Category Archives: Organ Donation

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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22 People Die Each Day and You Can Do Something About It.


By Bob Aronson

cartoonThe population of the United States is about 320 million. Of that number 120,000 are on the national organ transplant waiting list. 22 of them die every day because there are not enough organs to go around. Numbers, just numbers. We hear them so often they are meaningless.  But the numbers aren’t meaningless to the Husband who just lost his wife because there was no kidney for her, or the child who lost her dad because there was no liver. These numbers represent human lives, You or someone you love could be one of them some day and I know that from personal experience.

I was a broadcast journalist in 1967 when Dr. Christian Barnard performed the first heartbarnard transplant in South Africa. I remember telling one of my reporter colleagues that it was a really big deal because it would someday save thousands of lives. It never occurred to me that 40 years later I’d be one of those who benefited from Dr. Barnard’s pioneering efforts.  I had a heart transplant In August of 2007

So don’t ignore those numbers because all the numbers have faces and names and feelings and they are scared and alone and in need.  Right now 22 families are grieving, many children are being told that mommy or daddy won’t be coming home again. A parent is being told their 12 year old won’t survive the night. We are talking real lives here not just numbers.  There are people out there, real honest to goodness people who just lost someone because there was no organ and they are so stricken with grief they cannot function. There are nurses and doctors who have to tell families that because there was no organ their loved one died. That means over 8,000 people die every year waiting for an organ transplant that never happens and every one of them is loved by someone. Every one of them will be missed. Many of them may have had great futures, we’ll never know because a whole lot of Americans just didn’t get around to becoming organ donors.

How can that be?  How is it that a nation of 320 million people can allow 8,000 of their friends and neighbors to die when the solution is so simple and I mean really simple. You don’t even have to leave home to do it. You don’t have to get out of your damned chair. Just open the laptop, or turn on the desktop or say, “Hi Google,” to your tablet and you will be registering in mere moments. Keep reading and I’ll explain exactly how to register and save lives and you can get to feel really good about yourself.

First, chances are pretty good that you want to become an organ donor.  You just haven’t gotten around to it yet. But, if you haven’t yet made up your mind think about this. Why take perfectly good organs to the grave with you when they could save some lives? Up to 60 lives can be saved and/or enhanced by one organ donor who is in good health.

Many organs can be used to save a life. In fact, one person has the potential has save up to eight people. Tissue donation can help more than 50 people and eye donation can restore the sight of two individuals. Here is a list of organs that can be donated: Lungs, Heart, Liver, Kidneys, Pancreas, Small intestines and skin (yes, skin is an organ).

While not organs, there are many other body parts than can be transplanted as well including Corneas, Heart Valves, Bone, Saphenous veins, Cartilage and ligaments to name a few. http://www.organdonor.gov/awareness/organizations/local-opo.html

So what’s the Problem? Well, there’s more than one. About two million people die every year but many of them are not organ donors. Also a large number of people who die have damaged and therefore non transplantable organs.

procrastinatorThe biggest problem we face, though, is procrastination. In case you don’t know what that is it is when you see that mess in your garage and say, I’ll get to that tomorrow, but tomorrow never comes. Polls and survey’s tell us that in excess of 90% of all Americans think organ donation is a great idea, but only about 40 percent actually become donors. And in some cases, not many, but some families will object to recovering the organs from a loved one for transplantation.

So let’s ask the question again, What’s the problem? Well, sorry to say it Americans, but you might be a big part of the problem. If you are not an organ donor, why not? What good are your organs going to do if cremated or buried with your body? It’s time you not only thought about organ donation, but did something about it. If you are not a donor here are some ways you can become one.

The easiest way. Go to www.donatelife.net. You can do this one from right where you are donate-lifesitting. It only takes a few minutes, then tell your family, your physician and your spiritual or religious advisor…and you are done. You can formalize the process by adding “Organ donor” to your driver’s license, but again, be sure to tell your family what your wishes are so there’s no confusion when and if the time comes.

If you are confused about the process call your local OPO (Organ Procurement Organization) There are 58 of them in the United States. For help in finding yours go to http://www.organdonor.gov/awareness/organizations/local-opo.html

Recently I had a non-organ donor tell me that while it wasn’t on his license he was still a donor. He said he had made sure that his attorney included his wishes in his will. Well, I’m not an attorney, but aren’t wills usually read after the funeral? By then it is far too late to recover organs for transplant. If you do nothing else…nothing at all…tell the loved ones in your family that you want to be an organ donor so if the time comes and they are asked they’ll be able to say, “Yes,” we know that’s what he wanted.

It is my opinion that one of the reasons people procrastinate is that they don’t see any urgency in signing up. They think, “I’m in good health, I plan on living a long time and they can’t take my organs until I am dead, so what’s the rush?  It’s a good question. I’m sure the 30 year old man whose heart beats in my chest might have had the same thought at one time, but he signed up anyway.

The point is none of us know when we are going to die. I pray that everyone who reads this leads a very long life, but that’s not reality. Some will die well before “Their Time.”

urgencySo there is an urgency, both on your part and on the part of the recipient. Can you imagine what it feels like to be on a transplant list day after day, month after month, year after year, waiting for an organ, knowing you are dying and there’s little modern medicine can do short of a transplant. Think about that…seriously think about that for a minute.

Peter Curran and his wife Ashley know what that’s like. They live in Boston. Peter has been on the list for eight (8) years. 8 years — that’s mind boggling torture for both Ashley and Peter. They are friends of mine and oh so brave and upbeat, but as time goes on Peter’s liver isnt’ getting healthier and he is spending more and more time in a hospital bed because of complications. Peter Curran needs your help. Ashley loves her husband with every fiber in her body, she is an excellent caregiver, but somehow we — all of us, the medical system, the government — everybody is failing them. Why is there no liver for Peter? It’s because not enough people are donors. If you are procrastinating or know of someone who is, remind yourself or your friends of Peter and Ashley. He can’t work, he has very little energy or stamina. He’d love to go to work again, he’d like nothing better, but right now all he and Ashley want is for someone to donate a liver that matches Peter’s needs. Seriously, is that too much to ask, I think not.

Now some people don’t donate because they believe in the many myths surrounding organmyths-and-facts donation. So let’s take that on, too, while we are at it. Here’s’ what the American Transplant Foundation has to say about the subject:

Myth:    Age, illness or physical defects could prevent me from being a donor

Fact:      Each person’s medical condition is evaluated at the time of their death to determine what                  organs and tissues are viable for donation. People living with chronic diseases or those who have a history of cancer or other serious diseases are still encouraged to join the donor registry.

Myth:    If doctors know that I am registered to be an organ or tissue donor, they won’t work as hard to save my life.

Fact:      The first priority of a medical professional is to save lives when sick or injured people come to the hospital. Organ and tissue donation isn’t even considered or discussed until after death is declared.  ypically, doctors and nurses involved in a person’s care before death are not involved in the recovery or transplantation of donated corneas, organs or tissues.

Myth:    If you are rich or a celebrity, you can move up the waiting list more quickly.

Fact:      Severity of illness, time spent waiting, blood type and match potential are the factors that determine your place on the waiting list. A patient’s income, race or social status are never taken into account in the allocation process. Click here for more details about organ allocation by organ type.

Myth:    After donating an organ or tissue, a closed casket funeral is the only option.

Fact:      Organ procurement organizations treat each donor with the utmost respect and dignity, allowing a donor’s body to be viewed in an open casket funeral.

Myth:    My religion doesn’t support organ and tissue donation.

Fact:      Most major religions support organ and tissue donation. Typically, religions view organ and tissue donation as acts of charity and goodwill. Donor Alliance urges you to discuss organ and tissue donation with your spiritual advisor if you have concerns on this issue.

Myth:    My family will be charged for donating my organs.

Fact:      Costs associated with recovering and processing organs and tissues for transplant are never passed on to the donor family. The family may be expected to pay for medical expenses incurred before death is declared and for expenses involving funeral arrangements.

If you desire more information about the facts and myths of organ donation please visit. http://www.americantransplantfoundation.org/about-transplant/facts-and-myths/

Please remember when you hear 22 people die every day waiting for an organ that the numbers have faces and names and the smile and care and hurt just like you do. Remember Peter and Ashley and the thousands just like them. Register as an organ donor and feel like a live saver.  That’s a pretty darn good benefit.

Bob Aronson is the founder of Facebook’s Organ Transplant Initiative support group andbob 2 the founder and author of the nearly 300 blogs on Bob’s Newheart where you’ll find information on a wide variety of subjects related to donation and transplantation. http://www.bobsnewheart.wordpress.com

Brain Death, Organ Donation and Family Disagreement –How Is It Handled?


artichoke heart cartoon

A note from Bob Aronson

This account of the organ donation process was published by the American Medical Association in 2005.  While some of the information is dated the process described here is for the most part still followed in most states by medical professionals and Organ Procurement Organizations (OPOs).

This story is a very graphic description of the difficulties that organ transplant representatives can face when a patient is declared brain dead and is found to have a donor card in their wallet.  The biggest change since this account was published is that most states have passed laws that allow OPOs to proceed with organ recovery with or without family consent if the donor is registered as such.  It is also true, though, that many OPOs still ask families to honor their loved one’s wishes and although rare, some families object.

I have worked very closely with OPOs in the past and can testify first hand to the great amount of preparation and training their people experience in order to handle situations just like the one described here.  The OPO people who contact families when a loved one is dying or declared brain dead are very special people endowed with natural compassion and empathy.  I am in awe of these professionals who daily are called upon to explain to grieving families how their gift of life can help so many 0thers.

