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Donor Mom Meets Man with Son’s Heart


When I stand before God at the end of my life, I hope I have given away my talents, my love and my organs and can say, “God I used everything you gave me to benefit others. Anonymous

By Bob Aronson

amtrakk-engineThe time had come. Claire Connelly was finally going to meet the man who had her son Paul’s heart. She would travel from southern to northern California by train to meet him. This trip was more than just an opportunity to meet the man, it was the culmination of a three-year long search. Claire was determined to let nothidonate-lifeng get in the way of this meeting. She was so afraid that she might oversleep and miss her train, she drove to the Amtrak station the evening before and slept in her van in the parking lot. Meeting her son’s’ heart recipient had become Claire’s sole purpose in life, so when she boarded that train last Monday morning her heart was in her throat.

The recipient’s name is Ken, he cherishes his privacy and we agreed to identify him only by that name. He is retired and lives with his wife in a northern California city. Claire was not only invited to meet Ken and his wife, but also to stay in their home for a few days so they could get to know each other

Before we go any further, let me take a moment to remind you who Claire Connelly is. claire-selfieI wrote about her in a blog on October 21, 2016. To meet her, even by phone is to love her. She is kind, upbeat, considerate and passionate about life and living. Claire is your favorite aunt — you know, the one who is funny, always has a gift for you and really listens to what you have to say. She’s one of those people who brings energy and love of life into any conversation. When you talk; with Claire you can’t help but feel good.

PAUL OBITUARY PHOTO

Claire’s son Paul

Claire has suffered unimaginable pain in her life. She had three children, two boys and a girl. Now, only the daughter remains. Her son Pete died of cancer at the age of 46 in 2008, and 49-year-old Paul’s life was taken by a stroke in 2013. Losing two sons within five years is tragic enough, but Claire’s pain was compounded because they died on the same date — October 13. “What are the odds,” she asks. “What are the odds that you would lose two sons within five years of one another and on ecg light blue on darker bluethe same date on the calendar?”

When she was called to the hospital in 2013 Paul was on life support. His driver’s license indicated that he was an organ donor, so when asked if she wanted to donate his organs, Claire Agreed immediately. She does not know who got his other organs, but she’s satisfied to know that Ken got his heart.

I could feebly try to describe her feelings about meeting Ken, but that would be wrong. Her own words provide drama and emotion that I could not begin to write. When she got on the train on December 12, she carried with her some gifts for her son’s heart recipient along with a stethoscope so she could listen to his heart.  As soon as she boarded, she sent me a text, “On the train. On way to meet Ken,” she said. Her writing describes the stream amtrak-2of random thoughts that somehow merged like two sets of railroad tracks. Claire kept a journal as the train sped north. If you close your eyes you can almost hear the clacking of the wheels on the track and the whistle being blown as intersections are crossed.

The words that follow are Claire’s from her journal. When you read them you will have the rare privilege of being able to listen in on a mom’s thoughts as she anticipates hearing her son’s beating heart for the first time in three years.

“Getting to meet Ken is the very best Christmas present I could have ever received, but let meclair-and-paul-hug make one thing very clear, this is not my story or Ken’s. My son Paul is the hero here. Long ago he made the decision to become an organ donor. All I did was to ensure that his wishes were fulfilled.

Ken and I have been speaking by phone since August 12 and now I’m actually on the train going to meet him and his wife.  He is alive today because my wonderful son Paul made the

claire-and-kens-wife

Claire and Ken’s wife Janice

 

courageous decision to become an organ donor.

Ken has expressed his gratitude many times, but more than that he lives his gratitude. This kind gentleman will not drink alcohol or coffee because he has “too much respect” for Paul’s heart! Oh lord, my soul can finally rest knowing that Paul’s heart has found the best possible safe harbor. To know that I gave birth to the heart that is beating within this man’s chest and that he is sharing my own DNA as he sits across from me or goes about his day is something I can barely get my head around!

Recently I found a photo of a Paul when he was just four years old. He was holding his

kens-wife-at-xmas

Jan trimming the tree

fishing pole, Oh how he loved fishing and wouldn’t you know it, Ken loves fishing, too! I had that picture framed to give to Ken because that sport is his passion and I wanted him to know he had the heart of a fisherman. Strange but there were some other links I discovered, too. For example, they both drove the same model of pickup truck and both smoked the same type of Cigarillos.

