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Post Transplant Depression, It’s Common and There’s Help!


By Bob Aronson

gloomy gusHaving suffered from post transplant depression myself, I know of what I speak.  It hits you like a sledge hammer and keeps pounding away.  The pain isn’t physical, it’s emotional and it can be intense, so intense that some consider taking their own lives. Worst of all, few if any of your family and friends understand and some become impatoemt. dsksdddddddddddddlkkkkkkkkkkkkkksddddddddddddddddddddddddddddddddddddddddddddddddddlddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddccsssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssjnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssss with your continued mood swings. They don’t even have the most basic understanding of the disease. While their intentions are good, their advice usually isn’t. They will say things like, “Buck up, My God your’re alive, you got a new heart and you’re alive.” To that I can only say, “I would be happy to buck up if I could, but I can’t. Noone would choose to live like this You can feel useless, unnecessary, irrelevant and totally without purpose.  Some patients even feel suicidal, but it doesn’t have to be that way.  There is help.

If there’s one  message you should take away from this blog, it is this.  Depression is not your fault, you did not cause it and therefore you alone can not fix it. “Cheer up, look at the bright side,” may sound like good advice but it isn’t because it assumes you decided to feel lousy.  Who on earth would choose to be depressed?  It is sad, but true that sometimes even the people closest to you don’t understand.  They continue to hold on to the belief that you can snap out of it if you really want to.  The reality of depression just isn’t that simple.  Frankly, it is very, very complex and takes highly skilled and trained professionals to help you find your way back to the sunny side of the street.

Unfortunately if you have had or if you are going to have an organ transplant, chances are good that you might fall victim to post transplant depression. Estimates of how many patients become depressed following an organ transplant range from 10 percent all the way up to 50%, but no matter what the percentage the fact is that some people will have serious emotional struggles following their transplant.

One can easily ask, “Depression? Why on earth would anyone be depressed after their life has been saved by the donor/transplantation process?”  Well, there are a number of reasons, chief among them is the haunting feeling that someone had to die in order for you to live.  The fact is, the person who died, would have died anyway whether they were an organ donor or not and if they were, someone might gain new life as a result, but that’s logic and logic alone cannot solve the problem and help the patient. Besides, there are other issues that contribute to depression like:

  • Living with the psychological highs and lows that are sometimes not okcaused by immunosuppressives such as corticosteroids
  • The steroids you take can have the effect of a mood amplifier. In the first few weeks, especially, when the doses are highest, the medicine will wind you up and make it hard to sleep. The sudden changes in the family — and in your behavior — can be extreme.
  • Managing a complex post-transplant regimen that encompasses: (1) multiple meds and schedules, (2) monitoring vital signs, (3) exercise and dietary requirements, (4) regular medical evaluations and lab tests, and (5) lifestyle restrictions on smoking, alcohol, and other potentially harmful substances
  • Major life alterations such as transitioning from being critically ill or dying patients and family caregivers to roles that are more wellness-focused)
  • Coping with new and taxing financial and economic issues like the cost of transplant surgery, hospital stays, follow-up care, cost of drugs and health insurance.

To some that list of changes is so overwhelming as to be nearly impossible to manage.  Some have been seriously ill for such a very long time and so focused on dying that they cannot adjust to an attitude that centers on life and living.   What is even worse is that unless the patient is getting professional psychiatric help he or she may not be able to identify a single stressor that brought on their depressed state.

What is Depression?depression

Simply put, depression is a mood disorder that causes a persistent feeling of sadness and loss of interest in those things that had been of great importance.  It affects how you feel, think and behave and can lead to a variety of problems. Day to day activities become ponderous and boring and patients sometimes feel their lives are not worth living.

Depression isn’t just feeling “down” and you can’t just “snap out of it.” It can require long-term treatment with either medication, psychological counseling or a combination of the two. Above all you must know that suffering from depression is not a personal weakness.  You didn’t bring it on and will power alone cannot defeat it.

Depression can occur once or several times in a lifetime and according to the Mayo Clinic (http://tinyurl.com/ouory9u) the symptoms can appear all day, every day and may include:

  • Feelings of sadness, tearfulness, emptiness or hopelessness
  • Angry outbursts, irritability or frustration, even over small matters
  • Loss of interest or pleasure in most or all normal activities, such as sex, hobbies or sports
  • Sleep disturbances, including insomnia or sleeping too much
  • Tiredness and lack of energy, so even small tasks take extra effort
  • Changes in appetite — often reduced appetite and weight loss, but increased cravings for food and weight gain in some people
  • Anxiety, agitation or restlessness
  • Slowed thinking, speaking or body movements
  • Feelings of worthlessness or guilt, fixating on past failures or blaming yourself for things that aren’t your responsibility
  • Trouble thinking, concentrating, making decisions and remembering things
  • Frequent or recurrent thoughts of death, suicidal thoughts, suicide attempts or suicide
  • Unexplained physical problems, such as back pain or headaches

For many people with depression, symptoms usually are severe enough to cause noticeable problems in day-to-day activities, such as work, school, social activities or relationships with others. Other people may feel generally miserable or unhappy without really knowing why. http://tinyurl.com/lgsq8hm

Health Concerns

(Material gathered here comes from several sources primary among them is UNOS (the United Network for Organ Sharing).

What happens after transplantation depends on the organ transplanted and the recipient’s specific medical situation. Most patients recover fully, return to work and resume a normal, active life after receiving a new organ. However, there is a possibility of developing unrelated health problems after transplantation. That’s why it is important to work closely with your doctor concerning your overall wellness, as well as regarding the following health concerns:

Anxiety and Depression

anxiety symptomsPatients and their families face a new lifestyle after transplantation that may cause them to feel nervous, stressed or depressed. Because emotional and psychological support is a continuing process, ask your social worker about counseling services that can help you and your family deal with these changes. Professionals can help you work through concerns about your self-image; mood swings; job planning; rehabilitation; family stresses, such as parent-child conflicts, marital conflict or changes in sexual functioning; and financial concerns, such as questions about Medicare, disability or insurance.  Any and all of the following can contribute to your depression and/or anxiety.

Diabetes

Some anti-rejection medicines are known to cause high blood sugar. Although it is typically a temporary condition after transplantation, it is more common in patients who have a family history of diabetes and patients who are overweight. It can be controlled by reducing the dose of a patient’s anti-rejection medicines or changing medications all together.

GI Upset

GI (gastrointestinal) or stomach upset is also a common complaint after a transplant. Patients on steroid therapy may be at an increased risk of developing ulcers due to increased hydrochloric acid from the stress of the procedure. Treatment of GI upset may include one or a combination of drugs that reduce acid production. In addition, people with GI upset should take several steps to reduce symptoms, including:

  • Reducing the intake of caffeine, alcohol and over-the-counter medications that cause GI upset.
  • Eliminating carbonated drinks can help
  • And it sometimes helps to take your meds with food to decrease irritation.

Gout

Gout is a painful and potentially disabling form of arthritis. Diagnosing gout can be difficult and treatment plans vary based on a patient’s existing medical problems and medications.  Often Gout will show up in the big toe and it is very painful.  Sometimes even a bedsheet touching the Gout area will result in extreme pain.

High Cholesterol

Many immunosuppressant drugs can contribute to high cholesterol. This condition therefore affects many transplant recipients. When a patient develops high cholesterol, blood vessels, including the ones attached to the transplanted organ, become clogged, which affects the flow of blood. This slowing of blood flow can affect the success of your transplant and may even lead to heart disease. It is important to talk to your doctor about how to reduce the risk factors of heart disease, including controlling your cholesterol.

Hypertension

Hypertension, or high blood pressure, is common immediately after
transplant. Certain anti-rejection medications, as well as the original disease, all can contribute to hypertension. Treatment of hypertension may include one or a combination of drugs, and often, as anti-rejection medicines are tapered to a maintenance dose, hypertension may decrease. Talk to your doctor about what’s right for you and how to avoid high blood pressure.

Sexual Relations

Sexual concerns after transplantation are commonly experienced, yet seldom discussed or addressed during evaluation. It is therefore very important to talk with your doctor about your sexual history and concerns.

However, sexual function and interest can be related to how well your body has accepted your new organ and how realistic your expectations were for life after your transplant. A counselor can also help a couple understand the difference between pre- and post-transplant problems. Often, support groups can be very helpful in this regard.

Additionally, in sexual relations, as in all issues, recipients must remember that they are immune suppressed and subject to many kinds of infections. In fact, some infections in recently transplanted patients can be potentially life threatening. Consequently, it is important to consider the following points:

  • The sharing of saliva during kissing can expose both partners to active diseases, such as colds or other viruses.
  • Condoms don’t prevent diseases that are spread by contact between the area surrounding the penis and external genitals.
  • The risk of contracting infectious diseases though oral sex is possible, especially if ejaculation occurs or if there are any sores or wounds on either partner.

Shingles

People with weakened immune systems, such as transplant recipients treated with immunosuppressive drugs, risk developing shingles. Shingles is a painful infection of the central nervous system caused by the Varicella virus that causes a blistering rash and severe burning pain, tingling or extreme sensitivity to the skin and is usually limited to one side of the body. The severity and duration of an attack of shingles can be significantly reduced by immediate treatment with antiviral drugs.  You should also ask your doctor about getting the Shingles vaccine.

Sometimes our own irresponsible behavior is responsible for feelings of depression or inadequacy.  It has been established that noncompliance appears to be relatively common during the first several years after transplantation. That means some patients just don’t take the right amount of medication at the right time, if they take it at all. Furthermore, compliance in most areas of the medical regimen worsens over the first year after the transplant just as it does for most patients who begin new medical therapies.  For example:

  • Up to 20% of heart transplant recipients and 50% of kidney transplant recipients have been found to be noncompliant with prescribed immunosuppressant medications during a given 12-month period in the early post-transplant years
  • 5% to 26% of heart transplant recipients smoke at least once after being transplanted; no study has determined what proportion of these patients become regular smokers.
  • 11% to 48% of liver transplant recipients return to some level of alcohol consumption during the first year post-transplantation.
As a result of noncompliance patients are likely to experience rejection symptoms or actual rejection and, of course when this happens patients experience anxiety and/or depression.   http://tinyurl.com/qjlc48n

Treatment options

time to healResearchers at Henry Ford Hospital have found that emotional closeness between transplant patients and their caregivers helps reduce depression and anxiety after surgery.  While this study was about liver transplant patients, it is likely that the conclusions probably have universal application.

“People with close networks and good support recover faster after liver transplant and have less depression and anxiety at six months after transplant,” says Anne Eshelman, Ph.D., Henry Ford Health System Behavioral Health Services, lead author of the study.

“These findings suggest caregiving relationships as a target for psycho-therapeutic intervention among patients with end-stage liver disease.”

Study results were presented at the International Congress of Behavioral Medicine in Washington D.C., held by the International Society of Behavioral Medicine and the Society of Behavioral Medicine.

The study looked at 74 liver transplant surgery candidates and their primary caregivers. Transplant patients were surveyed before surgery and at a six-month follow-up. Caregivers rated the degree of closeness they felt in their relationship to the patient.

The sample was divided into groups with caregivers reporting maximum closeness or less closeness.

For patients with end-stage liver disease, depression and anxiety improve after liver transplant, but the study found that these changes are not as great for individuals with emotionally distant caregiving relationships.

“If you live with someone who loves you, the quality of care they provide may be much better, they may be more encouraging, you may want to please them and recuperate faster so you can spend quality time with them,” says Dr. Eshelman.  “Caregivers who are not close, may provide the basic requirements, but don’t help give someone a reason to live and look to the future.”

The study results also suggested that emotional closeness was critical for affective improvement in men, but less so for women, though interpretation is limited by a small sample size, explained Dr. Eshelman.

“Men who had adequate number of support people, but did not have close support, were still depressed and anxious at follow up, compared to those who had closer support,” says Dr. Eshelman. “Other literature shows that women have wider support, more friends and family they are connected to than men, and if the primary support person is not that close, they probably rely on the other people such as girlfriends.”
The study was funded by Henry Ford Transplant Institute. http://tinyurl.com/q4bwqzs

Treatments for Depression

From Web MD

If you are diagnosed with depression, here’s some good news: Excellent treatment options are available to you.

Many people use a combination of treatments, such as medication and psychotherapy. For depression that doesn’t respond to standard treatment, non-drug approaches can be effective, either alone or used with other treatments.

Learn more here about the most common approaches to treating depression.

Talk Therapy for Depression

Talking with a trained therapist is one of the best treatments. Some people choose to be in therapy for several months to work on a few key issues. Other people find it helpful to continue in therapy for years, gradually working through larger problems. The choice is up to you and your therapist. Here are some common types of therapy:

  • Cognitive behavioral therapyhelps you see how behaviors and the way you think about things plays a role in your depression. Your therapist will help you change some of these unhealthy patterns.
  • Interpersonal therapyfocuses on your relationships with other people and how they affect you. Your therapist will also help you pinpoint and change unhealthy habits.
  • Problem-solving therapyfocuses on the specific problems you face and helps you find solutions.

Medicines for Depression

Medicines are the other key treatment for depression. If one antidepressantdepression meds doesn’t work well, you might try a similar one or a different kind. Your doctor might also try changing the dose. In some cases, he or she might recommend taking more than one medication for your depression. There are now many different antidepressants that your doctor can choose from. The entire listing can be seen here: http://tinyurl.com/p4yaq4b

Just keep in mind that recovery is a process that may need constant adjustment and takes time.

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All the views

Thank you donors and donor families

Bob 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. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

Proposed Medicare Rule Would End Support of Anti-Rejection Drugs While We Pay More For Boondoggles


By Bob Aronson

UPDATE MARCH 10, 2014

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

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

Original blog published February 28, 2014

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

akf logo two

Dear____,

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

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

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

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

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

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

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

Sincerely,

Nikia Okoye

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

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

ADDRESSES

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

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

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

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

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

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

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

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

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

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

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

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

Mental Illness Myths Exploded — Music Therapy Can Help


“Music is a moral law. It gives soul to the universe, wings to the mind, flight to the imagination, and charm and gaiety to life and to everything.”

Plato

Mental Illness is as real as cancer — you can’t “think” your way out of it.

By Bob Aronson

Get over it!  emotional baggageIt’s all in your head,” was and is a common utterance by those who don’t understand that just because it is in your head doesn’t make it less real.  Will power cannot dislodge demons of the mind any more effectively than it can stop cancer.   Both are real, both are serious and treatment for both is available and necessary.

The difference between the two is that while we accept illnesses of the body as real illnesses we, as a society, have not yet fully accepted mental illness as a disease and until we do greater societal problems will ensue.

Both pre and post transplant patients suffer from depression.  Some suffer from other mental illnesses as well.  Just because we need or have had an organ or tissue transplants doesn’t mean we aren’t subject to all the ills that befall everyone else.  In reality we may be more susceptible because we have come face to face with death.  Many of us live with it for years.  You can’t get on the transplant list unless you have an end stage disease. That’s fancy doctor talk for, “You are dying.”

This blog is about one approach to helping people with emotional or other problems involving the brain…music.  Before we get into solutions, though, it is important to understand the problem.pencil optimism

The U.S. Centers for Disease Control (CDC) says that although mental health and mental illness are related, they represent different psychological states.

Mental health isa state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community.”1 It is estimated that only about 17% of U.S adults are considered to be in a state of optimal mental health.2 There is emerging evidence that positive mental health is associated with improved outcomes.

Mental illness is defined as “collectively all diagnosable mental disorders” or “health conditions that are characterized by alterations in thinking, mood, or behavior (or some combination thereof) associated with distress and/or impaired functioning.”2 Depression is the most common type of mental illness, affecting more than 26% of the U.S. adult population.3 It has been estimated that by the year 2020, depression will be the second leading cause of disabimental illness montagelity throughout the world, trailing only ischemic heart disease.4

Evidence has shown that mental disorders, especially depressive disorders, are strongly related to the occurrence, successful treatment, and course of many chronic diseases including diabetes, cancer, cardiovascular disease, asthma, and obesity5 and many risk behaviors for chronic disease; such as, physical inactivity, smoking, excessive drinking, and insufficient sleep.

Unfortunately public acceptance of mental illness treatment has been slow in coming despite the fact that many effective treatments have existed for a long time.  Often people who are affected don’t seek help because of the embarrassment of being labeled “mentally ill”

Mental Health America (MHA) is trying to dispel the myths surrounding mental illness.  The five most common are: (http://www.mentalhealthamerica.net/go/workplacewellness/5myths )

busting the myths

Myth #1: Mental illness is the same as mental retardation.

The Facts: Mental illness and mental retardation are entirely different disorders. Mental retardation is primarily characterized by limitations in intellectual functioning, while intellectual functioning varies among persons with persistent mental illness just as it does across the general population.

Myth #2: Recovery from mental illness is impossible.

The Facts: While these illnesses are persistent, research has shown that with treatment, the majority of people with mental illnesses achieve genuine improvement in their symptoms over time and lead stable, productive lives. As the treatment of mental illness has advanced, the focus of treatment has shifted from simply minimizing symptoms to true recovery-that is, the reintegration into mainstream society, including (and perhaps most importantly) the world of work.

Myth #3: Mentally ill and mentally restored employees (that is, those in whom mental illness is effectively treated) tend to be second-rate workers.

The Facts: Far from being inferior workers, individuals with mental illnesses may in fact be superior in many ways to their co-workers without mental illness. Employers who have hired these individuals report that their attendance and punctuality exceed the norm, and that their motivation, work quality, and job tenure is as good as — or better than — that of other employees. Research has shown that there is no difference between the productivity of workers with and without mental illness.

Myth #4: People with psychotic disabilities cannot tolerate stress on the job.

The Facts: The response to job-related stress, and precisely which factors will be perceived as stressful, vary among individuals with psychiatric disabilities just as they do among people without such disabilities. For all workers — with or without psychiatric disabilities — productivity is optimized when there is a close match between the employee’s needs and his or her working conditions.

Myth #5: Mentally ill and mentally restored individuals are unpredictable, potentially violent, and dangerous.

The Facts: This myth is reinforced by media portrayals of people with mental illnesses as frequently and randomly violent. However, a research literature review conducted at Cornell University found absolutely no evidence to support such portrayals. The fact is that the vast majority of individuals with psychiatric disabilities are neither dangerous nor violent.

we don't want you

So, Given that we understand the myths and can deal with them let’s look at one form of therapy that can be and has been very effective in some cases.

While mental illness was not an issue, a serious brain injury was in the case of former congresswoman Gabby Gifford  Gabby Giffodwho was seriously wounded when shot in the head in an attempted assassination.   Her therapists have used music to help her learn to walk and speak again, as well as give her an emotional boost along her stunningly difficult path.  If you want to learn more about the Gifford story click on this link from ABC TV news.

http://tinyurl.com/n3cuapy

The power of music

Music can help rewire the brain after a traumatic injury, stroke or accident. In all of us, Our own playlist of personal favorites can help to:colorful notes on staff

  • Trigger memories. Think of jingles that remind you of a company’s name, or that song that always takes you back to your senior year of high school.
  • Promote learning. Next time you have a phone number or list of terms to remember, try putting it to music. Elicit emotions. The movie industry has long known how to use background music to heighten terrifying, tragic or exhilarating moments.
  • Provide motivation. Chores can become an entirely different experience when set to an energetic beat. Improve coordination. If you hear music while you’re walking, you can’t help but to walk to the beat. That’s a biological process called “entraining,” in which a rhythm and melody pull us into synchrony with them.
  • Reduce stress and pain. Calming music can entrain you to breathe deeply and the memories music elicits can remind you of happier, more peaceful times and places.Source: Concetta Tomaino, executive director of the Institute for Music and Neurologic Function at the Beth Abraham Family of Health Services in New York.

