Senators McCain, Clinton, Obama — How Would You Increase Organ Donation? April 29, 2008
Posted by Bob Aronson in Politics of organ donation.7 comments
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If you have been following the 2008 presidential campaign you probably know the candidate’s positions on most issues. But, where are they on organ donation? To the best of my knowledge, none of them has been asked the tough questions around that topic.
Join me in this effort to get some answers. Today I am sending the following letter to the three major presidential candidates. I urge you to send one too. You may use mine if it fits your situation. Email addresses and web sites for the three candidates are:
Senator John McCain
Website: www.johnmccain.com
Senator Hillary Clinton
Website: http://www.hillaryclinton.com/
Email: http://www.hillaryclinton.com/help/contact/
Senator Barack Obama
Website: www.barakobama.com
Email: http://my.barackobama.com/page/content/contact/
Dear Senator:
In August of 2007, I received a heart transplant at the Mayo Clinic in Jacksonville Florida. I was one of the few. On the national list of 100,000 people, fewer than 3,000 will get transplants this year and about 7,000 people will die because of a lack of donors. It has been estabished that one organ and tissue donor can affect the lives of up to 60 people. Organ donation is an immediate life and death issue that has not been addressed in this campaign. People are dying, so please answer the following questions. If you cannot answer them, or choose not to do so, please do not send me a form letter.
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Why haven’t you addressed this issue?
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Specifically, what would you do to increase organ donation in this country?
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Do you support the concept of presumed consent as practiced in many European countries? Why? Why not?
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Many people who are qualified for an organ transplant can’t even get on the list because they can’t afford the operation and the aftercare. What would you do to make sure that anyone who needs a transplant could pay for it?
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Will you support and promote geater funding for research into artificial organs?
Since 1995, over 100,000 people have died waiting for organs. The national organ donation effort run by UNOS is honorable but lacking. Each year the gap between donors and recipients widens. Please use your good office and your election year visibility to address this most important issue.
CC: NBC NEWS, CBS NEWS, ABC NEWS, FOX NEWS, CNN, MSNBC,(Morning Joe, Chris Mathews), The New York Times, The Washington Post, Los Angeles Times, USA Today, The Wall Street Journal, Associated Press, Time Magazine, Newsweek, U.S. News and World Report
To readers: Because of the minute-by-minute coverage of the campaign, we have a unique opportunity to influence millions to become organ donors. Please don’t just read this blog and then sign off. Send a letter to the Senators and a copy of this blog to all of your friends.
I also intend to begin a petition that will be sent to the candidates urging them to make increased organ donation a major priority whether elected President or not. If you like the idea let me know by writing to Jaxbob@gmail.com. If enough people respond I will move forward with a formal petition that you can sign.
Alcohol and Drugs — Cunning, Mysterious, Deadly April 28, 2008
Posted by Bob Aronson in Alcohol/tobacco/drugs.1 comment so far
They kill your organs slowly and painfully. They make your organs useless to you and for transplant. Up to 60 people could benefit from one organ & tissue donor. But when alcohol and/or drugs (including cigarette poisons) destroy your organs, they also destory the hopes and often the lives of many people who desperately need them.
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Readers of this blog have shown an extreme interest in the effect of alcohol and drugs on human organs. For that reason I offer my third and most comprehensive post on the subject. While a recovering alcholic I am not anti drinking, just opposed to the destructive use of alcohol. I have received many emails from readers who want to know if they are alcoholics. I cannot answer those questions, only an expert in the field can determine if you have a problem. Throughout this blog you will find several on-line resources for your convenience.
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Substance abuse is the nation’s top health problem, causing more deaths, illness and disabilities than any other preventable health problem today, according to a major report from the Substance Abuse and Mental Health Services Administration (SAMHSA). (www.samhsa.gov)
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The SAMHSA report indicates that, “Of the more than 2 million deaths each year in the United States, about one in four is due to abuse of alcohol, tobacco or illicit drugs,” the report says. “The economic cost of the abuse is estimated at more than $414 billion a year.” That means a half million people are probably taken out of the organ donor pool every year. If even 5 percent of the half million could provide healthy organs, 25,000 new organ donors could be added to the list.
