wondering why so many people with clipboards were standing around watching him.

Fourteen hours earlier, I’d watched doctors lift Meeko’s heart from his body and place it, still beating, in a plastic dish. He looked no worse for the experience, whisking away a fly with his tail as he nibbled, demonstrably alive—though above his head, a monitor showed a flatlined pulse. I held a stethoscope to his warm, fragrant flank and heard, instead of the deep lub-dub of a heartbeat, what sounded like a dentist’s drill or the underwater whine of an outboard motor. Something was keeping Meeko alive, but it was nothing like a heart.

Japanese Researchers Create a Pituitary Gland From Scratch in the Lab

              By Clay Dillow                  Posted 11.10.2011 at 11:08 am                  10 Comments
       

The thing about growing working organs in the lab is that the whole enterprise is completely mind-blowing. Yet we just keep doing it, and so we keep blowing minds. The latest: a team of researchers at Japan’s RIKEN Center–the same group who earlier this year engineered a mouse retina that is the most complex tissue ever engineered–have now derived a working pituitary gland from mouse stem cells.

Feature

State of the Bionic Art: The Best Replacements for My Flimsy Human Parts

      In the event of some horrible accident, which bionic parts would I want replacing my own?
              By Dan Nosowitz                  Posted 08.23.2011 at 2:00 pm                  5 Comments
       

We cover biomedical science and engineering a lot, and sometimes I get to wondering: if I was rebuilding my own flimsy, flesh-based body–presumably because I’d had some ghastly dismembering, eviscerating accident–and replacing my limbs, joints, senses, and organs with the most futuristic, top-of-the-line bionics, what would I get? Would I want an artificial lower leg that sprinters use in Olympic-level races, or a motorized leg that can climb a slope as well as a natural leg? I gathered a list of 15 bionic body parts that I’d want to wear, or have installed.

Click to launch a tour of the body parts I’d want in the event of an accident.

A New Artificial Lung Can Breathe Regular Air Rather Than Purified Oxygen

              By Clay Dillow                  Posted 07.26.2011 at 5:06 pm                  10 Comments
       

Researchers in Cleveland have built an artificial lung that is so efficient it can breathe regular air rather than the pure oxygen required by current artificial lungs. The technology makes possible the idea of a man-made lung that is far more portable–and possibly implantable–for the nearly 200 million people suffering from some degree of lung disease.

Lab Builds a Fully Functioning Artificial Small Intestine

              By Rebecca Boyle                  Posted 07.06.2011 at 11:56 am                  5 Comments
       

California researchers have created a tissue-engineered small-scale small intestine in mice, a breakthrough for regenerative medicine and a step toward growing new intestines for humans. The process re-creates all the layers of cells that make up a functioning intestine.

Diabetes Researchers Report New Steps Towards the First Artificial Pancreas

              By Rebecca Boyle                  Posted 06.27.2011 at 1:43 pm                  2 Comments
       

Private companies and hospital researchers are increasingly making strides toward developing an artificial pancreas, supplanting insulin injections and pinpricks for patients with diabetes. Such a system would mimic the functions of a healthy pancreas, delivering insulin and monitoring blood sugar according to a computer’s careful calculations.

This Lung-On-A-Chip Is The First Lab-Ready Mini-Organ to Be Used in Drug Research

              By Victor Zapana                  Posted 10.08.2010 at 11:15 am                  5 Comments
       

This ersatz lung, no bigger than a multivitamin, could represent a new pharmaceutical testing method. On it, researchers have created an artificial alveolus, one of the sacs in the lungs where oxygen crosses a membrane to enter the body’s blood vessels. A polymer sheet that stands in for the membrane is in the blue strip. On one side of the sheet, blood-vessel cells mimic a capillary wall; on the other, lung-cancer cells mimic lung epithelial cells.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers

How Alcohol Can Wreck Your Body


(This report is from the U.K.  You will notice that it refers to “units.”  That’s the same as a about a half of one “shot” of alcohol in the U.S.)  http://tinyurl.com/948cvhs

From heart to liver and brain to kidneys, a night on the tiles makes demands on us that we don’t fully realise. Peta Bee reports

6pm One Unit: It’s been a long day…

BRAIN: From the first sip, alcohol is absorbed into the bloodstream and reaches the brain. Although you won’t be aware of it, there is an impairment of brain function, which deteriorates further the more you drink. Cognitive abilities that are acquired later in life, such as conduct and behaviour, are the first to go. Early on you will experience mild euphoria and loss of inhibition, as alcohol impairs regions of the brain controlling behaviour and emotion. Most vulnerable are the brain cells associated with memory, attention, sleep and coordination. Sheer lack of mass means that people who weigh less become intoxicated more quickly, and women will feel the effects faster than men. This is also because their bodies have lower levels of water.

HEART: Your pulse quickens after just one unit. Alcohol is a vasodilator – it makes the peripheral blood vessels relax to allow more blood to flow through the skin and tissues, which results in a drop in blood pressure. In order to maintain sufficient blood flow to the organs, the heart rate increases. Your breathing rate may also speed up.

8pm Five Units: Whose round is it then?

DIGESTIVE SYSTEM: The Government advises men to drink no more than three to four units a day and women no more than two to three, so after two pints of normal-strength beer (four units) or a large glass of red wine (3.5 units) we have already exceeded our healthy guidelines. The alcohol is absorbed through the stomach and small intestine and if you are not used to it, even small amounts of alcohol can irritate the stomach lining. This volume of alcohol also begins to block absorption of essential vitamins and minerals.

SKIN: Alcohol increases bloodflow to the skin, making you feel warm and look flushed. It also dehydrates, increasing the appearance of fine lines. According to Dr Nicholas Perricone, a dermatologist, even five units will lead to an unhealthy appearance for days.

11pm 10 Units: Sorry, what was your name again?

LUNGS: A small amount of alcohol speeds up the breathing rate. But at this level of intoxication, the stimulating effects of alcohol are replaced by an anaesthetic effect that acts as a depressant on the central nervous system. The heart rate lowers, as does blood pressure and respiration rates, possibly to risky levels – in extreme cases the effect could be fatal. During exhalation, the lungs excrete about 5 per cent of the alcohol you have consumed – it is this effect that forms the basis for the breathalyser test.

1am 15 Units: Let me tell you about my ex…

LIVER: Alcohol is metabolised in the liver and excessive alcohol use can lead to acute and chronic liver disease. As the liver breaks down alcohol, by-products such as acetaldehyde are formed, some of which are more toxic to the body than alcohol itself. It is these that can eventually attack the liver and cause cirrhosis. A heavy night of drinking upsets both the delicate balance of enzymes in the liver and fat metabolism. Over time, this can lead to the development of fatty globules that cause the organ to swell. It is generally accepted that drinking more than seven units (men) and five units (women) a day will raise the risk of liver cirrhosis.

3am 20 Units: Where am I? I need to lie down

HEART: More than 35 units a week, or a large number in one sitting, can cause ‘holiday heart syndrome’. This is atrial fibrillation – a rapid, irregular heartbeat that happens when the heart’s upper chambers contract too quickly. As a result, the heartbeat is less effective at pumping blood from the heart, and blood may pool and form clots. These can travel to the brain and cause a stroke. Atrial fibrillation gives a person nearly a fivefold increased risk of stroke. The effect is temporary, provided heavy drinking is stopped.