Music holds a unique role in human life. Its rhythms help organize movements — almost no one can resist a good beat. Music brings up memories. And music, it seems, can help retrain the speech centers of the brain.

I could go on here and offer quote after quote about what music therapy is and does but the best way to for readers to know how it works is to listen to what patients have to say.  The American Music Therapy Association (AMTA) http://www.musictherapy.org/ has a section on its web site where patients relate their experience with music therapy.  Here are just a few, you can read more by going to the AMTA site.

Parent testimonial, written by Tamera Norris

Music has the power to enrich the mind of a child with autism. Many people with autism have limited verbal expression. They live a life of involuntary silence.road to recovery “After silence, that which comes nearest to expressing the inexpressible is music.” (Aldous Huxley) That is the reason why “music (became) the shorthand of (William’s) emotions.” (Leo Tolstoy) It gave him opportunities for speech, emotional contact and mental focus.

From the age of four through his current age of 16, William has taken a music bath once or twice a week at The Music Settlement. As Oliver Wendell Holmes once said, “…a music bath… is to the soul what the water bath is to the body.” Music has flown out, immersing restless feelings, calming William, minimizing his hesitation. Then it ebbed and he met the eyes of the therapist. With the guidance of Ronna Kaplan and other music therapists, William has developed, encouraged to tune his fine and gross motor skills. The therapy program made use of live and recorded music, pre-planned dialogues for the clients and sound effects. While learning to play instruments, William also learned life skills. “Music (became the soundtrack of (his) life.” (Dick Clark)

Being born with autism makes it difficult to interact with others or communicate verbally. It causes the affected person to be unaware of reacting in ways that others do not commonly react in society. Music therapy provided William a non-threatening environment in which to build relationships with peers, express himself verbally and nonverbally and learn to participate in socially acceptable ways. This was achieved through group therapy, as well as individualized sessions. Both forms were ideal for William, because individual lessons allowed him to learn at his own pace. These lessons were tailored to meet his needs. They helped him to learn to read music, follow a rhythm, and to respect the need to display the proper behavior in the proper situation. Small group therapy required him to learn to take turns and to be a focused member of a team. He had to use proper questions and verbal responses. He had to learn to be both leader and supportive member. This even carried over to life outside of The Music Settlement, as William auditioned for and earned a position on a regular team of drummers for his school. He was able to perform at the House of Blues in front of a large, noisy audience, with no problem. This was not something that he would have been able to withstand before his experiences in music therapy.

We are very pleased and thankful for the progress that William has made over the years and we foresee him continuing to flourish with additional music therapy. The combination of an excellent music therapy curriculum and an enthusiastic, care-giving staff, has enabled William not to just, “…go where a path might lead, but instead to go where there is no path and leave (his) trail.”  (Ralph Waldo Emerson)

I am closing with a short poem, expressing my feelings about The Music Settlement and its staff. It is simply entitled, Thank You.

Thank You

Music therapy teaches
Social skills.
It’s about communication.
It’s about what William’s taught,
In nurturing situations.
He’s learned patience
And tolerance,
Growing in many ways.
His social skills developed,
Made him what he is today.
So, thank you for your guidance,
As only music can touch.
Thank you for reaching our William,
Because it means so much.

A physician/patient  talks about his recovery.

R.B.Fratianne, MD.  Prof. of Surgery, CWRU Dir. Emeritus, Burn Center Metrohealth Med. Center.  I was deeply honored by the gracious invitation to attend this year’s annual meeting of The AMTA and receive the Advocate of the Year Award. At the meeting, I was impressed by the level of enthusiasm and dedication to excellence shown by the highly trained professionals I met. They radiated pride in their work coupled with an intense sense of fellowship which made me feel welcome and respected – even though I was a rookie. For this I am very grateful.

I learned the value of music therapy first-hand when I had a brain tumor diagnosed several years ago. Fortunately it was not a cancer, piano keyboardbut my recovery from major cranial surgery was slow and difficult. I was given physical/occupational and speech therapy. The music therapist working with me on the burn unit knew I played piano by ear and she suggested I work out on the piano as part of my therapy. At first everything seemed strange and “nothing” worked. Molly wouldn’t let me quit. I wanted to – it was frustrating! Slowly I began the feel at home at the keyboard and all my other therapies started to become more effective. I could “think” better.

Music therapy forced my brain to respond to the complex patterns of pitch, tempo and melody, and forced me to integrate motor function with the psycho-acoustic properties of what I was trying to express. I promptly regained my surgical skills at my pre-operative level and returned to practice on the burn unit. This response is known as neuro-plasticity; the unique ability of the brain to bypass injured areas and to re-teach the damaged brain how to regain more normal function.

I believe music therapists play an important, but often overlooked, role in helping patients cope with the effects of illness, pain, loneliness and fearful apprehension about the future of their health. Unfortunately all too often, music therapy is not reimbursed by insurance companies and many hospitals, therefore, do not use this modality of patient care. Other traditional forms of therapy, i.e. physical/occupational/speech etc., have demonstrated they are a cost effective addition to patient recovery. Insurance companies are therefore willing to compensate hospitals for these services and they generate income for the medical facility.

Music therapy professionals MUST produce evidence that their services provide a cost effective addition to other forms of care. THAT MEANS GOOD SCIENTIFIC RESEARCH must be carried out to demonstrate what we all believe. It is not enough to show a reduction in pain and anxiety with music therapy. Research must show a reduction in length of stay or improved patient outcomes for patients such as those sustaining head trauma/post traumatic stress disorder etc. Only then will insurance companies agree to reimburse hospitals/nursing homes for music therapy services; and more medical facilities will be able to incorporate music therapy as a standard of care. Then patients will receive the services we all know will benefit them. May God Speed your efforts on behalf of the patients you serve.

 

The Knot at the End of the Rope

Submitted by Florence Cohen

 end of the rope

My father lived life with strength and determination.  As complications associated with diabetes diminished his physical capabilities, his indomitable will to combat the disease fervently hammered away.  A WW II Navy Seal, Joe Altman lived by a simple rule; when you get to the end of your rope, tie a knot and hang on.

When dementia struck hard and violently broke through Dad’s spirit, music therapist Alessandro Ricciarelli entered his life.  Armed with six strings attached to a wooden guitar, Alessandro surpassed the capabilities of the most sophisticated medical technology.

Each time Alessandro walked through the door, an invisible wall formed around them, creating a comfortable space in which a trusting bond of friendship would quickly form.  Alessandro brought with him happiness, encouragement, added a sense of meaning and purpose to Dad’s life, and, in doing so, resuscitated his spirit.  In a most gentle way, Alessandro treated Joe with the utmost dignity and respect.

Alessandro’s dedication was not limited to actual hospital visits; he took personal time to learn songs that were relevant to Dad and made recordings of their sessions together to be enjoyed at any given time.  Alessandro appreciated the power of positive thoughts, and with his kind words, a smile, compassion, and a true desire to make Dad happy, he encouraged Dad’s participation, leaving us with cherished memories of my father having one last chance to express himself through music, smiling and enjoying life.

In a very real sense, Alessandro was that knot at the end of the rope on to which Dad grabbed.  I am forever grateful to the Music Therapy Program at NYU Medical Center, more specifically, to Mr. Alessandro Ricciarelli.

Obviously music therapy works..at least in some cases with some people but then not all therapy works all the time in all cases.

I will be posting other blogs on the subject of mental illness and the therapies available to those afflicted.  Just know there is help available.  It may take some time to find it and it may turn out to be a combination of therapy or therapies and/or medication.  There is help but you have to find it. It is up to you to seek it out because it is very unlikely a miracle will knock on your door and say, “May I come in?  I’m the cure for all that ails you.”  If that does happen, don’t let them in.  It won’t be real.

Bob informal 3Bob 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 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. JAgain, write to me and ask for “Life Pass It On.”  I will email it to you immediately.  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  also 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 I will send the show and book ASAP.

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  (OTI).  The more members we get the greater our clout with decision makers.

En Espanol

Bob Aronson de Newheart de Bob es un centro receptor de trasplante 2007, el fundador de la Iniciativa de Facebook cerca de 3.000 miembros de trasplantes de órganos y el autor de la mayoría de estos blogs de donación / trasplante.

Usted puede dejar un comentario en el espacio proporcionado o por correo electrónico a 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 se convence a una persona para ser un donante de órganos y tejidos puede salvar o positivamente afectará a más de 60 vidas. Algunas de esas vidas puede haber gente que conoces y amas.

Por favor, vea nuestro video musical “Dawn Anita The Gift of Life” en YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

Si quieres correr la voz personal sobre la donación de órganos, tenemos otra presentación de PowerPoint para su uso gratuito y sin permiso. JAgain, escribir a mí y pedir “Life Pass It On.” Voy a enviar por correo electrónico a usted inmediatamente Esto no es un espectáculo independiente,. Necesita un presentador, pero es producido profesionalmente y objetivamente sonido Si usted decide utilizar el archivo. demuestro que también le enviará una copia gratuita de mi libro electrónico, “Cómo obtener un Standing” O “que le ayudará con habilidades de presentación. Sólo escribo bob@baronson.org y enviaré el programa y el libro lo antes posible.

Además … hay más información sobre este sitio de blogs de otros temas de donación / trasplante. Además, nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos (OTI). Cuantos más miembros que tienen la mayor influencia en nuestra toma de decisiones.

Immunization (Vaccinations) Can Prevent the Need for a Transplant.


By Bob Aronson

We could significantly cut the demand for transplantable organs if we took better care of our bodies.  The supply/demand concept is as applicable to human organs as it is to the sale of cars.  But, with cars we can meet increased demand by building more cars.  Unfortunately we can’t build more organs and we can’t seem to persuade the 60% of the population that are not organ donors to sign up so the answer is …. reduce the demand.   That goal, though, is much easier said than done.   To accomplish it will take a major change in attitude and behavior.heart full of love

According to a health study published in The Atlantic  in January of this year the U.S. is dead last among 17 “advanced” nations {http://tinyurl.com/agglg8s}.   The results surprised even the researchers. To their alarm, they said, they found a “strikingly consistent and pervasive” pattern of poorer health at all stages of (American) life, from infancy to childhood to adolescence to young adulthood to middle and old age. Compared to people in other developed nations, Americans die far more often from injuries and homicides. We suffer more deaths from alcohol and other drugs, and endure some of the worst rates of heart disease, lung disease, obesity, and diabetes.

downward arrow

The study goes on to say, “Among the most striking of the report’s findings are that, among the countries studied, the U.S. has:

The report does reveal bright spots: Americans are more likely to survive cancer or stroke, and if we live to age 75 we’re likely to keep on living longer than others. But these advances are dwarfed by the grave shortcomings.”

Most of our ills are brought on by a lifestyle in which we eat wrong, don’t exercise,  and abuse our bodies in a million other ways, like smoking and drinking too much.   We can prevent many of the ills that kill us but as a nation we sure don’t try very hard.  One of the simple, readily available precautions is immunization.  But, because of rumors, distortions and outright lies many have become suspicious of vaccinations and not only refuse to get them but also refuse deny their children what could be life saving measures.

Here are just a couple of the myths surrounding vaccinations.

Myth 1: Better hygiene and sanitation will make diseases disappear – vaccines are not necessary. FALSE

Myth 2: Vaccines have several damaging and long-term side-effects that are yet unknown. Vaccination can even be fatal. FALSE

Myth 3: The combined vaccine against diphtheria, tetanus and pertussis (whooping cough) and the vaccine against poliomyelitis cause sudden infant death syndrome. FALSE

We’ll address those myths and seven others shortly but first…here’s what the U.S Centers  for Disease Control (CDC) says about the issue.

centers for disease controlDiseases are becoming rare due to vaccinations.

It’s true, some diseases (like polio and diphtheria) are becoming very rare in the U.S. Of course, they are becoming rare largely because we have been vaccinating against them. But it is still reasonable to ask whether it’s really worthwhile to keep vaccinating.

It’s much like bailing out a boat with a slow leak. When we started bailing, the boat was filled with water. But we have been bailing fast and hard, and now it is almost dry. We could say, “Good. The boat is dry now, so we can throw away the bucket and relax.” But the leak hasn’t stopped. Before long we’d notice a little water seeping in, and soon it might be back up to the same level as when we started.

Keep immunizing until disease is eliminated.

Unless we can “stop the leak” (eliminate the disease), it is important to keep immunizing. Even if there are only a few cases of disease today, if we take away the protection given by vaccination, more and more people will be infected and will spread disease to others. Soon we will undo the progress we have made over the years.

serum and syinge

Japan reduced pertussis vaccinations, and an epidemic occurred.

In 1974, Japan had a successful pertussis (whooping cough) vaccination program, with nearly 80% of Japanese children vaccinated. That year only 393 cases of pertussis were reported in the entire country, and there were no deaths from pertussis. But then rumors began to spread that pertussis vaccination was no longer needed and that the vaccine was not safe, and by 1976 only 10% of infants were getting vaccinated. In 1979 Japan suffered a major pertussis epidemic, with more than 13,000 cases of whooping cough and 41 deaths. In 1981 the government began vaccinating with acellular pertussis vaccine, and the number of pertussis cases dropped again.

What if we stopped vaccinating?

So what would happen if we stopped vaccinating here? Diseases that are almost unknown would stage a comeback. Before long we would see epidemics of diseases that are nearly under control today. More children would get sick and more would die. Many if not all of these diseases can lead to organ failure or the need for tissue.  This is a partial list of diseases that can be prevented by vaccines:

Why are vaccines under fire? Some experts say it’s due to their success. “It’s the natural evolution of a vaccine program,” says Paul Offit, M.D., chief of infectious diseases and director of the Vaccine Education Center at the Children’s Hospital of Philadelphia. “As you eliminate the diseases, people are not as compelled to get vaccines.” Adds Kathryn Edwards, M.D., spokesperson for the National Network for Immunization Information, “Many diseases are out of sight and then out of mind. So people don’t see the value of vaccines.”

Yet high immunization rates are necessary to keep diseases like measles and even polio from making a comeback.

Here are the ten myths/truths about vaccines from the World Health Organization.  This list is supported and disseminated by nearly every nation and medical association in the world including the United States http://www.who.int/features/qa/84/en/

Q: What are some of the myths – and facts – about vaccination?

A: Myth 1: Better hygiene and sanitation will make diseases disappear – vaccines are not necessary. FALSE

Fact 1: The diseases we can vaccinate against will return if we stop vaccination programmes. While better hygiene, hand washing and clean water help protect people from infectious diseases, many infections can spread regardless of how clean we are. If people are not vaccinated, diseases that have become uncommon, such as polio and measles, will quickly reappear.

Myth 2: Vaccines have several damaging and long-term side-effects that are yet unknown. Vaccination can even be fatal. FALSE

Fact 2: Vaccines are very safe. Most vaccine reactions are usually minor and temporary, such as a sore arm or mild fever. Very serious health events are extremely rare and are carefully monitored and investigated. You are far more likely to be seriously injured by a vaccine-preventable disease than by a vaccine. For example, in the case of polio, the disease can cause paralysis, measles can cause encephalitis and blindness, and some vaccine-preventable diseases can even result in death. While any serious injury or death caused by vaccines is one too many, the benefits of vaccination greatly outweigh the risk, and many, many more injuries and deaths would occur without vaccines.

Myth 3: The combined vaccine against diphtheria, tetanus and pertussis (whooping cough) and the vaccine against poliomyelitis cause sudden infant death syndrome. FALSE

Fact 3: There is no causal link between the administering of the vaccines and sudden infant death, however, these vaccines are administered at a time when babies can suffer sudden infant death syndrome (SIDS).,. In other words, the SIDS deaths are co-incidental to vaccination and would have occurred even if no vaccinations had been given. It is important to remember that these four diseases are life-threatening and babies who are not vaccinated against them are at serious risk of death or serious disability.

Myth 4: Vaccine-preventable diseases are almost eradicated in my country, so there is no reason to be vaccinated. FALSE

Fact 4: Although vaccine preventable diseases have become uncommon in many countries, the infectious agents that cause them continue to circulate in some parts of the world. In a highly inter-connected world, these agents can cross geographical borders and infect anyone who is not protected. In western Europe, for example, measles outbreaks have occurred in unvaccinated populations in Austria, Belgium, Denmark, France, Germany, Italy, Spain, Switzerland and the United Kingdom since 2005. So two key reasons to get vaccinated are to protect ourselves and to protect those around us. Successful vaccination programmes, like successful societies, depend on the cooperation of every individual to ensure the good of all. We should not rely on people around us to stop the spread of disease; we, too, must do what we can.

Myth 5: Vaccine-preventable childhood illnesses are just an unfortunate fact of life. FALSE

Fact 5: Vaccine preventable diseases do not have to be ‘facts of life’. Illnesses such as measles, mumps and rubella are serious and can lead to severe complications in both children and adults, including pneumonia, encephalitis, blindness, diarrhoea, ear infections, congenital rubella syndrome (if a woman becomes infected with rubella in early pregnancy), and death. All these diseases and suffering can be prevented with vaccines. Failure to vaccinate against these diseases leaves children unnecessarily vulnerable.

Myth 6: Giving a child more than one vaccine at a time can increase the risk of harmful side-effects, which can overload the child’s immune system. FALSE

Fact 6: Scientific evidence shows that giving several vaccines at the same time has no adverse effect on a child’s immune system. Children are exposed to several hundred foreign substances that trigger an immune response every day. The simple act of eating food introduces new antigens into the body, and numerous bacteria live in the mouth and nose. A child is exposed to far more antigens from a common cold or sore throat than they are from vaccines. Key advantages of having several vaccines at once is fewer clinic visits, which saves time and money, and children are more likely to complete the recommended vaccinations on schedule. Also, when it is possible to have a combined vaccination, e.g. for measles, mumps and rubella, that means fewer injections.

Myth 7: Influenza is just a nuisance, and the vaccine isn’t very effective. FALSE

Fact 7: Influenza is much more than a nuisance. It is a serious disease that kills 300 000-500 000 people worldwide every year. Pregnant women, small children, elderly people with poor health and anyone with a chronic condition, like asthma or heart disease, are at higher risk for severe infection and death. Vaccinating pregnant women has the added benefit of protecting their newborns (there is currently no vaccine for babies under six months). Vaccination offers immunity to the three most prevalent strains circulating in any given season. It is the best way to reduce your chances of severe flu and of spreading it to others. Avoiding the flu means avoiding extra medical care costs and lost income from missing days of work or school.

Myth 8: It is better to be immunized through disease than through vaccines. FALSE

Fact 8: Vaccines interact with the immune system to produce an immune response similar to that produced by the natural infection, but they do not cause the disease or put the immunized person at risk of its potential complications. In contrast, the price paid for getting immunity through natural infection might be mental retardation from Haemophilus influenzae type b (Hib), birth defects from rubella, liver cancer from hepatitis B virus, or death from measles.

Myth 9: Vaccines contain mercury which is dangerous. FALSE

Fact 9: Thiomersal is an organic, mercury-containing compound added to some vaccines as a preservative. It is the most widely-used preservative for vaccines that are provided in multi-dose vials. There is no evidence to suggest that the amount of thiomersal used in vaccines poses a health risk.

Myth 10: Vaccines cause autism FALSE

Fact 10: The 1998 study which raised concerns about a possible link between measles-mumps-rubella (MMR) vaccine and autism was later found to be seriously flawed, and the paper has been retracted by the journal that published it. Unfortunately, its publication set off a panic that led to dropping immunization rates, and subsequent outbreaks of these diseases. There is no evidence of a link between MMR vaccine and autism or autistic disorders.