The 2006 survey reveals that an estimated 22.6 million persons (9.2 percent of the population ages 12 and older) may have had either substance abuse or dependency problems in the past year. Of these, 3.2 million were dependent on or abused both alcohol and illicit drugs; 3.8 million were dependent on or abused illicit drugs but not alcohol; and 15.6 million were dependent on or abused alcohol but not illicit drugs.
One of the most disturbing effects of alcohol abuse in particular is that it can result in fetal alcohol syndrome, permanently scarring children and can range from increased aggressiveness to a lifetime of brain damage. http://ezinearticles.com/?The-Real-World-Health-Effects-Of-Drug-Abuse—Overview&id=486086
Finally, alcoholism and withdrawal from it can be deadly. According to WikiPedia
(http://en.wikipedia.org/wiki/Delirium_tremens) five percent of acute alcohol withdrawal cases progress to delirium tremens. Unlike the withdrawal syndrome associated with opiate addiction (generally), delirium tremens (and alcohol withdrawal in general) can be fatal. Mortality can be up to 35% if untreated; if treated early, death rates range from 5-15%.
If you want more comprehensive information visit the following sites. The National Institute on Drug Abuse (NIDA) http://www.drugabuse.gov/NIDAHome.html, The Partnership for a Drug Free America (www.drugfree.org/) or your local treatment center.
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LifeSharers gets, “No thank you,” from Priest April 25, 2008
Posted by Bob Aronson in LifeSharers.3 comments
I have written two blogs on LifeSharers. Both have received a great deal of attention. I had not intended to do another one on the subject this soon, but when I read the blog on StellarCross by Father Robert Lyons a “Primitive Catholic Priest” (http://www.stellarcross.org/2008/04/organ-and-tissue-donation-ii.html) I could not resist the temptation to reprint it. I have tried several times to reach Father Lyons, but could find no way to contact him. So I am taking the liberty of reprinting this without his permission. I hope that he, as a supporter of organ donation, will understand. His message is too important to ignore. I have highlighted LifeSharers comments in bold and italicized them in order to give clear separation between them and Fr. Lyon’s remarks.
Fr. Lyons‘ Blog (FL)
FL: In response to my post yesterday concerning Organ and Tissue Donation, I received an interesting comment. I posted it, somewhat reluctantly, but wish to actually expound upon why I don’t believe that the suggestion made in the comment is appropriate.
Dave Undis is the Executive Director of LifeSharers, a Nashville, Tennessee based organization that promotes an idea of prioritized donation on the basis of the recipient’s donation status (i.e., if they are or are not a donor). His comments follow, with my comments interspersed:
Undis: “Over half of the 98,000 Americans on the national transplant waiting list will die before they get a transplant. Most of these deaths are needless. Americans bury or cremate about 20,000 transplantable organs every year. Over 6,000 of our neighbors suffer and die needlessly every year as a result.”
FL: agree with Dave; as a proponent of Organ and Tissue donation, I definitely am not thrilled that so many people do not elect to give the gift of life. That being said, why do people choose not to donate? In fact, how many people have truly rejected donation? Simply asking “Do you want to be an organ donor” at the license branch isn’t sufficient. We need education. We cannot blame those who do not know about donation for going to their graves with their organs.
UNDIS: “There is a simple way to put a big dent in the organ shortage — give organs first to people who have agreed to donate their own organs when they die. Giving organs first to organ donors will convince more people to register as organ donors.”
FL: I doubt it. People use the same justification to support capital punishment. The United States executes, per capita, the largest number of criminals in the western world, yet we have one of the highest violent crime rates on the planet. People won’t have a clue about this idea – just as many have no real clue what donation is all about. Then, they will find out about it and it will be too late.
UNDIS: “It will also make the organ allocation system fairer. People who aren’t willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.”
