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
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 ).
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 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.
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 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 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
(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 Patients, Families and Friends 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.
And — there are grateful organ recipients, too.
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.
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.
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 http://bobsnewheart.wordpress.com and my Facebook home page http://www.facebook.com/home.php.
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:
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.
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.
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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.
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
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.
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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 support the point that 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
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
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
http://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
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.
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
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.
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
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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