The steps listed here are legitimate and proven.  Also legitimate and proven is the fact that organ and tissue transplants save lives.  A new heart saved mine.  If you  do nothing else help increase the supply of organs by being an advocate.  Talk to family and friends about organ donation.  The process is simple and fast…it only takes minutes.  You can do it by adding “Organ Donor” to your drivers license or by going to www.donatelife.net.  Sign up and then tell your family.  That’s all there is to it.  One organ/tissue donor can save or positively affect up to 60 lives.

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 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.

En Espanol

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, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

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.

We Are Killing Our Own Organs — 30 Worst Foods, 100 Best.


The key to solving the shortage of transplantable organs is to eliminate the demand for them.

“We have met the enemy and he is us,” has become a trite expression but that doesn’t make it any less true.  We are our own worst enemies.   The numbers are staggering.  We are killing ourselves in four ways:

  1. We drink too much alcohol
  2. We smoke too much
  3. We eat too much of the wrong food

Let’s look at he facts.

  1. 22.5% are current smokers, resulting in significant health problems and associated costs.
  2. 8.5% of Americans abuse alcohol or are alcohol dependent,.
  3.  Approximately 30.4% of adults in the United States are obese,

The estimated annual medical expenditures associated with alcohol abuse total $26.3 billion.  Organs most commonly affected are the lungs, kidneys, pancreas, heart and liver.

Second,  smoking.  Medical costs caused by cigarette smoking exceed $75 billion a year.  According to the Centers for Disease Control in Atlanta, Georgia, Smoking harms nearly every organ of the body and causes many diseasesCigarette smoking remains the single most-common preventable cause of death in the United States,  The adverse health effects from cigarette smoking account for more than 440,000 deaths, or nearly one of every five deaths, each year in the United States.

Finally obesity combined with eating the wrong foods.  A good number of these people experience some organ failure.  The direct medical costs for obesity have been approximated at $51.6 billion per year. The organs most often affected are the heart, kidneys and pacnreas.   http://abcnews.go.com/Health/PictureOfHealth/story?id=4286176&page=1

This blog is about preventing organ failure  and one way to do that is to be a little more careful about how much we eat and what we decide to consume.   There are two lists here, 1) the worst foods and 2) the best foods.

Top 30 Worst Foods in America (from Food Matters

Note from Bob’s Newheart.  While Food Matters lists 30 I am only listing ten.  You can click on their link for the rest of the story)

Today’s food marketers have loaded many of their offerings with so much fat, sugar, and sodium that eating any of the foods in this article on a daily basis could destroy all your hard work and best intentions of eating healthy. Beware! This list is brought to you by Eat This Not That and Men’s Health. http://foodmatters.tv/articles-1/the-30-worst-foods-in-america-beware

1. Worst Meal in America

Carl’s Jr. Six Dollar Guacamole Bacon Burger with Medium Natural Cut Fries and 32-oz Coke

1,810 calories – 92 g fat (29.5 g saturated, 2 g trans) – 3,450 mg sodium

Of all the gut-growing, heart-threatening, life-shortening burgers in the drive-thru world, there is none whose damage to your general well-being is as potentially catastrophic as this. A bit of perspective is in order: This meal has the caloric equivalent of 9 Krispy Kreme Original Glazed doughnuts, the saturated fat equivalent of 30 strips of bacon, and the salt equivalent of 10 large orders of McDonald’s French fries!

2. Worst Drink

Baskin-Robbins Large Chocolate Oreo Shake

2,600 calories – 135 g fat (59 g saturated, 2.5 g trans) – 1,700 mg sodium – 263 g sugars

We didn’t think anything could be worse than Baskin-Robbins’ 2008 bombshell, the Heath Bar Shake. After all, it had more sugar (266 grams) than 20 bowls of Froot Loops, more calories (2,310) than 11 actual Heath Bars, and more ingredients (73) than you’ll find in most chemistry sets. Yet the folks at Baskin-Robbins have shown that when it comes to making America fat, they’re always up to the challenge. The large Chocolate Oreo Shake is soiled with more than a day’s worth of calories and 3 days’ worth of saturated fat. Worst of all, it takes less than 10 minutes to sip through a straw.

3. Worst Ribs

Outback Steakhouse Baby Back Ribs

2,580 calories

Let’s be honest: Ribs are rarely served alone on a plate. When you add a sweet potato and Outback’s Classic Wedge Salad, this meal is a 3,460-calorie blowout. (Consider that it takes only 3,500 calories to add a pound of fat to your body. Better plan for a very, very long “walkabout” when this meal is over!)

4. Worst Pizza
Uno Chicago Grill Classic Deep Dish Individual Pizza

2,310 calories – 165 g fat (54 g saturated) – 4,920 mg sodium – 120 g carbs

The problem with deep dish pizza (which Uno’s knows a thing or two about, since they invented it back in 1943) is not just the extra empty calories and carbs from the crust, it’s that the thick doughy base provides the structural integrity to house extra heaps of cheese, sauce, and greasy toppings. The result is an individual pizza with more calories than you should eat in a day and more sodium than you would find in 27 small bags of Lays Potato Chips. Oh, did we mention it has nearly 3 days’ worth of saturated fat, too? The key to success at Uno’s lies in their flatbread pizza.

5. Worst Mexican Dish


Chili’s Fajita Quesadillas Beef with Rice and Beans, 4 Flour Tortillas, and Condiments

2,240 calories – 92 g fat (43.5 g saturated) – 6,390 mg sodium – 253 g carbs

Since when has it ever been a smart idea to combine 2 already calorie- and sodium-packed dishes into one monstrous meal? This confounding creation delivers nearly a dozen Krispy Kreme original glazed doughnuts worth of calories, the sodium equivalent of 194 saltine crackers, and the saturated fat equivalent of 44 strips of bacon. Check please.

6. Worst Seafood Dish


Romano’s Macaroni Grill Parmesan Crusted Sole

2,190 calories – 141 g fat (58 g saturated) – 2,980 mg sodium – 145 g carbs

Fish is normally a safe bet, but this entrée proves that it’s all in the preparation. If you fry said fish in a shell of cheese, be prepared to pay the consequences. Here that means meeting your daily calorie, fat, saturated fat, and sodium intake in one sitting.

7. Worst Chinese Dish

P.F. Chang’s Combo Lo Mein

1,968 calories – 96 g fat (12 g saturated) – 5,860 mg sodium

Lo mein is normally looked at as a side dish, a harmless pile of noodles to pad your plate of orange chicken or broccoli beef. This heaping portion (to be fair, Chang’s does suggest diners share an order) comes spiked with chicken, shrimp, beef, and pork, not to mention an Exxon Valdez-size slick of oil. The damage? A day’s worth of calories, 1 ½ days’ worth of fat, and 2 ½ days’ worth of sodium. No meat-based dish beats out the strip.

8. Worst Appetizer
On the Border Firecracker Stuffed Jalapenos with Chili con Queso

1,950 calories – 134 g fat (36 g saturated) – 6,540 mg sodium

Appetizers are the most problematic area of most chain-restaurant menus. That’s because they’re disproportionately reliant on the type of cheesy, greasy ingredients that catch hungry diners’ eyes when they’re most vulnerable—right when they sit down. Seek out lean protein options like grilled shrimp skewers or ahi tuna when available; if not, simple is best—like chips and salsa.

9. Worst Burger


Chili’s Smokehouse Bacon Triple Cheese Big Mouth Burger with Jalapeno Ranch Dressing

1,901 calories – 138 g fat (47 g saturated) – 4,201 mg sodium

Any burger whose name is 21 syllables long is bound to spell trouble for your waistline. This burger packs almost an entire day’s worth of calories and 2 ½ days’ worth of fat. Chili’s burger menu rivals Ruby Tuesday’s for the worst in America, so you’re better off with one of their reasonable Fajita Pitas to silence your hunger.

10. Worst Sandwich
Quizno’s Large Tuna Melt

1,760 calories – 133 g fat (26 g saturated, 1.5 g trans) – 2,120 mg sodium

In almost all other forms, tuna is a nutritional superstar, so how did it end up as the headliner for America’s Worst Sandwich? Blame an absurdly heavy hand with the mayo the tuna is mixed with, along with Quiznos’ larger-than-life portion sizes. Even though they’ve managed to trim this melt down from the original 2,000-plus calorie mark when we first tested it, it still sits squarely at the bottom of the sandwich ladder.

Now you know what to avoid, and we urge you to click on the Food Matters link to read the whole list.  So, if you can’t eat any of the aforementioned items what do you eat?  There’s plenty to choose from.   Health Life lists 100 and you can read them all by clicking on their link. Here are their top ten.

http://www.dwlz.com/HealthyLife/healthy50.html

THE 100 HEALTHIEST FOODS

Fruit

Fat/Calorie Breakdown

Body Benefits

(1) Apples

1 medium apple:
81 calories, 0 g fat

An apple’s 3 g of fiber help you meet your fiber goal of 20 g to 30 g daily.  High-fiber diets can lower heart disease risk.

(2) Apricots

3 apricots:
51 calories, 0 g fat

A good source of beta-carotene (which is converted to vitamin A by the body), providing the equivalent of 35% of the RDA for vitamin A

(3) Bananas

1 medium:
105 calories, 0 g fat

Bananas are a great source of potassium, which plays a key role in heart health and muscle function.  Plus each one has 2 g of fiber.

(4) Blackberries

1 cup:
74 calories, 0 g fat

This fruit boasts a whopping 10 g of fiber in a single cup.

(5) Blueberries

1 cup:
81 calories, 0 g fat

Blueberries help prevent and treat bladder infections by making it hard for bacteria to stick to urinary tract walls.

(6) Cantaloupe

1 cup, cubed:
84 calories, 1 g fat

An antioxidant double whammy, with 68 mg of vitamin C and enough beta-carotene to cover 65% of your daily vitamin A quota.

(7) Cherries

1 cup:
84 calories, 1 g fat

A good source of perillyl alcohol, which helps prevent cancer in animals.  Heart-protective anthocyanins give cherries their color.

(8) Cranberry
juice

1 cup:
144 calories, 0 g fat

Fights bladder infections the same way blueberries do.

(9) Grapefruits

1/2 fruit:
39 calories, 0 g fat

A good source of vitamin C and a compound called naringenin, which helps suppress tumors in animals.

(10) Purple grapes
and juice

1 cup seedless:
113 calories, 9 g fat

Offer three heart-guarding compounds:  flavonoids, anthocyanins and resveratrol.  (Green grapes are not rich in them)

If you insist on eating meat there are some good choices you can make…we’ll jump ahead on the list to give you a sneak preview.

74) Beef 3 oz, cooked:
150 to 280 calories,
5 g to 20 g fat
Beef is a good source of both CLA and iron, but since it’s also high in saturated fat, have it no more than three times a week.
(75) Chicken,
without skin
3 oz, cooked:
162 calories, 6 g fat
Remove the skin and you’ve got an excellent, low fat source of protein.  And 3 oz provides 38% of the RDA for the B vitamin niacin.
(76) Lamb 3 oz, cooked, trimmed
of fat:
175 calories, 8 g fat
Lamb, like beef, is also a good source of CLA.  Ditto beef’s saturated fat warning and weekly consumption recommendation.
(77) Lean
pork
3 oz, cooked, trimmed
of fat:
140 calories, 4 g fat
Fat-trimmed pork tenderloin has one-third less fat than even lean beef.  And it boasts 71% of the RDA for thiamine.

If Healthy Life doesn’t offer you enough good food ideas, here are some other excellent resources for you to peruse.

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 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.

En Espanol

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, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

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.

Can’t Afford Your Meds? Here Are Some Resources


By Bob Aronson

We have a two-fold national disgrace here in America.  One is the high cost of prescription drugs and the other is that many people don’t take their medications because they can’t afford them and some have to choose between buying medication or food.

We hope that this blog helps you find the financial or other assistance you need to be able to take your meds, get well and also have food on the table.

While they no doubt have an axe to grind and a vested interest Insure.com http://tinyurl.com/cnchrm9 has its facts right.  Here’s what they say:

·         More than half (54 percent) of Americans say they currently take prescription medicines. According to a March 2008 report, “The Public on Prescription Drugs and Pharmaceutical Companies,” issued jointly by USA Today, the Kaiser Family Foundation and the Harvard School of Public Health, one in five Americans are currently taking four or more prescription drugs on a daily basis.

 ·       The report shows that a significant portion of those with prescriptions have difficulty affording them. Four in 10 adults (41 percent) say it is at least somewhat of a problem for their family to pay for prescription drugs they need, including 16 percent who say it is a serious problem. That leads to personal strategies for cutting back: Three in 10 (29 percent) say that they have not filled a prescription because of the cost in the last two years, and 23 percent say they have cut pills in half or skipped doses in order to make medication last longer.

Obviously there is a problem but it isn’t just one dreamed up by insurance companies to sell more policies, I hear similar stories every day on my Facebook group Organ Transplant Initiative (OTI).  Some people are not taking their meds and as a result their health is suffering.  That’s just not right. 

My last blog about the high cost of prescriptions includes one example of a drug for a rare disease that cost $250,000 a dose.  Cancer though is not a rare disease and some cancer drugs cost as much as $10,000 a dose.  Few can afford medicine that costs that much and most have no idea where to go for help. 

I wish I could report that you don’t have to go without your drugs because you can’t afford them.  Unfortunately, while there is help available, not everyone will get it but you’ve got to try.  I took the liberty of doing some research to find that help and even though I know there are resources I missed I’m hoping that those I have attached here will be of some help to someone.

If your doctor prescribes an expensive drug and you’re uninsured or can’t afford the co-pays, don’t despair. So-called patient-assistance programs, many of them run by pharmaceutical companies, are available to help you get the drugs you need.

Each patient-assistance program sets its own eligibility requirements. The income limits vary widely, from 100% of the federal poverty guidelines (which in 2009 stood at $22,050 for a family of four) to over 300% of the guidelines, according to Rich Sagall, MD, president of NeedyMeds, an online clearinghouse of information for people who cannot afford medicine.

Most patient-assistance programs require the applicant to be an American citizen or legal resident, and most are restricted to the uninsured. “Most programs help people with no insurance, but some will help the underinsured,” says Dr. Sagall. For instance, some companies will provide medications to patients who have reached the limit of their prescription insurance; others help people on Medicare Part D, the federal drug-subsidy program. In general, however, if you qualify for government-funded programs (such as Medicaid), you probably will not be eligible for most patient-assistance programs.

NeedyMeds is an excellent website and resource http://www.needymeds.org/ this site should be your first stop in a search for assistance.

Forbes magazine offers some great information on specific drugs. http://tinyurl.com/kmjxf5n

Forbes…when patients can’t afford medication http://www.forbes.com/sites/larryhusten/2011/08/12/guest-post-when-patients-cant-afford-a-medication/

Here’s a form you can fill out to get help with specific prescriptions. The RX connection….fill out the form http://therxconnection.com/

And…of course, there are always scams and the Federal trade commission is a good resource to make sure that the help you are offered is real.  http://tinyurl.com/lxwvfra

One more point and one more resource.  OTI is a donation/transplantation support group so we would be remiss if we didn’t offer you some resources specifically focused on just us. 

Financial Assistance for Living Donors and Transplant Recipients

The following organizations may be able to provide some financial or related assistance to transplant candidates, recipients, living donors and potential living donors.

 This list is provided as a guide only; individuals will need to contact these organizations to determine if help is available for their particular situation.  Donors and recipients should also ask their transplant center for assistance with financial issues.

 

Air Care Alliance

1515 East 71st Street, Suite 312

Tulsa, Oklahoma 74136

Office Phone and Help Line: (918) 745-0384

Toll Free Help Line

Number: (888) 260-9707

Email:

mail@aircareall.org

www.aircareall.org

 

The Air Care Alliance is a nationwide league of humanitarian flying organizations whose volunteer

pilots are dedicated to community service. Volunteer pilots perform public benefit flying for health care, patient transport, disaster relief, environmental support, and other missions of public service. Air Care Alliance listed groups may be able to provide free or low cost flights for medical evaluation and surgery for living donors and recipients. Please see the website for details.

 

American Kidney Fund

6110 Executive Blvd., Suite 1010

Rockville, MD 20852

Phone: (800) 638-8299

Email:

helpline@kidneyfund.org

www.akfinc.org

 

The American Kidney Fund provides limited grants to needy dialysis patients, kidney transplant recipients and living kidney donors to help cover the costs of health-related expenses, transportation and medication. They provide information and support for kidney donation and transplantation, as well as general education and information on kidney disease.

 

American Liver Foundation

75 Maiden Lane, Suite 603

New York, NY 10038-4810

Phone: (800) 465-4837,

(800) GOLIVER

Email:

webmail@liverfoundation.org

www.liverfoundation.org

 

The American Liver Foundation, a national voluntary health organization, has established a Transplant Fund to assist patients and families in fundraising efforts for liver transplantation. The Foundation acts as a trustee of funds raised on behalf of patients to help pay for medical care and associated transplantation expenses, which may include expenses related to a living liver donation.

 

American Organ Transplant Association

3335 Cartwright Road

Missouri City, TX 77459

Contact: Ellen Gordon Woodal

l, Executive Director

Phone: (281) 261-2682

Fax: (281) 499-2315

www.a-o-t-a.org

 

The American Organ Transplant Association is a private, non-profit group that provides free or reduced airfare and bus tickets to transplant recipients and their families. AOTA publishes a newsletter. Patients interested in AOTA’s services must be referred by their physician. The association also assists people with setting up trust funds and fund raising. No administrative fee is charged.

Angel Flight

American Medical Support Flight Team

P.O. Box 17467

Memphis, TN 38187-0467

1-877-858-7788 Toll Free

1-901-332-4034 Local

1-901-332-4036 Fax

www.angelflightamerica.org

 

Angel Flight provides free air transportation on private aircraft for needy people with healthcare problems and for healthcare agencies, organ procurement organizations, blood banks and tissue banks. No fees of any kind. Volunteers serving the public since 1983.

 

Children’s Organ Transplant Association

2501 COTA Drive

Bloomington, IN 47403

Phone: (800) 366-2682

Email:

cota@cota.org

www.cota.org

 

COTA is a national, non-profit agency that raises funds for individuals and families to assist with transplant, living donor, and related expenses. They work with some adults as well as children. All funds raised go to the individual; no administrative fees are collected.

 

Georgia Transplant Foundation

3125 Presidential Parkway

Suite 230

Atlanta, GA 30340

Phone: (770) 457-3796

Toll-Free: (866) 428-9411

Fax: (770) 457-7916

Contact them online at:

http://www.gatransplant.org/ContactUs.aspx

 

The mission of the Georgia Transplant Foundation is to help meet the needs of organ transplant candidates, living donors, recipients and their families by providing information and education regarding organ transplantation, granting financial assistance and being an advocate for sustaining and enriching lives every day. The Georgia Transplant Foundation supports the fundamental basis of altruism for living donation. The goal of the Living Donor Program is to provide assistance to living donors for financial hardships created as a result of their donation.  Either the living donor or the

transplant recipient must be a resident of Georgia. For more details, visit

http://www.gatransplant.org/FinancialAssistance/LivingDonor.aspx

 

.

National Living Donor Assistance Center (NLDAC)

2461 S. Clark St

reet, Suite 640

Arlington, VA 22202

Phone: 703.414.1600

Fax: 703.414.7874

Email:

NLDAC@livingdonorassistance.org

www.livingdonorassistance.org

 

If you know someone who is considering becoming a living organ donor (kidney, lung, liver) the National Living Donor Assistance Center (NLDAC) may be able to pay for up to $6,000 of the living donor’s (and his or her companion’s) travel and lodging expenses. The transplant center where the recipient is waiting will apply on the living donor’s behalf. Visit the NLDAC Web site at http://www.livingdonorassistance.org for more details and to read about general eligibility requirements and how the program works.

