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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.

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Medicaid and Medicaid Expansion. Where and How to Get it.


medicaid cartoon

By Bob Aronson

I will start this post by saying that you are about to get more information about Medicaid than you wanted or likely have seen in one place before.  I am doing that so that you have to do as little homework as possible.

In order to eliminate confusion the reader should know that as of this writing every U.S. state provides some sort of Medicaid.  When you read stories that a state has opted out of “Expanded Medicaid” under the Affordable Care Act (ACA) that doesn’t mean they have decided not to fund Medicaid at all.  It only means they will not participate in the expanded program offered by the U.S. Government.  It also means that fewer people will be treated for fewer medical problems.

Every state in the union currently has some sort of Medicaid program.  Medicaid is the largest source of funding for medical and health-related services for lomedicaid logow-income people in the United States. It is means-tested that is jointly funded by the state and federal governments and managed by the states, with each state currently having broad leeway to determine who is eligible for its implementation of the program.  Some states are far more generous than others but none are required to participate in the program.

Medicaid recipients must be U.S. citizens or legal permanent residents, and may include low-income adults, their children, and people with certain disabilities.  Poverty alone does not necessarily qualify someone for Medicaid as poverty guidelines differ from state to state.

How to apply for Medicaid.  

Many states offer the ability to apply for Medicaid directly on their websites. These applications can generally take anywhere from a half an hour to an hour to complete. If your state doesn’t have an online application, you may be able to at least access a copy of it online that you can download and fill out at your convenience. If it doesn’t, you will need to take a trip to your local Department of Social Services and request their assistance with filling out your application. In most cases, you’ll have the option of taking the application with you and bringing it back in, or mailing it back in, or you will be seen immediately, if you wish.  More details can be found here http://tinyurl.com/kfg34bv

Do You Qualify for Medicaid?

If the previous link did not answer your questions this link should.   https://www.healthcare.gov/do-i-qualify-for-medicaid/#howmed

Medicaid Then and Now

Prior to Medicaid expansion on the Affordable Care Act (ACA) of 2010 Medicaid was and is administered as a partnership jointly funded by the federal government and the states, with the feds contributing anywhere from 50 percent to 74 percent of expenses (the average nationwide is 57%). For states who sought to provide care to the disadvantaged and others it was a pretty good deal.

ACA expansion greatly increased the federal investment in state programs.  Under the ACA the federal match rate, starts at 100 percent in 2014 and gradually declines starting in 2017 until it reaches 90 percent for 2022 and beyond.

Unfortunately for those who need Medicaid 26 states have chosen not to participate in the expansion.  They have that option because of a U.S. Supreme court decision that upheld all other aspects of the Affordable Care Act except making the expansion mandatory. Again, Medicaid programs are only available to people with low incomes, limited resources, or certain diseases or disabilities

ACA otherwise known as Obamacare has been the subject of a bitter political battle since long before it was passed into law. The Republican controlled U.S. House of Representatives  believes the law is ineffective and unaffordable.  As a result House Republicans not only voted against it they have unsuccessfully tried to repeal the law 40 times.  The great majority of states that have rejected expansion are Republican controlled.

Let us begin with where the states are with regard to Medicaid expansion.   The following states have said yes to the Medicaid expansion:

Arizona, Arkansas, California, Colorado, Connecticut, Delaware, D.C., Hawaii, Illinois, Iowa, Kentucky, Maryland, Massachusetts, Michigan, Minnesota, Nevada, New Jersey, New Mexico, New York, North Dakota, Oregon, Rhode Island, Vermont, Washington, West Virginia

The following states have said no to the Medicaid expansion.

Alabama, Alaska, Florida, Georgia, Idaho, Indiana, Kansas, Louisiana, Maine, Mississippi, Missouri, Montana, Nebraska, New Hampshire, North Carolina, Ohio, Oklahoma, Pennsylvania, South Carolina, South Dakota, Tennessee, Texas, Utah, Virginia, Wisconsin, Wyoming

I wish there was a way to tell readers exactly what to expect for their situation but that just can’t be done because there are so many variables.  Medicaid is a complex and often difficult to understand program.  If you are curious about your eligibility the best we can do is to refer you to links for more information but at least you won’t have to spend time searching for them, we’ve done that for you.  Once you begin your search though, be sure you have plenty of time and hot coffee because you will be doing a bit of studying.