Because of our telephone, text and email contact, I now have a bond with this remarkable man that is as close as any other I have and it warms my heart to know that he is in this world. What might appear to some as a quick four-day trip would be to miss the point. I’ve been on this journey for three long years, a journey that would reunite me with the essence of Paul. The anticipation of leaving the melancholy life i have known for the past three years and approaching a new fulfilling relationship with my new “son” kept me on the verge of tears until our initial embrace.” 

When the train arrived and squeaked and squealed to a slow stop. Claire got up from her seat and headed for the door. Ken and Jan were there waiting for her. The meeting was almost wordless, yet spoke reams. Again, Claire’s words.

“Immediately when I got off the train there were lots of long hugs. It seems as though none of us wanted to let go, but eventually, we got in the car, had a lovely dinner and talked and hugged again till late in the evening.

more-searching

There were plenty of hugs for everyone

The following day, we spent in our jammies, just hanging out at the house, everyone comfortable with each other. That’s when I brought out the mementos. A coffee mug that said, “I had a change of heart,” Paul’s fishing picture, Paul’s key ring, a special pencil that was engraved with Paul’s name and some other things that I either made or purchased. Ken loved all of them, he even has a collection of keys.

Still in our jammies, we continued to talk as we set up and decorated the Christmas tree. We
had so much fun doing it, it was so meaningful we committed to making it a tradition and doing it every year.

Finally, I hollered into the living room, “Ken, bring that heart in here, I want to listen to it.” I had my stethoscope in my hand.  

He stood in front of me and with the earpieces in, I touched the chest piece to where I thought his heart was but heard nothing. I kept trying but couldn’t seem to find it and

It was then that Ken took my hand and the stethoscope chest piece and placed it on his heart. Then — then I heard the soft, steady, rhythm, “Thump thump – thump

she-finally-hears-his-heart

After three years she hears Paul’s heart again. A part of her son is still alive.

I was listening to my son’s heart again. My eyes filled with tears and I got a lump in my throat, I couldn’t stop listening. Paul’s heart was keeping this lovely man alive. I thought to myself, I can now rest. The long wait is over and I no longer have to wonder. I am at long last at peace with the world. I finally heard Paul’s heart. A part of my son was alive and well.

Ken told me that just before the transplant, the Surgeon asked him if he wanted to see the heart. When he looked, it started to beat and the doctor said, “This heart wants to live,” and the procedure was started. Ken said he was told that his transplant only took seven hours, a much shorter time than usual. He was also told it was the smoothest, least complicated transplant the Doctor had done.”

Hearts are amazing organs. A man’s heart, for example, beats 70 times a minute. A woman’s heart is a little faster. The thumping sound you hear is really the sound of the four valves opening and closing in a process that pumps a million barrels of blood in an average lifetime. To do so it will beat 2.5 billion times. To put it in perspective, If you were to turn on your kitchen faucet all the way and let it run for 45 years, that would be equivalent to the amount of blood a heart pumps in a lifetime. That’s pretty amazing.

All good things must end it is said, and so it was for this visit. After four days together Ken and Jan took Claire to the train station for the ride home. It was bittersweet. Bitter because she didn’t’ really want to leave, but sweet because she had so many wonderful memories to carry with her and sustain her. Claire finally had some kind of closure. Again, her words.

“When we got to the train, Ken boarded with me to make sure I was comfortable. He seemed very concerned about me and did everything he could to make sure I would have a pleasant trip back home. I sat there for a few minutes and then felt I just had to see him one more time, so I got up and went to the door and, and there he was, waving and saying, “Bye mom, bye.”

Now I’m home again with so many wonderful memories and with so many pictures to remind me of my journey and of my new son. I will go back, we will meet again. I don’t know where or when, but it will happen.”

When Claire spoke of meeting Ken and Jan again, I could almost hear that wonderful song playing in the background.

We’ll meet again
Don’t know where
Don’t know when
But I know
We’ll meet again
Some sunny day

Keep smilin’ through
Just like you
Always do
‘Til the blue skies drive
The dark clouds
Far away

-0-

bob 2Bob Aronson is a 2007 heart transplant recipient and the founder of this blog which contains nearly 300 posts on donation/transplantation and associated issues. If you need a support group, please join Facebook’s Organ Transplant Initiative. And if you are not yet an organ donor, sign up now, it takes almost none of your time and you can do it from where you are sitting. Log on to http://www.donatelife.net and make the commitment now. Then, tell your family your decision so there is no confusion when the time comes.