 

Help Hope Live

(formerly the National Transplant Assistance Fund )

150 N. Radnor Chester Rd.
Suite F-120
Radnor, PA 19087

Toll-free:

800.642.8399

Web:

http://www.helphopelive.org

Help Hope Live has over 20 years’ experience empowering people to raise money in their communities to cover uninsured medical expenses.

 

Nielsen Organ Transplant Foundation

580 W. 8th St.

Jacksonville, FL 32209

(904) 244-9823

Email:

nielsen@notf.org

www.notf.org

 

The Nielsen Organ Transplant Foundation provides financial assistance to pre- and post-transplant patients in the Northeast Florida area.

 

National Foundation for Transplants

1102 Brookfield Road

Suite 200

Memphis, TN 38119

Toll Free: (800) 489-3863

Local: (901) 684-1697

Fax: (901) 684-1128

E-mail:

info@transplants.org

www.transplants.org

 

The National Foundation for Transplants provides financial assistance & advocacy to transplant candidates and recipients with significant costs not covered by insurance.

 

Transplant Recipients International Organization, Inc.

2100 M Street, NW, #170-353

Washington, DC 20037-1233

Email:

info@trioweb.org

www.trioweb.org

 

The TRIO/United Airlines Travel Program Isa cooperative arrangement between TRIO and the United Airlines Charity Miles Program. It provides TRIO members and family members with cost-free air transportation when travel is transplant-related. Visit http://www.trioweb.org/resources/united.html for more information.

 

Bob’s Newheart encourages readers to comment on each of our blogs and to add resources that they find in their own searches. 

 

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 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.

En Espanol

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, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

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.

 

 

 

 

 

The Answers to Most Post Transplant Questions


If you are a regular Bob’s NewHeart reader you know I have posted hundreds of articles on donation/transplantation issues and you might think that by now I, myself, would be a pretty good source of information.  Well, whenever I let myself think that, even for a second, I stumble across something new that reminds me that I am only a reporter, not a medical expert.

Your Questions Answered

Some of the most common questions I hear from readers include, ”What can I expect after my transplant?  What will life be like? Will I be able to resume a normal life right away? Will there be complications?  Well, it’s hard to find the answers to all those questions in one place but today’s post comes about as close as any I’ve seen.

This is a great resource for both pre and post organ/tissue transplant patients.  Please read it and pass it on.  It is a reprint from the American Society of Transplantation (AST) publication “Healthy Transplant.”  Let them know you appreciate their efforts on your behalf.

Some of the graphs and charts may be too small for you to read but if you click on the link you can enlarge and study them.

http://www.healthytransplant.com/health_maintenance/health_after_transplantation.aspxHealth After Transplantation

KEEPING A HEALTHY OUTLOOK ON LIFE

After an organ transplant, there is hope for the future. However, there are a number of health concerns that you will face. For example, there is the chance that your new organ will not always function as well as it should. Transplant recipients also have a higher risk of developing certain conditions such as high blood pressure, high blood lipid levels, diabetes, kidney problems, liver problems, and bone disease. Infection and cancer are also conditions you need to keep in mind.

Some conditions can affect any transplant recipient and some conditions are specific to the type of organ transplanted.

 

 

 

 

 


Healthy Transplant Images

CARING FOR YOUR NEW ORGAN

Lab Tests for Measuring Organ Function

It is important to keep all of your scheduled checkups and lab appointments for monitoring organ function. Testing allows your transplant team to monitor the status of your transplant, detect rejection early, and start effective therapy right away.

Common tests for checking organ function are listed below:

  • Liver function tests — Blood tests are used to monitor liver function (e.g. albumin); damage to liver cells (e.g., alanine transaminase [ALT], Aspartate transaminase [AST]) and some with conditions linked to the path by which bile is produced by the liver (e.g., gamma-glutamyl transferase and alkaline phosphatase)
  • Pulmonary function tests — Tests like spirometry show how well you lungs are working
  • Bronchoscopy — A test that uses an instrument (bronchoscope) to view the airways and diagnose lung disease
  • Chest x-ray
  • Upper and lower gastrointestinal (GI) endoscopies — These evaluations can detect abnormalities of your esophagus, stomach, and intestine
  • Hemodynamic monitoring — Sonar-type echos may be used to detect high blood pressure in your heart and lungs or a catheter may be placed in the heart for periods of six to 12 hours
  • Echocardiogram — Sonar-type echos can show abnormalities in the heart and lungs
  • Electrocardiogram (EKG or ECG) — Asseses the electrical activity within your heart
  • Renal function studies — Your doctor may ask you to collect your urine (usually for 24 hours) to evaluate if your kidneys are working properly. Blood tests such as serum creatinine are performed to measure kidney function
  • Biopsy — A biopsy may also be taken to determine if a rejection episode has occurred. This is done by collecting a small piece of tissue from the organ and examining it under a microscope

OTHER HEALTH ISSUES

Anti-rejection medications increase your risk of developing certain conditions such as infection and cancer. Other side effects of some anti-rejection medications include high blood pressure, diabetes, high blood lipids, kidney disease, heart attack, stroke, and bone disease. Knowing the risks and taking steps now to prevent them is a good way to keep you and your new organ healthy.

HIGH BLOOD PRESSURE

High blood pressure (hypertension) is a common complication in patients who receive a transplant. High blood pressure can damage the arteries and the heart, increasing the risk of a stroke, a heart attack, kidney problems, or heart failure.

For many patients, the cause of hypertension is not known. However, people with kidney disease, diabetes, or high blood pressure before the transplant are at higher risk of high blood pressure after the transplant. Other factors that contribute to high blood pressure after a transplant include a diet high in salt, clogged arteries, high blood lipid levels, smoking, obesity, and some anti-rejection medications such as cyclosporine, tacrolimus, and steroids (prednisone).

Recommended Blood Pressure Levels

People with a blood pressure of 140/90 mm Hg or higher are considered hypertensive. While most transplant recipients should have a blood pressure of 130/80 mm Hg, the ideal blood pressure can vary from person to person. The American Heart Association (AHA) guidelines for the target blood pressure in the general population can also be used as guidelines for organ transplant recipients. Normal blood pressure values for children are based on age, sex and height and in general are much lower than in adults.

Classification

Systolic Pressure (mm Hg)

Diastolic Pressure (mm Hg)

Normal

Less than 120

Less than 80

Prehypertension

120-139

80-89

Stage 1 hypertension

140-159

90-99

Stage 2 hypertension

160 or higher

100 or higher

High blood pressure usually does not cause any symptoms so it is important to have your blood pressure checked by your transplant team at regular follow-up exams. Your transplant team may also want you to monitor your blood pressure closely while at home.

Reducing High Blood Pressure

Making some lifestyle changes can lower your blood pressure and prevent hypertension

Figure. Lifestyle changes for healthier living.

Figure. Lifestyle changes for healthier living.

Sometimes hypertension can be controlled with lifestyle changes such as diet and exercise, but most patients also require medication.

There are a variety of medications for treating and controlling high blood pressure

Figure. Blood pressure medications

Figure. Blood pressure medications

The most commonly prescribed medications include ACE inhibitors, ARBs, calcium channel blockers, beta-blockers, and diuretics. Some of these medications may have interactions with certain anti-rejection medications.

HIGH BLOOD LIPIDS

While lipids (cholesterol and related compounds) in your blood are necessary for good health, too high levels of some lipids can increase your risk of cardiovascular disease, a leading cause of death among transplant recipients. Most transplant recipients develop high blood lipids. Kidney, heart, and liver transplant patients usually display similar elevations in total cholesterol (TC) and low-density lipoprotein (LDL) cholesterol (“bad cholesterol”).

Eating the wrong foods, lack of exercise, and being overweight can increase your risk of developing high levels of LDL cholesterol (“bad cholesterol”), high levels of triglycerides, and low levels of HDL cholesterol (“good cholesterol”). Transplant recipients who are obese, smoke cigarettes, or have high blood pressure are more likely to have high cholesterol. Steroids and some of the other anti-rejection medications, such as cyclosporine, sirolimus, and tacrolimus, can also cause high blood lipid levels.

Recommended Blood Lipid Levels

Be sure to ask your doctor what your cholesterol levels should be. In some instances, transplant recipients can follow target levels of blood lipids recommended in the National Cholesterol Education Program (NCEP) guidelines.

Lipid

Low

Optimal

High

LDL Cholesterol

 

< 100 mg/dL

160-189 mg/dL

HDL Cholesterol

< 40 mg/dL

 

60 mg/dL

Total Cholesterol

 

 

240 mg/dL

Reducing High Blood Lipid Levels

Making healthy lifestyle changes can lower your chances of developing heart disease. You can help lower your blood lipid levels with a proper diet and regular exercise. A diet low in cholesterol and saturated fats may also help reduce your risk of coronary artery disease. In addition to making healthy changes to your diet, exercising for a minimum of 20 to 30 minutes 3 to 4 times a week can also reduce your lipid levels and lower your risk of heart attack or stroke. If you smoke, it is important that you STOP!

If adjustment of your anti-rejection drugs, diet, and exercise are not successful in reducing lipid levels, your doctor may want you to take cholesterol-lowering medications. There are several medications that work to lower blood lipids. The most commonly prescribed medications are called statins, which include atorvastatin (Lipitor®), simvastatin (Zocor®), pravastatin (Pravachol®), fluvastatin (Lescol®), rosuvastatin (Crestor®), and lovastatin (Mevacor®).

If your doctor prescribes a statin, you will need to be monitored for side effects because the risk of side effects is greater when taken with anti-rejection medications. You will also need blood tests to monitor liver and muscle function. Other types of medication that your transplant team might prescribe to treat high blood lipids include bile acid sequestrants, nicotinic acid, fibric acids, and cholesterol absorption inhibitors.

DIABETES

High blood glucose can cause many health problems, including diabetes, heart disease, kidney injury, nerve damage, and eye problems.

Post-transplant diabetes (PTDM) is more common in transplant recipients who have a family history of diabetes as well as those who are overweight, are taking steroids, or have hepatitis C. Diabetes after a transplant is also more common among African Americans and some other ethnic groups such as Native Americans. Other risk factors for PTDM include older age of the recipient.

Controlling Blood Sugar Levels

Most transplant recipients with diabetes can follow the American Diabetes Association (ADA) guidelines. Patients with PTDM should establish a healthy (weight-reducing, if necessary) diet with a structured exercise program. A healthy diet is needed to prevent diabetes or to help control your glucose if diabetes does occur. For all transplant recipients, it is best to eat a healthy diet and exercise regularly to avoid weight gain and reduce the risk of developing high blood glucose or diabetes.

Your transplant coordinator or dietician can help determine your recommended daily calorie intake. Limiting the amount of fats and sugar in your diet can also help to maintain a healthy level of blood glucose.

Treatment Options for Controlling Diabetes

There are several types of medications available for patients with diabetes. Depending on the level of glucose in your blood, treatment with oral hypoglycemic drugs and/or insulin may be indicated. For many transplant recipients, insulin injections or an insulin pump is an option for controlling blood sugar. Or, you may be given an oral medication to control blood glucose levels. Your transplant team will determine which medication is right for you.

KIDNEY DISEASE

Kidney function is often decreased in transplant recipients. This may be caused by a pre-existing condition such as diabetes, high blood pressure, or injury to the kidney before a transplant. Or it may be caused by medications used to prevent rejection after a transplant.

The best way to help prevent kidney disease is to keep your blood pressure and blood glucose under control and to maintain a healthy weight. In addition, regular checkups with blood and urine tests will give your doctor important information for detecting early changes in kidney function and allowing appropriate steps to be taken.

BLOOD VESSELS DISEASE

Transplant recipients have a higher risk of developing blood vessel disease. Some anti-rejection medications increase the risk of high lipid levels, which can clog arteries and restrict the flow of blood to the heart and brain. Deposits — called atherosclerotic plaque — can completely or partially block blood vessels resulting in a myocardial infarction (heart attack) or acute coronary syndromes.

Likewise, a stroke can occur if an artery that supplies blood to the brain becomes blocked. Partial blockage may temporarily reduce the blood supply to the brain. A complete loss of blood supply to the brain results in a stroke.

BONE DISEASE

Bone disease is a problem for many organ transplant recipients. Organ failure before your transplant may cause bones to become thin and brittle (osteoporosis). Other causes of osteoporosis include use of some anti-rejection drugs (corticosteroids), overactive parathyroid gland, cigarette smoking, and not enough calcium in your diet.

Preventing Bone Disease

There are some basic things you can do to help prevent or treat bone disease.

  • Exercise regularly, including weight lifting or strength training — be sure to discuss weight limits with your transplant team before beginning an exercise program
  • Eat foods that are high in calcium, including low-fat yogurt, cheese, and milk
  • Choose foods and juices with calcium added
  • Get plenty of dietary protein (unless restricted by your doctor)
  • Take calcium supplements if directed by your doctor
  • Take vitamin D only as directed by your doctor
  • Stop smoking

Your doctor or transplant dietician will tell you if you need to take calcium or vitamin D supplements. Your doctor may also want you to take medications that prevent bone thinning, including bisphosphonates such as alendronate (Fosamax®), etidronate (Didrocal®), and risedronate (Actonel®) or calcitonin.

STAYING FIT

Diet – Things are shaping up

The recommended diet for transplant patients consists of 30% fats, 50% carbohydrates and 20% protein.

Figure. Recommended composition of diet for transplant recipients

Figure. Recommended composition of diet for transplant recipients

Your transplant dietician will give you specific instructions about your recommended daily allowance of specific nutrients. Some tips for following a healthy diet include:

  • Eat high-fiber foods such as raw fruits and vegetables
  • Increase your calcium intake by eating low-fat dairy products and green leafy vegetables or by taking calcium supplements (if directed by your doctor)
  • Eat less salt, processed foods, and snacks
  • Use herbs and spices to add flavor instead of salt
  • Drink plenty of water (unless you are told to limit fluids)
  • Eat as little fat and oil as possible
  • Eat high-protein foods such as lean meat, chicken (without the skin), fish, eggs, nuts (unsalted), and beans
  • Select healthier condiments such as mustard, low-fat mayonnaise, and low-fat salad dressing
  • Instead of frying, try baking, broiling, grilling, boiling, or steaming foods
  • Instead of using oil to cook, use nonstick, fat-free spray

Exercise

Exercise is a great way to help increase your energy and strength after a transplant. A regular exercise routine will also help you maintain your ideal weight, prevent high blood pressure and high lipid levels, and keep your bones strong. It also helps relieve stress and overcome feelings of depression.

Soon after your transplant, you’ll want to start slow with a low-impact activity such as walking. With time, you can increase your workout with more demanding activities such as bicycling, jogging, swimming, or whatever exercise you enjoy. Training with dumbbells, cuff weights, or weights will increase strength and help prevent bone loss, but check with your transplant team first to determine how much weight is safe for you to lift. Stretching exercises are also important for muscle tone and flexibility. Be sure to check with your doctor before beginning or changing your exercise routine.

STOP Smoking

Smoking also contributes to already high risk of cardiovascular, particularly in patients with diabetes and may be detrimental to kidney function. Transplant recipients who smoke should to STOP smoking as soon as possible.

Dental Care

Routine dental care is important both before and following transplantation as oral infections can cause significant medical problems and even death. According to the American Heart Association (AHA), pre-treatment with antibiotics is not needed for routine dental care unless the patient has an underlying heart condition that increases the risk of developing a heart infection. These include patients with heart transplants with graft valvulopathy (or a previous history of endocarditis, prosthetic valves, and certain forms of congenital heart diseases.)

Gingival overgrowth (hypertrophy) is a dental issue that can arise in transplant patients especially those using cyclosporine. This occurrence of gingival overgrowth can be reduced by practicing good oral hygiene.

ROUTINE FOLLOW-UP EXAMS

All people should have regular exams to help prevent illness.

As we get older, there are some specific tests that should be done on a regular basis

Figure. Recommended tests by patient age

Figure. Recommended tests by patient age

Self-Monitoring

In addition to the tests that your transplant team will perform at regular follow-up visits, you will need to do some self-testing at home. Here are some things you will need to monitor:

  • Weight – Weigh yourself at the same time each day, preferably in the morning. If you gain 2 pounds in a day or more than 5 pounds total, call your transplant team.
  • Temperature – You should take your temperature daily, especially when you feel like you have a fever. Call your transplant team if your temperature is too high.
  • Blood pressure – Check your blood pressure as often as your transplant team recommends.
  • Pulse – You should check your pulse daily. A normal heart rate when not exercising should be 60 to 100 beats per minute. (If you have had a heart transplant, your resting heart rate may be as high as 110 to 120 beats per minute.)
  • Blood sugar – If you have high blood sugar or diabetes, you will need to monitor your blood sugar using a glucometer.

Do not take any pain medication (for example, Tylenol®, Motrin®, or Advil®), cold remedy, antacid, herbal medication, or any over-the-counter medication unless your transplant team tells you to.

PREGNANCY: BENEFITS AND RISKS

For female transplant recipients of child-bearing age, fertility is usually restored immediately after a transplant.

There have been thousands of births among women with transplanted organs.

Figure. Number of pregnancies in the US reported in organ transplant recipients

Figure. Number of pregnancies in the US reported in organ transplant recipients

Although pregnancy is now an expected part of the benefits afforded to women by organ transplantation, there are also a number of considerations.

Getting pregnant is generally not recommended within the first year after a transplant because the doses of anti-rejection medications are highest; there is a greater risk of rejection; and many other medications are prescribed that are toxic to the developing fetus. Female transplant recipients of child-bearing age should continue using birth control until the doctor says that it is okay to get pregnant.

Male transplant recipients may also be concerned about their ability to have children. Men may have fertility problems related to some transplant medications, but many men have been able to father healthy children after a transplant.

If you are interested in, or thinking about, becoming pregnant you must talk to your transplant team first. Pregnancy should be planned when organ function and anti-rejection therapy are stable and there are no signs of rejection, high blood pressure, or infection.

High Risk Pregnancy

According to National Transplantation Pregnancy Registry (NTPR) over 70% of births to female transplant recipients are live births and most have favorable outcomes for child and mother. Although this success is encouraging, these pregnancies are still considered high risk. There are risks of complications during pregnancy for the transplant recipient as well as risk of infection and exposure to anti-rejection drugs for the fetus.

For example, there is a greater risk of high blood pressure during pregnancy in the woman who has received a transplant. The risk of infection is higher for all transplant recipients, and urinary tract infections are the most common infections during pregnancy. Other infections that may cause concern during pregnancy include herpes, hepatitis, toxoplasmosis, and cytomegalovirus. Other risks include preeclampsia and preterm delivery. The fetus is also at risk for infections such as cytomegalovirus and herpes simplex virus related to the suppression of the mother’s immune system by anti-rejection drugs.

A common question is whether the baby born to a woman with a transplanted organ will be normal. We know that some babies are born premature to mothers with transplants and that they have low birth weights. It is not known whether there are long-term effects on the baby’s development.

You should inform your baby’s pediatrician that your baby was exposed to anti-rejection drugs in the womb. There is a higher risk of birth defects with some anti-rejection drugs especially mycophenolate mofetil and azathioprine. The levels of anti-rejection drugs in the mother’s blood must be monitored closely. Monitoring of blood levels is particularly important in the third trimester, when fetal metabolism may increase the clearance of anti-rejection drugs from the blood. Ask your transplant team whether or not you should breast-feed. It is not known whether breast-feeding while on certain anti-rejection medications can harm the baby.