BLOOD: By this stage, alcohol has been carried to all parts of the body, including the brain, where it dissolves into the water inside cells. The effect of alcohol on the body is similar to that of an anaesthetic – by this stage, inhibitions are lost and feelings of aggression will surge.

The morning after: Can you please just shut up…

BRAIN: Alcohol dehydrates virtually every part of the body, and is also a neurotoxin that causes brain cells to become damaged and swell. This causes the hangover and, combined with low blood-sugar levels, can leave you feeling awful. Cognitive abilities such as concentration, coordination and memory may be affected for several days.

DIGESTION: Generally, it takes as many hours as the number of drinks you have consumed to burn up all the alcohol. Feelings of nausea result from dehydration, which also causes your thumping headache.

KIDNEYS: Alcohol promotes the making of urine in excess of the volume you have drunk and this can cause dehydration unless extra fluid is taken. Alcohol causes no damage or harm to the kidneys in the short term, but your kidneys will be working hard.

One year on: Where did it all go wrong?

REPRODUCTIVE ORGANS: Heavy drinking causes a drop in testosterone levels in men, and causes testicular shrinkage and impotence. In females, menstrual cycles can be disrupted and fertility is affected. Studies have shown that women who drink up to five units of alcohol a week are twice as likely to conceive as those who drink 10 or more. It is thought it may affect the ability of the fertilised egg to implant.

BRAIN: Over time, alcohol can cause permanent damage to the connection between nerve cells. As it is a depressant, alcohol can trigger episodes of depression, anxiety and lethargy.

HEART: Small amounts of alcohol (no more than a unit a day) can protect the heart, but heavy drinking leads to chronic high blood pressure and other heart irregularities.

BLOOD: Alcohol kills the oxygen-carrying red blood cells, which can lead to anaemia.

CANCER: Excessive alcohol consumption is linked to an increase in the risk of most cancers. Last week, Cancer Research UK warned how growing alcohol use is causing a steep rise in mouth cancer cases.

PANCREAS: Just a few weeks of heavy drinking can result in painful inflammation of the pancreas, known as pancreatitis. It results in a swollen abdominal area and can cause nausea and vomiting.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Hepatitis C, Peter and Ashley. A Love Story.


For the past week or so I’ve been writing about Hepatitis C, mostly in clinical terms.  Today we begin to tell the human side of the story, the side that shows how devastating this disease can be and how it can bring out the very best in people.  It is the story of a Boston couple — each has the disease.  One far more seriously than the other.

Peter and Ashley Curran are my friends as a result of Facebook and Organ Transplant Initiative .  They are two of the dearest people I know not only because of how much they love each other but also because they are friends to all who are suffering from Hepatitis C, their caregivers and to everyone else in the donation/transplantation community.  These are two genuine, kind and loving people who face incredible adversity on a daily basis and never ask for anything.

The story you are about to read was written by Ashley at my request about her beloved Peter.  She writes only of Peter’s disease but doesn’t even begin to touch on the many other hardships they have faced nor those they are facing on a daily basis.  Ashley and Peter don’t have much,  but they have each other and by God in my book that makes them the richest people on earth.

If ever there was a story of love and compassion and of giving yes, giving (Ash and Peter give till it hurts) it is the Curran story.  Please, if you pray, say one or two for Peter and Ashley.  God gets distracted once in a while with all that’s going on in the world so let’s give him a nudge and remind him that Peter and Ashley could use a little of his grace.  It is people like Ashley and Peter who will get left behind as our national safety net gets ragged, torn and frayed.

More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.

Let’s start with a definition.

According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.

Hepatitis C, Peter and Ashley.  A Love Story.

Written by Ashley Tenczar Curran

“You are going to need a transplant, your liver function is at about 10 percent”. I heard the words over the phone as my husband Peter and I were having our morning coffee. He had gestured for me to come over to the phone to listen in, and the words will never be extinguished from my mind.  I did not know then, in my shock and disbelief, that a shadow had fallen.

Peter and I met in 2000, a year that I was finally leaving my devastating drug addiction behind, and starting over. I had moved into a rooming house in South Boston, where Peter had been a tenant for about 7 years.  I wasn’t looking for love, especially in THIS wrong place. An overcrowded, “6 adults sharing the same bathroom” illegal “sober house” as it was advertised had enticed me because it was in good old “Southie”.

As I moved in, and was trying to carry my computer with one hand, doing a disastrous job of it, I heard a voice say “need some help?”  I realize how stupid this sounds, but I married Peter that instant.  He was 20 years older than me, and not my type at all. Laid back, calm, patient, and not overly talkative. I am the opposite.  He helped me plug in my computer, and left. I had been hit by some type of Divine thunderbolt, and I had not felt that feeling in a very long time.   We were facing insurmountable odds. He was just getting clean, tired of being “sick and tired”, and I was fresh out of a treatment program.
By all reasoning, we should have spent one week together and never seen each other again.

We should have died when we relapsed one time, several months after we met, to “try it one more time”, as if we had not destroyed out lives enough.  All I remember is waking up with a needle in my arm, and seeing Peter on the floor , with a needle in his arm.  We talked the next day, and loved each other enough to realize that we would lose each other if we used even one more time.  We finally, after some 15 years pursuing recovery, were unselfish enough to lay it down, and never return.

But the past always comes into the present, it is inevitable. I had been diagnosed with Hepatitis C, like most people I know, young and old, who have ever used a needle while doing drugs.  It is an epidemic of unimaginable proportions.
My virus was “undetectable” and remains that way to this day, 12+ years later.  Peter did not fare so well.

When we first started dating, I was amazed to listen to stories from other addicts, both active and in recovery, telling me that Peter is the kindest and most patient person they have ever met. I say this NOT for the purpose of this story, but my husband has some kind of way about him that instantly puts people at ease.  When my best friend Michelle overdosed in the room above ours, we tried to bring her back, and I wanted to kill the man who had given her the dope. Everyone who was there wanted to hang this man.   Everyone except Peter. He got the man some soda, gave him a cigarette, and sat him down to ask him what exactly had happened.

I remember the guy saying “Why are you being so nice to me?”

I have tried to model my behavior after my husband’s, being honest almost to a fault, and at the same time I am angry that I am not the one who is sick, that he , the patient and loving one has to be the one to go through the horrors of 22 medications several times a day, 3 years so far on the transplant list, (UNOS), and very little family support  (They were attentive and supportive at first, but now that the drama has settled, and they know it could be many more years before Peter gets his Gift of Life, they have gone on with their lives, and do not even invite him to family events anymore)
Peter does not get angry.

This is how I know that God will give him a transplant. This is not wishful thinking, because if you knew Peter, truly knew him, then you would know this also. He has a higher purpose, and God is not done with him yet.  He met a nurse, albeit a “disgraced” one, (me), who is 20 years younger than him, and who loved him from the first time she clamped eyes on him. He is my “Brad Pitt”, even in his weakened state.  I find I love him more , the sicker he gets.  The fight he puts up, the appointments, 4 in the past 2 weeks, and the humility he shows, the polite character he prides himself on, causing doctors and nurses to say over and over again “I wish I had 100 of HIM!”

Hepatitis C is overlooked. That is a FACT. So many young people are being diagnosed right as I type this, and the organ transplant lists, particularly the liver, are getting longer and longer. People are dying from a disease that is completely preventable, and that has a vaccination available!  Soon we will find that our young people are gravely ill, (we can see it now), and that scares me.  Peter said if he had a choice, he would give his liver transplant to a young person, as he has lived his life.