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Mom loses Two Sons, Helps Save Lives of Others.


mothers-love

By Bob Aronson

This is a story about a remarkable woman, her family and her incredible spirit. It is a story that has no ending because it is still unfolding. It is a story that is guaranteed to make you

claire-selfie

Claire

experience every possible emotion. It is the story of Claire Connelly of San Diego, California. A divorced mom of three — Sara, Pete and Paul Neves. Even her name has a story. When she was divorced she took her original name Connelly back because so many who held the name had died and she wanted to extend its life. That’s Claire, she is all about life and living.

My first contact with her was by email where she goes by the name “Pete’s mom RIP.” That alone tells you a little about her and about a son who is no longer with us. But that’s only a fraction of the full story, a story that is bound to make you smile, cry and then smile again. It was a difficult story to write because there is so much to tell and so little space in which to do it.

“The Agony and the Ecstasy” was a 1965 film about the great artist Michelangelo. That title came immediately to mind after speaking with Claire for the first time. She has gone through incredible agony and it lives on, but her actions have also allowed her and others some ecstasy, much of which is still to be experienced.

I’ve only had email, text and phone contact with Claire, but it is easy to see that she is a vibrant, fun, upbeat woman who loves life, but has suffered losses few could survive and maintain their sanity. Most importantly, Claire Connelly has given life in more ways than one. She is an absolutely remarkable woman who willingly shares her story so that others may benefit. Prior to our interview Claire warned me, “I’m a crier,” she said. After the interview my tears flowed with hers.

Pete was Claire’s middle child. She speaks of him with intense love and pride. He was a model child, neat, organized and truly gifted. When we talked

claire-and-her-bosys-high-quality

Pete & Claire. Paul in back.

she described the young boy who would select what he wanted to wear to school before he went to bed at night. As he grew up he decided that his life’s goal was to become a U.S. Army Ranger.

The U.S. Army Rangers are a very tough outfit. Few who apply for Ranger

framed-picture-of-pete

Ranger Pete

training make it through the program that’s been called the “toughest combat course in the United States.” Pete made it through with flying colors and got into Special Forces, but a back injury ended his career. Disappointed, but still wanting to stay in the Army Ranger Family and connect with other Rangers he returned home and started a U.S. Army Ranger website where he sold Ranger T-shirts, caps and other items.

When the second Iraq War started Pete signed up as a contract soldier, his Ranger instincts were still alive and he wanted to help, but despite his excellent physical condition he found himself weakening. He could no longer make long marches or sustain extended

pete-very-thin

Pete fighting cancer

periods of physical activity. Something was wrong. He returned to the U.S. and was diagnosed with fourth-stage Medullary thyroid cancer. Pete was treated at the M.D. Anderson cancer center, but without success and his condition slowly worsened.  Claire, in tears when she talks about his hospitalization and upbeat attitude said, “The worst thing he could say was, “Mom, I’m not having a good day.” He never complained, he soldiered on. He was in the battle of and for his life, but the odds were just too great and Pete succumbed on October 13, 2008 at the age of 46 leaving a wife and daughter behind. Claire remembers Pete every minute of every day. Thoughout her home she has Pete memorabilia and each year on the anniversary of his death she finds a new way to honor him, like going to the beach and tossing something into the ocean for him.

Needless to say Pete’s passing was a devastating blow for Claire, but she’s a strong woman
and let her memories of Pete sustain her. Claire went on with her life, but never forgetting October 13. As the years passed she mourned, but enjoyed contact with her peteremaining children Paul and Sara. Then on an otherwise happy day, Claire got the phone call no parent ever wants to receive. “Come to Sacramento right away,” said a hospital nurse who explained that Paul had suffered a massive stroke. He was found on the sidewalk by his house unconscious. It was estimated he had been there for three hours or more before he was discovered and now a web of wires and tubing connected him to the technology that kept his heart beating and his lungs working. Claire remembers that phone conversation as though it took place an hour ago, “When I got the call that my other son, Paul, was on life support and could I please come up to Sacramento to sign the necessary papers for his organ donations, I put the phone down and let out screams I didn’t know I had inside of me.”

While he was rushed to the hospital there was nothing that could be done; the time between the stroke and his being found was just too long.  Claire hurried to be near her son, her “Baby” as she called him.