A major concern for transplant recipients is whether pregnancy will lead to organ rejection or decreased function of the transplanted organ. In general, pregnancy does not affect organ function or patient survival as long your organ is working very well. But, it is very important to discuss with your transplant team whether or not a pregnancy will be too risky. Because pregnancy is considered high risk for transplant recipients, your transplant team may recommend and work with an obstetrician who specializes in high-risk pregnancies.

References
Armenti Clin Transpl. 2006:57-70
Cohen. Am J Kidney Dis. 2001;38:S10-24
Eyre. Circulation 2004;109:3244-55
Feurer. Minerva Chir. 2002;57:257-71
Grundy. Circulation 2004;110:227-39
McCashland. Liver Transpl. 2001;7:S2-12
McGuire. Am J Transplant. 2009;9:1988-2003
McKay. Am J Transpl 2005; 5:1592–1599
McKay. Clin J Am Soc Nephrol 2008;3: S117–S125
McKay. N Engl J Med 2006;354;12
Padiyar. Prim Care. 2008;35:433-50
Steinman. Transplantation. 2001;71:1189-204
Ward. J Ren Nutr. 2009;19:111-22
Wilson. J Am Dent Assoc 2007; 138: 739–745, 747–760

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 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.

En Espanol

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, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

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.

Kids Should Get Organs and So Should Everyone Else


girl needs transplant 3girl needs transplant 2Transplant experts agree to special consideration for kids

The board overseeing organ transplants in the U.S. voted on Monday to allow special consideration for children needing lung transplants after the families of two dying children filed suit. http://vitals.nbcnews.com/_news/2013/06/10/18888114-transplant-experts-agree-to-special-consideration-for-kids?lite

The real story behind this sensational headline is that we have a severe shortage of transplantable organs that results in the deaths of 20 Americans of all ages every single day of the year.  Somehow, though, the big picture, the view from 50,000 feet gets lost in the clamor to save the lives of helpless, dying children.  We could save their lives and a lot of others if more Americans became organ donors — but let’s get back to the headline story and then discuss the bigger picture.

While today’s story appears to be good news it could also signal that people with the ability and resources to generate publicity favorable to their issue can cause decision making bodies to change policy.

I am and have always been of the opinion that younger patients should always be favored when organs become available but nothing is that simple.  There are a number of factors that go into the decision to transplant an organ and the age of the proposed recipient is but one of them.  Others include the size and condition of the organ, blood type, tissue match and the distance from the donor (some organs cannot survive outside the body long enough to travel great distances.  A heart in San Francisco likely cannot be sent to a patient in New York and maybe not even as close as Omaha).

I understand and sympathize with the public outrage over children who are dying because they can’t get organs to keep them alive.  I understand and sympathize with parents who will go to nearly extreme to save their children’s lives.  I, too, would seek relief from the courts.  These parents are doing what parents ought to do.  What I don’t understand is why the politicians and the media place so much emphasis on a short term fix for a few and ignore the long term solution for the many — which is to increase organ donation.

The problem is that while most of us have good intentions, we just don’t follow through.  Polls continually indicate that over 90% of us think organ donation is a great idea but available data suggest that only about 40% of eligible organ donors actually sign up.

The decision noted in the posted story could represent a double edged sword.  The experts who are members of governing bodies should rely on their expertise, experience and science to make decisions and not be swayed by political or public pressure.  Sometimes politicians and public opinion are wrong and when that’s the case the experts have to stand up to the pressure.

I would readily give up my spot on the transplant list if it meant a child could have an organ instead of me but the choice is rarely that simple.  I have a feeling that this move by “Transplant Experts” is window dressing because reality suggests that if organs don’t match, if they are too large, or if they don’t meet other criteria children will still be left waiting.

I don’t know much about most things but I do know a little about organ transplants being as I got a new heart in 2007. It took me 12 years to get on the national transplant list but only 13 days to get a new heart…I got lucky.

 In order to be listed for a transplant you have to be at an “end stage” in your disease.  That means physicians have to certify that you will die without a transplant.  Everyone on the list is dying and there are about 120,000 Americans who qualify but only about 28,000 transplants are done each year.  You do the math. Thousands die each year because of a lack of transplantable organs.

So, my friends with good intentions of becoming organ donors please know this.  Good intentions won’t save a single life.  If you are one of the 90% who believe that organ donation is a good idea but also belong to the 60% who haven’t signed up, do it now.  Just go to www.donatelife.net and follow the instructions.  It only takes a minute or two.  Then, then tell your family of your intentions.

The question I hear most often is, “If so many believe in donation, why aren’t they donors?”  I think the answer is quite simple and two-fold.  1) People don’t like to think about dying and 2) They don’t think they will die anytime soon so, “What’s the rush?”

The regrettable fact is that death can strike unexpectedly and if you are not an organ donor your organs likely will be buried with you.  Each year thousands and thousands of perfectly healthy transplantable organs are buried because the deceased person just “didn’t get around to becoming a donor.”

I hope that everyone who reads this lives for a very long time…but just in case, why not register now?  One organ donor can save or positively affect the lives of up to 60 people.  An expression often used and very true is, “Don’t take your organs to heaven; heaven knows we need them here.”  Good advice.  Register today www.donatelife.net

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 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 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.

En Espanol

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, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

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.

Altruism Isn’t Working — Should We Be Able to Buy Organs?


Everyone makes money on organ transplants except the donor.  That’s right physicians, hospitals, clinics, Organ Procurement Organizations  (OPOs) and funeral homes all make money on organ donation.  The 258 solid organ transplant centers in the U.S. share the wealth of this multi-billion dollar industry but the organ donor gets nothing more than the satisfaction of having done a good thing.

There are 117,000 people waiting for transplants in the United States.  Only about 28,000 of the procedures are done here yearly and that fact has remained static for several years while the number of people on the list keeps increasing.  Last year there were about 6,000 living donations and over 7,000 patients died while waiting for their names to come up on the transplant list.  Those are very disturbing numbers.

What is more disturbing, even infuriating is the fact that while survey’s show overwhelming  American support for organ donation (over 90% of us think it’s a great idea) only about 40% of us ever get around to becoming donors.  That’s why people are dying.  It’s not that Americans don’t want to donate…it’s just that they don’t get around to it…there is no sense of urgency for them as there is for the patient who quietly waits for his or her call to come.

With only 40% donating organs it is obvious we should be trying something else,  Perhaps it is time to find a new way to encourage people to become donors now rather than continuing to kick the can down the road and allowing more people to die .  Guilt trips haven’t worked well and neither have appeals to the human sense of sacrifice and doing the right thing so that means we absolutely must try something else and that something is money.  Money talks, money works and money motivates.

Before I get into any suggestions on how to use money or where to get it let’s go back to my opening comments.  Everyone is making money on organ transplants except the patient.  Let’s look at just how much money is involved.

According to Transplant Living http://www.transplantliving.org/before-the-transplant/financing-a-transplant/the-costs/  These are the estimated  U.S. Average 2011 Billed Charges Per Transplant

Transplant

30 Days
Pre-
transplant

Organ

Procurement

Hospital
Transplant Admission

Physician
During Transplant

180 Days
Post-transplant
Admission

Immuno-
suppressants

 Total
Heart Only $47,200 $80,400 $634,300  $67,700 $137,800 $30,300 $997,700
Single Lung $10,300 $73,100 $302,900 $33,500 $117,700 $23,700 $561,200
Double Lung $21,400 $90,300 $458,500 $56,300 $142,600 $28,200 $797,300
Heart-Lung $56,800 $130,500 $777,700 $81,000 $169,100 $33,300 $1,148,400
Liver $25,400 $71,000 $316,900 $46,600 $93,900 $23,300 $577,100
Kidney $17,000 $67,200 $91,200 $18,500 $50,800 $18,200 $262,900
Pancreas $17,000 $65,000 $108,900 $17,800 $61,400 $19,300 $289,400
Intestine $55,100 $78,500 $787,900 $104,100 $146,600 $34,600 $1,206,800

*Most transplant programs have social workers and financial coordinators who can help you with the financial details of your transplant. Depending on the structure at your center, one or both will help you develop a strategy.  For a finely detailed analysis of the cost of transplants you’ll want to study this report from 2008 http://publications.milliman.com/research/health-rr/pdfs/2008-us-organ-tisse-RR4-1-08.pdf

Medical costs include:

  • insurance deductibles
  • insurance co-pays
  • pre-transplant evaluation and testing
  • surgery
  • fees for the recovery of the organ from the donor
  • follow-up care and testing
  • additional hospital stays for complications
  • fees for surgeons, physicians, radiologist, anesthesiologist and recurrent lab testing
  • anti-rejection and other drugs, which can easily exceed $2,500 per month
  • rehabilitation

Non-Medical Costs

Non-medical costs include:

  • food, lodging and long distance phone calls for you and your family
  • transportation, to and from your transplant center, before and after your transplant
  • plane travel to get to your transplant hospital quickly
  • child care
  • lost wages if your employer does not pay for the time you or a family member spends away from work
  • If your transplant center is not close to your home, lodging close to the center before and after your surgery. Some centers offer free or low-cost hospitality houses for you and your family.

The above data clearly establish that transplants are expensive and that a good many people and organizations are profiting from it and I have no objection to that.  People ought to be paid for their work.  At the same time, though, is it fair that donor’s and their families get nothing?  Is it fair that in many cases donors, especially living donors may have substantial out of pocket expenses that are not reimbursed?

Living donors actually face a disincentive because they may have to pay the bills for travel, meals, accommodations, lost income and other expenses, including medical costs if their own health is compromised because of the operations. They also take on at least some risk of future discrimination from employers or insurers.

The American Medical Association says that at the low end, the added expense of donating may be a few hundred dollars, but the range can rise to about $20,000.   The AMA points out that while Federal law strictly prohibits the selling of any organs, donors may be reimbursed legally for their expenses. Still, that hardly is a guarantee.

Not well known is the fact that low-income donors and recipients can get financial aid through the National Living Donor Assistance Center, which is federally funded. More affluent recipients also can choose to pay donors’ expenses directly. But most donors come from that great middle ground where they may have to experience a financial loss in order to donate an organ.  That is an extraordinary and unreasonable expectations and should be addressed.  Why should a donor have to pay a financial price for doing the right thing?

According to the American Medical Association (AMA) the ir House of Delegates voiced its support in June of 2012  for an important proposition: http://www.ama-assn.org/amednews/2012/08/13/edsa0813.htm

“Living donors should not have to fear negative financial consequences for giving the gift of life. The recommendations call on governments, state and federal, to help remove financial barriers to living donation. That includes provisions for mitigating out-of-pocket expenses, ensuring access to health insurance, and guaranteeing freedom from discrimination in employment and in obtaining life insurance.

One example noted in a report to delegates is the proposed federal “Share Your Spare Act,” which would provide a tax credit of up to $10,000 to cover donor expenses or lost wages. A number of states and the federal government already have enacted a patchwork of donor work leave provisions, mostly for government employees. There also are a number of state tax credit provisions for donors.

The Affordable Care Act and its prohibition against preexisting condition denials, upheld by the U.S. Supreme Court after the delegates’ vote, is expected largely to take care of concerns about donors’ future access to health insurance coverage starting in 2014. Necessary legal protections against discrimination in employment and in purchasing life insurance are still lacking.”

Deceased donors pay nothing for the organ recovery and transplant process but their families still have to foot the bill for the illness that caused them to die and for all expenses following the death including funerals.  Somehow it seems as though there should be some accommodation for donors.  More for Living donors who can actually experience considerable cost to both their financial and physical health but why not at least pay funeral expenses for the gift of life from deceased donors?

When the National Organ Transplant Act (NOTA) passed and was signed into law in 1984 it prohibited payments for organs but did not prohibit reimbursement of expenses.  It didn’t address that subject at all.  That would be a perfectly legal step to take and maybe, given the right explanation, the public would approve of a financial incentive to donate that would at least cover expenses including funerals.  Other incentives could  be contributions to retirement plans, college scholarships or paying some or all of the cost of health care for the surviving spouse or partner.

We should point out here that the organ in greatest demand is, of course, the kidney.  In the U.S. of the 117,000 people on the transplant list, about 90,000 of them are waiting for kidneys.   How do we get more kidneys?  One way is to pay for them which is strictly prohibited by the 1984 law that established the organ transplant industry.   Laws, though, can be changed and if the proper safeguards are in place paying for organs could work.   An example of a country where organs are legally bought and sold is Iran.   Yes, Iran.  Not often an example of anything good this system seems to be working for Iran as they have virtually eliminated their kidney shortage.

Iran is the only country where the selling and buying of kidneys is legal. As a result, there is no shortage of the organs.  Here’s how it works there. The system allows people to sell and buy kidneys under state-regulated surveillance.  Two charities facilitate the process by finding potential vendors and introducing them to the recipients, and are charged with checking the compatibility of a possible donation and ensuring a fair trade.  After the transplant, the vendor is compensated by both the government and the recipient.  Iranians are not allowed to donate kidneys to non-citizens.

Would that work here…there are pros and cons but there’s also a little bit of research on the subject.  In 2010 a survey of 409 Philadelphia, Pennsylvania commuters was published by the American Medical Association on how willing people would be to donate under 12 different scenarios.  The study found that many concerns about paying kidney donors may be overblown. Among other things, participants were asked how willing they would be to donate a kidney to family members or strangers for no pay, for $10,000, or $100,000.

“The study provides no evidence whatsoever that the poor would be exploited or wouldn’t make informed choices,” said Scott D. Halpern, MD, PhD, the study’s lead author and assistant professor of medicine and epidemiology in the division of pulmonary and critical care medicine at the University of Pennsylvania School of Medicine. “The central finding is that payments do not seem to influence the poor more than the rich. The influence of a $10,000 payment on people earning more than $100,000 a year is the same as a $10,000 payment is for people earning less than $20,000 a year.”

On the flip side of the “pay for organs” issue there are some very serious concerns.  Pakistan, for example, is rife with kidney for sale nightmares. According to a 2007 story in the Washington Post  http://www.washingtonpost.com/wp-dyn/content/article/2007/04/13/AR2007041302066.html  “About 40 percent of the people in some Pakistani villages are turning up with only one kidney. Charts presented at the meetings show that the number of “donations” from unrelated Pakistanis is skyrocketing. Two-thirds of the people receiving these organs are foreigners. Data from the Philippines show the same thing.”  And it is even worse today in 2013.

A number of arguments against selling organs get bandied about, but there are two which lie behind most of the others. The first involves the concern with how selling organs leads to the commodification of human bodies, and the second is the concern with the exploitation of the poor for the benefit of the rich. These are difficult arguments to explain and are not convincing to everyone, but they cut to the heart of what we want our society ultimately to be like.

The bottom line is that something must be done to meet the demand for organs. It is at least as unethical to let people die because of being afraid to change the system as it is to pay for organs from poor people.  You can learn more on this subject by checking out these links:

http://www.cnn.com/2012/07/03/health/allowed-sell-organs-time/index.html

http://www.npr.org/2008/05/21/90632108/should-we-legalize-the-market-for-human-organs

http://www.newint.org/argument/2010/10/01/human-organ-trade-debate/

http://plato.stanford.edu/entries/organs-sale/

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.

Does An Organ Transplant also Transplant Donor Memories?


I have researched and published several blogs on  cellular memory and am doing it again because in the five years I have been writing the Bob’s Newheart column it is clearly the most popular topic.   It has had thousands and thousands of hits from all over the world.

Personally I am a cellular memory skeptic  in that I had a heart transplant in 2007 and developed no new habits or tastes.  I am pretty much who I always was.  Having said that I do not discount the experience of others who feel their lives, habits and even personalities have changed and in some cases the changes, they say, are dramatic.   Who am I to say that their experiences are not real?

Because of the popularity of the subject matter I embarked on another search to see if there was any new information since my last blog on the issue a couple of years ago.  I found this piece to be so complete I decided that rather than paraphrase or lift quotes from it I would just post the entire document.  Published originally by the Skeptics Dictionary, it covers just about every aspect of this most interesting phenomenon.  The Skeptic’s Dictionary calls itself “A Collection of strange beliefs, amusing deceptions and dangerous delusions.” and you can find it here http://www.skepdic.com/cellular.html

Cellular Memory

The Skeptic’s Dictionary

“The idea that transplanting organs transfers the coding of life experiences is unimaginable.”  –Dr. John Schroeder,  Stanford Medical Center

Cellular memory is the speculative notion that human body cells contain clues to our personalities, tastes, and histories, independently of either genetic codes or brain cells. The magical thinking of our ancestors may account for the first beliefs in something like cellular memory. Eating the heart of a courageous enemy killed in battle would give one strength. The practice of eating various animal organs associated with different virtues such as longevity or sexual prowess* is one of the more common forms of magical thinking among our earliest ancestors. Even today, some people think that eating brains will make them smarter.

The idea of cellular memory has been used in several films. For example, Les Mains d’Orlac (1920) by Maurice Renard  (1875-1939) is built around a story of a concert pianist who loses his hands in an accident and is given the hands of a murderer in a transplant operation. The pianist then develops an urge to kill. Several variations of Renard’s story have made it into film, including Orlacs Hände, a 1924 silent Austrian film, Mad Love (1935), Les Mains D’Orlac (1960), and Hands of a Stranger (1962). A similar story is told by Pierre Boileau and Thomas Narcejac (authors of Vertigo) in et mon tout est un homme (1965), which was made into the film Body Parts in 1991. A prison psychiatrist loses an arm in an accident and is given the arm of an executed psycho-killer. The arm then develops a mind of its own. In the film Brian’s Song, the 26-year old Brian Piccolo (played by James Caan) is dying of cancer when Gayle Sayers (played by Billy Dee Williams), his friend and Chicago Bears teammate, visits him in the hospital. Piccolo had been given a transfusion and he asks Sayers if he had donated any blood. When Sayers says yes, Piccolo remarks that that explains his craving for chitlins.

In real life, Claire Sylvia, a heart-lung transplant recipient, explained her sudden craving for beer by noting that her donor was an 18-year-old male who died in a motorcycle accident. She’s even written a book about it (A Change of Heart), which was made into a movie for television in 2002 called “Heart of a Stranger,” starring Jane Seymour.

Dr. Larry Dossey doesn’t accept the cellular memory explanation for Claire Sylvia’s sudden craving for beer. He thinks that the most likely explanation “is that the consciousness of the donor had fundamentally united with the consciousness of the recipient enabling the recipient to gain information from the donor.” Perhaps, he mused, organ recipients enter into a realm of consciousness where information about another person can be accessed through the Universal Mind.* Perhaps, but is there a simpler explanation?

James Van Praagh, on the other hand, is quoted by Claire Sylvia as saying: “Donated organs often come from young people who were killed in car or motorcycle accidents, and who died quickly. Because their spirits often feel they haven’t completed their time on earth, they sometimes attach themselves to another person. There may be things that your donor hadn’t completed in the physical world, which his spirit still wanted to experience.”* James claims to get his information from the spirit world. Unfortunately, we have no way of validating his claims.

Paul Pearsall, Ph.D., a psychologist and author of The Pleasure Prescription and The Heart’s Code,  goes much further in his speculations than that certain cravings are passed from donor to recipient in organ transplants. Pearsall claims that “the heart has a coded subtle knowledge connecting us to everything and everyone around us. That aggregate knowledge is our spirit and soul. . . .The heart is a sentient, thinking, feeling, communicating organ.” He claims “donated cells remained energetically and nonlocally connected with their donor.” How he knows this is anybody’s guess.

