Bob's NewHeart

Using the DMV to Inrease Organ Donation

Bob Aronson — Tue, 22 May 2012 13:24:32 +0000

Reprinted from The New York Times

| May 17, 2012, 12:35 pm

Last summer I went to my local Department of Motor Vehicles to renew my driver’s license. When it was my turn after a half-hour wait, a woman behind the counter summoned me, muttered a greeting and began shuffling through my papers.

After a few minutes she broke the silence and asked, “Do you want to be an organ donor?”

As a surgeon specializing in liver transplants, I’ve spent more time than most people thinking about that question. But on that particular afternoon, after a long wait on hard benches in a spartan room with a dozen others gazing glassy-eyed into space, a question about death and the dispersal of body parts felt as if it had come from out of the blue. Or from the script of a bad existential play.

It took me a minute to collect my thoughts and agree, but the experience reminded me why there are not enough organs available for transplant in the United States and why only half of all Americans consent on their driver’s licenses to organ donation. It’s hard to think about dying anywhere. It’s particularly difficult in the middle of the D.M.V.

Unfortunately, there are significant repercussions to those decisions. More than 100,000 patients are currently on the transplant waiting list, and about 7,000 of them die each year because of the organ shortage. Even more dire is the situation of African-American patients, who have a higher incidence of diseases that can result in kidney failure. These patients make up almost a third of the waiting list but account for only about 15 percent of those who donate after death. Even though organ allocation does not take race or ethnicity into account, the chances of a “good match” are increased within groups with genetic similarities.

An interesting study published last month in Annals of Internal Medicine offers some hope of increasing the number of people who consent to donation on their driver’s license, one of the easiest and most popular ways to register donors. Unlike previous initiatives that have tried appealing language like the “gift of life,” offering educational programs at workplaces or churches, promoting a YouTube video reminiscent of a popular soft drink jingle and, most recently, tapping into the power of Facebook, this approach takes advantage of the obvious – the wait at the D.M.V.

For six months, a group of researchers stood outside branches of the Bureau of Motor Vehicles in northeastern Ohio and stopped anyone arriving to apply for or renew a driver’s license. They then asked half of these people to watch a five-minute iPod video on organ donation before entering the office, and they asked everyone to show their new driver’s licenses when they left the building.

In the video, family members, donors, transplant recipients and people whose friends and relatives died while on the waiting list discuss their experiences. They also answer common questions about the personal impact of donation, religious views and the level of care a patient might receive once it is known that person is a potential donor. Most significant, the video also encourages viewers to begin thinking about donation, so most people who watch the video as they enter the D.M.V. will contemplate the decision while they are waiting to get their licenses.

The video resulted in an increase of more than 10 percent in consent for donation. And the increase was even greater among African-Americans; nearly 25 percent more consented to organ donation after watching the short film.

“Video is very powerful, particularly among minority communities where health care literacy is an issue,” said Dr. J. Daryl Thornton, the lead author and an assistant professor of pulmonary and critical care medicine at the MetroHealth Campus of Case Western Reserve University School of Medicine in Cleveland. “If you give people time to think and contemplate right before you ask them, you can have an impact on their decisions.”

Those who watched the video felt better informed, had fewer conflicts about the idea of donating and were less likely to want to be buried with all their organs. But there were limitations. Regardless of whether they watched the video, some people continued to believe, for example, that carrying a donor card would mean they would receive less emergency medical care in case of an auto accident.

“There are probably some deep-seated beliefs about organ donation and the health care system that a five-minute video is unlikely to change,” Dr. Thornton said.

It is still unclear whether the increased number of consents that resulted from the video will mean more available organs in the future, but Dr. Thornton and his colleagues are heartened by their findings and are continuing their research. The video is already playing as a public service announcement in some D.M.V.’s throughout the Washington State, and there are plans to try to link it to state motor vehicle Web sites for those who are renewing a license online.