When Claire arrived at the hospital she was told that Paul showed no brain activity. He was what is commonly known as “brain dead.” Shortly after she was approached by the Organ paul-on-life-supportProcurement Organization and told that Paul’s driver’s license indicated he was an organ donor. Claire, also an organ donor, immediately agreed to honor Paul’s wishes. She was informed that he was in such good physical condition that all organs that were transplantable could be donated, but first they had to find recipients. That meant Paul would be kept on life support for several more days. Days in which Claire sat and stared at her immobilized son, tubes and wires still attached still breathing and warm to the touch of a mother’s hand.

Finally she was told that recipients had been found and it was time to take Paul off of life support. There cannot be a more terrifying moment for a parent, than to be called upon to end the life of an offspring. What pained her most is that they never got to say goodbye. “When Pete died,” she said, “it was terribly sad but we had a lot of time to talk and say goodbye. With Paul it was so sudden, “I never got to say goodbye,” she sobbed. But the worst part of the story is that Paul’s passing on October 13, 2013 was exactly five years to the day after Pete who died October 13, 2008.

Claire is still stunned by the fact that her two boys died exactly five years apart and she still grieves. Parents are not supposed to outlive their children, but there is a bright spot in this story and it is the lives saved by the donation of Paul’s heart, liver, lungs and kidneys.

For a while after Paul’s passing Claire waited to see if she would be contacted by recipients of Paul’s organs, but nothing came so Claire being Claire, decided to write to them. Her letters were passed on by the local Organ Procurement Organization (OPO). Here’s what she wrote.

October 16, 2013

“Dear Recipient,

Please know that your recent gift of an organ came from my son who died suddenly, leaving all of Man in dark night, face lit by blank white LCD laptop display lightus bereft, were it not for his generosity in wanting to be an organ donor at the end of his life, which we all hoped would be many years down the road, at least well after mine.  The last thing he wanted was to be hooked up to any machine, but that is exactly what happened.  We feel that because that was necessary to keep his organs going to fulfill his wish of organ donation, he would have approved being monitored by banks of machines, and being poked and prodded endlessly for three days in order for that to happen.

He was a give-you-the-shirt-off-his-back kind of guy who loved the great outdoors, loved to fish, camp and ride his wave runner, and was thrilled at the sight of any wildlife, be it raccoon, elk, mountain lion or bear.  He loved Yellowstone National Park best of all.  He cherished life and we are comforted by the fact that parts of him will live on and our prayer is that you take good care of and appreciate what you have been given – a central piece of him – his ultimate gift.  The fact that he was able to donate so many of his organs speaks to the fact that our family is blessed with good genes and we hope and pray that your new organ will serve you well, with every beat of his heart and every breath that you take, and that you think kindly of him from time to time.  I can assure you that he, as well as you, are in our thoughts and prayers every day.

Perhaps one day we can share our thoughts in person, if you are willing.  Our family is hoping for that possibility and look forward to the day when that can happen.

The mother of the donor.

Again she waited. Months went by and then one day, a letter arrived (edited to protect the identity of the recipient).

Dear Mother of the donor,

Your heartfelt letter was received at a perfect time of my life.  Before I continue any further allow me express my sincere thank you to the mother and family of my heart donor. I would also like to thank the young man who is responsible for my being alive today. 

thaank-youIt is because of you and of course your loving son that I am alive. Please know that each time I feel my heart beat I think of your son. It is amazing to me that your son (my donor) and I have so much in common. I was blessed with receiving a new heart. I will never take that for granted.  Please be assured that I am taking very good care of myself and that I am getting emotionally and physically stronger and stronger as each day passes. I look forward to meeting with you one day and am overwhelmed with the thought of that meeting.

God bless you and I’m looking forward to talking with you soon.”  

The recipient has asked that his identity not be revealed.

Claire is excited as well because the meeting date has been set for December 12, not long from now. While it is not unusual for donor families to go public with their stories, it is also not common, but Claire Connelly is not your average person. I asked her why shedonor-certificateagreed to an interview and to have me publish a blog. Here’s what she said.

“My purpose in telling my story, and I believe I am speaking not only for myself but for other donor families as well, is to convince even one organ recipient to take a moment out of their busy day to send a word of thanks to the donor family.  If I can do that, then this effort would have been worthwhile.

For the organ recipients who feel they don’t want to remind the donor families of their loss, my wish is that they begin thinking of it in a new way.  Most donor families are ALREADY still feeling that loss, and it might give them some comfort to know that their loved ones hearts are still beating, or their eyes are still taking in the wonders of this world, or their lungs are being appreciated with every breath you take.