Sylvia Browne teaches a course for alternative education programs Healing Your Body, Mind & Soul. In one two-hour session Ms. Browne will teach anyone “how to directly access the genetic code within each cell, manipulate that code and reprogram the body to a state of normalcy.” Anyone with a little bit of knowledge of genetics would recognize that these claims are preposterous, yet when the course was offered in Sacramento, it was sold out.

L. Ron Hubbard speculated in Dianetics that cellular memory might explain how engrams work.

Dr. Candace Pert, a professor in the department of physiology and biophysics at Georgetown University, believes “the mind is not just in the brain, but also exists throughout the body.”  Dr. Pert is an expert in peptide pharmacology. “The mind and body communicate with each other through chemicals known as peptides,” she claims. “These peptides are found in the brain as well as in the stomach, muscles and all of our major organs. I believe that memory can be accessed anywhere in the peptide/receptor network. For instance, a memory associated with food may be linked to the pancreas or liver, and such associations can be transplanted from one person to another.”* The evidence for these claims has yet to be produced and Pert’s notions have not found favor with neuroscientists who study the nature of memory. I especially await the evidence for the holographic mind that exists throughout the body. How does she know that it doesn’t extend beyond the body? Perhaps it goes all the way out to Larry Dossey’s Universal Mind. It’s not at all clear what Pert means by ‘mind’. In any case, Dr. Pert doesn’t explain why we don’t seem to be affected by the memories of the animals we eat. Perhaps their peptides get destroyed by cooking.

Attilio D’Alberto has found that he can easily reconcile traditional Chinese medicine (TCM), cellular memory, and quantum physics in one holistic metaphysical hodgepodge. You’ve got your yin organs and your yang organs, your E=mc2, your sympathetic magic (each organ has an associated emotion, spirit, planet, etc.), your quantum level of subatomic particles and frozen energy fields with their different frequencies. “If a heart is transplanted, the memory at the cellular level and at the spiritual level, the Shen, will be moved with the donated organ.” However, it seems clear that he is just guessing.

Gary Schwartz claims that he has 70 cases where he believes transplant recipients have inherited the traits of their donors. He believes this because the “stories are compelling and consistent.”* He also believes he understands the mechanism by which cellular memory works:

When the organ is placed in the recipient, the information and energy stored in the organ is passed on to the recipient. The theory applies to any organ that has cells that are interconnected. They could be kidneys, liver and even muscles.

How he knows this is a mystery. If it is true that donors pass on personality traits and personal tastes, then it might be unwise for people to get organ transplants from other species, such as the baboon. Again, if all cells are carrying information that can be passed on in transplant, why wouldn’t this information be transferred when we eat fruits, vegetables, or any other living thing. Shouldn’t we be releasing into our bloodstream the magic of a living thing’s history with each bite we take? Schwartz calls his belief a “theory,” but it is not a theory in the sense that scientists use the term.* It would be more accurate to call it an untestable speculative model.

An organ transplant is a life-altering experience, literally. In many cases, it might well be compared to the near-death experience since many transplants are done only if death is imminent. It should not be surprising to find that many transplant recipients change significantly. Some of these changes might easily be interpreted as being consistent with the donor’s likes and dislikes or behaviors. Recipients would want to know about their donor and might consciously or unconsciously be influenced by stories about the person who now “lives inside them.”

Collecting stories to validate a hypothesis is a risky business. Stories of transplant recipients that don’t seem to exhibit memories from their donor don’t prove that they aren’t there but those stories are selected out anyway. Stories that do seem to exhibit donor memories don’t prove cellular memory but collecting a bunch of them could lead one to see a pattern that isn’t really there. Collecting such stories may simply prove that the researcher is good at confirming his or her bias. The validation process becomes more complicated when one considers that many organ recipients will give in to magical thinking and “feel” the presence of the deceased donor within them. The recipient’s subjective validation may be driven by a desire to prove the belief or to please the donor’s family, the doctor, or a medical attendant who may encourage the belief. Furthermore, now that the idea of cellular memory is being promoted in books and on television (the Discovery Health Channel, for example), there will be a problem of making sure that stories aren’t contaminated.

Science should be moving us forward, bringing about a better understanding of how phenomena work. Scientists like Gary Schwartz and Paul Pearsall introduce mysticism and magical thinking into the mix, which is very attractive to many New Age healers because it supports their spiritual leanings. However, such thinking does not advance science; it takes it back to an earlier time, a time when the world was dominated by magical powers. It dresses that world in scientific-sounding jargon about energies and quantum physics, but it does little to advance our understanding of anything and it will continue to fail to convince the scientific community at large, which has a higher standard of evidence, of its speculations.

Here is what Jeff Punch, M.D., has to say about cellular memory:

There are several possible logical explanations for why people might assume characteristics of their donors: Side effects of transplant medications may make people feel weird and different from before the transplant. For example, prednisone makes people hungry:

The recipient of an organ transplant develops a love of pastry and finds out the person that donated their organ loved pastry as well. They think there is a connection, but really it is just the prednisone making their body crave sweets.

It could also be pure coincidence:

The patient watches a TV show while recovering from a transplant that shows older adults rollerblading and decides that it looks like fun, but doesn’t make a conscious decision to do anything about it because they are still recovering from the transplant. Months later they are shopping and they see rollerblades and decide to give it a try since it was something they were incapable of doing for heath reasons before the transplant. They like it and get good at it. Later they find out that the donor was a young person that liked to rollerblade. It is easy to understand how the patient and family might believe that the new organ had something to do with Mom’s new-found love of rollerblading. In actuality, the only thing the new organ gave her was the health to try rollerblades. The idea came from a TV show she forgot she ever saw.

A transplant is a profound experience and the human mind is very suggestible. Medically speaking, there is no evidence that these reports are anything more than fantasy.

Even so, the stories are intriguing and may lead to some serious scientific investigation at some time in the future.

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.

Foreigners are Getting American Organs…Should That Be Allowed?


From time to time we hear of a non-U.S. citizen getting an organ transplant at an American medical center having received the organ from the American donor pool.  Is that proper?  There’s more of it going on than you may suspect and transplant centers don’t talk about it much.

While I am the first to admit that my research of this topic is inadequate it still raises legitimate questions.  Why do we allow non-U.S. citizens  to get transplants here?  Shouldn’t American organs go to Americans?  Should donors be able to designate that they only want their organs to go to fellow citizens?

No one has made much of a fuss about our organs going to citizens of other countries until the Los Angeles Times  investigative report in 2008 uncovered the story of four Japanese gangsters who got liver transplants at the University of California, Los Angeles Medical Center.  That story put a burr under a lot of American Saddles but it still took the United Network For Organ Sharing (UNOS), which often moves at breakneck glacier speed, four years to decide to do something about it.  Just this year they decided that transplants involving recipients who are not U.S. citizens or residents will get closer scrutiny according to American Medical news” http://www.ama-assn.org/amednews/2012/07/16/prse0718.htm

“Under the policy adopted by the UNOS board of directors in late June, any transplant involving a recipient who is not a U.S. citizen or resident can be reviewed by the Organ Procurement and Transplantation Network  (OPTN).

Transplant centers will have to provide data to the OPTN. That information will include a recipient’s country of origin, the reason for seeking transplantation in the U.S. and how the procedure is being financed. Data on transplantation by citizenship status will be publicly reported.

Centers will be barred from entering contracts with foreign agencies or governments to provide transplantation services. Transplant centers must abide by OPTN/UNOS rules in order to be paid by Medicare.”

I don’t know about you, readers, but this report doesn’t really tell me what a review by OPTN could result in.  Like…could they deny the transplant?

Later in this post you will see more specifics but in the decade from 2000 through 2010 685 non-U.S. citizens got organ transplants here with organs coming from American donors.  What is bothersome to me is that when we sign up to be donors I think we do so assuming that our organs will go to fellow citizens.  That apparently is not always the case.

When you consider that about 20 U.S. Citizens die every day because there are not enough organs is it right that a rich foreigner (the great majority pay cash) can come here and take an organ that might otherwise have gone to one of us?  Why is there a rule that American Transplant Centers can list foreigners but they can make up no more than 5% of any center’s list?  And — is it true that some organs are given to illegal aliens?  We’ll attempt to answer those questions and more in this post.

Before we more completely address these important questions it is important to frame the issue of organ allocation and transplantation in the United States.  As much as we dislike the idea the fact is that we must ration human organs.  The gap between available organs and those who need them is so incredibly wide someone has to decide who does and doesn’t get them.

The most burning of questions in organ transplantation is this one; Who on the waiting lists should get transplants first: patients in the greatest need or those most likely to benefit?  Example.  If a choice has to be made between a 72 year old man has been diagnosed as almost immediately terminal unless he gets an heart transplant and a sick but much healthier 35 year old mother of three; who should get the heart?  It could be logically argued that the mother should get it because while not as sick as the man she is more likely to live much, much longer and therefore benefit the most.

As of this writing there are 116,835 candidates on the U.S. transplant waiting list.  From January through October of 2012 there were only 23,363 transplants done with the organs coming from 11,659 people.  It is obvious with virtually no study of the numbers that the gap between available organs and those who need them is monstrous.  And…think about this.  In those ten months from January through October of all the people who died in this country only 11,659 of them were acceptable donors (acceptable meaning among registered donors this number had organs healthy enough to be transplanted).

Determining who gets an available organ is not easy and the process is said to be “Blind” meaning patient conditions, age and other medical factors are known but not names or social status.  It is important to understand, too, that there are over 150 transplant centers in the United States (complete list here http://tinyurl.com/78qfesx) and each is allowed to decide which of their patients is placed on the national listing. Where there are general guidelines on who can be listed, there is no uniformity which has resulted in each transplant center developing their own criteria for adding patients to the ever growing number.

So how do you get on the transplant list anyway?  Well, to start you have to have a Doctor who thinks you are sick enough to be referred to a transplant center, but there are many factors involved one of which is what bioethicist Art Caplan calls the “Wallet biopsy.”  You have to prove that you can pay not only for the procedure but the follow-up care and the anti-rejection drugs you must take for the rest of your life.  Those drugs can be very expensive…in excess of $1,000 a month..

Even if patients have enough money to qualify for a transplant, the transplant center must also deem them good candidates psychologically and socially and the criteria vary widely.  Among the factors that transplant centers weigh as contraindications are not having a spouse or relative or close friend as a caregiver, having suffered a recent death or loss of someone close to you, having a history of criminal behavior or mental illness like schizophrenia or depression, a history of alcoholism or drug dependency, having attempted suicide, having a personality disorder and mental retardation.

With all those qualifications it is the first one, the ability to pay, that may determine your success in getting listed and then getting an organ.  So when foreigners come to the U.S. with a boatload of cash it is possible that some transplant centers will make every effort to accommodate their needs including manipulating numbers so that they stay within the 5% restriction.

But…let’s look at the 5%.  The number only indicates a limit on foreign transplants it does not say that 5% of all transplants go to foreigners and with the New UNOS rules the number of foreign transplants could diminish.  My research on this subject revealed that from 2000 through 2010, 685 non-citizen, non-residents (aka foreign nationals) were given deceased donor kidney transplants in the US.  http://livingdonorsarepeopletoo.com/kidneys-given-to-non-us-citizens-non-residents-2000-2010/

Now what about that question on illegal immigrants getting tax paid organ transplants in the U.S.?  Research indicates that while it has happened it is rare and in the case of a 2012 kidney transplant at Loyola University in Chicago the transplant was funded by Loyola.  http://articles.chicagotribune.com/2012-12-09/news/ct-met-illegal-immigrant-kidney-transplant-20121209_1_illegal-immigrant-kidney-transplant-liver-transplant.  Now, one could argue that Loyola money is private money but at the same time the school certainly receives tax dollars for a myriad of uses so the use of tax dollars, however tangential, is certainly possible.  More importantly, though, it is clear that an American donor’s organ was given to an illegal alien meaning that an American Citizen did not get it.  To me…that’s just not right.

I find it disgraceful that any American citizen should be denied an organ transplant for any reason but to be denied an organ because it went to someone from another country just doesn’t seem right.  I did a considerable amount of “googleing” to find a satisfactory explanation for the practice and came up empty handed.  Having been on a list and knowing of the shortage scared me.  Had known that someone from another country might get an American organ before I did, would have terrified and enraged me.  I just don’t think its right.

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.
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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.
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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. .
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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

This List Could SaveYour Life


The 2012 Frankenstorm that started out as hurricane Sandy had a devastating effect on the eastern seaboard of the United States.   In situations like that it is critically important for the sick, elderly and those who are recovering from organ/tissue transplants and other procedures to be specially prepared to provide accurate medical information to emergency responders.

Being prepared for Frankenstorms is essential but mini storms pop up every day.  You never know when for no apparent reason your blood pressure increases dramatically,  you have difficulty breathing, you experience unexplainable weight gain or an angina attack sends you to the emergency room.  When that happens someone is going to ask what meds you are on, how often you take them, their dosage, contact information for your medical team and insurance info.  Under pressure and when sick it is not uncommon to forget important information.  That’s why I developed this list.   If you have already done what I recommend then review and update your effort.  If you haven’t, do it now while you have the time.

Developing the following information could save your life. There is nothing that can help emergency responders or medical professionals more than providing them with the information suggested below. It is critically important to your life that you take the time right now to do the following:

Information to include on an emergency medical information fact sheet: (sample at the end of this blog)

  • Your full name, address and phone number
  • Next of kin or person(s) who should be notified in case of your emergency including contact information (names, phone, address, email, cell phone)
  • Your Primary care physician name and phone number
  • Specialty care physicians names and numbers
  • The pharmacies you use (include phone numbers)
  • Health insurance company, agent and policy numbers (If on Medicare or Medicaid include that notation with account numbers).
  • Prescription insurance numbers
  • List all the medical conditions for which you are being treated
  • List all surgeries
  • Blood type
  • Write down every medication you take whether by prescription or over the counter.  Include milligrams for each, how often you take them and for which medical condition.

DO NOT GO ANYWHERE WITHOUT AT LEAST A WEEK’S SUPPLY OF YOUR MEDS!   This is especially important during a disaster situation in which transportation, emergency and other services are strained, temporarily unavailable or even suspended.

Some people, transplant patients and recipients in particular must take certain medications to stay alive.  In situations like storms or other natural or unnatural disasters and emergency situations you could be faced with a situation in which you are unable to go home to retrieve your medications and other important belongings.  I suggest you do what I do and that is to keep a shoulder bag packed with your meds and other medical equipment that is within your reach at a moment’s notice. If possible you should also try to stash some cash in your emergency bag.  You might find yourself in a situation where checks and credit cards are useless.

If you have a cell phone and an extra charger, put it in your meds bag.  If you don’t have an extra charger keep the one you have in your meds bag when you are not using it. There is nothing worse than being unable to get to your charger when your phone is going dead.  That phone could be your link to safety and treatment.

If you wear a medical necklace or bracelet, make sure it is up to date and accurate.  If you don’t wear one and have time, get one.

When you have completed the medical emergency list (it should all fit on one sheet of copy paper) make two or three copies, fold them carefully and put them in your purse or wallet.  Emergency medical people can be of the most help if they are aware of your medical history, current medications and other treatments you may be getting.  Having that list in your possession and providing it to medical experts could save your life.  While you may know all of this information, do not depend on your memory.  One omission could prove to be catastrophic.  You must also remember to update the list every time you get a new medication, quit using one, or have any change in your medical condition.

A separate list should be developed for your personal use.  It should include phone numbers of emergency services you might need and iportant family and friend contacts you might need (include cell phone numbers and email addresses).

Sample Medical Info Sheet to Carry With You

HEART TRANSPLANT RECIPIENT

Best Hospital USA  August 21 2007  Immunosuppressed

John Doe

Birth date 2-17-1950

9180 orchard lane Anycity, USA

Home 555-555-5555  Cell phone 555-555-5555

SS # 555-55-5555

Spouse; Jane Doe; Cell phone 555-555-5555

Physicians:

Primary, Dr.Sawbones Anycity USA.  Address, phone numbers

Transplant Pulmonologist,  Dr. Breatheasy best clinic USA. 
Address, phone numbers

Transplant Cardiologists, Dr. Heartthump best clinic USA. 
Address, phone numbers

Transplant Coordinator:  Nurse Jane best clinic USA/
Address, phone numbers

 Pharmacy: 

Primary:  Best Pharmacy USS. 
Address, phone numbers

Secondary: Second best pharmacy USA. 
Address, phone numbers

 Health insurance:

Primary Medicare part A, Hospital, part B, Medical. Policy number other info

Secondary, AARP Medicare Supplement .   policy number other info

Medicare part D Prescriptions, AARP Medicare RxEnhanced policy number, other info

 

ALLERGIES:  Penicillin, cats, all seafood/fish, mold, dust.  

 BLOOD TYPE: B Positive

MEDICATIONS

 Heart related medications

  • Anti-rejection Cyclosporine 200 mg  twice a day
  • Anti-rejection — Cellcept  1000 mg twice a day
  • Anti-cholesterol — Prevastatin 20 mg once a day
  • Blood Thinner – Aspirin 81 mg once a day
  • Blood Pressure – Amlodipine Besylate 5 mg twice a day

Other medications

  • Reflux – Omeprozole  (Prilosec) two 40 mg twice a day
  • Thyroid — Levothyroxine .088 MG once a day  (upon arising)
  • Asthma – ProAir albuterol  rescue inhaler as needed
  • COPD – Foradilinhale one capsule twice a day
  • COPD – Spiriva inhale one capsule once a day (upon arising)
  • Depression-Remeron  7.5 –mg once a day-

 Supplements

—  Calcium – 600 mg tablet with Vitamin D twice a day

—  Multi-vitamin– one tablet once a day

Medical Conditions

  • Asthma, hay fever, allergies diagnosed 1951
  • Non-smoker
  • COPD diagnosed October 2000
  • Restless leg syndrome diagnosed 1996
  • Chronic lower back pain

Surgeries

  • Heart transplantBest Hospital 
  • Anywhere USA August 2007
  • Cholecystectomy 1994
  • Total left knee replacement 1998

This list is on my computer and on my cell phone.  Also, I carry two paper copies in my wallet at all times and update it whenever there is a condition, prescription, insurance or medical team change.  Every time I hand this list to ER personnel, or anyone else who asks for it they all say the same thing, “Everyone should carry a list like this it is of invaluable help to us and could save your life.”

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 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.

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.

Big Pharma They Love a Sick Population and Want To Keep it That Way


As most of our readers know I am not only a senior citizen but one who has had a heart transplant.  I am on Medicare, have supplemental insurance and also participate in Medicare Part D, the prescription drug program.

Both age and my status as a transplant recipient cause me to take several expensive drugs.  While anti-rejection drugs are fully covered by Medicare others for blood pressure, COPD and thyroid are not.  They are expensive, very expensive and while in the so-called “Donut hole” we have paid nearly $1,000 a month so the price of prescription drugs is a big issue in our home.  Upon passage of the affordable care act the cost was cut in half but $500 a month is still a lot of money.  That’s my lead in to this question.

Will someone please offer a reasonable, understandable and clear explanation as to why Medicare is not allowed by law to negotiate the price of drugs?  I have researched this issue for hours and can’t find a simple explanation.  There are a lot of convoluted, rambling excuses but not a clear reason.  Here’s an example of the reasoning Pharmaceutical companies use for their opposition to allowing Medicare to negotiate the price of drugs (like the Veterans Administration does).  “Federal price negotiations would represent a policy change carrying significant risks for research and development investment in new and improved medicines. A substantial body of research shows that similar federal drug programs impose prices substantially lower than those negotiated in the private sector, and that such lower prices inevitably will reduce research and investment in new and improved medicines. This slowdown in pharmaceutical innovation will yield highly adverse effects upon future patients in terms of reduced life expectancies.”