FL: Again, what about a lack of education and knowledge? You are going to have to do better, Dave, in convincing me that this is a good idea. Until there is effective, universal education on this issue, your plan makes no sense. It excludes people who have bought into the lies about donation (i.e., they take organs from black folks and kill them and give them to white folks… or… if they know I am a donor, they won’t try to save my life). Look at the country we live in, Dave… do you REALLY think we have the knowledge in this nation to make your dream a reality? I don’t. Also, I am not willing to write off those who are ignorant of donation, just as I am not willing to write off God’s gift of eternal life among those who have never heard of Christ. To do so would be, in my mind, a betrayal of my Christian principles.
So, in short, Mr. Undis, thanks… but no thanks. Our Organ Donation system is flawed, needs help, and could stand to use a massive infusion of people… but it works far better than singling people out because of a lack of knowledge or because they have been taught all their lives that Donation is one group’s way of being a modern-day succubus off of another group.
When and if (and I do mean if) the United States passes a presumtive consent law concerning donation (you are a donor unless you opt out) then it will make sense to classify people based on their conscious decision to opt out of participating in the system. Until then, I am absolutely uncomfortable with any move to restrict donation in the fashion that LifeSharers suggests.
Posted by Father Robert Lyons
Zero to 60 in Eight Months, What a Ride! April 23, 2008
Posted by Bob Aronson in journaling.add a comment
Today I got the results of my latest heart biopsy from Lorraine my Mayo Clinic transplant coordinator. It is eight months since my heart transplant and the news was great.
First, she told me that for the second month in a row I showed ZERO rejection. That means my body, at least for now, is not trying to reject my new heart.
Then she told me there would be no medication changes. Everything was stable and could remain as is. Her third piece of news was that I no longer would have a heart biopsy every month; it would now be two months between biopsies.
But the best news was that I am 60 percent! “So,” you ask, “Why would anyone get excited about being 60 percent?” If you are not a heart patient, you probably would not understand. Here is the story.
Prior to my transplant, and for twelve years I suffered from cardiomyopathy. The heart muscle was failing. It was taking in more blood than it was ejecting, and had to grow larger to accommodate the extra blood. As the heart enlarged, it got weaker and so on and so on. When the heart gets weaker so does the body. Finally, I was in the end-stages of the disease. The effect was that I could no longer walk 100 feet or more without stopping to rest.
Here is the definition of ejection fraction (EF) according to the Mayo Clinic website: (http://www.mayoclinic.com/health/ejection-fraction/AN00360)
“During each heartbeat cycle, the heart contracts and relaxes. When your heart contracts, it ejects blood from the two pumping chambers (ventricles). When your heart relaxes, the ventricles refill with blood. No matter how forceful the contraction, it doesn’t empty all of the blood out of a ventricle. The term “ejection fraction” (EF) refers to the percentage of blood that’s pumped out of a filled ventricle with each heartbeat. This measures the capacity at which your heart is pumping. A normal LV ejection fraction is 55 percent to 70 percent.”
I am extremely happy with 60% because only 8 months ago my EF was between 15 and 20. For all practical purposes, I was an invalid. Now, my heart is as efficient as it was thirty years ago. I think I’ll celebrate, want to join me?
Thank you donor and family, Robin my caregiver and the brilliant people at Mayo Jacksonville.
GIVING AND LIVING, A NATIONAL CELEBRATION April 21, 2008
Posted by Bob Aronson in Giving and Living.Tags: Giving and Living
3 comments
Normal organ donation efforts are failing. However admirable they are, or however hard we all work, the gap between registered donors and the people who need transplants is growing wider each year. Short of scrapping UNOS (United Network for Organ Sharing) and the 1984 National Organ Transplantation Act (http://thomas.loc.gov/cgi-bin/bdquery/z?d098:SN02048:@@@L%7CTOM:/bss/d098query.html) which would take years of political bickering and result in little if any progress, I suggest we think big — really BIG! OK, here is where Bob sticks his neck out; following is my dream — my 50,000 foot strategic view. It only lacks the planning and tactical work J.
I propose that America hold a week-long party in the next five years to celebrate organ donation and transplantation with the goal of narrowing or eliminating the gap between organ and tissue donors and those who need transplants. Held in each state with a closing spectacular event in the nation’s capitol, we could honor transplant recipients, donors and their families as special guests. I propose, too that we should initiate a parallel effort to work with UNOS/OPTN (Organ Procurement and Transplantation Network) to effect policy changes.