“Even though the majority of people support organ donation, it’s hard for them to envision becoming the donor themselves,” Dr. Thornton said. “We’re trying to create a bridge that makes it easier for those people to cross over.”

Bob Aronson of bobsnewheart is a 2007 heart transplant recipient, the founder of Facebook’s 1800 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

Please view our 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.

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 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.

Yes, Brain Death Means You Are Really Dead!

Bob Aronson — Wed, 16 May 2012 12:16:40 +0000

Are brain dead patients really dead? That’s the question many people are asking because of stories circulated by irresponsible journalists, TV shows and movies who seek sensational plots and people who just refuse to acknowledge the facts.

The simple answer to this question is, “Absolutely. If you’ve been declared brain dead by a qualified team of experts in a hospital setting then you are dead. The New York Organ Donor Network put it best, “There are more tests to establish death done on potential organ donors than there are on people who are not donors.”

There have been several stories circulated about how “Brain Dead” people have recovered and gone on to live normal lives. I have spent the last month looking into these stories and have determined that while one or two are unexplainable primarily because families won’t release medical information all the rest were simply not true.

I have interviewed two world famous neurologists who have written extensively about brain death and who were part of the process that developed the rules for making that determination. The protocols for determining brain death are more rigorous than for proclaiming death under normal circumstances. Every single neurologist, physician or other medical expert I’ve talked with has said the same thing, “No one recovers from brain death!” New protocols were established in 2010 to make the testing even more rigorous and they require the physician who is declaring brain death to fill out a check list to be sure every step has been completed. Again, this process is more rigorous than what is used to declare death under normal conditions.

Here’s the checklist that must be followed in order to declare brain death:
Cause of Brain Death:
________________________________________________________________
Date of Exam: ____________________________
Time of Exam: ____________________________
A. Absence of Confounding Factors: RESULTS
1. Systolic blood pressure > 90 mmHg ______________________
2. Core temperature > 36˚C ______________________
3. Negative for drug intoxication or poisoning _______________________
4. Toxicology results ______________________
5. Negative for neuromuscular blocking agents ______________________
B. Cranial Nerve Reflexes and Responses:
1. No spontaneous muscular movements ______________________
2. Pupils lightfixed
_______________________
3. Absent corneal reflexes ______________________
4. Unresponsiveness to intensely painful ______________________
stimuli, e.g. supraorbital pressure
5. Absent response to upper and lower ______________________
airway stimulations, e.g. pharyngeal and
endotracheal suctioning
6. Absent ocular response to head turning ______________________
(no eye movement)
7. Absent ocular response to irrigation of the ears ______________________
with 100 mls. of ice water (no eye movement)
8. Apnea PaCo2>60 mmHg ______________________
a. PaCo2 at end of apnea test
b. PaO2 at end of apnea test
C. Medical Record Documentation of the above Examination
D. Comments
__________________________________________________________________________
__________________________________________________________________________
__________________________________________________________________________
__________________________________________________________________________
________________________________
Certification of Death
Having considered the above findings, we hereby certify the death of:
_____________________________________________________________________________
Physician Signature Printed Name Date/Time

There will always be naysayers and people who “know of people who recovered” but I am satisfied after considerable research that when brain death is declared it is final.

Brain death is never declared by anyone with any connection to organ recovery and transplantation. The transplant team is not even aware of the patient until after brain death has been declared. The physician who declares brain death is independent of the recovery and transplantation team. Physicians who attend to patients on a regular basis are sworn to and legally committed to do everything possible to save your life. They are not part of the transplant team either and in many cases the hospitals where people are declared brain dead don’t even have transplant teams because they are not transplant centers.