National Public Radio has done a tremendous job of sorting out questions and answers about Medicaid.  Here’s just one of their many “Explainers.”

FAQ: Where Medicaid’s Reach Has Expanded — And Where It Hasn’t

http://tinyurl.com/l5nnxyr

October 11, 2013 3:00 PM

This is one of several explainers to help consumers navigate their health insurance choices under the Affordable Care Act, or as some call it, nprObamacare.  For answers to other common questions you can click here http://tinyurl.com/lwtqtsv Have a question we missed? Send it to www.health.npr.org  We may use it in a future on-air or online segment.

Could I be eligible for Medicaid now?

The Affordable Care Act greatly expanded the number of people who qualify for Medicaid, the state-run health insurance program for people with low incomes. Previously, it was difficult for anyone other than pregnant women, parents and children to qualify. The law expands eligibility in ways that will allow many more people, including single and childless men or women, to qualify.

How do I know if I’m eligible for Medicaid?

The law extends eligibility to all adults under the age of 65 whose modified adjusted gross incomes fall below just under $16,000 for individuals and $32,500 for a family of four.

In states that decided not to participate in the Medicaid expansion, the rules are different and vary from state to state. About half of the states opted out of the Medicaid expansion, which is something that the U.S. Supreme Court gave them permission to do. In those states, the income cutoff to be eligible for Medicaid is generally much lower than what was set in the Affordable Care Act, so fewer people will qualify. And if you’re a childless adult, you’re most likely not eligible in states that rejected the Medicaid expansion.

To find out the income cutoff in your state, you can check out the tables here http://tinyurl.com/n55suho

Or, just try signing up for coverage at your health insurance exchange. The exchange will calculate if you are eligible for Medicaid in your state, and if you are, direct you to the proper state agency to get signed up. http://tinyurl.com/meyyzgs

What if my state didn’t expand Medicaid?

If your income is too high to qualify for Medicaid under your state’s rules, you can still try enrolling at an insurance exchange. You may not qualify for subsidies, though. The subsidies are for people whose income falls between 100 percent of the ($11,490 for an individual) and 400 percent ($45,960).

If you make too much to qualify for Medicaid but too little to qualify for subsidies on the exchange, then you are exempted from the new mandate to carry health insurance. http://aspe.hhs.gov/poverty/13poverty.cfm

If that’s your situation — you’re poor and still have no health insurance — you can still seek health care with other safety net providers, such as federal community health centers and free clinics run by local nonprofits.

If I am sick and unable to work and have no income, can I get a plan on an exchange for free?

If you are disabled and have no income, you most likely won’t be shopping for insurance on the exchanges. Rather, you may qualify for Medicaid. In , if you qualify to collect Supplemental Security Income, or SSI, you also qualify for Medicaid. For more information on Medicaid eligibility and links to your state’s Medicaid office, click here http://tinyurl.com/7mevcmw

See other Frequently Asked Questions on Medicaid and the Affordable Care Act:

While I would very much like to be able to provide details about every state’s Medicaid program neither time nor space allow for that undertaking.  I will, by way of this post, try to provide some general guidelines but it will be up to you to determine exactly what your state offers.

Although the federal government sets up general guidelines, each state runs its own Medicaid program. States establish what health care services are covered and which groups of people get coverage. As a result, Medicaid programs vary a great deal from state to state.

Keep in mind, too, that even if you can’t get Medicaid benefits, your child still may be eligible.

More Frequently Asked Questions About Medicaid

Q.        How Much Do Medicaid Programs Cost?

A.        The cost of a Medicaid program depends on the state. Some programs require you to make a small co-payment for medical services in addition to what Medicaid pays.

Q.        What Does Medicaid Cover?

A.        In general, Medicaid programs offer more comprehensive medical coverage than Medicare. They usually include hospital stays, visits to doctors, tests, some home medical care, and more. Again, the specifics vary from state to state.

Q.        What Else Do I Need to Know About Medicaid?

A.        Some people qualify for both Medicare and Medicaid programs. They are called “dual eligibles.” In these cases, Medicaid may pay some of your Medicare fees.

  • If you qualify for both Medicare and Medicaid and enroll in a Medicare Prescription Drug Plan, you are eligible for help in paying your drug plan’s monthly premium, deductible, and co-pays.