Will this be expensive? Yes. A lot of work?” Yes again. But who is to say it cannot be done. Think of the benefits. If we have enough tissue and organs, more people could benefit. In the next ten years at least 100,000 more people will die on the transplant waiting list and there is no way of counting those who just die and never get on the list. We can stop the dying! I will volunteer my time and energy to help accomplish this goal. Who wants to sign on with me and what will you do to help?
We need sponsors, organizers and so much more. My dream envisions an event that includes nationally respected speakers, special events, entertainment, celebrities, national telethons, awards, patient and donor stories, special professional conferences (example; transplants for people who can’t afford them, how the media can help promote donation), workshops and, of course, international media coverage. Can a real grass roots effort succeed in America? Let us find out through this Giving and Living celebration. This could be the most massive organ donation effort in history.
I have given the preceding idea some thought, not enough obviously, but some. I have consulted with no one, anywhere. You, my reader friends, are the first to hear of it. Please offer your ideas, your help and your comments. I do not know if my dream can be realized but I know it will not be if I do not try. I know this for sure, it must be a major nationwide effort that includes everyone in every community if we are to increase organ donation to the point where anyone who needs an organ can get one.
To All Procrastinating Pack Rats April 16, 2008
Posted by Bob Aronson in Uncategorized.1 comment so far
Some people are pack rats. One of the reasons they behave as they do is because they cannot make a decision. Their three-car garage is packed with worthless junk while two, once shiny cars, sit in the driveway, exposed to all the elements. What a philosophy, “Let’s keep what is useless to us and ignore the real needs.” These procrastinators keep every old jar, nail, lampshade and license plate they have ever owned. I know some men who hang on to their 1970’s neckties because, “You never know when that style will come back.” Probably not in your lifetime, friend.
I guess if I stretch my imagination, I can almost understand that mentality. What I cannot understand are people who apply their Procrastinating Pack Rat way of living to organ donation. What possible good can your organs do you when you are dead? I defy anyone to give me one sound reason why it is better to let your organs rot — instead of donating them to someone who needs them. People who do not take the time to be organ donors are selfish, shortsighted and foolish.
Now, there is a big difference between those who do not get around to registering as an organ donor and those who are unfamiliar with the issue. The latter is our fault for not communicating more effectively. The former is shameful.
While I was one of the few to get the “gift of life” in 2007, 7000 other good people were not. They died waiting. Since 1995, around 100,000 people have died waiting. One-third of consenting donors never realize their wish to donate because family members refuse permission — in many cases, they were unaware of their loved one’s preference. So, let me administer the 50,000-volt shock (I hope)!
· As of today there are 98,806 people waiting for an organ transplant in the U.S.
· As of today a total of 2,197 transplants had been performed this year. That means over 96,000 people are left waiting. It means, if the data are correct, that a total of nearly 8,000 will die before the years end.
Do those figures bother you? Do you get some sense of urgency when you see them? Being an organ donor should be a responsibility not an option. Every major religion approves of donation and they all teach that we are to love our neighbors as we love ourselves. Why, then, are less then a third of all Americans registered organ donors? What good are organs that are left to decompose in a grave? Each non-donor gravesite represents a loss, maybe of life, for up to sixty (60) human beings – some are children.
Please, during this national Donate Life month and on behalf of all those on the transplant list, please — become an organ donor. You might save the life of someone important to you. Maybe you will save the life of someone important to me. To be truthful there is no guarantee that even if you are a donor that you will save a life. There is an absolute guarantee, though, that if you are not a donor you will not save a life.
To My Donor Family April 8, 2008
Posted by Bob Aronson in To My Donor Family.9 comments
It is national donate life month. Seven months ago, I had a heart transplant. On April 13, 2008 I sent this letter along with one from my wife, Robin. I hope sharing this letter will not only increase organ donation but will offer some comfort to other donor families.