To add to theevidence I have offered is this information from Stacey Gelowitz Renal Transplant Coordinator at Alberta Health Services Edmonton, Canada Area Hospital & Health Care. While she is in Canada the American and Canadian processes for declaring brain death are virtually identical. Here’s what she wrote:

“At our center, we define neurological death by two criteria: irreversible loss of the capability for consciousness AND irreversible loss of all brainstem functions (including breathing). The protocol we follow for adult NDD is as follows:
Done twice by 2 physicians independently, who are not associated with transplantation
(1) Deep unresponsive coma with known cause
(2) Absence of confounding factors (eg. alcohol, tricyclic antidepressants)
(3) Temp > 34 degrees C
(4) No brainstem reflexes
a. No motor responses except spinal reflexes
b. No cough
c. No gag
d. No corneal responses bilaterally
e. No vestibulo-ocular responses bilaterally
f. No oculocephalic reflex (Doll’s eyes test; contraindicated in spinal injury)
g. No pupillary response to light bilaterally (pupils 6mm)
h. Apnea test, pH < 7.28 and PaCO2 > 20mmHg above pre-apnea test level
(5) If pt doesn’t meet all above criteria, do ancillary tests to show absence of intracranial blood flow:
a. Radionuclide cerebral blood flow study
b. Cerebral angiography
It can be hard for families to comprehend that their loved one is dead because the heart continues to beat spontaneously and the person is supported by machines so they look asleep. Important to note is that…
* No brain function remains (in contrast to coma/vegetative state).

* Heart continues to beat because of mechanical support stabilizing body, e.g. ventilators. Remember: Sinus rhythm is controlled by cells within the heart (SA/AV nodes), so as long as the heart is being perfused adequately (getting O2 via blood), it is happy to continue beating. Medulla oblongata in brain controls rate and strength of beat, but not basic rhythm).

* Blood still flowing to body organs (heart, lungs, liver, kidneys, pancreas) allowing transplantation if donor family consents, the organs are functioning adequately, and the potential donor has no serious health concerns

It is VERY IMPORTANT that the donor does not have any factors that confound the diagnosis of brain death. I think it is in these circumstances that brain death is (very rarely) wrongly diagnosed. A great website that you can refer to that touches on these ideas: http://www.braindeath.org/clinical.htm. It goes through different confounding factors and why physiologically in their presence brain death cannot be declared.

I have not seen any reports where pts recover from ‘brain death’ and it was not due to one of these confounding factors. We have gotten much better as a medical community at recognizing the suppressive effects of this list and know now not to declare brain death in the their presence. I think where patients extremely rarely slip through that can lead to wrong diagnosis of brain death is in the following two circumstances: (1) pts are on an unknown substance that is not tested for on toxicology panels and suppresses brain stem reflexes. Or, (2) a pt receives a drug in hospital (eg sedative to stop seizures or allow intubation) and the pt metabolizes the drug extremely slowly. The latter example (slow drug metabolism) is more applicable to children/babies rather than adults, but can happen in both (here is a case study from our center describing just that: http://www.ncbi.nlm.nih.gov/pubmed/19818943). As a result, the time in which brain death is declared was extended.

People need to understand that these instances are incredibly rare. If there is any doubt that one of these confounding factors is contributing to a wrong diagnosis of brain death, another tox screen or temp etc can be done to rule out such factors. Take a look at the cases people are presenting on reversible brain death. I would bet that all fall under what is discussed above. That said, some people will still stick to their guns and not believe you no matter how much info is provided, and that’s okay too”

If anyone needs more information that I have provided here I suggest you contact a neurologist at your nearest transplant center and ask him or her. If you still doubt the process then perhaps you should not be a donor.

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

Please view our 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.

If you want to spread the word personally about organ donation, we have a PowerPoint slide show for your use free and for use without permission. Just go to 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.

To Remember Me — A Donor’s Request

Bob Aronson — Sun, 29 Apr 2012 10:03:30 +0000

To Remember Me

By Robert Noel Test (1926-1994)

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital; busily occupied with the living and the dying.

At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped. When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives.

Give my sight to the man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.

Give my heart to a person whose own heart has caused nothing but endless days of pain.

Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.

Give my kidneys to the one who depends on a machine to exist from week to week.

Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.

Explore every corner of my brain.