This is our last blog of 2013.  It is fitting that we close the year honoring OPOs and the many wonderful people who work so hard to save lives and bring comfort to grieving families.

On behalf of Bob’s Newheart and Organ Transplant Initiative on Facebook we say thank you OPOs you are doing God’s work and we appreciate your professionalism and compassion.  Personally I offer my most sincere gratitude from the bottom of my donor’s heart.

Family Disagreement Over Organ Donation

American Medical Association

Virtual Mentor. September 2005, Volume 7, Number 9.

Clinical Cases

Commentary by Douglas W. Hanto, MD, PhD, Thomas G. Peters, MD, and by Richard J. Howard, MD, PhD, and Danielle Cornell, BSN

The sound of Sam’s pager suddenly awakens him. A third-year medical student, Sam is in the midst of his trauma surgery rotation. He rushes to the trauma department and learns that his next patient, Justin Lewis, is a 20-year-old male who was in a major automobile accident. Tested en route to the hospital, Justin had a Glasgowcoma scale score of 3. As Justin is brought to the trauma room, the paramedics tell the attending physician, Dr. Hardy, what they know about the accident. According to the EMTs, Justin fell out of a car that was traveling 70 miles per hour and landed on this head. After an extensive emergency room workup, Justin is declared brain dead. Prior to disconnecting him from the ventilator, the ER staff discovers that he has an organ donor card in his wallet. Familiar with the organ donation procedures, Sam calls the organ procurement agency while Dr. Hardy tells Justin’s family the news.

famiy disagreementAn hour later, Mr. Sterling, a representative from the organ procurement organization arrives at the hospital and introduces himself to the family. Justin’s father tells Mr. Sterling that his son definitely wanted to donate his organs, but Justin’s mother interjects. She is adamantly opposed to anyone’s taking organs out of her son.

Meanwhile, Sam asks Dr. Hardy what the plan for the patient is. Dr. Hardy says that Justin will remain on mechanical ventilation until a final decision is made regarding donation of his organs.

Commentary 1

by Douglas W. Hanto MD, PhD

When the death of a patient is imminent or has occurred, as in the case of Justin, all hospitals that receive Medicare and Medicaid dollars are required by the Conpatient on life supportditions of Participation published by the Centers for Medicare and Medicaid Services to have protocols in place for notifying the local federally designated organ procurement organization (OPO). This notification is mandatory whether the patient has a signed organ donor card or not. In Justin’s case, even if the ER staff hadorgan donor card not found an organ donor card in his wallet, Sam would have been correct in calling the OPO. The OPO determines the medical suitability of the potential donor and usually sends a trained organ donation coordinator to the hospital to review the patient’s records, speak to the family, clarify health-related information, and request permission for organ donation. Some OPOs have specially trained family counselors who request permission for donation from the family. If the family gives permission, the donation coordinator assumes the medical management of the donor, and all medical costs from the time of declared brain death are billed to the OPO, not to the patient’s insurance or family.

The refusal of families to grant permission is a major impediment to organ donation. Several factors have been shown to improve family consent rates. First, the request for organ donation should be separate—or “decoupled”—from the declaration of brain death. This allows the family time to understand and accept the concept of brain death. In this case, Justin’s mother may simply need more time to adjust and accept the death of her son. Second, the request for organs should be made by a trained OPO representative along with the hospital staff as a team. It is best that the physician or nurse caring for the patient not discuss organ donation with the family prior to OPO involvement. The hospital staff and OPO donation coordinator can work together to determine the best time to talk to the family. Third, the request should be made in a private and quiet setting. Higher consent rates have been shown to occur when these 3 procedures arefollowed [1].

Even when a patient has a signed organ donation card, the OPO oftenseeks family permission to proceed with donation. The Uniform Anatomical Gift Act (1968, revised 1987) established that a signed organ donation card is sufficient to proceed with donation, and it has been confirmed recently that such documents function legally as advance directives. In the UnitedStates, however, it is customary for the OPO to request permission from the next-of-kin due to fear of litigation.

Recently, several states have passed legislation establishing “first-person consent” whereby the family cannot override an individual’s documented desire to be an organ donor. Some states have established first-person consent registries for people interested in being deceased organ donors. This is based on the strong belief that the donor’s wishes should be adhered to. It is not dissimilar to a last will and testament that disposes of our personal property and assets after we die. Each year more states are passing first-person consent laws that are strongly supported by the OPOs and the transplant community.

Had Justin died in a state with first-person consent laws, the OPO would have informed the family of his pre-existing declaration to be an organ donor and would not have sought the family’s permission. First-person consent removes a burden from family members because they do not have to come to a decision while attempting to cope with the very stressful situation of the death of a relative. First-person consent also avoids the problem of family members’ disagreement, and it may benefit families later on: more than one-third of families whomade a decision themselves and declined to donate the organs subsequently regretted their decision [2].

In a case such as this one, where the mother and father disagree about organ donation, the donation coordinator would ask the mother why she was opposed to donation and would try to address her specific concerns. The coordinator would emphasize that her son had expressed a desire to donate and that his gift could save and improve the lives of several seriously ill patients. The coordinator would also try to dispel any myths about organ donation that Justin’s mother might have heard. It is important for her to understand that her son’s body will not be disfigured and that donation will not affect funeral arrangements or viewing of the body. Often times a hospital social worker or pastoral care representative can be called to counsel the family and resolve their disagreement. One of these individuals might have been able to help Justin’s mother agree to donation.

Because of the continued shortage of organs for transplantation, it has been argued that we should go beyond first-person consent and adopt the principle of “presumed consent.” Presumed consent has been legislated by many European countries with a resulting increase in organ donation rates [3]. Presumed consent is an “opt-out” policy in which everyone is considered an organ donor unless he or she registers opposition. This process contrasts with our current, “opt-in” system, in which the individual or next-of-kin must give explicit consent for organ donation. Individual choice is not removed in either case, but persons opting out have the additional responsibility of documenting their decisions. A recent analysis showed that the opt-out countries had a much higher organ donation rate than opt-in countries [4]. And in an online experiment, responders’ decisions about organ donation were dramatically influenced by whether the question was presented as an opt-in or opt-out choice; rates for donation doubled when the default position was opting out and documentation was needed to opt in; that is, to donate.

Once permission has been obtained, the donor is managed medically to maintain optimal organ function [5]. All organs are evaluated for their suitability for transplantation, the donor is screened for infectious diseases (eg, hepatitis, HIV), and blood and tissue types are obtained. The donor information is then entered into the national computer database maintained by UNOS (United Network for Organ Sharing) where it is matched with wait-listed patients. The computer produces a list of the potential recipients for each of the organs ranked by priority as determined by national organ allocation policies. At that point, the donor coordinator calls the transplant centers where prospective recipients are listed to ensure a recipient will be available and waiting for the organ. The organs are then removed in the hospital operating room, often by several surgical teams from different transplant centers in a manner that is respectful of the decedent and his or her family. The young patient in this case could potentially donate his heart, both lungs, liver, pancreas, both kidneys, and small intestine for transplantation,thereby benefiting as many as 8 recipients. He could help many more patients by being a tissue donor (corneas, skin, bone, blood vessels) as well. Many times families report great satisfaction after organ and tissue donation from knowing that so much good can result from so much pain.


References

  1. Gortmaker SL, Beasley CL, Sheehy E, et al. Improving the request process to increase family consent for organ donation. J Transpl Coord. 1998;8:210-217.
  2. DeJong W, Franz HG, Wolfe SM, et al. Requesting organ donation: an interview study of donor and nondonor families. Am J Crit Care. 1998;7:13-23.
  3. Gundle K. Presumed consent: an international comparison and possibilities for change in the United States. Camb Q Healthc Ethics. 2005;14:113-118.
  4. Johnson EJ, Goldstein DG. Defaults and donation decisions. Transplantation. 2004;78:1713-1716.
  5. Wood KE, Becker BN, McCartney JG, D’Alessandro AM, Coursin DB. Care of the potential organ donor. N Engl J Med. 2004;351:2730-2739.

Douglas W. Hanto, MD, PhD, is the Lewis Thomas Professor of Surgery at Harvard Medical School and chief of the Division of Transplantation at Beth Israel Deaconess Medical Center in Boston, Massachusetts.

Commentary 2

by Thomas G. Peters, MD

Patient-centered ethical dilemmas often arise in a trauma surgery rotation. For the medical student, a sudden and perplexing ethical dilemma may actually open the door to solving certain clinical problems and issues of family interaction.

In this case, there is no question that the patient, a 20-year-old man who sustained a massive head injury, is dead. With cardiorespiratory function being sustained artificially, the emergency room and trauma surgery staff have appropriately assessed the patient, tested and ruled out any possibility of survival, and determined the hopelessness of the patient care situation. With such a dire determination, however, comes new promise: helping others by way of organ donation. The student is a witness not only to the consequences of severe trauma, but also to the process of consent for organ donation.

The case narrative indicates that the patient, Justin, carried what we presume is a recognized legal organ donor card. Such a document is generally believed to be sufficient to go forward with organ donation. Some states including Florida, Pennsylvania, and Texas, have determined that the organ donor card is an end-of-life document that is afforded as much standing as a will or advance health care directive. Therefore, the issue of consent and legality of organ donation should not be a dilemma considering that a 20-year-old man is past the age of majority—18—in most states.