A lot of people think that “junkies” don’t deserve transplants, because “they did it to themselves!”

Well, to that I say “so cancer patients who chain smoked for years don’t deserve chemo and radiation, and costly experimental procedures because THEY “did it” to themselves?  So many diseases ARE the result of something “we have done wrong”.

The real shame is the stigma that society attaches to drug addicts. One person told me “taking pills is ONE thing, but putting HEROIN in your ARM with an IV? That is ridiculous!”   More people die from a combination of narcotic pills and another type of pill, typically a “benzo” like Valium than do from a heroin overdose (I.E. Oxycontin).

I don’t know what the future holds for my husband, or, for that matter, for me. But every day I remind him that God loves him, and I love him. We tell each other every day. Though we did that before he got sick, it resonates even louder now, because I could, in reality, be counting down the days that I get to hear his voice, and see his chest rise and fall, knowing he IS breathing, as I do so often.

Please consider being an organ donor.  There are so many people suffering like this, and putting their best foot forward to patiently wait for their turn. My husband, I believe, is the most patient “patient” that Beth Israel Hospital has ever had.

-0-

After three years on the waiting list, Peter and Ashley are considering looking for a living liver donor.  If you have an interest in helping this couple you may contact them directly on Facebook or leave a message here and I’ll make sure then get it.  Please everyone, if you pray,say one for Peter and Ashley.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Hepatitis C — What You Need to Know


More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.

Let’s start with a definition.

According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.

Hepatitis C is one of several hepatitis viruses and is generally considered to be among the most serious of these viruses. Hepatitis C is passed through contact with contaminated blood. http://www.mayoclinic.com/health/hepatitis-c/DS00097

According to the U.S. Centers For Disease Control (CDC) http://www.cdc.gov/hepatitis/c/cfaq.htm Hepatitis C is most commonly spread through the use of infected needles. Before 1992, when widespread screening of the blood supply began in the United States, Hepatitis C was also commonly spread through blood transfusions and organ transplants. Now we know that people can become infected with the Hepatitis C virus during such activities as

  • Sharing needles, syringes, or other equipment to inject drugs
  • Needlestick injuries in health care settings
  • Being born to a mother who has Hepatitis C

Less commonly, a person can also get Hepatitis C virus infection through

  • Sharing personal care items that may have come in contact with another person’s blood, such as razors or toothbrushes
  • Having sexual contact with a person infected with the Hepatitis C virus

***Note, the Executive Director at HCVets.com, Tricia Lupole, indicates that the CDC information may be incorrect. She made this comment on our Facebook page.

“HCV by sex is a risk if both partners experience trauma and exchange blood…. the only cells found is seminal fluids are dead cells…. confirmed by many microbiologist. http://www.ncbi.nlm.nih.gov/pubmed/15128350 There are 100s of studies that show this is the case but it is junk science that reins control of the message to control the funding. Lots of plans to make HCV the fall guy for bad behavior.“

In a second post she went on to say, “Yes, the CDC has quoted the same statement for about 15-20 years now. The study I posted is based on the CDC National Survey. Another sad point, last I checked. Even though we all know better the CDC says that there is not enough evidence to show tattoos are a risk factor.

AMA does not want to regulate tattoo parlors as medical procedures because they are responsible for guidance/ prevention. (The task has been given to OSHA).

Today Ms. Lupole issued this statement:

The Centers for Disease Control federal funding has decreased in recent decades, while there’s been increased demands for vaccination programs; resulting in limited resources for at-risk adults and other mandated priorities. The categorical nature of federal funding for HIV, STD, and viral hepatitis prevention limits the shifting of funds across program lines. In response to these funding woes, the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention’s (NCHHSTP) captured HCV disease and redesign public health services to fit HIV programs, instead of critical public health needs. It’s important to note that HCV disease was previously integrated into federal research that included its viral family called Flaviviridae, whose members are Yellow Fever and Dengue viruses and transmit disease through mosquitoes. The HCV genome is almost identical to Dengue virus.


NCHHSTP’s Federal mandate is an integration of existing programs with new programs, like Viral Hepatitis, developed to mirror HIV/AIDS management model based on specific risks and disease pathology. STD and Substance Abuse programs associated with the spread of HIV/AIDS received increased attention and funding, blurring the other components of these programs.

Needless to say, NCHHSTP has meet with resistance from advocates and congressional leaders, because of this effort by public health agencies to narrowly define HCV’s pathology.


Today, NCHHSTP spends half the federal resources acquired for HCV to vaccinate patients with both Hepatitis A & B vaccines. The majority of remaining resources are directed at drug and STD intervention and prevention. The STD division must qualify for its share of funding by defining HCV a sexually transmitted disease.


Despite scientific proof that HCV is not an STD, NCHHSTP promotes HCV as an STD based on a handful of studies that bring about scientific uncertainty, working against broader public health threats. Research excluded several methods by which the virus transmits to insure standard elements comply with CDC corporate agreement requirements. Thus… junk science.
Such actions suggests this poor public health response to the HCV Disease epidemic, may be the direct result of a system in disarray – seemingly captured by special interest with legal and political agendas that have negatively influenced the response. The integration approach has created disparities in access to health care and created “social labels” that have fostered discrimination, responsible for the reduction in quality of life.

The enduring legacy of “junk science” and indifference of governments, nonprofits, advocates, political parties or economic elites, have grave and global consequences given the propensity for viral transmission in provider settings as seen in current headlines.

FY 2012 Hepatitis C transmission and prevention: latest news. Massive increase of hepatitis C incidence in HIV-positive gay men in Switzerland 30 August 2012 …http://www.aidsmap.com/Hepatitis-C-transmission-and-prevention/cat/1628/

• FY 2008- No evidence of a HCV epidemic in HIV negative gay men
Dr Turner et al. Data from attendees at a London GUM clinic suggest that there is no increase in HCV infections amongst HIV negative gay men.

• FY 2007- Injection Behavior, Not Sexual Contact, Accounts for Couples’ HCV Risk NEW YORK (Reuters Health) – Injection behavior, rather than sexual contact, accounts for the clustering of HCV virus (HCV) infection in heterosexual couples, according to a report in the June 1st issue of The Journal of Infectious Diseases.

• FY 2004 No Evidence of Sexual Transmission of HCV among Monogamous Couples: Results of a 10-Year Prospective Study The risk of sexual transmission of HCV virus (HCV) infection was evaluated among 895 monogamous heterosexual partners of HCV chronically infected individuals in a long-term prospective study, which provided a follow-up period of 8,060 person-years.

Either way, CDC or not…. junk science remains junk science. Wish the outcry would focus on piercing jewelry or the reuse of razors and personal care items verses a national message about a method that is least as likely as not. This battle over CDC junk science, goes way back and is in memory of many who passed HCV on to family members, while sacrificing pleasures of the mind, body, and soul. As you can imagine, sexual transmission is a constant worry for some. Their partner may catch/transmit this deadly virus through sex, protection or not….. yet… turn right around and share razors and other items as such.  Especially the economically depressed populations.”

Most recently, though, we’ve identified another way people may become infected and through no fault of their own. Recently in a New Hampshire hospital an employee who was a drug addict and who also had Hepatitis C was found to be injecting himself with filled syringes meant for patients, refilling the syringes with a harmless liquid non-pain killer and then replacing the needles and syringes on the tray to be used again. Below is one of the original stories on this 2012 incident.