Dear Donor Family:
On August 21, 2007 I received a heart from your loved one. You, he and it saved my life. I promise I will take care of this gift far better than I took care of my own natural organ. Each day before I get up I take a moment to feel this marvelous gift steadily thumping in my chest. It is alive and healthy and has created in me a new appreciation for life.
More than that, though, I am always aware that this heart is not mine. It belongs to the kind of person all of us should aspire to be. Moreover, he came from the kind of people all of us should aspire to be. Maybe it is my imagination but since receiving my new heart, I feel a serenity I have never before felt. I feel a concern for others far greater than I thought possible. I feel a responsibility to all organ donors and their families to do what I can to honor their loved ones by committing the rest of my life to promoting organ donation.
I was very sick prior to my transplant. I could no longer get around very well because my heart just could not pump efficiently enough. I knew I was dying and as a 68 year-old man with COPD and B positive blood, I did not think a transplant was in the cards. But it was. As a result, I believe that God saved me for a reason and that reason was to promote organ donation to honor you and your loved one.
I appreciate the simple things now, much more than before. I look forward every morning to seeing my loving wife and caregiver, Robin. Staying in contact with family and friends has become more important than ever before. I enjoy sitting in our sunroom watching the sunrise and sunset. Each day gives me a new thrill because each day is a gift from you and from God.
I don’t know if we will ever meet and although I am likely to be at a loss for words, I would like to thank you personally. You gave me life, you gave me peace and you gave me a profound sense of gratitude and understanding. I am a new person and I hope that in your grief it helps to know that a part of your loved one is alive and that with his help I am trying to live my life in a way that would make you proud.
God bless
Bob Aronson
LifeSharers — TruthStretchers April 7, 2008
Posted by Bob Aronson in LifeSharers.7 comments
In case you don’t already know, I am a heart transplant recipient. I got my heart from a generous stranger seven months ago. I know what it is like to be dying and what it is like to hope beyond hope that you will get an organ.
My advice; if you want to save lives through organ donation, Joining LifeSharers is not the answer. They are illusionists and what you see is not what you get. If you are a LifeSharers member and you believe in fairness and in helping all people regardless of position in life, consider resigning your membership. I offer four reasons for my admonitions.
1. Deception: According to LifeSharers, “Organ donors should get organs first.” That is what they say but it is not what they mean. Just being an organ donor is not enough; you have to be an organ donor and a member of LifeSharers. Proof? Read this quote from www.lifesharers.org “Even if you are already a registered organ donor, you should join the LifeSharers network. By doing so, you will have access to organs that otherwise may not be available to you.” In other words, if you don’t join you have no access — even if you are a registered donor.
2. Insensitive, Immoral, Selfish: On the LifeSharers FAQ they ask, “Shouldn’t organs go first to the people who need them most and have been waiting longest? Their answer: “Organs should go first to the people who have agreed to donate their own organs when they die…” Funny, until I wrote my last LifeSharers blog the answer started with, “NO.” But they removed the “No” when I was critical of it. LifeSharers does not care if you have only days to live. Unless you are a member of their club, you don’t get first dibs on an organ.
3. Insincere distraction. All over the U.S. there are honest programs doing what they can to promote fair and equitable organ donation. LifeSharers only hampers those efforts by confusing people. It is important to note, too, that for LifeSharers to grow large enough to have any influence and treat everyone fairly, everyone would have to join — everyone! When was the last time you heard of everyone joining anything? Besides, at their current rate of growth, about 2,000 members a year, it would take 500 years for LifeSharers to get a million members. But give them the benefit of the doubt. Maybe they can grow by 4,000 members a year. Then it will only take them 250 years to get to a million. There are 300 million people in the U.S.
4. Discriminatory & Unfair: If you haven’t heard about donation, have wrong information, just didn’t get around to signing up or don’t have access to a computer, LifeSharers thinks you don’t exist. If you are on the list and dying but not a member, LifeSharers isn’t interested in you. If you are an organ donor and dying, LifeSharers doesn’t care about you. Being an organ donor does not count unless you are a LifeSharers member.