A dilemma does arise, however, because Justin and his father favor organ donation, but his mother does not. She is adamantly opposed to anyone removing organs from her son, and the story appears to end with the attending physician noting that mechanical ventilation and other support measures will be carried on until an agreement is reached regarding organ donation.

The best-known way to prevent the conflict between the mother and the father is for families to discuss organ donation before any tragedy occurs. Consent disagreements almost never arise when a family has talked about the idea of postmortem organ donation and the intentions of family members are fully understood by all.

It appears, however, that no such discussion took place between Justin and his parents, so the medical staff faces a dilemma: whether or not to maintain mechanical and artificial support, which use critical hospital resources, while the family is further counseled regarding organ donation. In fact, most acute care units have experienced similar circumstances, and giving time to grieving families in the final hours of life, whether organ donation is to occur or not, is not unusual. So, support might be continued for several hours during which resolution of the family conflict would become an important and, perhaps, intense matter.

The medical care team must, to the greatest extent possible, remove itself from this conflict resolution process and rely upon the expertise of the organ procurement professionals. It is likely that the procurement coordinator has been in similar situations, has been trained to deal with them, and will be able to adequately resolve most of the issues to the satisfaction of all. This professional should be able to apply techniques of personal communication to persuade the mother that the wishes of her deceased son should be honored.

In the majority of such situations, the procurement coordinator begins by facilitating an empathic discussion among all concerned persons with the aim of reaching a consensus on what the decedent really may have wanted. The presence of an organ donor card itself, while sufficient to preclude the need for family consent to organ removal, does not always silence the objections or satisfy the concerns of those who would prefer that organ donation not occur. Thus, the mother who is objecting might be given time to explore the reasons for her opposition to organ donation before being confronted about her son’s wishes. The astute organ procurement coordinator will use techniques of active listening to engage the reluctant—or opposing—person and to allow full expression of his or her thoughts and feelings. It is never enjoyable to talk about recovering organs from a young person who has died unexpectedly. The waves of emotion that must overcome parents are best managed by those trained to listen and respond appropriately in such difficult family circumstances.

Over a period of several hours, the effective procurement coordinator will have established a relationship with the mother and permitted her to work through the early stages of grief and to have her questions regarding organ donation and transplantation answered. It is highly likely that the mother will ultimately come to the understanding that her son’s wishes should be honored, even if she opposes organ donation.

It is, of course, possible that the organ procurement specialist is not as talented as one would wish, or that the mother remains adamantly opposed to organ removal no matter what. In such a case, the organ procurement team is beset with a difficult decision: whether or not to go forward with organ recovery since the signed donor card is suitable consent, and, thus, leave the family in conflict. The family would be left in conflict if organs are not recovered anyway, since the father favors organ donation. In the circumstance of unsuccessful counseling, the organ procurement agency would need to examine the procedures and experiences that have allowed for the best outcome of potential donor families and others. In many such situations, organ recovery is accomplished even when objections persist. While the family dilemma goes on, lives of other critically ill persons will be saved by organs recovered from the dead trauma victim.

Thomas G. Peters, MD, is a professor of surgery and chief of the Transplant Service at the University of Florida Health Sciences Center in Jacksonville. In 1988, Dr. Peters organized and directed the Jacksonville Transplant Center at Methodist Medical Center and served as chairman of the Department of Surgery at Methodist Medical Center for 10 years. He was co-chief of surgery at the University of Florida and Shands Jacksonville from 1989 until 2001.

Commentary 3
by Richard J. Howard, MD, and Danielle Cornell, BSN

The death of most people who become deceased organ donors is sudden, unexpected, and frequently tragic. The families of these donors are almost never prepared for this unfortunate situation. In addition to dealing with an unexpected injury or intracerebral accident, the family must come to terms with the fact that their loved one is dead. They may have a difficult time accepting this since the patient has a heartbeat, a measurable blood pressure, produces urine, and has good skin color and other indications that suggest life. Many individuals (even physicians) do not understand the concept of brain death. And now someone the family has not seen before comes in from something called an organ procurement organization and asks permission to remove the organs of their son or mother or sister for transplantation. The stresses associated with the initial injury, the death, and now the request for organs cannot be underestimated and can be difficult for anyone who has not gone through this process to fully appreciate.

Yet organ donation can salvage a great deal of good from a tragic circumstance. Knowing that their loved one can save and improve the lives of other individuals through organ and tissue donation can be a source of great solace and comfort. The organ donation can become a living memory of and tribute to their relative.

In the example cited here a 20-year-old man, Justin Lewis, died in an automobile accident, and testing showed he was a suitable potential organ and tissue donor. In this particular case, it was discovered that he had signed an organ donor card. The Uniform Anatomical Gift Act (UAGA) of 1968 clearly indicates that a donor card signed in the presence of 2 witnesses is legally binding. The act was adopted by all states within 3 years. Many organ procurement organizations (OPOs), however, do not take advantage of this provision because they are concerned about their relations with the family as well as about potential legal disputes and adverse publicity that could result in a decline in organ donation should they act upon the donor’s consent—even though such worries have not proved to be an issue in most places.

States have responded to this concern, and legislation authorizing the donors intent, called “first-person consent,” has now been enacted in 42 states. These laws acknowledge that a documented donation decision (donor card, drivers’ license, donor registry, etc) that has not been revoked by the donor prior to death, is legally binding and does not require the consent of any other person upon death. Despite this legislation, many OPOs are still reluctant to pursue first-person consent. Fifteen years following the enactment of the UAGA, OPOs in only 4 states reported they were actively practicing first-person consent organ donation recoveries.

In the case of this 20-year-old designated donor, our organ procurement organization, would have modified its approach to the family. The staff would have notified the parents that their son had clearly showed his intent to be a donor by so designating on his driver’s license and that we planned to honor his wishes. Even if both parents disagree with organ donation, the signed organ donor card is sufficient permission for the OPO to recover organs for transplantation. We have had only a few differences of opinion with the donors’ legal next of kin in honoring first-person consent.

The case of Justin Lewis would not be unmanageable for an OPO that is actively pursuing first-person consent cases. The OPO staff must discuss organ donation and what it entails with the family and answer their questions in a supportive, non-confrontational, non-threatening manner. We have found that much of the objection to organ donation is due to lack of accurate information. For instance, some individuals believe that if organ or tissue donation occurs, there can be no viewing of the body afterwards. Some will agree to organ donation once they realize that a viewing can still take place and that no incisions will be made on the head or neck.

Parental or next-of-kin refusal often has less to do with the concept of organ donation than with control or authority for decision making for their injured and now dead relative. Building a relationship with the family by asking questions about what type of person their relative was can assist in establishing communication related to the patient; the importance of this relationship cannot be overstated. Having a sympathetic OPO coordinator or designated requester who is willing to take time with the family, hear their concerns, and answer questions frequently means the difference between obtaining permission and being met with refusal. Asking the parents if they understood what the physician told them about brain death also provides an opportunity for educating and trust-building.

Even if the OPO staff or other designated requestors aren’t negotiating with family members to obtain consent, they should still speak to the next-of-kin in a quiet room that is softly lit and has enough chairs so that no person is left standing. The number of people in the room should be limited to 1 or 2 family members. The more people who are in the room, the more likely someone will object to donation. It is important for the requestor staff to state that the adult decedent willingly made a choice to give the “gift of life” upon his or her death, and that the purpose of the meeting is to answer any questions they may have about the procedure and to ask some questions about the medical history of the donor.

Although the law is on the side of the designated donor, it is critical to procurement organizations, transplant centers, and recipients that the OPO make a concerted effort to establish a cooperative relationship with the family. Legal and public conflicts that could result in fewer donors must be avoided. Willing participation from the family will also enable the procurement coordinator to obtain a thorough medical and social history, and will allow him or her to explain the procedure fully, confirm that donation will not interfere with the funeral, clarify that the OPO will assume hospital costs related to the donation, and convey much other information.

Perhaps the most compelling reason to establish a positive relationship with the family of a potential donor is the benefit it offers to the future of organ donation. Working cooperatively with the donor family will result in a positive continued relationship. The surviving family members of a donor are known as donor families, and, in our mission to increase awareness of the need for more organ donors, donor families remain an unparalleled resource for promoting the message.

When an OPO makes the choice to recover organs from a designated donor against the family’s wishes, an ethical balancing act may ensue. Some would argue that the wishes of the surviving family members should be given primary consideration; that procuring organs from a deceased patient in opposition to the family’s desire will add to their grief, especially in the case of parents. But others will dispute that the surviving family members deserve primary consideration, arguing that the patient’s wishes to be an organ donor upon death must be honored. Is it ethical for the OPO to walk away from a patient and not honor the documented decision he or she made while alive? Is it defensible to decide not to attempt to place and procure organs for transplant because the family doesn’t agree with the decision the adult patient made during life? Finally, is it right to ignore the patient’s request because he can no longer speak for himself?

Would we deny living patients’ the right to decline blood products, to see their religious representative, or to decline cardiopulmonary resuscitation? The answer, simply, is no. People who make the decision to become donors during their lives have a right to have that decision carried out upon their death. It is not ethical for an OPO to refuse to recover organs only because the donor can no longer speak for himself or herself. We believe the wishes of someone who signs a donor card should be respected even if the family disagrees. And yet we realize there may be unique circumstances where pursuing first- person consent might not be in the best interest of the family or of the transplantation community. Every potential donor situation has unique aspects. While some OPOs err on the side of the designated donor, there is no 1 formula that will always guarantee a good outcome.