Take my cells, if necessary, and let them grow so that, someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.

Burn what is left of me and scatter the ashes to the winds to help the flowers grow.

If you must bury something, let it be my faults, my weakness and all prejudice against my fellow man….

If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you.

If you do all I have asked, I will live forever.

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

Bob Aronson — Sun, 08 Apr 2012 10:39:17 +0000

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

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

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

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

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

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

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

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

But then there are these stories:

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

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

How Cellular Memory Might Work

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

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

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

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

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

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

Alcohol and Drugs The Organ and Child Killers

Bob Aronson — Thu, 05 Apr 2012 01:42:14 +0000

Alcoholism and drug abuse have haunted my family for years. I’ve been in recovery for just about 30 years but I’m not alone in my family. Anonymity disallows further disclosure but trust me, I know about addiction first hand and even as I write this another family member is suffering and causing suffering. I hate the disease with every fiber in my body and I know how hard it is to fight it.

Alcohol is a drug. It is no different than heroin or cocaine or Dilaudid or Oxycontin. They are all addictive drugs and they ruin lives and kill people. Those are facts. Here’s another fact. There is an alcohol and drug abuse epidemic among young people in America today.

Here is some shocking information from the National Center On Addiction and Substance Abuse at Columbia University. And if you are not shocked you should be. http://www.casacolumbia.org/templates/Home.aspx?articleid=287&zoneid=32

Half of college students binge drink and or abuse other drugs and almost a quarter meet medical criteria for alcohol or drug dependence.
Prescription drug abuse is the most rapidly increasing drug abuse among teens.
Each day more than 13,000 children and teens take their first drink
7 million (26 percent) of public school students age 12-17 say their school is both gang and drug infected.
Teens who see their parents drunk are more than twice as likely to get drunk in a month and three times likelier to use marijuana and smoke cigarettes
In 2009 more than one third of teens (8.7 million) said they can get prescription drugs to get high within a day and nearly one in five said they could get them in an hour.

Now, you may ask yourself why a blog about organ donation and transplantation is focusing on alcohol. The answer is simple. Alcohol can and does destroy human organs. If Americans could better control their alcohol consumption the number of people who need organ transplants would drop considerably. Here are just a few of the effects of prolonged alcohol and drug abuse:’

The brain — confusion and memory loss. Changes in sensation and numbness.
Scarring of the liver called cirrhosis which can lead to death.
Disease of the pancreas and stomach even stomach cancer
Heart irregularities and weakening leading to death (my alcoholism could have contributed to my need for a heart transplant).
Upset the body’s natural control of blood fats and blood sugar levels.
Bone thinning called osteoporosis
Kidney disease

Long-term use of alcohol and drugs in excessive quantities is capable of damaging nearly every organ and system in the body.

Now, back to the epidemic amongst our youth. Let’s just focus on alcohol. Underage drinkers account for 11.4 percent of all the alcohol consumed in the U.S., according to Teen Tipplers: America’s Underage Drinking Epidemic, a report released by The National Center on Addiction and Substance Abuse at Columbia University.

The report found that more than five million high schoolers (31 percent) say they binge drink at least once a month. The gender gap in alcohol consumption that for generations separated girls and boys has disappeared among younger teens: male and female ninth graders are just as likely to drink (40 percent vs. 41 percent) and to binge drink (22 percent vs. 20 percent), the news release said.

But let’s not depend on just once source. Here’s what the National Institute On Alcohol Abuse and Alcoholism (NIAAA) says about young teens and alcohol and the related risks.

“For young people, alcohol is the drug of choice. In fact, alcohol is used by more young people than tobacco or illicit drugs. Although most children under age 14 have not yet begun to drink, early adolescence is a time of special risk for beginning to experiment with alcohol.