Yakkity, Yak, blah, blah, blah!.  On one hand big pharma tells us that negotiating drug prices would cut research money while on the other hand we learn they have spent $2.3 billion on lobbying and $183 million on campaign contributions since 1998, according to the Center for Responsive Politics. The ready money serves as a strong deterrent against any legislative proposal that would lower costs for consumers and profits for the drug makers.  Furthermore keeping drug prices high for seniors adds $150 to $300 Billion to drug industry profits over a ten year period. The increased costs hit the pockets of both seniors and taxpayers.

Yeah, those poor pharma people sure are hurting.  When you are willing to spend over $2 Billion to protect your profitability, profitability must be sky high.  I don’t know how, in good conscience any member of congress or the President of the United States can oppose giving Medicare the right to negotiate the price of drugs.  They are, after all, probably the biggest supplier of drugs in the world but that’s not the end of the pharma, health insurance, special interest war on us (yes us, you and me) campaign.

Let us take a look at the drugs that keep organ transplant patients alive. They are called immunosuppressants or more commonly, anti-rejection drugs.  Here’s the story. If you are of retirement age or disabled or somehow covered by Medicare they will pay 80% of the cost of an organ transplant and the full cost of those absolutely necessary anti- rejection drugs for the rest of your life.  Without them organ transplant patients would die.

Here’s the rub —  If you have kidney disease (only kidney patients are eligible for this program) and are not disabled or of retirement age Medicare will pay 80% of the cost of the transplant but will only provide you with free anti-rejection drugs for thirty six months.  Some people would say, “That’s fair, a person should be able to go back to work and pay for their own drugs,” and that is a reasonable thought but the price of anti-rejection drugs is anything but reasonable.  They can cost from $1,000 to $3,000 per month, for life.  If you stop taking them your body will begin to reject your organ and you could die.

Now here’s where the story becomes absolute nonsense.  Let’s assume you can’t pay for the drugs and you go into rejection and are hospitalized.  Medicare will pay 80% of the cost of your care and even 80% of the cost of another transplant and if a transplant able organ is not available they will pay for you to be on dialysis for the rest of your life.  Taxpayers spend more than $20 billion a year to care for about 400,000 people who get dialysis treatments — about $77,000 per patient.  The most that anti-rejection drugs would cost would be less than half that amount, $36,000 per year, yet congress refuses to allow Medicare to pay for the drugs. Every year a bill is introduced that would at least extend the 36 month period if not eliminate it entirely but it is defeated every time.

If you think all of this is pretty stupid, it gets dumber. One of the organizations that has opposed extending the 36 month period is the National Kidney Foundation (NKF).  NKF says they oppose the added benefit because money to pay for it would have to come out of dollars earmarked for dialysis coverage, but wait…if patients had the drugs they wouldn’t need dialysis, would they?  Do you get the idea that NKF has an interest in keeping the dialysis industry alive?  The dialysis industry is huge and there are only two major players.  If you want to learn more about this industry go to http://www.propublica.org/article/in-dialysis-life-saving-care-at-great-risk-and-cost

There is an adage that says  you shouldn’t let the fox guard the chicken coop but it seems that is what has happened in health care generally but certainly in the two situations I outlined here.  According to Open Secrets.com, The Pharmaceutical industry alone spends billions of dollars on influencing our lawmakers…here’s the chart…

Top Contributors, 2011-2012

Contributor

Amount

Pfizer   Inc

                $1,287,136

Amgen   Inc

                 $1,017,312

Abbott   Laboratories

                 $868,480

Stryker   Corp

                 $819,464

AstraZeneca   PLC

                 $794,863

Merck   & Co

                 $763,935

Johnson   & Johnson

                 $716,541

Upsher-Smith   Laboratories

                 $612,900

Eli   Lilly & Co

                 $571,179

McKesson   Corp

                 $555,125

4Life Research

                 $539,950

EOE   Inc

                 $525,000

GlaxoSmithKline

                 $493,472

Masimo   Corp

                 $469,468

AmerisourceBergen   Corp

                 $461,877

Roche   Holdings

                 $458,940

Novartis   AG

                 $454,089

Harris   Frc

                 $351,000

Bayer   AG

                 $341,715

Sanofi

                 $299,526

Contributions to Democrats  Republicans  Outside Spending Groups

Top Recipients, 2011-2012

Candidate

Office

Amount

Obama, Barack (D)      $785,385
Romney, Mitt (R)      $622,986
Hatch, Orrin G (R-UT)

Senate

     $327,627
Upton, Fred (R-MI)

House

     $253,615
Brown, Scott (R-MA)

Senate

     $246,953

This election cycle has us talking about the economy and where our money is going and it’s missing the boat completely.  Your money, most of your money, maybe all of your money will eventually go to the Pharmaceutical companies and there is little or no control over them.  The spend Billions of dollars influencing our lawmakers to make sure that their profitability is left unchecked and for the most part it is.

It is big Pharma that doesn’t want Medicare to negotiate the price of drugs, so you pay more, it is big Pharma that inflates the price of some drugs to such a high point that some families either can’t afford them and die or lose everything to pay for them.  It is big Pharma that produces drug X for $5.00 in Mexico and the same drug for $50.00 in the U.S. and then they want a ban on going to Mexico to get it cheaper.  It is big Pharma that gouges the elderly to the point where some have to choose between eating and taking their meds.  These ultra capitalists have no heart and no soul.  They think, eat, sleep and dream profits and boy are they good at it.

Healthcare has long been one of my favorite topics and while it has taken me far to long to arrive at this conclusion I have arrived.  It seems quite obvious that the nearly $1 trillion a year worldwide pharmaceutical business primary goal is to make sure we either are sick or think we are sick.   Consider this, they don’t make a dime on dead or well people so making us sick or having us believe we are sick is good for business.  Think about all the syndromes we hear about restless legs, carpal tunnel syndrome, cervical syndrome, chediak-higashi syndrome, chinese restaurant syndromeonder chronic fatigue immune dysfunction syndrome, churg-strauss syndrome, conn’s syndrome, cornelia de lange syndrome  and costochondral syndrome…and this is a short list.  All of those syndromes, real or imagined are treated by some sort of medication, expensive medication.  the Pharmaceutical companies love syndromes and discover them with great regularity so they can convince physicians to diagnose them and then prescribe for the malady.

Isn’t it interesting that none of the current crop of politicians ever talks about this elephant in the living room. Pharmaceutical companies have a vested interest in keeping us just a little bit sick so they can sell the expensive treatments they have developed.  Which makes you this, “do they ever seriously look for cures?”  Why would they?   There’s nowhere near as much money in a cure as there is in a new drug to treat an existing condition.

And…consider this, too.  There is a wide variety of serious diseases that affect very few people, they are called “Orphan” diseases like  acrocephalosyndactylia, Acrodermatitis, Addisons disease,Aamyotophic Lateral Sclerosis, Adie Syndrome, Amylose, Asperger Syndrome,Barret Esophagus, Bardet-biedl syndrome and thousands more.  These diseases are rare enough that little research big Pharma money is spent on trying to find either cures or treatments because there’s not enough potential profit in it.   Why spend money on a disease that affects a few thousand when you can develop a drug that affects millions and increase profits substantially.

Big Pharma control of our health and what we pay to either fix it or keep it is an issue that affects everyone but for some strange reason we’d rather talk about who marries who, Prince William’s nudity in a hotel and tax cuts for rich people.  Americans ought to wake up and see what is really affecting their daily lives and their wallets.  It’s not two women who want to marry each other.  It’s big Pharma and if you look closely at any time of the night or day they have a hand in your wallet.

 

 

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.

Human Organs From Pigs — But You’d Have to Kill One to Get One.


What if we could end the organ shortage tomorrow and everyone on the list could get a transplant within a few weeks?  Would you be willing to endorse this new source of organs?  If the source were a pig would you be willing to kill it to save your own life?

Xenotransplantation is the process of transplanting organs from animals into humans and historically that hasn’t worked too well. The human immune system immediately and violently attacks organs from animals and even our most powerful immunosuppressant drugs are ineffective but scientists are working on the problem because if we could use animal organs (ethical questions aside for now) we could end the organ shortage almost immediately.

The answer may lie in raising transgenic animals – animals that carry genes from other species or in the case of humans, animals that have been genetically modified so that their organs are transplantable into human beings.

According to www.actionbioscience.org  Transgenic animals are not a pipe dream either, they are already being produced.  The majority has been mice but scientists have also produced rabbits, pigs, sheep, and cattle. The primary question is not if we can raise pigs to produce organs for humans but when that is likely to happen and it’s possible it could happen relatively soon.  In Korea scientists have already cloned a genetically altered pig with hopes of using its organs in humans but that has, to my knowledge, not yet been done successfully.

There are distinct medical applications to the process of transgenics and providing a ready supply of transplantable organs is one of them.  Presently there is a single protein that can cause rejection but researchers think they can eliminate that problem in the not too distant future by replacing it with a human protein.  It is also possible that animals could be raised to be disease resistant which would benefit both the animal and humans to which some animal diseases can cross.

Pigs are currently thought to be the best candidates for organ donation. The risk of cross-species disease transmission is decreased because of their increased phylogenetic distance from humans. They are readily available, their organs are anatomically comparable in size, and new infectious agents are less likely since they have been in close contact with humans through domestication for many generations.

Aside from growing organs for transplantation, milk producing animals are desirable, too, because they can be used to producenutritional supplements and pharmaceuticals.   Products such as insulin, growth hormone, and blood anti-clotting factors may soon be or have already been obtained from the milk of transgenic cows, sheep, or goats. Research is also underway to manufacture milk through transgenesis for treatment of debilitating diseases such as phenylketonuria (PKU), hereditary emphysema, and cystic fibrosis.

So, yes, there are great possibilities with transgenic animals but there are also ethical concerns that must be addressed.  For example:

  • Should there be universal protocols for transgenesis?
  • Should such protocols demand that only the most promising research be permitted?
  • Is human welfare the only consideration? What about the welfare of other life forms?
  • Should scientists focus on in vitro (cultured in a lab) transgenic methods rather than, or before, using live animals to alleviate animal suffering?
  • Will transgenic animals radically change the direction of evolution, which may result in drastic consequences for nature and humans alike?
  • Should patents be allowed on transgenic animals, which may hamper the free exchange of scientific research?

Animals like pigs offer hope for the thousands of people languishing on the national transplant list.  Unfortunately these things take time and while scientists and then politicians and bureaucrats investigate the possibilities thousands will die waiting for organs.  The altruistic system that we have in place in America just isn’t enough.  We must do more to save the lives of those who need organs.  Hope lies in xenotransplantation, regenerative medicine, therapeutic cloning and artificial organ development.  We must keep that hope alive by support these efforts.

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.

You Could Die Today! Will You Bury Your Organs Or Donate Them?


What if tomorrow or even today was your last day to be alive?  It’s possible.  No one knows when their time will come.  We start dying upon birth and could die young from a variety of medical or accidental causes. That’s why it is so important to become an organ donor now, right now.  Just go to www.donatelife.net and do it. 

There are three reasons you should become an organ donor right now:

  1. You could die today or tomorrow and if you are not a donor your organs could be buried with you.  It happens 20,000 times a year in the U.S. 
  2. You could find out that you or a loved one needs a transplant
  3. You are a compassionate human being who wants to save lives and you understand the urgency.

My blogs are about living, about saving lives and about how the living can help do that but sometimes a writer has to provide some shock value in order to get people’s attention.  So here’s the shock.  You should become an organ donor soon because you could die soon, very soon. Stand by…there’s more shock to come.

You’ve all heard the numbers 114,000 people on the organ transplant waiting list with only 28,000 transplants done each year. Estimates indicate about 20 people die every day while waiting for organs.  Becoming an organ donor is an urgent issue but for most potential donors it is only urgent for the would-be recipient but consider this… you or a loved one could be the next patient in line waiting for an organ transplant. 

While 9 out of 10 Americans support organ donation, only 38% of US driver’s license or ID card holders are registered as organ donors, according to the 2009 Organ Donor Report Card. Overall, only 1 in 3.75 people in the US are registered organ donors. And in 2008, for the first time in at least 20 years, the number of both living and deceased donors declined over the previous year, according to the United Network for Organ Sharing (UNOS) Organ Procurement and Transplantation Network (OPTN).

None of us expect to die any time soon so we approach organ donation with a, “What’s the rush” attitude.  “They can’t take my organs until I die and I’m going to be around for a while so I’ll become a donor when I get around to it.”  But…what if you die before you get around to it?  Here are some startling odds.

All figures below are for U.S. residents.as of 2005, the latest year this data was available.

Your chance of dying of any of the following                                                   Lifetime Odds

Heart Disease                                                                                                        1-in-5

Cancer                                                                                                                    1-in-7

Stroke                                                                                                                     1-in-23

Accidental Injury                                                                                                   1-in-36

Motor Vehicle Accident*                                                                                      1-in-100

Intentional Self-harm (suicide)                                                                            1-in-121

Falling Down                                                                                                         1-in-246

Assault by Firearm                                                                                               1-in-325

Fire or Smoke                                                                                                        1-in-1,116

Natural Forces (heat, cold, storms, quakes, etc.)                                             1-in-3,357

Electrocution*                                                                                                       1-in-5,000

Drowning                                                                                                               1-in-8,942

Air Travel Accident*                                                                                           1-in-20,000

 SOURCES: National Center for Health Statistics, CDC; American Cancer Society; National Safety Council; International Federation of Red Cross and Red Crescent Societies; World Health Organization; USGS; Clark Chapman, SwRI; David Morrison, NASA; Michael Paine, Planetary Society Australian Volunteers

 Heart disease, Cancer, Stroke and Accidents claim the most people every year.  If you really believe in organ donation becoming a donor right now is the only logical thing to do.                                                                                                              

I hope everyone who reads this blog lives for a very, very long time but I also hope you recognize that there is no time to spare in becoming an organ donor.  My donor was only 30 years old when he died.  I’m sure he expected to live a lot longer than that but fate is unpredictable so why not arrange now to save some lives.  If you wait you could not only lose your own life but cause others to die because your organs were buried with You.                                                                                               

It is so easy to become a donor.  You can do it by going to www.donatelife.net , on Facebook or you can get free organ donation Apps for your cell phone, pads and computers too.  One is http://www.appbrain.com/app/donor-register/com.sam.donorregister  I understand that Blackberry and I-phone have similar apps.

Please understand the urgency. Please go to your computer right now and sign up and then be sure to tell your family, your physician and your faith leader if you have one and…when you renew your driver’s license make sure you check the organ donor designation.

Bob Aronson of Bob’s Newheart  is a 2007 heart transplant recipient, the founder of Facebook’s 1800 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.

Cheney Got a New Heart — Ethicists Need One


I am an average American male, human being.  I’m not a genius not gifted just a man of normal intelligence who likes to think and read and research and write about about what I’ve found.  Some things really stump me, though.   I’m terrible at math, I love physics but don’t have a clue about how any of it works, and even after spending a good many years as a professional broadcaster I still don’t completely understand how the sound and picture got from me to your radio or TV.  What mystifies me most, though, is the thought process of people who call themselves ethicists.  The word is even hard to say, you kind of feel as though you have developed a lisp.

Just so we are all on the same page here, it is important to define our terms.  First the Dictionary.com definition of ethics  http://dictionary.reference.com/browse/ethics

eth·ics

   [eth-iks] Show IPA

plural noun

1. ( used with a singular or plural verb ) a system of moral principles: the ethics of a culture.

2. (the rules of conduct recognized in respect to a particular class of human actions or a particular group, culture, etc.: medical ethics; Christian ethics.

3. moral principles, as of an individual: His ethics forbade betrayal of a confidence.

4.( usually used with a singular verb ) that branch of philosophy dealing with values relating to human conduct, with respect to the rightness and wrongness of certain actions and to the goodness and badness of the motives and ends of such actions.

Art Caplan of the University of Pennsylvania, the man who questioned whether the Vice President was too old to get a transplant, is a “Bioethicist.” The same Dictionary gives this definition.

bi·o·eth·ics

   [bahy-oh-eth-iks] Show IPA

noun ( used with a singular verb )

a field of study concerned with the ethics  and philosophical implications of certain biological and medical procedures, technologies, and treatments, as organ transplants, genetic engineering, and care of the terminally ill.

Having established who and what we are talking about let us return to the continuing saga of the Cheney heart transplant.  The ethicists are rallying behind their colleague Art Caplan.  One said, “The ethical issues are not that he (VP Cheney) got a transplant, but who didn’t?”

What an absurd argument!  That could be said about anyone who got a transplant.  if a 40 year old got a new liver, do we ask, “Who didn’t get the liver he just received?” I may not know much about ethics but I do have a clue about logic and somehow logic has been lost in the arguments forwarded by these learned people.  I wonder how well any of them would do on “Are you smarter than a 5th grader.”  Probably not real well being as that takes knowledge not philosophizing.

At the risk of sounding like a reactionary I have to say that some of these ethicists are the ones who got us in this donation shortage in the first place.  For years the ethicists have been telling us that the only ethical way to obtain organs is through the “Altruistic” system which is what we have now — people voluntarily becoming donors.   This method has been in effect since 1984.  The problem is that it doesn’t provide anywhere near enough donors to satisfy the need, therefore from 6000 to 7000 people die each year while waiting for organs.

The ethicists have met many times to consider alternatives to altruistic donation and each time after a great deal of philosophizing, consternation and speculation have found that the alternatives are, you’ve got it, “unethical.”

Now I’m no rocket scientist and don’t have a PHD or a fancy title like “Bioethicist” but I do have common sense.  It seems to me that if you are really concerned about ethics you would have to expand your thinking to a bigger picture.  These ethicists appear to have quit thinking about the problem when they reached their myopic conclusion.  They conveniently ignore the fact that people are still dying and will continue to die because they refuse to allow change.  Doesn’t that deserve some of their “ethical” brainpower, philosophizing and speculation, too?   It is amazing to me how strangely silent these “holier than thou” ethicists are about not questioning the ethics of allowing people to die.

There may be an explanation for their actions though and that explanation was found way back in 1931,long before transplants were considered possible.  You see, even then the medical community was having problems with ethicists who considered themselves to be “Experts.”  http://tinyurl.com/7c8fnho

Harold J. Laski writing in the London’s Fabian Society, manuscript in February of 1931, presented a challenge to the expertise of an “expert” in decision-making with the following:
:
“But it is one thing to urge the need for expert consultation at every stage in making policy; it is another thing, and a very different thing, to insist that the expert’s judgment must be final. For special knowledge and the highly trained mind produce their own limitations which, in the realm of statesmanship, are of decisive importance.

Expertise, it may be argued, sacrifices the insight of common sense to intensity of experience. It breeds an inability to accept new views from the very depth of its preoccupation with its own conclusions. It too often fails to see round its subject. It sees its results out of perspective by making them the centre of relevance to which all other results must be related. Too often, also, it lacks humility; and these breeds in its possessors a failure in proportion which makes them fail to see the obvious which is before their very noses.

It has, also, a certain caste-spirit about it, so that experts tend to neglect all evidence which does not come from those who belong to their own ranks. Above all, perhaps, and this most urgently where human problems are concerned, the expert fails to see that every judgment he makes, not purely factual to nature, brings with it a scheme of values which has no special validity about it. He tends to confuse the importance of his facts with the importance of what he proposes to do about them.”

I have no idea who Mr. or Dr. Laski was but his profound insight into the psyche of ethicists is a perfect reflection of my thoughts only articulated far more effectively.