There are also times when a disagreement about donation cannot be resolved among family members (and where the donor has not indicated his wishes while alive). If a resolution is not attainable despite the best efforts of the OPO coordinator, it may be appropriate for the OPO to withdraw and make no further efforts to get those who object to donation to change their minds. In these situations the family usually comes to a consensus and refuses permission for donation. If, for example, the family stated that the patient, in the presence of his mother, girlfriend, or other family member, verbally revoked his decision to become a donor, the OPO would have to withdraw all attempts of obtaining consent for donation.

Richard J. Howard, MD, PhD, is the Robert H. and Kathleen M. Axline Professor of Surgery and head of the Division of Transplantation at the University of Florida. Dr. Howard is also the past president of the American Association of Transplant Surgeons and is a member of the Board of Directors of UNOS (United Network for Organ Sharing).

Danielle Cornell, BSN, is the executive director of LifeQuest Organ Recovery Services, the organ procurement organization (OPO) that serves northern Florida.

The people and events in this case are fictional. Resemblance to real events or to names of people, living or dead, is entirely coincidental. The viewpoints expressed on this site are those of the authors and do not necessarily reflect the views and policies of the AMA.

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bob minus Jay full shotBob Aronson is a 2007 heart transplant recipient and the author of most of the more than 200 Bob’s Newheart blogs.  On occasion we publish guest blogs and welcome submissions.  We cannot guarantee that your submission will be used and it will not be returned.  We reserve the right to edit guest blogs but will always give full credit to the author or source. 

Today’s post is the last one of 2013.  Bob’s Newheart blogs are read in 142 countries and average 5,000 readers per month, mostly from the United States with English speaking countries rounding out the top ten.

Blogs may be reproduced without permission provided attribution is given.

We send our best wishes and hopes that all of our readers, followers and friends have a happy, peaceful and safe holiday season. 

Kids Should Get Organs and So Should Everyone Else


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

En Espanol

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

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

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

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

UNOS CEO: Study Could Redefine “Medically Suitable” Donors


On August 11, I sent a letter to Walter Graham, CEO of the United Network for Organ Sharing (UNOS) asking what UNOS was doing or was going to do to increase the supply of organs. My letter noted that the number of transplants performed each year has plateaued at about 28,000 while the number of people on the list continues to grow.  Today there are 114,899 people waiting and so far this year there have been 11,469 transplants from 5,677 donors.   As you can see, the gap continues to widen.  With only four months left this year we may fall far short of the 28,000 number.

Below you will first find my letter to Mr. Graham, followed by his response.  You can decide if he responded to my concerns and most importantly, your concerns about how our national donation/transplantation system is managed.

August 11,2012

Walter Graham

Chief Executive Officer

United Network For Organ Sharing

Richmond, Virginia

Dear Mr. Graham:

You might remember me as a Minneapolis, Minnesota based communications consultant that worked with UNOS in the 90’s.  During that period I was diagnosed with dilated cardiomyopathy and subsequently had a heart transplant at the Mayo clinic in Jacksonville, Florida in August of 2007.

I am writing not as a former consultant but rather as a very grateful heart transplant recipient, founder of Facebook’s nearly 2500 member Organ Transplant Initiative (OTI), author of over 120 blogs on donation/transplantation issues (www.bobsnewheart.wordpress.com)  where we have 100,000 readers and writer/producer of three videos on organ donation. I am a very active advocate for organ donation and have been for many years.

I’ll get right to the point.  I have a growing concern about the Inability of the altruistic system to meet the demands for organ transplants and UNOS’ reluctance to make or even recommend significant changes to the system.

I am quite aware of all the ethical and other arguments forwarded by UNOS for rejecting changes that would include presumed consent and donor incentives/compensation among others.  I am puzzled as to how UNOS can find these suggestions unethical or unworkable but has made no statement about the ethics of allowing people to die due to the failure of the altruistic system to generate enough transplantable organs.  How can it be ethical to allow an inadequate system to prevail?

Having been on that list I have first-hand experience with the depression that accompanies it, knowing that the government contractor that is funded with my tax dollars is doing little beyond promoting altruism to significantly increase the number of available organs.  It is discouraging and depressing for those on the list to continually hear that every option other than altruism is either unethical or unworkable.

I am hoping that you can offer some hope that I can pass on to members and other interested parties that the gap not only is closing but will close and soon.  Please offer some explanation other than renewed efforts at increasing altruism of just what UNOS is doing and will do to help those who are languishing on an ever growing list of people who need transplants.  Please prove me wrong.  I would be most grateful to see clear, compelling evidence that the altruistic system can work and is working.

It is almost 30 years since the National Organ Transplant Act (NOTA) was implemented..  I think that is plenty of time to determine if a system works.  Unless you can prove otherwise, It seems clear that with 114,000 people listed and only about 28,000 transplants done every year despite intense and noble efforts at increasing donation rates, altruism alone cannot meet the demand – ever.  .

Please respond as soon as possible.  I plan to publish my letter to you and your response side by side.

Thank you for your consideration and time

Bob Aronson

Return letter from Walter Graham

Received on August 22, 2012

Dear Bob:

Thank you for your letter, and yes, we remember your valuable contributions to us as a consultant in the 1990s.  We are glad you continue to do well with your transplant and engage the public in this vital cause.

Your concern regarding the shortage between available donors and the needs of waiting candidates is widely shared.  Our ultimate goal and fondest hope is to be able to provide transplants for all candidates in need, to prevent deaths and needless suffering while waiting.

As you may recall from your work with us, the primary mandate of UNOS as operator of the national Organ Procurement and Transplantation Network (OPTN) is to allocate organs from deceased donors equitably among transplant candidates.  Other significant roles, as specified in federal law and regulation, including maintaining a clinical database on all donors, candidates and recipients; monitoring compliance with OPTN policies; and investigating donation- or transplant-related issues that may pose a risk to the health and safety of transplant patients, living donors or the public.

Promoting organ donation is interwoven among all of our responsibilities, and transplantation depends entirely on the public’s willingness to donate.  That said, managing the organ donation system is not a fundamental mandate that federal law or regulation has assigned to us.  Our essential responsibility is to make sure that available organs are used in the most responsible and effective way possible.

State and federal law governs the process of donation in the United States.  Any change to the current voluntary nature of donation, whether that would involve preferred consent, financial incentives, preferred status or other means, would involve a public initiative to amend the law.  UNOS, as a corporation, has declared its support of careful study of potential incentives, financial or non-financial, that would encourage donation while respecting individuals’ freedom of choice.  Such study may involve legislative efforts to suspend the law to allow examination of the results.  As a federal contractor for the OPTN, UNOS cannot develop policies not supported by the law or expend limited resources lobbying for legislative changes beyond the OPTN’s mandate.

One of the fundamental questions UNOS is seeking to answer has to do with the potential number of persons who could qualify for deceased organ recovery.  Our Center for Transplant System Excellence is conducting a Deceased Donor Potential Study. This study will identify the total number of medical cases in which persons could be deceased organ donors regardless of issues of consent. The results of this study will provide a better understanding of what is possible. The merits of whether a system based on altruism is the best approach could then be understood in the context of what is possible. It may well be that the number of medically suitable cases as currently defined is not adequate in any circumstance.

Many people are convinced that the delicate nature of donation may be adversely affected by negative connotations or perceptions generated by controversy over debates about changes to the underlying legal system such as presumed consent. That being the case, it is prudent to pursue the DDP Study to learn what the potential might be before considering whether to advocate for a fundamental change.

Among key strategic goals for the OPTN are increasing the number of transplants performed and optimizing post-transplant survival.  Even with the current supply of donated organs, we can increase utilization of organs and enhance survival by better matching available organs with candidates who are the best long-term match.  In promoting organ donation, we actively support efforts such as those of Donate Life America, which has recently announced more than 100 million Americans have formally registered their wish to donate organs and tissues and has set an ambitious goal of 20 million new donor commitments this year.

We all agree a higher rate of donation is essential to save lives and relieve suffering of men, women and children anxiously awaiting an organ transplant.  UNOS and the OPTN are dedicated to helping save and enhance lives through organ allocation.  Whether society may be ready to adopt a new model for the process of organ donation is an important discussion that would involve society as a whole and active support of state and national lawmakers.

Walter Graham

CEO

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.

It’s Urgent! Become an Organ/Tissue Donor Now!


Frank Sinatra is quoted as having said to a sick friend, “I hope you live to 125 and that mine is the last voice you hear.”  I feel that way about all of you…and me, of course.

About 46% of Americans are organ and tissue donors while surveys indicate that around 90% of us think organ and tissue donation is a good idea.  So, why the gap?   Why are so few of us donors when we all seem to think it’s a good idea?  I think it is because people feel no sense of “urgency” to become donors.  No one thinks they are going to die any time soon, so what’s the rush?  To me, that is an understandable reaction.  Combine that with the fact that people generally don’t like to spend much time thinking about their own demise and you have the formula for low organ donation rates.

When you think about it, there’s some justification for the delay.  Because of medical, scientific and technological advances we are all living longer.  According to the National Vital Statistics Report from September of 2011 for all races and both sexes, American men will live to be 75.4 years old and American women will survive to 80.4 years (read the full report at http://tinyurl.com/6ok8lkp).  That’s a long time so putting off becoming an organ donor makes some sense (unless you are the person waiting for an organ).

But…as the commercial says…”But wait….there’s more!”  Those numbers are averages and they really don’t tell you much.  I’d like to delve into this a little more and show you why there is some urgency to your becoming a donor now.