‘Serial infector’ accused of spreading hepatitis at NH hospital

U.S. Attorney’s Office | ASSOCIATED PRESS

CONCORD, N.H. — Authorities in at least six states are investigating whether a traveling hospital technician accused of infecting 30 people with hepatitis C in New Hampshire also exposed earlier patients to the liver-destroying disease.

David Kwiatkowski, a former technician at Exeter Hospital, was arrested Thursday morning at a Massachusetts hospital where he was receiving treatment. Once he is well enough to be released, he will be transferred to New Hampshire to face federal drug charges, said U.S. Attorney John Kacavas, who called Kwiatkowski, 33, a “serial infector” who worked in at least half a dozen states.

Authorities believe Kwiatkowski stole drugs from a hospital operating room in another state, but they declined to name any of the other states, saying only that they are not clustered in one part of the country. They would not say in what hospital Kwiatkowski was being treated at so he couldn’t be contacted for comment.

This story brought new attention to hospital policies on infection control, narcotics control and patient safety and has had ripple effects across the nation if not around the world.

So…the next question is, how serious is hepatitis C? Chronic Hepatitis C is a serious disease that can result in long-term health problems, including liver damage, liver failure, liver cancer, or even death. It is the leading cause of cirrhosis and liver cancer and the most common reason for liver transplantation in the United States. Approximately 15,000 people die every year from Hepatitis C related liver disease.

What are the long-term effects of Hepatitis C?

Of every 100 people infected with the Hepatitis C virus, about

  • 75–85 people will develop chronic Hepatitis C virus infection; of those,
    • 60–70 people will go on to develop chronic liver disease
    • 5–20 people will go on to develop cirrhosis over a period of 20–30 years
    • 1–5 people will die from cirrhosis or liver cancer

The CDC strongly suggests that all baby boomers born since 1945 should get tested for Hepatitis C. http://tinyurl.com/8tg28x6Baby boomers account for 2 million of the 3.2 million Americans infected with the blood-borne liver-destroying virus. CDC officials believe the new measure could lead 800,000 more boomers to get treatment and could save more than 120,000 lives.

“The CDC views hepatitis C as an unrecognized health crisis for the country, and we believe the time is now for a bold response,” said Dr. John W. Ward, the CDC’s hepatitis chief.

Several developments drove the CDC’s push for wider testing, he said. Recent data has shown that from 1999 and 2007, there was a 50 percent increase in the number of Americans dying from hepatitis C-related diseases. Also, two drugs hit the market last year that promise to cure many more people than was previously possible.

What are the Symptoms of Hepatitis C?

Here’s what WEBMD says. http://www.webmd.com/hepatitis/hepc-guide/hepatitis-c-symptoms

Most people who are infected with hepatitis C-even people who have been infected for a while-usually don’t have symptoms.

If symptoms do develop, they may include:

  • Fatigue.
  • Joint pain.
  • Belly pain.
  • Itchy skin.
  • Sore muscles.
  • Dark urine.
  • Jaundice, a condition in which the skin and the whites of the eyes look yellow.

A hepatitis C infection can cause damage to your liver (cirrhosis). If you develop cirrhosis, you may have:

  • Redness on the palms of your hands caused by expanded small blood vessels.
  • Clusters of blood vessels just below the skin that look like tiny red spiders and usually appear on your chest, shoulders, and face.
  • Swelling of your belly, legs, and feet.
  • Shrinking of the muscles.
  • Bleeding from enlarged veins in your digestive tract, which is called variceal bleeding.
  • Damage to your brain and nervous system, which is called encephalopathy. This damage can cause symptoms such as confusion and memory and concentration problems.

What Treatment is Available?

So if you have Hepatitis C, then what? There are a number of options and there might even be a cure before too long. Standard state of the art treatment today for Hepatitis C is with Peginterferon and Ribavirin which achieves a “sustained response” up to 54% of people, which means that the virus has been eliminated from their blood after stopping treatment. People with hepatitis C types 2 and 3 have sustained response rates of about 80%; people with type 1 have rates of up to 50%.

While hepatitis C treatment has come a long way, there are still drawbacks. For a person who’s newly diagnosed, a 54% cure rate may not sound great. After all, it means that about one out of two people won’t respond to treatment.

Also, hepatitis C treatment is less effective in some populations. For reasons that no one understands yet, African-Americans are less likely to benefit from treatment. And the treatments may not be safe for people with other medical conditions — such as kidney failure, heart disease, or pregnancy. Interferon can also be expensive; according to the American Academy of Family Physicians, it can cost $6,000 per year. http://www.medicinenet.com/script/main/art.asp?articlekey=52451

It is important to note again, that while liver transplants can be very helpful to Hepatitis C patients, the procedure is not a cure but rather a delaying action and an effective one. There is some evidence that a transplant from a living donor to a patient who has been receiving the Interferon treatment could represent a cure. http://www.youtube.com/watch?v=3kOElXz0vVg

A Possible Medicinal Cure

Gilead Science is performing multiple studies to test an experimental drug, but the trial that is possibly the most intriguing looks at a combination therapy that rolls two medicines into a single pill. Gilead hopes to advance tests of its lead hepatitis drug GS-7977 in a combination with another company medicine, GS-5885.

Bristol Myers Squibb had a promising drug but clinical trials resulted in some negative results so the company has sent the project back to the drawing board. http://www.nytimes.com/2012/08/24/business/bristol-myers-ends-work-on-hepatitis-c-drug.html?_r=2&

Finally, Gilead Sciences, mentioned earlier, has a drug that combined with another from Bristol Myers Squibb could be a cure, at least clinical trials seem to offer that indication but the two companies, according to Hepatitis C activist Margaret Dudley can’t seem to cooperate. She is circulating a petition to get the “cure” on the market. http://hepc-cured.com/

October is National Liver Awareness month. We hope you have found these blogs helpful and offer these links for further information.

http://www.liverfoundation.org/

http://www.nlfindia.com/index.asp

http://www.mayoclinic.com/health/liver-problems/DS01133

http://tinyurl.com/92bjlup U.S. Government Link

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Hepatitis C — No One is Immune Everyone is Affected


More people in the United States now die from Hepatitis C each year than from AIDS  according to a new report from the Centers for Disease Control and Prevention.   More than 3.2 million Americans are currently infected with Hepatitis C and the really bad news is that most people who have it don’t’ know it.

In coming days I will publish more information and heart wrenching stories about Hep C and the patients it affects, the lives it wrecks and what it costs our society in both human lives and dollars…it is astounding.

Hep C is a disease of the liver that society likes to keep in the shadows because of some of the ways in which it is contracted, but we cannot begin to deal with a disease if it is kept secret and treated as though it was sinful and dirty.  It isn’t.  The people aren’t and they need our help and our compassion.

Hepatitis C can be treated and there are some exciting possibilities on the horizon but now there is no available cure,  not even a liver transplant is a cure because Hepatitis C is systemic.

To get us started on the road to understanding please view this video.  It says more in a few minutes than anything I can write at this moment.  Please share the video with others and then watch this space for more.  I fully intend to say a lot more on the subject of this disease that affects so many of my friends.

Thank you  http://www.youtube.com/watch?v=J4TCo-qVoKk

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Bristol Myers /Gilead Science — Profits Ahead of Life


I have a good news, bad news story to report today.  It is about a combination of life saving drugs that may never see the light of day because the two companies that make them can’t or won’t cooperate with one another.  One woman, Margaret Dudley of San Antonio Texas is doing something about it.  More about her, later.