To learn more about Medicaid programs, visit the U.S. government’s Centers for Medicare and Medicaid Services (CMS) web site. 

Fiscal Impact of the Medicaid Expansion on State Budgets

Medicaid as of September 4, 2013 The Supreme Court ’s decision on National Federation of Independent Business et al v. Sebelius1 upheld all provisions of the Affordable Care Act (ACA) including the individual responsibility requirement, health insurance exchanges and subsidies, and the Medicaid expansion. However, the Court restricted the federal government’s ability to withhold federal Medicaid funds if a state

Emphasis on Primary Care and on Primary Care Physicians

The Affordable Care Act emphasizes primary care and seeks to increase the number of primary care physicians willing to provide services to Medicaid patients. To that end, Medicaid payments to primary care physicians will increase to 100 percent of the Medicare payment rates for the years 2013 and 2014. Current payment rates for primary care physicians under Medicaid vary markedly from state to state, but on average they are 66 percent of Medicare reimbursement rates.

Physicians who will be receiving the higher rates are those engaged in family practice, general internal medicine and pediatric medicine. As with the cost of making more individuals eligible for Medicaid, the federal government will pay 100 percent of the added costs for payments to primary care physicians. Payment rates after 2014, and the division of responsibility between the federal and state governments to pay them, has not been determined.

Additional Information Resources

http://www.medicaid.gov/

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our new music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

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

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

Can Cellular Memory Cause Transplant Recipients to Act Like Their Donors?


I have been writing these blogs for almost five years.  All of them are related to organ and tissue transplants and they range from how alcohol and drugs affect your organs to eating disorders, post transplant depression, mandatory donation and the Vice President Cheney Heart Transplant.  None of them, though, have gotten anywhere near the response of the posts I’ve written about Cellular memory, the theory that certain cells in the body have memories of their own and that when transplanted into another person become the new person’s memories as well.

Personally I don’t  put much stock in the claims of cellular memory but a  lot of people do so who am I to say they are wrong especially when I get so many requests for more information on the subject … so here’s the latest I could dig up.

While many scientists will tell you that cellular memory is impossible there really isn’t very much science on the subject.  Studies have been small and rare so while there is a lot of scientific doubt there is no absolute proof that the phenomenon does not exist.

Most doctors attribute the sometimes seismic personality changes after a transplant to radical health improvements, heavy doses of anesthesia and anti-rejection medications and psychological factors.

Like others University of Arizona psychologist Gary Schwartz has little real evidence to back up his theory that since every cell in the body contains a complete set of genetic material, transplant patients inherit DNA from their donors that determines, in part, how a person thinks, behaves and even eats. “Hearts can have memory, as brains do,” says Schwartz. Most doctors, however, say that’s the stuff of the Sci-Fi Channel and note that Schwartz based his theory on a study of just 10 transplant patients. “There is no evidence of clinical findings to suggest that [cellular memory exists],” says Dr. Tracy Stevens, medical director of the cardiac transplant program at St. Luke’s Hospital in Kansas City, Mo. You can read more here http://www.people.com/people/archive/article/0,,20147267,00.html

While medical and other scientific researchers will tell you that a truly scientific study would take years among perhaps hundreds of people there are some unexplainable individual cases.  One of which is the story of Claire Sylvia who got a heart and lung transplant in the 1970s from an eighteen year old male who had died in a  motorcycle accident.  Ms. Sylvia knew oone of this information but claimed upon awakening that she had a new and intense craving for beer, chicken nuggets, and green peppers, all food she didn’t enjoy prior to the surgery. A change in food preferences is probably the most noted in heart transplant patients. Sylvia wrote a book about her experiences after learning the identity of her donor called A Change of Hear.  You can watch her video here  http://www.youtube.com/watch?v=OIDwRnBcrGw

And…if the Claire Sylvia story is not enough, here is yet another about a young woman, Julie Shambra in England  who after suffering from diabetes for many years got a life saving transplant from a young man that changed her life and many of her habits and tastes. http://www.youtube.com/watch?v=NVVk3zAz8Qo&feature=related

The most stunning example of cellular memory was found in an eight year old girl who received the heart of a ten year old girl. The recipient was plagued after surgery with vivid nightmares about an attacker and a girl being murdered. After being brought to a psychiatrist her nightmares proved to be so vivid and real that the psychiatrist believed them to be genuine memories. As it turns out the ten year old whose heart she had just received was murdered and due to the recipients violent reoccurring dreams she was able to describe the events of that horrible encounter and the murderer so well that police soon apprehended, arrested, and convicted the killer.  Unfortunately I have been unable to find out where or when this happened so there is no real proof that the story is anything more than an urban myth.