While the life span look encouraging, we face hazards on a daily basis that may make you think a little about becoming a donor now.  I wish everyone a long and healthy life but here are some staggering facts we all should face.   Here’s some data on deaths that are preventable.  Does any of this fit your profile?

The Preventable Causes of Death in the United States: Comparative Risk Assessment of Dietary, Lifestyle, and Metabolic Risk Factors

Smoking and high blood pressure, which both have effective interventions, are responsible for the largest number of deaths in the US. In 2005 http://tinyurl.com/da8ky7

  1. Tobacco smoking  467,000 deaths
  2. High blood pressure 395,000 deaths,
  3. Overweight–obesity 237,000 deaths
  4. Physical inactivity 222,000 deaths.

How about accidental causes of death.  Accidents happen — and they also kill enough people to rank as the No. 1 cause of death for those ages 1 to 42, according to the National Safety Council.  Here’s a countdown from the top four:

5. Choking (Approximately 2,500 deaths per year)

4. Fires (2,700 annual deaths)

3. Falls (25,000 annual deaths)

2. Poisoning (39,000 annual deaths

1. Motor Vehicle Incidents (42,000 annual deaths)

What about your job.  Are you safe there?  Does it present a hazard?  Here’s a list of the most dangerous jobs (full report at http://tinyurl.com/6lnz3to ).

  1. Fishermen “this occupation is characterized by strenuous work, long hours, seasonal employment, and some of the most hazardous conditions in the workforce.”
  2. Logging workers This occupation repeatedly takes a spot in the top 10 as not only one of America’s, but the world’s, most dangerous jobs.
  3. Airplane pilots and flight engineers It may be hard to believe that working as a police officer is safer than flying a plane, but according to the BLS, this is true. The bureau states that there were 78 fatal work injuries for this industry in 2010.
  4. Farmers and ranchers
  5. Mining machine operators The most infamous accident within this industry is undoubtedly the Upper Big Branch Mine explosion in April of 2010, which claimed the lives of 29 out of the 31 miners on site.
  6. Roofers Just three weeks ago, four roofers in San Francisco were seriously injured when the roof of a six-story apartment complex collapsed under them.
  7. Sanitation workers
  8. Truck drivers and delivery workers
  9. Industrial machine workers Police officers In 2010, there was a nearly 40% increase in line-of-duty deaths among U.S. law enforcement.

And one more…hot dogs can be a quick, easy — and deadly — meal. Hot dogs are the perfect size, shape and consistency to block a child’s airway, and a WebMd report rates hot dogs as the top choking hazard for children. Choking killed about 2,500 people in 2009, according to the National Safety Council, and kids ages 3 and under are at the highest risk.

I know these data are depressing but so is the fact that 7,000 people die each year because there are not enough transplantable organs to go around.    I’m sure there will be a good number of people who will take issue with this post, saying that I’m trying to frighten people into becoming donors but I’m not.  This is reality.  Bad things can happen to good people.  I’m hoping that at least a few non-donors will be motivated to take action sooner than they had planned.  My new heart came from a 30 year old donor.  I’ll bet he didn’t plan to die that young but he became a donor anyway and because of it I’m here today writing this blog.  Please…become a donor.  It is a very urgent matter.

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

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

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

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

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


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

Heroes of Hope

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

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

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

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

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

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

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

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

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

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

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

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

This is humanity at it’s best.

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

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

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

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

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

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

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

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

What about the “Transplant War”?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Organ Donors Are Heroes, Are You?


  (Bob Aronson, the author of this blog, received a new heart on August 21, 2007)

April is National Donate Life Month in the U.S.  It is a time for us to not only become donors but to also encourage others to do the same.  The 18 people who die every day while waiting for an organ is a national disgrace.

Brotherly love is a concept repeated often not only in the old and new testament http://www.eliyah.com/brother.html but in every other religion as well.  How does the concept apply to your life, do you pay lip service to it, or do you live it?

If you were dying from organ failure would you accept a new organ from a total stranger?  If you answered, “Yes,” then it seems logical that a total stranger would accept an organ from you. 

The greatest ethical code ever written consists of just ten words, “Do unto others what you would have done unto you.”  A variation of these words exists in almost every religion http://www.religioustolerance.org/reciproc.htm .  With that in mind, how can anyone possibly choose not to be an organ donor?  It is the neighborly thing to do, it is the right thing to do and, it is the ethical thing to do. 

Polls show that over 90% of us are in favor of organ donation but only about 35% actually become donors.  By not “Getting around to it” you have checked the “No” box on the registration form.  In light of “Brotherly love,” and, “The Golden Rule,” is “NO” really your preference?  Do you really want to take your organs and tissue to the grave while thousands of people die waiting for them?

Organ donors are among the real heroes of our society. They have made a conscious decision to help others live.  Living donors make a tangible sacrifice; they give up a part or parts of their bodies and undergo many inconveniences and some expense to do so.  Donor families often make their decision in the presence of a dying loved one. 

All too often people who are not registered organ donors die and their families must make the donation decision under great emotional stress.  Among these families are parents who agree to share their loved one in order to save lives.  Sometime the loved one is a child.  I cannot even begin to empathize with the rush of emotion they must feel.  Saying, “No” would be the easy thing to say. 

I have a Facebook page called, Organ Transplant Initiative a site with thousands of members who share their thoughts, emotions and opinions with the rest of us.  Following are some comments (edited for brevity) from people who willingly gave permission to recover life-giving organs.

  •  My daughter (December 16, 1983 to December 10 2006 was an organ an tissue donor she saved lives.  I know you are in heaven, you are my angel.  Rest in peace.  Love an miss you sweetie every day.  Please be an organ donor. 
  • We make a great family don’t we.  My daughter 29th Oct 1983 -6th Sept 2004, saved 4 lives here in Australia.  
  • She is in heaven…She’s in the same place as my husband, he too was an Organ Donor saving 4 people here in Illinois. 
  • I am also the mother of an organ donor…my son, Patrick saved 7 lives and made a difference in 3 others.
  • My daughter was also an organ donor. By giving, our daughter made a difference in someone’s life. 
  • I… donated a kidney to my friend 6 weeks ago and it was the absolute most life-changing experience of my life. It was amazing! The Lord is the One who set the whole plan in motion and ordered every step throughout the evaluation process and surgery. God bless you.

 And — there are grateful organ recipients, too.

  •  Thank you for your wonderful gift of life.  If it wasn’t for generous people like you…I wouldn’t be here today:) I am a liver transplant recipient and waiting for a kidney. Love & God Bless 
  • I am very, very sorry for the loss of your daughter. It is so scary for me to even think about. THANKS SO MUCH for making the decision to donate all of her organs. She’s definitely an angel living on in many. My aunt is waiting on a lung transplant…which, of course, is bittersweet. Bless you and your family! 
  • My daughter was killed in a car accident 17 years ago at the age of 14. She was an organ and tissue donor, too. We can help others to understand the importance of making the decision to become an organ and tissue donor.  
  • You are my hero for donating her organs.  My husband and I are waiting for our hero. My husband has been… on the liver transplant list for 3 years now. Words will never be enough for what you have done. May God bless you and your family. Love and prayers. 
  • May god continue to bless your family. My brother received the gift of a kidney many years ago. We never knew the circumstances as to how we received it but we give many thanks to the family out there who made the conscious decision to donate. Thank You.

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – spread the word about the immediate need for more organ donors.  On-line registration can be done at http://www.donatelife.net  Whenever you can, help people formally register.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.  

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

In Honor of Organ Donors and their Families


We read and hear a great deal about the shortage of organs, incredible stories about “nick-of-time” transplants, multiple transplants and innovations in transplantation but we don’t hear much about the donors who make this all possible.  Being an organ donor is one of the most unselfish, compassionate and noble gestures one can make.  It is particularly noble because in most cases the donor will not be around to hear the praise and thanks.  Paying tribute to donors and their families is one of the most important things we can do.  These mostly anonymous people deserve to be in our thoughts and prayers every minute of every day. 

As you know I am a heart transplant recipient, I only know that my donor was a 30 year old male from South Carolina, nothing more.  I have written to the donor family expressing my gratitude but, like many donor families, they have chosen to remain anonymous.  There are many more, however, who choose to be public about their experience and how we support and honor them is the subject of this blog. 

Prior to my retirement I was honored to have as a client, LifeSource, an organ procurement organization (OPO) that serves Minnesota, the Dakotas and part of Wisconsin.  They were not only a valued client but also became dear, dear friends.  Rebecca (Becky) Ousley is one of the many dedicated people who help to further the LifeSource mission.  Like most OPOs LifeSource does a wonderful job of promoting organ donation and coordinating transplants.  But they are so much more than that, they offer heart felt support to the living, too, especially donor families.  Below is a reprint of their latest blog.  Please read and comment either to this blog or directly to LifeSource at http://www.life-source.org/

From “The Source” by Becky Ousley, LifeSource

One of the things I find remarkable about the work we do at LifeSource is the extent to which we are committed to supporting donor families, both at the time of donation and for years afterward.  Donor families are the cornerstone of the work that we do – without them there would be no transplants.  It is an incredibly generous gift.

I’m always so excited to tell people about this, as many people don’t realize that donor families receive this kind of support in the months and years following donation.  At LifeSource donor families are part of our aftercare program for as long as they wish; we have some families that have been coming to our events for nearly 20 years!   In addition to receiving support and remembering their loved ones, these long time donor families are also able to provide hope and perspective to our families that are more newly bereaved.  That too, is a wonderful gift.