This is about a combination of drugs from Bristol Myers Squib and Gilead Science that could be a cure for Hepatitis C which affects nearly 200 million people worldwide.  It is a viral infection that can lead to liver failure and death.  End-stage liver disease (cirrhosis) due to chronic hepatitis C has become the leading indication for liver transplantation in the United States.

First the good news, this really could be a cure.   A combination of Gilead’s GS-7977 and Daclatasvir from Bristol Myers Squib shows great promise as a cure according to some limited studies.  These drugs are pretty effective on their own but apparently when combined they could be a cure…yes cure.  I know, cure is pretty strong language in the medical world but it is the medical world that is using the term.

Now the bad news.  The two companies are not cooperating with one another, they can’t seem to agree on anything other than to disagree and in the meantime people are getting sicker and dying.  This is the classic battle over which company will make the most money when the two drugs are combined.

Here’s an Excerpt-The Street

Gilead, Bristol Put Profits Ahead of Best Care for Hep C Patients

“The new Hep C therapy at issue here combines Bristol’s Daclatasvir with Gilead’s GS-7977. Each is a single pill administered once a day. The results from this new therapy are nothing short of spectacular — an early cure rate of 100% for genotype 1 patients and 91% of genotype 2/3 patients, according to data from a mid-stage study announced Thursday at the European Association for the Study of Liver Disease (EASL) meeting.

A 100% cure rate for genotype 1 patients! Obviously, results can’t get better than that.

You’d think there’d be a rush to move the combination regimen of Daclatasvir and GS-7977 into a larger, confirmatory phase III trial, but you’d be mistaken. Amazingly, this most promising new treatment for hepatitis C patients may actually be discontinued because Bristol and Gilead can’t work together.

Good luck understanding why Bristol and Gilead can’t come together to help Hep C patients. The companies can’t even agree on the fact that the two companies are not agreeing”.

This is an incredibly important story and one that needs wide circulation in hopes of forcing these two companies to cooperate for the sake of saving lives instead of who can provide the greatest return on investment.  As mentioned earlier, Hep C affects about 200 million people worldwide.

Typically, to become infected with hepatitis C virus, the blood of an infected person enters the body of someone who is not infected. The most common way involves sharing needles or other equipment used to inject drugs. This kind of Hepatitis C infection is in the news now because an infected healthcare worker at a hospital in New Hampshire used needles on himself then left them for others to use.  Thousands may have been infected as a result and that investigation continues.

It is also possible, but less likely to become infected with shared use of personal care items such as toothbrushes and razors. Infection is also possible through sexual contact. Hepatitis C is not spread by casual contact, kissing, coughing, sneezing, sharing utensils, or breastfeeding.

Other people with greater risk of infection include:

  • People with tattoos or body piercing done with non-sterile equipment.
  • People who received an organ transplant or blood transfusion before July 1992.
  • People with clotting problems who took blood products prior to 1987.
  • People receiving hemodialysis or who have a history of hemodialysis for kidney failure.
  • People with HIV infection.

Since July 1992, all blood and organ donations in the U.S. are screened for the hepatitis C virus. According to the CDC, the number of hepatitis C infections declined by 90% from 1994 to 2006, partially as a result of this.

A diagnosis of hepatitis C infection doesn’t necessarily mean you need treatment. If you have only slight liver abnormalities, you may not need treatment, because your risk of future liver problems is very low. Your doctor may recommend follow-up blood tests to monitor for liver problems.

Hep C symptoms may include:

  • Fatigue
  • Upset stomach and diminished appetite
  • Joint and muscle pain

Also, patients may experience symptoms related to liver cirrhosis, such as:

  • Jaundice, which is a yellowing of the skin and eyes
  • Urine being a dark yellow color
  • An increased tendency to bleed or bruise

Treatment of chronic hepatitis C varies depending on the individual. A person with chronic hepatitis C may not need or benefit from treatment. Some people may not be able to tolerate treatment because of side effects.

Currently, the FDA has approved the following treatments for hepatitis C:

  • Pegylated interferon alfa-2a
  • Pegylated interferon alfa-2b
  • Ribavirin
  • Standard interferon alfa
  • Incivek
  • Victrelis

Common side effects of interferons include fatigue, muscle pain, headache, nausea, vomiting, weight loss, and depression, and changes to your blood cell counts. Side effects of ribavirin include anemia, skin rash, fatigue, and nose/sinus congestion so a new treatment with minimal side effects and greater effectiveness would be cheered wildly.

Liver transplant
if your liver has been severely damaged, a liver transplant may be an option. During a liver transplant, the surgeon removes your damaged liver and replaces it with a healthy liver. Most transplanted livers come from deceased donors, though a small number come from living donors who donate a portion of their livers.

For people with hepatitis C infection, a liver transplant is not a cure. Treatment with antiviral medications usually continues after a liver transplant, since hepatitis C infection is likely to recur in the new liver.

Now to our hero 61 year old Margaret Dudley of San Antonio, Texas.  Margaret thinks this situation is intolerable and she has launched a petition drive to encourage the two companies to work together to save lives.

Last fall, she was tested for hepatitis C she believes she contracted from some earlier tattoos.  “I had no idea,” Dudley said. “I had no reason to think it would come back positive, but it did.”

Then she found out about Bristol Myers Squib and Gilead.  “That’s basically what me and millions of others have been waiting for,” Dudley commented.  We’re asking these companies put best patient health before profits.”

She has several thousand on her online petition so far and says public pressure may spark the pharmaceutical companies to keep going with clinical trials.  Dudley’s goal is to gather 100,000 signatures by July 28, 2012, which is World Hepatitis Day.  We encourage you to sign the petition.  Just go to: http://tinyurl.com/cow2uwt  We just can’t let profitability trump human life.

Some of the information in this blog was drawn from the following sources.

http://www.hcvadvocate.org/hcsp/articles/Shaw-Stiffel-1.html

http://tinyurl.com/d55az86

http://www.webmd.com/hepatitis/hepc-guide/chronic-hepatitis-c

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

 

To Remember Me — A Donor’s Request


To Remember Me

By Robert Noel Test (1926-1994)

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital; busily occupied with the living and the dying.

At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped. When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives.

  • Give my sight to the man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.
  • Give my heart to a person whose own heart has caused nothing but endless days of pain.
  • Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.
  • Give my kidneys to the one who depends on a machine to exist from week to week.
  • Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.
  • Explore every corner of my brain.
  • Take my cells, if necessary, and let them grow so that, someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.
  • Burn what is left of me and scatter the ashes to the winds to help the flowers grow.
  • If you must bury something, let it be my faults, my weakness and all prejudice against my fellow man….
  • If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you.

If you do all I have asked, I will live forever.

Bob Aronson is a 2007 heart transplant recipient, the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of most of these donation/transplantation blogs on Bob’s Newheart.

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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have a PowerPoint slide show for your use free and for use without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

 

Alcohol and Drugs The Organ and Child Killers


Alcoholism and drug abuse have haunted my family for years.  I’ve been in recovery for just about 30 years but I’m not alone in my family.  Anonymity disallows further disclosure but trust me, I know about addiction first hand and even as I write this another family member is suffering and causing suffering.  I hate the disease with every fiber in my body and I know how hard it is to fight it.