Don’t be fooled by LifeSharers double talk, misdirection and truthstretching. Read and dissect what they have to say. It’s nonsense, it is unfair and it contradicts itself.
If you really want to help those in need of organs, sign a donor card, get it on your driver’s license, tell your family and then ask your family and friends to do the same. Those are the actions that will save lives. Want more information contact your local OPO or Donate Life America http://www.donatelife.net/.
PEACE from a grateful, no strings attached heart recipient and long-time registered organ donor.
Blood Shortage Jeopardizes Transplants, Other Surgeries April 5, 2008
Posted by Bob Aronson in Blood shortage.add a comment
According to an April 1, 2008 story in the Florida Times Union, (http://www.jacksonville.com/tu-nline/stories/040108/met_263705027.shtml) C. Daniel Smith, chairman of surgery at Jacksonville’s Mayo Clinic, said cardiac surgeries have been put off in the last few days because doctors weren’t satisfied with the amount of blood available.
The clinic has not had to decline organs for transplant yet but will probably have to do so if the blood shortage continues, Smith said.
In 2007, Mayo had to reject about 10 organs for transplant because it didn’t have enough blood at the time those organs became available, Smith said.
It isn’t only organ transplants that are affected, it is all surgeries and the shortage is not limited to Jacksonville, it is nationwide, it is serious and it could affect you or someone you love.
Call your local chapter of the American Red Cross and give blood today. For more information click on: http://www.givelife2.org/aboutblood/faq.asp
PEACE
Donate organs, donate blood. Now!
LIFESHARERS UNFAIR — UNWISE April 3, 2008
Posted by Bob Aronson in LifeSharers.20 comments
This is my shortest blog ever.
Being as April is National Donate Life Month, I decided to re-visit my views on LifeSharers (www.LifeSharers.org). Upon doing so I determined that I can neither support nor be a member of a group that is exclusive rather than inclusive.
Yesterday I sent an email to LifeSharers Founder Dave Undis informing him of my decision and withdrawing my membership. ,While I do not approve of the UNOS/OPTN approach, the LifeSharers concept is worse. It is discriminatory and will punish innocent people on the waiting list whose only crime is that they did not take the time to become organ donors. Frankly, I believe LifeSharers could cause the unnecessary death of a non-donor if it ever affects a transplant from a donor to a donor. The end simply does not justify the means.
One of the keys to my decision was this one question and answer from the FAQ section (http://www.lifesharers.com/faq.asp) on the LifeSharers Website:
Q. Shouldn’t organs go first to the people who need them most and have been waiting longest?
A. No. Organs should go first to the people who have agreed to donate their own organs when they die. This increases the number of organ donors, and that saves lives. As LifeSharers increases the supply of organs everyone benefits, even non-members. Besides, it’s a myth that organs are now given first to the people who need them most or have been waiting longest. Some of the people who need organs most can’t even get on the waiting list because they can’t afford to pay for a transplant. Many who have been on the waiting list a long time are removed from the list because they’re considered too sick to get a transplant.
(Since writing this blog, LifeSharers has removed the “No” from their response.)
I cannot imagine being so uncaring as to say the neediest person should not be offered the organ first. How cold! How utterly inhumane. That hard and immediate NO answer sent shudders up and down my spine. That, NO is, to me, the height of arrogance and will result in a death sentence for some poor, end stage sufferer who neither cares about nor is involved in the politics of organ donation. Worse yet, Dave Undis wrote the question and the answer. I only reprinted it.
UNOS has some serious questions about the ethics of the LifeSharers concept and I cannot believe that just because a few donor-to-donor transplants might take place that UNOS will suddenly find the practice not only ethical but also desirable and adopt it as the nation’s organ donation and transplantation policy as LifeSharers suggests it will. That will happen about the same time the Shia and Sunni quit fighting, embrace Israel as their dearest friend and get together for a group hug. In short, it’s a pipedream.
Life — Pass It On. If you are not an organ donor, become one today. Don’t take your organs to the grave, they could save or improve many lives. And — you will get a bit of immortality.
PEACE; from a grateful, no strings attached, heart recipient