Part of our aftercare program involves facilitating letters between transplant recipients and donor family members.  Either party can write to the other; often, recipients want a chance to say thank you for their gift of life or donor family members may want to share memories about their loved ones.  Donor families and recipients can request to have direct contact with one another and, sometimes, they even meet.  These are often very rewarding relationships.

This was the case today, when I was honored to attend a donor family and recipient meeting with my colleague Jill, whose job it is to support these families.  She connected this pair after some persistent detective work, as the donation and transplant took place more than 40 years ago in 1966!  It was an incredible meeting and I think we were all touched when Steve, the kidney recipient, immediately hugged the donor’s sister and told her he had been waiting for 43 years to give her that hug.

KARE-11 was there to document this wonderful meeting and I encourage you to watch the story by clicking here.

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – spread the word about the immediate need for more organ donors.  On-line registration can be done at http://www.donatelife.net/index.php  Whenever you can, help people formally register.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.  

You are also invited to join Organ Transplantation Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 a group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties.  Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts. 

Organ Donation Hypocrites


Too many people talk the talk but don’t walk the walk.  What do I mean?  You’ve heard me say that over 90 percent of Americans approve of organ donation but barely 35 percent bother to become donors.  This blog is a challenge.

Hey liberals who make so much of helping those in need, who support large governmental humanitarian relief programs and who urge everyone to perform some kind of community service, why don’t you practice what you preach and become organ donors.  If you don’t become organ donors and urge — no, help everyone you know to do the same, you are nothing but a bunch of hypocrites.

And you compassionate conservatives who so believe in encouraging private citizens to get more involved and to depend on government less, why aren’t you promoting organ donation and becoming donors yourselves?   You seem to encourage faith based and community based activism, but you, like the liberals, are sitting on your hands while thousands die due to a lack of transplantable organs.

And then there are the religious groups who preach the sanctity of life and that you should love your neighbor as you love yourself, why aren’t you doing more to promote organ donation?  You’ve got to do more than pray.  You’ve got to take some action.  Maybe God is answering your prayers by telling you to do something instead of depending on him to solve all the problems.

All of the above groups fall into a very large group of hypocrites.  If you don’t like this blog, don’t complain to me.  Go forth and save lives by encouraging organ donation and when someone tells you, “You are right I’m going to become a donor,” don’t stand by and accept that.  Offer to help them, drive them to the driver’s license office right away or get on line with them to register with Donate Life America.

You should all be as disgusted as I am that only 35 percent of Americans are organ donors.  If you believe in organ donation, why the hell aren’t you doing something about it?

I hope you have found this post to be helpful, perhaps enlightening but no matter what we would like to get your thoughts on this most important issue.  Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.

Visit and join my Facebook site, ORGAN Transplantation Initiative (OTI) at http://www.facebook.com/group.php?gid=152655364765710 the more members we get the greater our potential impact on decision makers who influence all organ transplant issues.  Also, check out my blog https://bobsnewheart.wordpress.com and my Facebook home page http://www.facebook.com/home.php.

The Importance of Organ Donation, A Reminder


 

For those of you who don’t know, I received a heart transplant at the Mayo Clinic in Jacksonville, Florida almost two and a half years ago.  My new heart came from a 35 year old stranger.  Without it I would have died within a few months. 

 

As of this writing there are 105,000 people on the national organ waiting list.  82,000 of them are waiting for kidneys (http://optn.transplant.hrsa.gov/).  A new name is added to the organ waiting list every 11 minutes.  A million more people suffer from blindness, medical conditions or devastating injuries that can be successfully treated with donated corneas or tissue.  

 

You would think that with 300 plus million people in this country there would be more than enough organs and tissue to save or enhance all of those lives. The fact is that while 90 percent of Americans believe in organ donation barely 35 percent take the time to register.  That means that each year more and more people are dying because of a lack of organs, nearly eighteen people die each day while waiting.  These deaths are totally unnecessary.  One organ donor can save or affect the lives of up to sixty people — sixty people!  North Dakota and Minnesota serve as marvelous examples of people getting the message. The donation percentage in Minnesota is 51% and in North Dakota it is 65%. 

 

Good intentions are not enough.  If you want to pay more than lip service to the issue, go to http://www.donatelife.net/ and you will immediately discover how you can register.  Donate Life America (DLA) is a part of the United Network for Organ Sharing (UNOS), which keeps the waiting lists and coordinates donation and transplantation throughout the United States.  If you are not a computer person either write to Donate Life America 700 N. Fourth Street Richmond, Virginia 23219 or you can call them at phone: 804-782-4920 and they will be happy to help you.  Whether you are a registered donor or not, talk to everyone you know about organ and tissue donation, there is no act that is nobler.

 

There are a multitude of questions about organ donation but here are the answers to just a few:

  1. What can be donated?  Organs: Heart, lungs, kidneys, pancreas, liver and intestines.  Tissue: Corneas, skin, veins, tendons, bone, heart valves and connective tissue.
  2. Should age or health affect my decision to be a donor?  No. Almost everyone can save lives through donation!
  3. Will my family have to pay for the cost of my organ and/or tissue donation?  There is no cost to the donor family for donation. All expenses related to organ and tissue donation are paid by LifeSource and passed on to the transplant recipients and their health insurers.
  4. Does my religion support organ and tissue donation?  All major religions support organ and tissue donation as one of the highest forms of loving, giving and caring.
  5. If I am a registered donor and I am admitted to a hospital, will they let me die so they can recover my organs?  Absolutely not.  Organ and tissue donation is an option only after all life-saving measures have failed.
  6. Can the rich and famous jump the list based on their celebrity status?  No.  Organs are fairly allocated based on medical criteria, genetic matching, and length of time on the waiting list.

There are many more questions and the answers can be found by calling LifeSource or visiting their website.

I am alive because of the generosity of a total stranger but there are so many just like me who will probably die waiting.  If every person who became a donor would convince just one other person to do the same there would be no shortage and we could stop the dying.  Please act today; it’s a matter of life and death.

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – spread the word about the immediate need for more organ donors.  On-line registration can be done at http://www.donatelife.net/index.php  Whenever you can, help people formally register.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.  

You are also invited to join Organ Transplantation Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 a group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties.  Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts.   

“First Person Consent” Can Increase Organ Donation


In the March 2009 edition of the Virtual Mentor The American Medical Association Journal of Ethics has published a paper in support of “First Person Consent,” a concept that could increase the number of organs available for transplantation. Now effective in 42 states, “First Person Consent” laws dictate that a documented donation decision like a donor card, drivers license etc, is legally binding and does not require the consent of any other person upon the death of the donor.   That means if a person has documented their decision to be a donor, families have no legal right to overrule it. You can read the report in its entirety at http://virtualmentor.ama-assn.org/

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I’ll explain the rationale in a moment but in order to make the concept effective two things must be done, 1) more people need to document their wishes.  That means that we should consider enacting laws in every state that require people to make a decision on donation when they renew their drivers license.  2) Medical personnel need to defer to the expertise of Organ Procurement Organizations (OPOs). 

 

To further quote from the AMA report,”The death of most people who become deceased organ donors is sudden, unexpected, and frequently tragic. The families of these donors are almost never prepared for this unfortunate situation.  “The refusal of families to grant permission is a major impediment to organ donation.  If, despite the law, we must get family consent, several factors have been shown to improve family consent rates:

 

First, the request for organ donation should be separate—or “decoupled”—from the declaration of brain death. This allows the family time to understand and accept the concept of brain death.

 

Second, the request for organs should be made by a trained OPO representative along with the hospital staff as a team. It is best that the physician or nurse caring for the patient not discuss organ donation with the family prior to OPO involvement. The hospital staff and OPO donation coordinator can work together to determine the best time to talk to the family.

 

Third, the request should be made in a private and quiet setting. Higher consent rates have been shown to occur when these 3 procedures are followed [1].(clicking on the number will provide further information).”

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The AMA report continues, “First-person consent removes a burden from family members because they do not have to come to a decision while attempting to cope with the very stressful situation of the death of a relative. First-person consent also avoids the problem of family members’ disagreement, and it may benefit families later on: more than one-third of families who made a decision themselves and declined to donate the organs subsequently regretted their decision [2].”

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The Virtual Mentor also says, “The medical care team must, to the greatest extent possible, remove itself from this conflict resolution process and rely upon the expertise of the organ procurement professionals. It is likely that the procurement coordinator has been in similar situations, has been trained to deal with them, and will be able to adequately resolve most of the issues to the satisfaction of all.

 

The AMA report is very emphatic, though, on the need for OPOs to develop and maintain a close working relationship with donor families.  “Although the law is on the side of the designated donor, it is critical to procurement organizations, transplant centers, and recipients that the OPO make a concerted effort to establish a cooperative relationship with the family. Legal and public conflicts that could result in fewer donors must be avoided. Willing participation from the family will also enable the procurement coordinator to obtain a thorough medical and social history, and will allow him or her to explain the procedure fully, confirm that donation will not interfere with the funeral, clarify that the OPO will assume hospital costs related to the donation, and convey much other information.

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Perhaps the most compelling reason to establish a positive relationship with the family of a potential donor is the benefit it offers to the future of organ donation. Working cooperatively with the donor family will result in a positive continued relationship. The surviving family members of a donor are known as donor families and, in our mission to increase awareness of the need for more organ donors, donor families remain an unparalleled resource for promoting the message.”