I suppose there’s a role for ethicists to play in our society but at this point in my life (73 years worth) I don’t need a so-called ethicist to explain the difference between right and wrong to me.  I’ve not studied the great philosophers to the extent they have but living as long as I have and having had a heart transplant has pretty much instilled in me a set of values that I think are pretty solid.  That’s probably true about most people. We don’t need much help in making moral decisions.  Do we want information?  Sure.  Will we accept advice?  Sometimes.  Do we need to have ethicists make decisions for us?  Never!  Unfortunately they do and It has cost thousands of lives.

Bob Aronson, a 2007 heart transplant recipient is the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of 110 blogs on donation/transplantation issues on Bob’s Newheart on WordPress. 

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.

Journalistic Terrorism


I am a heart transplant recipient and a registered organ donor.  Today my new heart aches for the over 113,000 people on the national transplant list and their families because an irresponsible writer just told them their lives are unimportant and that they should go home and die.  I know what it’s like to be on that list.  I know firsthand the terror associated with the fact that because less than half of all Americans are organ donors some patients will die waiting.  In 2010 over 6,000 died and now the shortage of donor organs is even greater with the likelihood that the fatality list will go even higher. With the publication of a “don’t become an organ donor” column in the Wall Street Journal, the author and the paper have displayed a heartlessness I thought could not exist.  I would rather not believe that anyone would seek financial reward at the cost of human life but that’s what author Dick Terisi and Wall Street Journal owner and publisher Rupert Murdoch have done.  It is what it is – Journalistic Terrorism.

The irresponsibility of Terisi and Murdoch is going to cause a lot of people to die.  The story in question claims that physicians allow and even facilitate the death of patients in order to retrieve their organs for transplantation.  Not only is that charge wrong, it is reckless and life threatening.  The teams of people in hospitals that care for patients, however ill, are not connected nor do they report to the very specialized transplant teams in the same organization.  And – not all hospitals even have transplant capabilities.  There are 5, 754 accredited hospitals in the United States but only 242 of them are transplant centers.  Terisi makes it sound as though all hospitals are transplant centers with surgeons hovering over patients, scalpel in hand ready to retrieve organs.  That picture is not only distorted it is the product of the overactive imagination found in most fiction writers.  The problem is Terisi passes himself off as a knowledgeable reporter of actual events.  Let me be very blunt.  He knows better but lying about the process sells more books and that’s his bottom line.

His major point is that Physicians are cavalier in their approach to proclaiming brain death so that they can hurry the process of recovering organs for transplant.  Fact:  the procedure for determining death prior to recovery of organs is rigorous, thorough and as exact as medical science can make it.  My previous blog on the subject “Death by Journalism” explains the process for declaring brain death in great detail.   This story is a dramatic example of what I call “Junk” science.  He uses anecdotal evidence and off the cuff remarks of a single physician to make his point and calls it evidence.

Some readers are going to believe this nonsense and refuse to become organ donors.  Others, who are donors, may decide to reverse their decision.  In either case people will die as a result because the critical shortage of organs for transplant will become even more critical.  Terisi and Rupert Murdoch’s Wall Street Journal must be held accountable for this reckless endangerment of human life.  This time there is a cost for having a “Free” press and the cost will likely be the deaths of a good many people…just so an author can sell some books and a publisher can sell a few more newspapers. Shame on them!

If you want the facts about organ donation/transplantation and associated issues here are some links.

* Fact sheet.  Myths about organ donation (this link directly addresses the subject of care of dying patients)  http://tinyurl.com/7xngpet

* 25 facts about donation/transplantation National Kidney Foundation http://tinyurl.com/8o6uq2

* How the transplant system workshttp://tinyurl.com/7rccn3u

* UNOS facts about Transplantation in the U.S.  http://tinyurl.com/7bkmaft

* Transplant Recipients International Organization (TRIO) General information http://www.trioweb.org/

You can also read more about a wide variety of donation/transplantation issues on my blog Bob’s Newheart on WordPress www.bobsnewheart.wordpress.com

Bottom line.  We can’t stop people like Terisi and Murdoch from publishing lies and distortions but we can mitigate their effect by speaking up and letting the truth be known that organ donation threatens no one and saves thousands of lives.

Every organ donor can either save or enhance the lives of up to 60 people.  That’s a fact!  Tell the story and tell it often.  I’m here to write this piece because of an unselfish organ donor.  I will not let his action or his character be defiled because of the greed of a writer and publisher – I hope you will join me in honoring all donors and their families by spreading the word that organ donation saves lives.

Lodge your protest at Wall Street Journal Contact:
Online: onlinejournal@wsj.com
1-800-JOURNAL (1-800-568-7625)
Outside the U.S.:1-609-514-0870
Monday – Friday: 7am to 10pm ET
Saturday: 8am to 3pm ET

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.

 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.

 

Death by Journalism


On behalf of the over 1600 members of Facebook’s Organ Transplant Initiative and my Blog, Bob’s Newheart on WordPress, I am lodging a very strong objection to Dick Terisi’s inaccurate and life-endangering  column in the Wall Street Journal,  “What You Lose When You Sign that Donor Card.”  Not only should Mr. Terisi retract his irresponsible words he should also issue an immediate public apology to everyone on the national transplant list and their families.

Recently a hack journalist, Dick Terisi, published a column in the Wall Street Journal suggesting that American physicians were killing patients in order to extract their organs for transplant.  This irresponsible attack on a system that has saved thousands of lives and will save thousands more is worse than bad journalism it can only be termed what it is – death  by journalism, because there will be people who will refuse to become organ donors as a result.

I am a heart transplant recipient who knows the desperation felt by being on “the list.”  I can only imagine the emotional trauma Mr.Terisi caused with his reckless disregard for truth and lack of compassion for the dying and the loved ones who care for them.  He has also insulted the professional and personal integrity of every medical professional in the nation, but I’ll not take up their defense.  I’m sure they will rise to the occasion.

There are over 113,000 people on the aforementioned list but fewer than 30,000 transplants are done each year in the United States because of the shortage of organs.  That means that thousands die while waiting.  Mr. Terisi’s inaccurate portrayal of the donation system is based on “junk” science, anecdotal information and an “off the cuff” remark by a single physician.  It ensures that even more people will die because some readers will believe his distortions and either not become organ and tissue donors or change their existing designation to non-donor.

I know that others in the transplant community are preparing point by point responses to Terisi’s ravings so I’ll just touch on one – brain death. He told a simple lie so here’s the simple truth.

According to the American Academy of Neurology, brain death is defined as the irreversible loss of function of the brain, including the brain stem. The most common causes of brain death in adults are traumatic brain injury and subarachnoid hemorrhage (a form of stroke)   The guidelines for determining brain death were written by a team of experts lead by  Eelco F. Wijdicks, M.D., Ph.D. from the Mayo Clinic in Rochester, Minnesota.  Dr.  Wijdicks is considered the preeminent expert on brain death in the world – and he says, “The brain death diagnosis can be made only after a comprehensive clinical evaluation that often involves more than 25 separate assessments.”  These assessments must be done by highly qualified physicians.

OK…I’ve given you the simple truth now here’s a detailed  explanation as printed in Critical Care Nurse which is a far cry from the simple almost cavalier approach suggested by non-physician, non-medical expert, non-donor and self proclaimed, “heartless, selfish bastard” Dick Terisi.  http://ccn.aacnjournals.org/content/24/5/50.full

“Current standards for making a diagnosis of brain death require (1) identification of the suspected cause of the coma, (2) determination that the coma is irreversible, (3) performance of a clinical examination, and (4) interpretation of appropriate neurodiagnostic and laboratory tests.1 Identification of the cause of coma is based on the patient’s history and the results of neurodiagnostic tests such as computed tomographic scans. Common causes of brain death detected on computed tomographic scans include brain masses with or without herniation and edema.1 In determining the cause of the coma, conditions that could confound the clinical assessment must also be ruled out, such as hypothermia, hypotension, severe acid-base abnormalities, drug or alcohol intoxication, sedation, and neuromuscular blockade.

The next step in diagnosing brain death is performing a directed, clinical examination. According to the American Academy of Neurology,2 each criterion of the clinical examination should be satisfied on 2 separate occasions. The length of time between examinations has not been defined and varies depending on the cause of the coma. The American Academy of Neurology2 has suggested that a 6-hour interval between examinations is reasonable; others1 have recommended a period of up to 48 hours in instances in which unknown toxins may be responsible for the coma. In addition, 2 conditions must be met before the clinical examination is conducted: the patient’s blood pressure should be greater than 90 mm Hg, and the patient’s body temperature should be greater than 32°C (90°F).

The clinical examination includes an evaluation of overall responsiveness, brain-stem reflexes, and apnea testing. The patient should be deeply comatose, with no response to painful or verbal stimuli, including decorticate or decerebrate posturing. He or she should also have no spontaneous movement, including shivering, seizures, or respiratory movement. The single exception is movement resulting from spinal reflexes. The assessment of responsiveness and movement requires that the effects of all neuromuscular blocking agents and sedatives have worn off completely.”

Mr. Terisi’s column is bad enough but the Wall Street Journal cannot be absolved of blame.  Terisi would have had a far smaller audience and a minimized effect had the Wall Street Journal used sound journalistic judgment and trashed this extremely shoddy piece of journalism.  WSJ ought to join Terisi in the public apology I called for earlier but I expect neither to do so because that takes “class” and integrity — commodities which neither seem to possess.

Lodge your protest at Wall Street Journal Contact:
Online: onlinejournal@wsj.com
1-800-JOURNAL (1-800-568-7625)
Outside the U.S.:1-609-514-0870
Monday – Friday: 7am to 10pm ET
Saturday: 8am to 3pm ET

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.
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.

Bob Aronson

Heart Transplant recipient

Jacksonville, Florida

Not Enough Transplantable Organs, Thousands Die…Options for Change


There will come a time when organ/tissue/blood donors are no longer needed.  Advancements in mechanical devices, therapeutic cloning (duplication of organs not people) and regenerative methods will negate the need for human donation.  But, that’s not going to happen any time soon and until it does we are going to have a shortage that results in thousands of unnecessary deaths.

Twenty eight years ago, The National Organ Transplant Act (NOTA) was approved.  Sponsored by Democrat Representative Al Gore and Republican Senator Orin Hatch the act outlawed the sale of human organs and provided for the establishment of a volunteer (Altruistic) system of organ donation in the United States. NOTA  also authorized the Department of Health and Human Services (DHHS) to make grants for the planning and establishment of Organ Procurement Organizations (OPOs); and established the formation of the Organ Procurement and Transplantation Network (OPTN). 

That was 28 years ago.  Since then thousands of lives have been saved by organ transplants but the number of available organs has always, from the very beginning, lagged behind the number of people who need them.

As of right now there are 112,640 waiting list candidates but so far this year there have been only 23,745 transplants done and only 11,711 donors (data from UNOS, the United Network for Organ Sharing www.unos.org ). The numbers are really all the evidence we need to show that the altruistic system is not working.  Each year about 6,000 people die while waiting for a transplant.  Thousands of other Americans never even get on the list because of a lack of access to specialized care or because they can’t afford a transplant. 

While many find this to be an intolerable situation neither DHHS nor UNOS seem interested in making any change to the system.  From time to time they will assemble “Ethics” panels to study ways to augment or change it but the answer is always the same, “Unethical.” One can easily ask, “What is ethical about letting all these people die?  How can you possibly look at these numbers and say, “Presumed consent and/or some kind of compensation system for donors, is unethical?”  Surely something can be designed that will provide the needed number of organs and still be an ethical practice.

I recognize that the highly skilled, educated professionals who make these “Ethical” decisions are faced with a double edged sword 1) changing the system could produce negative publicity and affect their reputations and perhaps some funding and 2) the ethics of allowing people to die.  Given those conditions it still seems that allowing people to die is more unethical than making some well-considered changes that would harm no one and benefit many. And…the situation is only going to get worse because modern technology is allowing people to live longer which is adding to the list of people waiting for transplants.

Twenty eight years of letting people die.  About 168,000 people are gone because the Ivory tower thinkers refuse to or are afraid to make a change.  Had changes been made in the past many of the 168,000 casualties would be alive today and who knows what contributions they might have made to our society.   

As I noted in the first paragraph, in the long term we probably won’t need to have a donor system but it will be many years before any of those means become commonly practical.  So we’re stuck with the old question, “What do we do to narrow or eliminate the gap between available organs and those who need them?”

My research indicates that while there are not a plentitude of options to consider there are some and they include:

 

  1. 1.    Mandatory donation (anyone who dies is automatically a donor, no exceptions)
  2. 2.    The LifeSharers approach, (you can only receive an organ if you are a donor)
  3. 3.    Presumed consent (You are automatically a donor unless you opt out)
  4. 4.    Some sort of compensation plan for donors and/or their families.
  5. 5.    A combination of presumed consent and a payment system

 Let us tackle mandatory donation first.  On its surface it sounds harsh and like a product out of an HG wells book.  It is harsh and probably unacceptable because of its dictatorial overtones.  Americans don’t seem to like anything that is mandatory whether it is good for them or not, so mandatory donation is unlikely to receive enthusiastic support.

 Aaron Spital, and James Stacey Taylor (Department of Medicine, Mount Sinai School of Medicine, New York, New York; and Department of Philosophy, College of New Jersey, Ewing, New Jersey) have written a persuasive paper on the subject of mandatory organ donation. http://tinyurl.com/6wavm4b. Their proposal is simple:  

 ”We propose that the requirement for consent for cadaveric organ recovery be eliminated and that whenever a person dies with transplantable organs, these be recovered routinely. Consent for such recovery should be neither required nor sought.”   

The two researchers go on to say,

“We believe that the major problem with our present cadaveric organ procurement system is its absolute requirement for consent. As such, the system’s success depends on altruism and voluntarism. Unfortunately, this approach has proved to be inefficient. Despite tremendous efforts to increase public commitment to posthumous organ donation, exemplified most recently by the US Department of Health and Human Services sponsored Organ Donation Breakthrough Collaborative many families who are asked for permission to recover organs from a recently deceased relative still say no. The result is a tragic syllogism: nonconsent leads to nonprocurement of potentially life-saving organs, and nonprocurement limits the number of people who could have been saved through transplantation; therefore, nonconsent results in loss of life.”  

While it is difficult to disagree from a purely logical standpoint, emotions run high on issues like this and it is unlikely to get approval from the American Public.

The second option listed is the approach where registered donors would be offered organs first, regardless of how ill other patients on the list might be.  In the U.S. there is one organization, LifeSharers, that has promoted that idea for several years and while they have nearly 15,000 members (http://lifesharers.org/) they have had virtually no impact. In order for the concept to work, they would have to sign up just about every single American…that’s not likely to happen and as far as we know, no LifeSharers member has yet been a donor to another LifeSharers member.  To be fair, however, the nation of Israel has adopted a form of the LifeSharers program but it’s still too early to make any assessments on its success or acceptance. 

Most people who object to the “Donors” first concept say it is because it deviates from the practice of offering organs (provided there is a match) to the sickest patient first.  Their program would offer organs to members first and then if there was no match, the organ could go to the sickest person.  Many people object because despite our great national communication system, there are still millions of people who don’t understand the donation/transplantation process, haven’t heard about it, didn’t know you could register to be a donor or, because of a multitude of myths, think they can’t be donors. Despite the honorable efforts by LifeSharers founder Dave Undis, the concept is not being seriously considered by the U.S. transplant community.  Additionally LifeSharers growth has been slow indicating limited acceptance by the public.  You can learn more about LifeSharers at http://www.lifesharers.org/

The third option is presumed consent and if any option is ever approved in the United States or even some of the states, this will likely be the one. Currently under our altruistic program people “opt in” by signing a donor card and having “Donor’ placed on their driver’s license or other official state ID card. Presumed consent is the opposite.  It assumes that everybody wants to be a donor and so you would “Opt out” if you don’t want to be a donor and likely would carry a card that says “Not a donor.”  You can learn more about presumed consent at http://tinyurl.com/7mcjoez.

In countries where presumed consent is in effect, (Austria, Spain, Portugal, Italy, Belgium, Bulgaria, France, Luxembourg, Norway, Denmark, Finland, Sweden, Switzerland, Latvia, Czech Republic, Slovak Republic, Hungary, Slovenia, Poland, Greece, and Singapore) the opt out rate has been around 2% which means that 98% of the eligible population would be organ donors as opposed to under 50% in the United States where we have the opt In program. That’s a big difference.  The great leveler, however, may be that the countries with opt out as their system still ask family members, at the time of the donors death, for their approval. If they refuse the organ is not recovered. 

The most politically sensitive of all the issues is the outright sale of organs.   At this point I know of no serious effort in the U.S. that would change our laws to allow a person to sell his/her organs on the open market.  It is not realistic to think that any U.S. regulatory or government agency would even consider the idea.  Strangely, In Iran of all places, it is legal to sell organs and a healthy kidney retails for about $6,000.

Iran legalized living non-related donation (LNRD) of kidneys in 1988.  The Iranian government regulates and funds the donation/transplantation process and compensates donors for their organs. A third-party group arranges contact between donors and recipients (much like U.S. Organ Procurement Organizations (OPOs). In addition to payment from the government, donors receive free health insurance.  The transplant recipient benefits from highly subsidized immunosuppression support. Iranian law also provides for charitable organizations to pay the cost of transplants for people who can’t afford them.  Here’s an interesting twist, though.  It is illegal for the medical teams or any ‘middleman’ like our OPOs to receive payment.  Within a year of being implemented the number of transplants in Iran almost doubled.

 They system seems to be working in Iran and it certainly could work here…it isn’t as though we aren’t selling things similar to organs.  Currently in the United States it is legal to sell yourself to become a surrogate mother and everyday people are paid for sperm, eggs and hair so why not organs.  The Iran concept is certainly an option but polls continually indicate it is not a very popular one.

 There are some variations on the “Payment” theme that might be attractive to the American people.   We could consider a system that “compensates” rather than pays donors or their families.  For example, a living kidney donor does not have to pay for the surgery to remove the donated kidney nor does that person have to pay for any of the medical care surrounding the operation those costs are absorbed by the recipients insurance coverage.  The donor’s, though, often accrue other expenses like travel to the city in which the recipient lives, lodging, food and time away from work, which could be significant especially if there are any surgical complications.  A very good case could be made for compensation for these expenses.

There are other considerations as well. Dr. Sally Satel a Psychiatrist and a kidney transplant recipient who is also a resident scholar at the American Enterprise Institute has written and spoken extensively on the subject of compensation, “The solution to this lethal paternalism, as I and others have argued, is not to create a direct exchange of cash for kidneys, but for Congress to let donors accept a carefully devised and regulated government benefit — perhaps a tax credit, a contribution to a retirement plan or early access to Medicare.” 

It would not be a huge stretch to extend Dr. Satel’s ideas to families of deceased donors while also covering funeral expenses even providing some help with college tuition for their children, subsidized prescriptions or even subsidized health care insurance. You can read more on Dr. Satel’s thoughts by going to http://tinyurl.com/yabluu3 .

The final option that could be considered is a combination of presumed consent and a form of compensation that follows the lines described by Dr.Satel. 

The point of this blog is to just get people thinking.  The present system isn’t doing the job and never will despite heroic efforts at increasing organ donation, there just aren’t enough donors.  That we must change if we are to stop the dying, is a given.  Determining what that change should be is what is so incredibly difficult. 

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Consider what I’ve written, discuss it with friends, join discussions on Facebook’s Organ Transplant Initiative and comment in the space provided here.  When you have decided what you think is the best solution, you should contact your elected representative or U.S. Senator and let them know your feelings.  Change has to begin somewhere, why not with you?

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 two brand 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.  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.

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