Alcohol is a drug. It is no different than heroin or cocaine or Dilaudid or Oxycontin.  They are all addictive drugs and they ruin lives and kill people.  Those are facts.  Here’s another fact.  There is an alcohol and drug abuse epidemic among young people in America today.

Here is some shocking information from the National Center On Addiction and Substance Abuse at Columbia University.  And if you are not shocked you should be.  http://www.casacolumbia.org/templates/Home.aspx?articleid=287&zoneid=32

  • Half of college students binge drink and or abuse other drugs and almost a quarter meet medical criteria for alcohol or drug dependence.
  •  Prescription drug abuse is the most rapidly increasing drug abuse among teens.
  • Each day more than 13,000 children and teens take their first drink
  • 7 million (26 percent) of public school students age 12-17 say their school is both gang and drug infected.
  • Teens who see their parents drunk are more than twice as likely to get drunk in a month and three times likelier to use marijuana and smoke cigarettes
  • In 2009 more than one third of teens (8.7 million) said they can get prescription drugs to get high within a day and nearly one in five said they could get them in an hour.

Now, you may ask yourself why a blog about organ donation and transplantation is focusing on alcohol.  The answer is simple.  Alcohol can and does destroy human organs.  If Americans could better control their alcohol consumption the number of people who need organ transplants would drop considerably.  Here are just a few of the effects of prolonged alcohol and drug abuse:’

  • The brain —  confusion and memory loss.  Changes in sensation and numbness.
  • Scarring of the liver called cirrhosis which can lead to death.
  • Disease of the pancreas and stomach even stomach cancer
  • Heart irregularities and weakening leading to death (my alcoholism could have contributed to my need for a heart transplant).
  • Upset the body’s natural control of blood fats and blood sugar levels.
  • Bone thinning called osteoporosis
  • Kidney disease

Long-term use of alcohol and drugs in excessive quantities is capable of damaging nearly every organ and system in the body.

Now, back to the epidemic amongst our youth.  Let’s just focus on alcohol.  Underage drinkers account for 11.4 percent of all the alcohol consumed in the U.S., according to Teen Tipplers: America’s Underage Drinking Epidemic, a report released by The National Center on Addiction and Substance Abuse at Columbia University.

The report found that more than five million high schoolers (31 percent) say they binge drink at least once a month. The gender gap in alcohol consumption that for generations separated girls and boys has disappeared among younger teens: male and female ninth graders are just as likely to drink (40 percent vs. 41 percent) and to binge drink (22 percent vs. 20 percent), the news release said.

But let’s not depend on just once source.  Here’s what the National Institute On Alcohol Abuse and Alcoholism (NIAAA) says about young teens and alcohol and the related risks.

“For young people, alcohol is the drug of choice. In fact, alcohol is used by more young people than tobacco or illicit drugs. Although most children under age 14 have not yet begun to drink, early adolescence is a time of special risk for beginning to experiment with alcohol.

While some parents and guardians may feel relieved that their teen is “only” drinking, it is important to remember that alcohol is a powerful, mood-altering drug. Not only does alcohol affect the mind and body in often unpredictable ways, but teens lack the judgment and coping skills to handle alcohol wisely. As a result:

  • Alcohol-related traffic crashes are a major cause of death among young people. Alcohol use also is linked with teen deaths by drowning, suicide, and homicide.
  • Teens who use alcohol are more likely to be sexually active at earlier ages, to have sexual intercourse more often, and to have unprotected sex than teens who do not drink.
  • Young people who drink are more likely than others to be victims of violent crime, including rape, aggravated assault, and robbery.
  • Teens who drink are more likely to have problems with school work and school conduct.
  • The majority of boys and girls who drink tend to binge (5 or more drinks on an occasion for boys and 4 or more on an occasion for girls) when they drink.
  • A person who begins drinking as a young teen is four times more likely to develop alcohol dependence than someone who waits until adulthood to use alcohol.

The message is clear: Alcohol use is very risky business for young people. And the longer children delay alcohol use, the less likely they are to develop any problems associated with it. That’s why it is so important to help your child avoid any alcohol use.

So you say, “Ok, but what can I do about it. If kids want to drink they’ll find a way.”  And you are right.  But often one of the ways they find to drink is through family members.  Over 70% of eighth graders say alcohol is easy to get and 30% of children age 12-14 get alcohol from a family member.

It’s also wise to use some common sense and remember that as parents you are role models. Your drinking habits are closely observed by your children whether you  think so or not.

There is help and advice from many sectors…SAMSHSA for one (SAMSHSA is the Substance Abuse and Mental Health Services Administration of the U.S. Government.)  http://underagedrinking.samhsa.gov/  Hers’ what they say.

Between the ages of 9 and 13, children start to think differently about alcohol. Many children begin to think underage drinking is OK and some even start to experiment. It’s never too early to talk to your children about alcohol, and encourage them to talk with you.  Over 70% of children say parents are the leading influence in their decision to drink or not.

Lots of little talks are more effective than one “big talk.”

Sitting down for the “big talk” about alcohol can be intimidating for both you and your child. Try using everyday opportunities to talk – in the car, during dinner, or while you and your child are watching TV. Having lots of little talks takes the pressure off trying to get all of the information out in one lengthy discussion, and your child will be less likely to tune you out.

When you do talk about alcohol, make your views and rules clear.

Take the time to discuss your beliefs and opinions about alcohol with your child. Be honest and express a clear, consistent message that underage drinking is unacceptable. When they feel that you’re being real and honest with them, they’ll be more likely to respect your rules about underage drinking.3

Family, peers, school, and the community all play a role in your child’s decision to drink. In fact, most children who use alcohol get it from a friend or family member.1 To ensure these people become positive role models for your child, let them know how you feel about underage drinking.

I have always contended that the best way to solve the organ shortage is to live healthier lives.  That means we have to start at a very early age.  Parents must teach their children about drugs and alcohol as soon and as often as possible.  If we don’t get a handle on this problem every other problem we have in our society will get worse.

Bob Aronson, a 2007 heart transplant recipient is the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of these donation/transplantation blogs on Bob’s Newheart.  

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.

 Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have a PowerPoint slide show for your use free and for use without permission.  Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions.  This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

“RockScar Love is where “Scars R Sexy”


Amy Tippins spends every waking moment thinking about or doing something about organ donation, helping other people and spreading joy.   She is the creative genius behind “Rock Scar Love” which celebrates the scars we accumulate through life.  She views these scars as badges of honor and encourages everyone she meets to view them the same way.  Today’s blog is written by Amy with my encouragement and support.  Please heed her words and help out.  Bob Aronson

My senior year of high school was supposed to be spent figuring out which college was going to offer me the best swimming scholarship.  My emotions were supposed to be spent on fighting my mother and trying to earn my independence.

Instead of negotiating how to pay for the next four years of college  I was negotiating with God on if I was going to live through them.  For five years, I had been in liver failure due to approximately two dozen tumors that had been slowly killing me.  I was not fighting with my mother (okay, maybe a little), but my own body.  As a teenager, I was fully aware of my own mortality.

As I reflect on the holiday season that has just passed I am reminded, as I am every year, that I was told I needed a life-saving liver transplant during the week of Christmas 1992.  For the following two months I wondered if I would get my second chance and what it would look like?  1992 was before you could Google “liver transplant” on the web and most likely, it was before Al Gore invented the internet.  When I was evaluated for my liver transplant it was during a time that the long term success of organ donation was still unknown, but the need of for organs was not so desperate.  As my transplant doctor said, “We had more livers than recipients”.  What I did not know was how much my life was going to change in so many amazing ways because of organ donation and how through it I would find my purpose.