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I am a believer in adopting a system of presumed consent.  One in which people could opt out rather than opt in.  In countries where this has been tried donation rates have increased substantially.  But presumed consent requires a change in the law.  First Person Consent is already the law in all but 8 states.  What needs to be done is to fine-tune the system so we can eliminate the obligation OPOs and hospital officials feel to get donation permission from families.  Under First Person Consent laws no permission is necessary and that could mean a significant increase in available organs.  Perhaps if the AMA suggestions were adopted we might be a step closer to closing the organ donation/transplantation gap.

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Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – spread the word about the immediate need for more organ donors.  On-line registration can be done at http://www.donatelife.net/index.php  Whenever you can, help people formally register.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.  

You are also invited to join Organ Transplantation Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 a group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties.  Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts.   

Myths Inhibit Organ Donors, Kill People


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Sometimes on WordPress, the formatting goes berserk.  It did in this post and I apologize for the variances in print style but it was beyond my control.

 

Some of the greatest barriers to organ donation are urban myths and there are hundreds of them.  Primary among them, though, is the tale that doctors will let you die so they can recover your organs.  This lie seems to have risen from a single unresolved case in a California hospital in 2006.  Before we get to that, though, here are two examples of how this myth manifests itself into supposedly true stories thereby preventing people from becoming organ donors.

 

  1. “My wife does not want me to be an organ donor because a few of her friends (who “just so happen to be ER nurses”) claim that when an organ donor is in a life & death situation on the table, doctors will not try and save them so that their organs may be used.  This sounds like it defeats the purpose; letting one die so another can live. But, she swears that it’s true.”
     
  2. “I heard that having the pink organ donor ticket on your driver license will cause the Paramedics to allow you to die in order to harvest your organs. The rumor claims that due to the long list of people on the organ waiting list, the Paramedics are instructed to allow organ donors to die.”

 

First and foremost it is important to note that the medical team treating you in a hospital or ER is completely separate from the transplant team. The organ procurement organization (OPO) is not notified until all lifesaving efforts have failed and brain death has been determined by certified neurologists. The OPO does not even notify the transplant team of organ availability until the donor’s family has consented to donation.

Snopes.com, a wonderful source for dispelling myths, rumors and outright lies offers a concise and accurate explanation (http://www.snopes.com/medical/emergent/donor.asp) I encourage you to click on the link and read the entire entry but here are some of the more salient points. 

While the rumor would appear to confirm the belief that physicians involved in harvesting organs will happily sacrifice one patient in their efforts to secure parts for others, such belief overlooks one particular facet of this conjecture: Doctors who fail to provide their best medical care to their patients can and will be sued. As professional healers, they are held to a higher legal “standard of care” than is the average person and thus aren’t afforded the luxury in life or death situations of not attempting to do all in their power to save those whose lives hang in the balance. Additionally, in those instances where patients died, doctors who did decide to scale back care could well be charged with homicide.”

So you might ask, “How did this rumor get started?”  Again, according to Snopes:

“The rumor about organ-hungry doctors prematurely offing potential donors gained an unfortunate shot in the arm from a 2006 case in San Luis Obispo, California. Ruben Navarro, a 25-year-old man who suffered from the neurological disorder adrenoleukodystrophy as a child (by his early 20s his mental and physical condition had deteriorated to a point where he was placed in an assisted-care facility), was admitted lifeless and unresponsive to the Sierra Vista Regional Medical Center on 29 January 2006. His organs were subsequently retrieved for transplant five days later. (Those transplants, by the way, never took place because Navarro survived for more than seven hours after he was removed from life support and was given certain drugs, so his organs had deteriorated too much to be usable.)

Prosecutors have charged Dr. Hootan C. Roozrokh, the surgeon who removed Navarro’s organs, with felony counts of dependent adult abuse, mingling a harmful substance (Betadine) and prescribing a controlled substance (morphine and Ativan) without medical purpose. It is their assertion that rather than allow Navarro to die naturally, the doctor knowingly hastened the process by introducing into him excessive amounts of narcotic painkillers and sedatives for the express purpose of killing him. The doctor is also said to have administered the antiseptic Betadine through a feeding tube into Navarro’s stomach while Navarro was still viable, a sterilization procedure typically done after a donor is dead (since it’s likely to kill the living).

Roozrokh’s attorney says Navarro “was going to die shortly, whether in minutes or in hours” and said of the excessive painkillers used that “In that situation, you err on the side of ensuring that he’s pain-free.” Over-medicating the dying with morphine is not at all a new practice; terminal patients are sometimes given unusually high or overly-frequent doses of the drug in an effort (generally unstated but also generally understood by both medical staff and family members in attendance) to help the dying slip through death’s door a bit more quickly and thus terminate sufferers’ torments sooner. Such practice is generally roundly denied when spoken of openly, however.

Dr. Roozrokh continues to practice, pending the verdict in his case.”

If you would like comprehensive information on other organ donation/transplantation myths please visit http://www.iaod.org/myths-organ-donation.htm

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the need for more organ donors.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may have saved or affected  over 50 lives.

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Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com.   Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php 

What Minorities Need To Know About Organ Donation and Transplantation


In the past my posts have been very general about the need for and benefit of organ donation.  Today, though, I want to be more specific and discuss how minorities are affected by organ donation and transplantation.   

There is some evidence to indicate a reluctance to donate by minorities is based on what they believe is unequal treatment – minorities giving up organs for rich non-minorities. The facts are clear – more members of the minority population will benefit if there is an increase in minority organ donation.  The U.S. Department of Health and Human Services Office of Minority health  http://www.omhrc.gov/templates/content.aspx?ID=3123  published the following article on why it is important for Minorities to Donate.   “The need for transplants is unusually high among some ethnic minorities. Some diseases of the kidney, heart, lung, pancreas, and liver that can lead to organ failure are found more frequently in ethnic minority populations than in the general population. For example, Native Americans are four times more likely than Whites to suffer from diabetes. African Americans, Asian and Pacific Islanders, and Hispanics are three times more likely than Whites to suffer from kidney disease. Many African Americans have high blood pressure (hypertension) which can lead to kidney failure. Some of these diseases are best treated through transplantation; others can only be treated through transplantation.

The rate of organ donation in minority communities does not keep pace with the number needing transplants. Although minorities donate in proportion to their share of the population, their need for transplants is much greater. African Americans, for example, are about 13 percent of the population, about 12 percent of donors, and about 23 percent of the kidney waiting list.

***Editors note, the rate of organ donation in minorities may not keep pace but it doesn’t keep pace with non-minorities either.  Kind of an absurd statement.

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Successful transplantation is often enhanced by matching of organs between members of the same racial and ethnic group. Generally, people are genetically more similar to people of their own ethnicity or race than to people of other races. Therefore, matches are more likely and more timely when donors and potential recipients are members of the same ethnic background.

Minority patients may have to wait longer for matched kidneys and therefore may be sicker at the time of transplant or die waiting. With more donated organs from minorities, finding a match will be quicker and the waiting time will be reduced.”

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MOTTEP (Minority Organ Tissue Transplant Education Program)  http://www.nationalmottep.org/statistics.shtml is a treasure trove of information about this subject and they say at least half the people on the national waiting list are minorities.  “One disease, diabetes, is particularly notable: Diabetes is the 7th leading cause of death. Type 1 diabetes usually occurs within children. Type 2 diabetes is the most common form of diabetes, usually occurring after age 45. Complications include: blindness, kidney disease, amputations, heart attack and stroke.”

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Prevalence in African Americans:

·         Approximately 2.3 million African Americans have diabetes. 1/3 of them do not know it.

·         African Americans are 1.7 times more like to have diabetes, than Non-Latino Whites.

·         25% of African Americans between the ages of 65 and 74 have diabetes.

·         1 in 4 African American women over 55 years of age have diabetes.

Prevalence in Native Americans:

·         Native Americans have the highest rates of diabetes in the world.

·         Type 2 diabetes among Native Americans is 12.2% for those over 19 years of age.

·         Diabetes has reached epidemic proportions among Native Americans. Complications from diabetes are major causes of death and health problems in most Native American populations.

·         Amputations among Native Americans are 3-4 times higher than the general population.

Prevalence in Hispanics/Latinos:

·         Type 2 diabetes is 2 times higher in Latinos than in Non-Latino Whites.

·         1.2 million of all Mexican Americans have diabetes.

·         Nearly 16% of Cuban Americans in the U.S. between the ages of 45-74 have diabetes.

·         Approximately 24% of Mexican Americans in U.S. and 26% of Puerto Ricans between the ages of 45-75 have diabetes.

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Finally, a word about the process of organ allocation — it is fair and non-discriminatory.  What is unfair and very discriminatory is the fact that so many people don’t even get listed for an organ transplant because they can’t afford the cost.  That is a national disgrace.

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Please comment in the space below or email your thoughts to  me at bob@baronson.org

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

 

So Why the Rush To Become An Organ Donor?


Here is one good reason.  7,000 people die each year because there are not enough organs and right now as you read this; over 100,000 people are on the waiting list. 

 

Let us imagine you are watching a video on your I-Pod.  The scene is of a family in a loved one’s hospital room.  The family has been told there is no brain activity — the patient is brain dead.  The grief is so intense you can feel it through the device in your hand.  The Organ Procurement Organization (OPO) coordinator is on hand.  Her job is to comfort and console while at the same time asking the family if they would like to donate their loved one’s organs.  The question must be asked because the patient never made his wishes known.  On the wall, a clock with a second hand tics.  It is an unobtrusive but constantly interruptive reminder that another patient in another hospital is waiting for the organ that will help him live — and time is of the essence – tick, tick…

 

This scene plays itself out every day in hospitals around the country.  I know not what happened in my case, but when I got the phone call saying a heart might be available, I was raced to the hospital and in my daze gave little or no thought to events that had already transpired and were still unfolding.  Somewhere a grieving family told an OPO coordinator that they wished to donate their loved one’s organs. 