From this donor mother’s perspective, perhaps they are wondering why the gift of life that their family member provided has not moved the recipient enough to say thank you and to let that donor family know that you appreciate the generosity it took for their loved one to sign that donor card to leave their organs in such a profound way to total strangers.  They are left to wonder if you truly appreciate the generosity it took for that family to agree to a procedure with which they may not depositphotos_27524217-lovely-retired-elderly-couple-havingtotally agree, and to go to the hospital every day to keep a vigil for the brain-dead body of their family member, while potential organ recipients are researched, measured, weighed, matched up, scrutinized and finally, all scheduled to be prepped for the exact same moment.  While it was heart-wrenching to see my son for the last time as he was wheeled out of his room to the O.R. just down the hall for the recovery of his organs, it was so rewarding to hear directly from his heart recipient how much he appreciated the gift and to hear to what lengths he goes to protect it, to take care of it, to monitor it, to faithfully keep his checkup appointments, etc.  I can only say it did this mother’s heart good to KNOW FOR SURE that Paul’s heart beats on, is appreciated, and cared for.

Paul’s heart recipient and I have agreed and are looking forward to meeting in person on December 12 when he can thank me in person and I can feel and hear Paul’s heart beating within his recipient’s chest.  We have already shared photos and he calls me, “Mom.” I don’t want him to think of Paul as “some dead guy”, but as the generous fabulous person he was.  Toward that end, there are things of Paul’s that I want to give to him, and things about Paul that I want to tell him.  Nobody, except another donor family member, could even begin to imagine what this experience will be like.  Will it be emotional?  Certainly.  Would I miss it for the world?  Not a chance.  The willingness of his heart recipient to contact me is what will make this possible.  While it won’t bring Paul back, it will go a LONG LONG WAY to give me the peace of mind in knowing what a difference he has been able to make in this man’s life and that he appreciates it each and every day and that he is taking every measure and precaution with Paul’s heart.  And THAT does this mother’s heart good

While I have not heard from the recipients of Paul’s two lungs, two kidneys, nor liver, I still wonder about them, but that is outweighed by knowing, at least, that his heart is still beating within this kind man’s chest and who cared enough to write a thank you letter.”

Claire Connelly is a unique person who told this story to help others. I know she’d like to hear your thoughts and you can send them to her through my email address bob@baronson.org and I will pass them on.

And one more thing. If you are an organ donor, that’s great. If you aren’t, register at donatelife dot net and get your family and friends to do the same.

Dr. Seuss said it best, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

Thank you Claire and most of all, thank you Paul for your gifts of life.

bob 2*Note. Bob Aronson the author of this blog is a 2007 heart transplant recipient. He is the founder of Facebook’s Organ Transplant Initiative a donor/recipient/caregiver/donor family and friends support group of well over 4,000 members.

Check the index on this blog for other posts that may be of interest to you, there are nearly 300 of them on almost as many topics related to transplantation/donation issues.

 

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.

Transplants — With An Emphasis on Recovery (by organ)


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

THE DIAGNOSIS

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

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

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

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

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

THE SURGERY

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

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

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

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

THE RECOVERY

Critical Information You Need To know

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

Kidney Transplant Recovery

Cleveland Clinic

http://tinyurl.com/bh9jp4o  

Frequently Asked Questions

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

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

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

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

When will I be able to return to work?

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

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

How soon can I take a vacation?

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

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

Heart Transplant Recovery

Mayo Clinic

http://tinyurl.com/bf6692s

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

What you can expect

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

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

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

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

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

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

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

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

Lung transplant Recovery

Duke University Medical Center

http://tinyurl.com/ajp7n8h

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

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

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

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

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

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

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

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

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

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

Pancreas Transplant Recovery

Vanderbilt University Medical Center

http://tinyurl.com/avkgyhe

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

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

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

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

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

Liver Transplant Recovery

University of California San Francisco

http://tinyurl.com/bxbfptz

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

After the Hospital

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

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

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

Some possible transplant complications and medication side effects include:

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

Intestinal Transplant Recovery

Georgetown University Medical Center

http://tinyurl.com/a48grko

The Healing Process

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

Will I be in pain?

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

Where will I spend my time in the hospital?

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

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

What are the possible risks and complications?

You team is watching for the following possible complications:

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

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

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

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

What about the possible risk of infection?

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

How long before I can leave the hospital?

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

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

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

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

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

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

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

Hepatitis C — No One is Immune Everyone is Affected


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

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

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

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

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

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

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

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

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

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

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

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

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