Two years ago, I decided to “pay it forward” for what I was given.  Therefore, I started RockScar Love Designs (www.rockscarlove.com) a company that celebrates scars.  We celebrate beautiful scars and the lessons they teach us.  Through my scar, I have come to understand who I am and why I am worthy of celebration and love.  Through my scar, I have come to love who I am and realize that transplantation was my path to opening up my heart to a love beyond my imagination…love for myself!

Starting soon, in late March, RockScar Love Designs and Live Wright Society, a non profit promoting people and causes paying it forward (www.livewrightsociety.org), will be sponsoring the “Scars R Sexy” campaign.  We will be sharing over 20,000 scar stories across the US.  This is not about a physical scar or one particular type of scar, but about all scars and the people who bear them from all walks of life as they embrace their journey and realize that their story is one to be proud of; that scars are something to be embraced as beautiful and that we should all rise up to say “I love my scar because it means I have won — because I have championed what has tried to defeat me!  I am amazing and beautiful for all that I have been through”.

In order to make this campaign successful, RSL and LWS need each and every person that reads this to share our campaign and what it means to you by going to our Facebook page and becoming a fan as well as sharing the page: http://tinyurl.com/7pz5t8w Scars R Sexy)   If you believe in anyone who has a scar of a physical, emotional or psychological sort, we ask you to be a part of this campaign by sharing it with everyone you know.  Without your support, our scars will remain hidden!

You can find RockScar Love Products at www.rockscarlove.com.  We offer t-shirts, baseball caps and multiple other items with a scar theme.  15-20% of all sales go back to charity with a focus on transplant and pediatric based charities!  I also dedicate large portions of my time to mentoring transplant patients, speaking at charity events, serving on board of NKF GA/AL and raising money for Camp Independence.

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.

Please view our new video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

Also…there is more information on this blog site about other donation/transplantation issues.  When you leave this site go to our Facebook group, Organ Transplant Initiative and join. The more members we get the greater our clout with decision makers.

Give A Million Dollar Gift That Won’t Cost You a Penny


This is a guest blog written by Ashley Tenczar Curran of Boston, Massachusetts.  Her husband Peter desperately needs a new liver.  He has been on the national transplant list for two and a half years.  Ashley is a dear friend of mine and an administrator of my donation/transplantation Facebook page, Organ Transplant Initiative (OTI).

Heroes of Hope

So often I will read , with sadness, an obituary of a friend or relative that says: “He/She lost their battle with ___(disease the person suffered from) and passed away “.

I will hear people speak of this person as if they stepped away from the pitcher’s mound, defeated, and limped home to sulk in their bedroom. “They are at peace, they struggled, but now they are home”.

When we speak of a person who has been waiting on a transplant list, however, I know that I could never say they “lost” any battle, for we who have been caregivers know that this “battle” that is waged on the human body is like no other. An organ has failed in the body, yet this person is alive.

When I really stop to contemplate that, it is an awesome responsibility that the patient and caregiver take on when they and their transplant team decide to be “evaluated for possible placement on the transplant list”.

First off, the fear of the transplant itself kicks in, for though research and technology has come a long way, especially with mortality rates and the new generation “cyclosporine” anti-rejection drugs that  have given transplant recipients much longer survival rates and less time spent in the hospital, but  the operation itself is mind boggling. I cannot even imagine, even after over 2 years of waiting on the transplant list with my husband, saying “goodbye” to him as they wheel him in to the surgery of a lifetime.

While one is waiting and being evaluated, there are dozens of medications that have to be prescribed, filled, changed, renewed, filled again, and taken every day. One cannot “skip” a medication that is basically functioning as your heart, liver, kidneys, and so on. I was a health professional for over 6 years, and I have trouble keeping track of all of these pills, even with all of the devices and alarms, computer programs and other ways to organize them. We struggle every single day to keep this “battle” going.

A supply of these meds has to always be on hand, and I will bet I am not alone in having dealt with hte “on call” doctor who has no idea who we are, and has to read all about our loved one in less than a minute and make a potentially life changing decision on a Saturday night to continue this ritual of keeping what is left of the organ functioning.

While one is being evaluated, the treatment must continue, and it does. Paracentesis (withdrawal with a long needle of accumulated fluid around the abdomen), Thoracentesis, (fluid withdrawn in much the same procedure around the lining of the lung), Colonoscopy, Endoscopy, Cat Scans, Ultrasounds, and dozens of others, just to name a few, have been our life for the past two years.

We are the lucky ones, however, with just the feeding tube in place or my husband, because some people need to be on continuous treatments, such as dialysis, breathing machines, oxygen, and so many other life preserving therapies.

Many of these are painful, and exhausting. Yet somehow, some way, we find the will to go on.

We wait one more day, one more hour, praying that someone will pay attention to the “battle” going on in the hospital room, or home, of our loved one. We pray that someone, somewhere, will go online, or to the Registry of Motor Vehicles, and fill out that form to become an organ donor “now” , rather than “later”.

Caregiver and patient, family, friends,chaplain support, medical team assistance,(and of course, humor!) all combined to keep just ONE life intact. It may seem foolish to some, when thousands are dying around the world of starvation, earthquakes , and other disasters and tragedies, but when it is your husband, your mother, father, brother, sister, or otherwise, it is the most important life there is.

This is humanity at it’s best.

This is the reason I cannot understand the missing piece of it all. Where are the organ donors? The rate of donation is astonishingly low in almost every state!

Of course there are plenty of stories I could pull at any given day from the media/ net, (or from having been in the “OTI” (Organ Transplant Initiative group on Facebook), personal stories of dear friends ),of the strength and courage of a living donor, or a deceased donor, who puts forth their life and everything that entails, and gives part of it to another human being. These stories are real, and I don’t want to underscore those absolute heroes who give freely of their own body so that another person, be it stranger or loved one, can go on and complete their life cycle.

But I cannot for the life of me understand why the rate of organ donation is so low! People always talk about charities, and non-profit organizations that they are involved in, and how the recession has caused them to have to “cut back”: but here is a place to give a MILLION BUCKS, without having to spend a dime, to someone their life back, and yet there is a negative response from so many.

I have heard so much in the last couple of weeks about “James Whitey Bulger”, the “big and scary gangster” from my home of Boston, and 24/7 media coverage about a man who murdered 19 people, who took AWAY 19 lives, and while my sympathy is with the victims of this coward, I cannot stop and compare the statistic of the number “19”.

19 people die every day in the U.S. from lack of a life saving organ.

Imagine if all of that senseless and repetitive coverage of a man who will problably never see justice shifted, and turned to something positive, a push for new organ donors to register, stories of the lives of those who have “been in the battle”.

Whitey, I dare say, would have a fit. It would be like the devil himself losing the attention of the world.

I flip through the gauntlet of these “reality shows”, from the industry of crab fishing (Deadliest Catch) to saving whales, (Whale Wars) , parking meter attendants and their exciting life, (Parking Wars) and medical shows about “real life” medical emergencies, but not ONE show about Transplants.

What about the “Transplant War”?

Those who are winning it would love to talk about it.

Here is an opportunity for an “up and coming” reality show writer to really make their mark,but for some reason, this intriguing subject rarely appears on my TV.