 

In a calm, almost serene manner, the OPO Coordinator informs the hospital of the decision and immediately like a finely tuned machine a highly complex but coordinated system begins to unfold.  With the notification of an organ availability several people and groups of people must spring into action; surgeons, nurses, anesthesiologists, drivers and pilots not to mention aircraft and ground transportation are at the ready.  In one hospital, the recovery team works to obtain the organs and keep them healthy while in another hospital a transplant team is preparing the patient to receive the new life-giving organ.   

 

I am sure to many this all sounds easy and perfected, but there is one weak link in this chain — the donor and whether he or she has made their decision clear and known to the family.  If you want to be an organ donor and do not make your wishes known, you are probably sentencing someone else to death.  It is at the time that brain death is declared that many families not knowing the patients wishes, refuse to donate.  Not because they are mean spirited but usually because in the confusion of the moment, the grief and the feeling of powerlessness many well intentioned people just say “No.”  Do you want to put that extra burden on your family, probably not. 

 

If you want to be an organ donor then do not wait a second longer, do it right now.  Go to Donate Life America and sign up now.  Yes, I said now!   http://www.donatelife.net/

 

As you sign on to Donate Life America think about this:

Here is a confounding fact that probably reveals an extremely high level of procrastination about when people will “sign up.”   According to Donate Life America:

      90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor.  And –very few of those people take the necessary steps in time to save a life.

 “But wait!”  As the commercial says, “There’s more!”

      Almost 100,000 men, women and children currently need life-saving organ transplants.

      Every 12 minutes another name is added to the national organ transplant waiting list.

      An average of 18 people die each day from the lack of available organs for transplant.

Have you signed up yet?

 

Please read and comment on my Organ Donation and Transplantation blogs on

https://bobsnewheart.wordpress.com

Also…visit my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page http://www.facebook.com/home.php  

Reflections on Recovering From a Heart Transplant


 

On August 21, 2007, I received a new heart at the Mayo Clinic in Jacksonville, Florida.  I also received a new life, a new attitude and a new appreciation for my family and friends.

 

I’m not going to write about the difficulties I encountered but rather I will attempt to describe my enrichment by the process.  Here are some of my “awakenings” of the last eleven months.

 

  • A new appreciation for life and a new ability to “see” things I was oblivious to before my transplant.  Now I “see” nature and the life around us, I “see” children at play, puppies, and love.  Yes, you can “see” love but you have to look and comprehend.

 

  • I have found the real meaning of love and it is far deeper than words.  Love, is a look, a touch, a gesture a movement.  Love can be seen in people’s eyes, how they listen and the helpful actions they take.   Sometimes you can be aware of love even though the actions taken might be wrong.

 

  • The gift of life is the ultimate in giving.  While receiving the gift is relatively easy, making the decision to give is sometimes difficult, especially for families with dying loved ones who have healthy organs.  Yet thousands of people make that decision every year despite the enormous grief they are experiencing.  I hope my donor family knows how intensely grateful I am.  I hope they know that they not only saved my life, but also caused great happiness for me, my family and my friends.  Let us not forget the living donors.  Can there be a greater expression of love, concern and compassion than those who voluntarily give all or part of an organ?  I think not.

 

  • While I loved my family unconditionally before the transplant I love them more deeply now, than ever.  And – while it sounds selfish, I now understand the depth of their love for me and how what affects me has an equal effect on them.  Oh, how the phrase, “No man is an island …” applies.  We should all recognize that and we would be far better people.  My greatest blessing is my wife, Robin.  I simply cannot express my love for her.  I won the biggest lottery ever when I found her. 

 

  • My dear, dear friends.  An experience like the one I just had really lets you know who your friends are.  There are friendly acquaintances and there are true, loving friends.  While both are important to me, few of the people I know fall into the latter category.  One has been a friend since we were ten years old.  I finally know what the word means; I suspect he has always known. 

 

I have learned so much more than the five items listed here, but these are the personal lessons that stand out.  All in all, I have to believe I have come out of this experience as a better person and one whose “betterness” will continue to grow.  In many ways, I wish everyone could have a transplant, we might all be better for it.

 

Please read and comment on my World Wide Issues  blogs on http://blogsbybob.wordpress.com.   Also…visit my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php

 

Don’t Just Support Donation — Do Something!


I’ve been blogging now for about seven months.  During that time, I have written forty-one blogs about organ donation, transplantation or both. While there seems to be interest in the blogs, comments are few and far between.

 

My goal when I started the Facebook site and Bob’s Newheart was to get people talking, to stir interest and hopefully, increase the number of organ donors so fewer people would die waiting.  I sense, though, that while there is interest in the subject, there doesn’t seem to be a burning interest.  I have asked repeatedly for people to comment, to send suggestions on subjects I should write about —  the response has been almost negligible.  But, I never give up, never.  I’m going to ask you again to help us solve this horrible organ shortage.  Please join in the discussion, read the blogs, offer new ideas to explore and I’ll follow your lead.  Just being interested is not enough.  You have to do something to help increase organ donation.  Talk, write, email, cajole, opine, assert, make your feelings known.  Help make sure everyone understands that organ donation is a life and death issue.

 

WordPress keeps a running summary of reader “hits” on blogs.  I think we are doing OK as the following summary will show, but I sure would like some reader input, some sense that you really give a damn.  More than that, I would appreciate it if you would spread the word about the Facebook site and Bob’s Newheart blogs.  Ask your friends to join in, ask them to comment, ask them to make a huge fuss about the organ shortage.  Every one of you could be faced with the need for an organ sometime, please don’t wait till the last minute to become active.  Do it Now!  I am alive because someone “did it now.”  There are thousands of others out there just like me that need your help NOW!

 

Here’s a brief summary of the six top blog hits in the past few months.  Where I have written more than one blog on a subject I have combined them into one category.  Get with the excitement.  Pump up your friends, let’s make a difference together.

 

  1. Alcohol’s effect on organs                                          287
  2. UNOS’ Failure in Increasing donation                        265
  3. Mandatory organ donation                                          219
  4. LifeSharers                                                                 190
  5. Presumed Consent                                                    135
  6. Cellular Memory                                                          101

 

Hit a homer — be a donor!

 

Please read and comment on my World Wide Issues  blogs on http://blogsbybob.wordpress.com.   Also…visit my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php

 

I Said “NO” to Organ Donation — Don’t do the Same


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On Christmas of 1990 and New Years of 1991, my 77-year-old father, Art Aronson, was in intensive care at the University of Minnesota Hospital.  He had been rushed 200 miles in a snowstorm to Minneapolis after suffering a heart attack.  He also had severe emphysema.  He was immediately taken to surgery for a quadruple bypass, he remained unconscious for days when finally a physician called me aside and said that dad was brain dead. 

 

At that time, I knew nothing of organ donation.  I only knew my dad was gone.  Someone from the hospital asked if I would like to donate his organs and in my grief I said, “NO!”  No one from an OPO (Organ Procurement Organization) was there to explain as they do now, and the question was asked almost as though it was an afterthought.  I wrongly believed that “donation” meant his organs would go to a medical school to be studied by students. It seemed to me that there were plenty of dead people so they sure didn’t need dad’s organs. Isn’t it ironic that 16 years later I needed and got a heart transplant from a total stranger?

 

In 1991 as now, there was an organ shortage, not as severe, but a shortage just the same – people were dying because of it.  After my dad’s death, I forgot about the issue until I was hired a couple of years later as a communications consultant for UNOS (the United Network for Organ Sharing) the national organization that coordinates available organs with people who need them.  Slowly, I began to realize I had not only made a bad decision but that others may have been affected as a result. You see, you can be an organ donor at any age.  Even though my dad was 77, there might have been something, whether tissue or organs, he could have donated.

 

So when I hear people criticize others for not being organ donors I get incensed.  We should not be criticizing people who are not organ donors; we should be educating them and their families.  Let’s face it, when you are young and healthy, donating your organs after death is not only an unpleasant thought, it is considered to be so far in the future you can do it later.  Well, there is no “later” for people on the transplant list and when you are dead you don’t need your organs. 

 

I think I am an excellent example of an intelligent, concerned and informed human being but I still said “NO!”  I said it because I was not at all informed about organ donation and never thought it would affect me anyway.  Millions of people are in the same position and that’s why I get incensed when I hear phrases like, “Donors should get organs first.”  That attitude is wrong, cruel and inhumane.  I am an example of someone who said “NO” and then received a new heart.  What if your loved one was dying but neither she nor the family knew anything about donation and transplants.  Should she be denied an organ because she wasn’t a donor?  I think not. 

 

I know that OPOs do a great job of working with families at the time of brain death.  But when you are grieving, you are not always rational.  If everyone would register as an organ donor and tell their families their wishes, a lot of problems would be solved, and we would have many more organs and transplants.  Register today by visiting Donate Life America at http://donatelife.net/  UNOS at http://www.unos.org/ or your regional OPO.  And – when you get your drivers license renewed be sure you check the “donor” box.

 

Please don’t make the same mistake I did.  You will regret it forever.

 

Please read and comment on my World Wide Issues  blogs on http://blogsbybob.wordpress.com

 

Also…visit my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php

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