But then there are these stories:

Bill Wohl was a hard-driving self-described type A executive until cardiac disease nearly killed him in 2000. A heart transplant at the University of Arizona medical center saved his life—and transformed it in ways he could never have imagined. Weeks after his operation, Wohl, now 58, heard a song on the radio by the British vocalist Sade. “I just started crying and rocking,” he recalls. Odd, since before the surgery, Wohl hadn’t heard of Sade and was not the type to mist up over a torch song. Later he contacted the family of organ donor Michael Brady, the 36-year-old Hollywood stuntman whose heart he had received, and made an intriguing discovery. Sade was one of Brady’s favorite singers. “It was,” says Wohl, “really, really freaky.”

And then there is Paul Oldam, a corporate executive in a Milwaukee law firm, received the heart of a 14-year-old boy who had been killed in a truck accident in 1993. On Oldam’s first post-surgery shopping trip, his wife, Peggy, was taken aback when he wandered into the candy aisle and started loading the basket with Snickers bars. “He never liked candy before that,” Peggy says other husband, now 70. Bill also became an avid outdoorsman, given to kayaking, cross-country skiing and cycling 25 miles at a stretch. “I wouldn’t be surprised,” says Peggy, 69, “if he wanted to try parachuting next year.”

How Cellular Memory Might Work

It is thought that cellular memory might be possible since the discovery that neuropeptides exist not only in the brain as once thought but in all the tissues of the body. These neuropeptides are a way for the brain to “speak” to other bodily organs and for the organs to rely information back. However it is unknown if these newly found circuits could indeed store memories as the brain does in different organs. Due to the amount of peptides in the heart this organ is seen to have special potential in the study of this phenomena. However many answers still remain. Why don’t all transplant recipients have these experiences? It’s been theorized this may be due to the fact not all of them are in tune with their body as some other individuals may be. Perhaps the explanation lies with the sensitivity of the individual.

According to a story in Hub Pages which is not exactly a respected medical journal there are three possible explanations for cellular memory http://theophanes.hubpages.com/hub/Cellular-Memories-in-Organ-Transplant-Recipients

  • The Hospital Grapevine Theory: The hospital grapevine theory is the simplest alternate explanation, stating that patients may be influenced due to information they hear from nurses talking to each other or their surgeons while they are under anesthesia. Although it’s forbidden to tell a transplant recipients the identity of the donor or any personal information there’s no such rule that prevents hospital staff from talking amongst themselves. Could all these coincidences be a placebo effect given to the highly suggestible?
  • The Quantum Theory: this theory claims that the answers may lie in a world we are as of yet are very ill-equipped to prove, in the wonderfully strange world of quantum mechanics. Quantum mechanics tries to explain mathematically events that occur with atoms and the particles which may make up atoms. This is world where regular physics comes to die and can be used loosely to explain virtually anything that can’t be explained otherwise. It’s tempting but I’ll leave this one up to the mathematicians to toy with. As of yet I haven’t heard of any of them proposing this theory, it seems to be something thrown out there by laymen.
  • The Drug Theory: It is the body’s duty to protect itself from foreign objects and that is generally what it does when it receives organs that weren’t grown in it from conception. This is why patients have to receive immunosuppressant drugs to stop their own bodies from attacking the new organ. There have only been a small handful of cases of people who have lived without these drugs, and they have done so on their own against the advice of doctors. this theory states that these drugs can be the cause of the changes in personality. Perhaps in some strange way these drugs can be psychoactive as well as immunosuppressive. This theory probably chalks up the specific nature of the said changes in personality to coincidence.

There is no definitive evidence one way or another that cellular memory exists.  I can only speak for myself but I had a heart transplant almost five years ago and have absolutely no change in my personality or lifestyle at all.  I am more appreciative of life than ever before but I think that might be true of anyone who was dying and had their life saved by a total stranger.

So we’ll close with the now well-known line, “We report… you decide.

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

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

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

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

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

“RockScar Love is where “Scars R Sexy”


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

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

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

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

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

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

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

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

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

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

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

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