What could possibly be more inspiring then a” transplant reality series”? The human epic drama about a war waged against your own body. The “altruistic” demeanor of the whole situation, humanity at it’s best, and worse.

The Gift of Life that is given every single day, to little children who pass away suddenly, and hearing from the heroic parents who can actually see past their grief for even one minute to think about another person’s child is nothing short of a spiritual awakening.

I believe the Organ Donation rate would double almost over night. I am an optimist, and when a particular cause is taken up in America, it spreads like wildfire.

The people who may have needed to see this “reality show”?

The man who got shot outside a pre-school in Boston yesterday morning thought he had plenty of time, he was about 21 years of age.

Those people who die in car crashes 2 miles from their home thought they had plenty of time also.

The persons who hide behind their “religion”, without even consulting their spiritual leaders on the subject, and say “I can’t be an organ donor because I am ___” (fill in almost any religion, because I have heard them all!) Amish, Jewish, Muslim, Catholic, Christian, …all of them are religions that absolutely encourage the individual to “follow their conscience” and to “support , continue, and pursue life in any way possible”. (The current Roman Catholic Pope’s words)

So, in closing, If you ARE an organ donor, if you have given of yourself, THANK YOU from the bottom of my heart, and dare I speak for those I know, and those I love. You will be rewarded, and you have my undying respect and love, whether you are alive or deceased.

If you have not “checked it (organ donation) out”, NOW would be the time.

If you are waiting for an invitation, I just sent you one. No need to RSVP, just go to the United Network for Organ Sharing’s website (UNOS.ORG) for more information, and to sign up online, or for locations on where you can sign up in person.  You can also become a donor on line by going to http://www.donatelifeamerica.com or by calling your local Organ Procurement Organization (OPO)

Oh, and “NBC, CBS, FOX, DISCOVERY CHANNEL, A+E.”…if you are watching, call me. (I don’t have your number, and have not the faintest idea how to get a hold of you)

I have a great script for your first episode of “Transplant Wars”, and the name of the first episode is “HEROES OF HOPE”.

This name is because the transplant recipients, the organ donors, the caregivers, the medical teams, the researchers…they really are “HEROES” of “HOPE”. My heroes.

*Thank you to Bob Aronson for being our “hero of hope”. He has been there for my husband and I for over 2 years, since the minute we met online, and we could never repay him for his support and love during this “battle” we are going through that seems to never end. Anyone who says you can’t make life long friends on FB hasn’t met Bob. Come join our group, “OTI” (Organ Transplant Initiative), you will be made to feel right at home!

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Please view our two brand new video “Thank You From the Bottom of my Donor’s heart” on You
Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4  This video was produced to promote organ donation so it is free and no permission is needed for it’s use.

Another important video is “A Transplant for Nurse Lori” this brave woman has Multiple Sclerosis and needs help paying her share of the bill for a procedure that can halt the disease in its tracks and even reverse some of it.  Watch the video at http://www.OrganTI.org.

Also…there  is more information on this blog site about other donation/transplantation issues.

We would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater  our clout with decision makers.

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

The Arizona 98 — The Full Story


Since October I’ve been leading a national Facebook campaign to save the lives of the 98 Arizonans who were promised, then denied Medicaid coverage for organ transplants by the legislature and governor Jan Brewer. They are only on Medicaid because their conditions have made them too sick to work and too weak to raise the money needed to save their lives. They are powerless, helpless people for whom the Governor has absolutely no compassion. She has not offered any words of sympathy, any support in helping to raise money or even to meet with them. She simply says, “We don’t have the money” and blames so-called Obamacare for the Arizona mess. But, the fact is that the Arizona legislature passed and she signed the bill BEFORE the Obama bill even passed congress.

That isn’t the only mischaracterization the Governor has made. She has received over $1 billion in federal stimulus funds, $30 million of which is discretionary; she can use it any way she wants to. She says all the money is spoken for, but she refuses to tell anyone what she will spend it on, she won’t even talk to the media. Strangely she found $2 million to study algae and another nearly $2 million to repair a roof. Voters even approved nearly $100 million for a spring training facility for the Chicago Cubs. By cutting the Medicaid funds that would have paid for these people’s transplants the state will save between $1.4 and $4.5 million out of a nearly $9 billion budget.

Governor Brewer has fudged on other issues as well. She says transplants don’t work, that they are optional. Well, I can testify that they work and so can thousands of other people. As to it being optional the only option for someone who needs a transplant is death. You cannot be certified to be listed for a transplant unless a physician who specializes in your particular illness convinces a hospital transplant committee that you will die unless you get a transplant. Brewer also says the state still covers liver transplants but that, too, is not true. They Don’t. One of the 98, Francisco Felix, was on the operating table being prepped for a liver transplant donated by a relative when the order came that the state wouldn’t pay for it. He was awakened, sent home and his relative’s liver was given to someone else. Can you think of anything more cruel?

Several well known, highly respected transplant experts have contacted the governor telling her that the information she used to make the decision was outdated, erroneous and incomplete but she has refused to acknowledge them and continues to use the same wrong information as she did just recently on Fox news with Greta Van Susterin.

The Arizona Legislature meets on January 10 to reconsider the action and while Republicans have an overwhelming majority some GOP leaders have suggested that perhaps they were wrong and should reverse their previous decision, so there is a good chance of reversal even though the Governor refuses to change her mind. That means that we must put pressure on the legislature to pass a veto-proof bill that will return the transplant coverage to the Arizona 98. All we are asking for is that the state honor its promise.

I would ask you to do these things.

1) Write to the Arizona Senate Majority leader and the Speaker of the House urging them to restore Medicaid transplant coverage (I have no names for these people because they will be selected when the session begins).

2) Get on Governor Brewer’s Facebook page and using logic and diplomacy, urge her to change her mind.

3) Join my Facebook group, Organ Transplant Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 The more members we have the more clout we’ll have with elected officials and other decision makers, so far we have nearly 800 members.

4) Spread the word. Tell everyone you know about the tragedy unfolding in Arizona and ask them to take action by contacting elected officials but also by telling their friends through the use of social networks, blogs, email and whatever else they can think of. .

5) If the legislature doesn’t change its mind the 98 will still need transplants so I have started a fund drive, “Save the Arizona 98” through the highly respected National Transplant Assistance Fund (NTAF). If you go to www.savethearizona98.com you will find a link where you can purchase T-shirts and other products with the Save the Arizona 98 graphic on them. ALL profits will go to the NTAF and there are no administrative fees or expenses charged for our service. The Link also offers an opportunity to donate directly to NTAF and designate exactly who you want to help. When you enter the site you will see a large “Save The Arizona 98” sign. You have permission to download, distribute and use it in any way that will help save these lives.

Please help in this effort. Right now Arizona is the only state in the union that has denied organ transplants for Medicaid patients but other states aren’t far behind. We must send them a message that Americans won’t stand for letting our neighbors die.

If you believe in keeping promises, helping the sick, equal treatment under the law and preserving life, this cause is just right for you.

The only obligation any government has is to protect its people. It is in the U.S. Declaration of Independence and in the Preamble to the constitution. Will you help?

Thank you from the bottom of my donor’s heart.

Bob Aronson

Please 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 a donor you may save or positively affect over 60 lives.  Some of those lives may be people you know and love.

Also…visit and join my Facebook site, ORGAN Transplant Initiative http://www.facebook.com/group.php?gid=152655364765710  OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ . 

 The more members we get the greater our impact on increasing life saving organ donation

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