While some parents and guardians may feel relieved that their teen is “only” drinking, it is important to remember that alcohol is a powerful, mood-altering drug. Not only does alcohol affect the mind and body in often unpredictable ways, but teens lack the judgment and coping skills to handle alcohol wisely. As a result:

Alcohol-related traffic crashes are a major cause of death among young people. Alcohol use also is linked with teen deaths by drowning, suicide, and homicide.
Teens who use alcohol are more likely to be sexually active at earlier ages, to have sexual intercourse more often, and to have unprotected sex than teens who do not drink.
Young people who drink are more likely than others to be victims of violent crime, including rape, aggravated assault, and robbery.
Teens who drink are more likely to have problems with school work and school conduct.
The majority of boys and girls who drink tend to binge (5 or more drinks on an occasion for boys and 4 or more on an occasion for girls) when they drink.
A person who begins drinking as a young teen is four times more likely to develop alcohol dependence than someone who waits until adulthood to use alcohol.

The message is clear: Alcohol use is very risky business for young people. And the longer children delay alcohol use, the less likely they are to develop any problems associated with it. That’s why it is so important to help your child avoid any alcohol use.

So you say, “Ok, but what can I do about it. If kids want to drink they’ll find a way.” And you are right. But often one of the ways they find to drink is through family members. Over 70% of eighth graders say alcohol is easy to get and 30% of children age 12-14 get alcohol from a family member.

It’s also wise to use some common sense and remember that as parents you are role models. Your drinking habits are closely observed by your children whether you think so or not.

There is help and advice from many sectors…SAMSHSA for one (SAMSHSA is the Substance Abuse and Mental Health Services Administration of the U.S. Government.) http://underagedrinking.samhsa.gov/ Hers’ what they say.

Between the ages of 9 and 13, children start to think differently about alcohol. Many children begin to think underage drinking is OK and some even start to experiment. It’s never too early to talk to your children about alcohol, and encourage them to talk with you. Over 70% of children say parents are the leading influence in their decision to drink or not.

Lots of little talks are more effective than one “big talk.”

Sitting down for the “big talk” about alcohol can be intimidating for both you and your child. Try using everyday opportunities to talk – in the car, during dinner, or while you and your child are watching TV. Having lots of little talks takes the pressure off trying to get all of the information out in one lengthy discussion, and your child will be less likely to tune you out.

When you do talk about alcohol, make your views and rules clear.

Take the time to discuss your beliefs and opinions about alcohol with your child. Be honest and express a clear, consistent message that underage drinking is unacceptable. When they feel that you’re being real and honest with them, they’ll be more likely to respect your rules about underage drinking.³

Family, peers, school, and the community all play a role in your child’s decision to drink. In fact, most children who use alcohol get it from a friend or family member.¹ To ensure these people become positive role models for your child, let them know how you feel about underage drinking.

I have always contended that the best way to solve the organ shortage is to live healthier lives. That means we have to start at a very early age. Parents must teach their children about drugs and alcohol as soon and as often as possible. If we don’t get a handle on this problem every other problem we have in our society will get worse.

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

Cheney Got a New Heart — Ethicists Need One

Bob Aronson — Wed, 28 Mar 2012 10:58:54 +0000

I am an average American male, human being. I’m not a genius not gifted just a man of normal intelligence who likes to think and read and research and write about about what I’ve found. Some things really stump me, though. I’m terrible at math, I love physics but don’t have a clue about how any of it works, and even after spending a good many years as a professional broadcaster I still don’t completely understand how the sound and picture got from me to your radio or TV. What mystifies me most, though, is the thought process of people who call themselves ethicists. The word is even hard to say, you kind of feel as though you have developed a lisp.

Just so we are all on the same page here, it is important to define our terms. First the Dictionary.com definition of ethics http://dictionary.reference.com/browse/ethics

eth·ics

[eth-iks] Show IPA

plural noun

1. ( used with a singular or plural verb ) a system of moral principles: the ethics of a culture.

2. (the rules of conduct recognized in respect to a particular class of human actions or a particular group, culture, etc.: medical ethics; Christian ethics.

3. moral principles, as of an individual: His ethics forbade betrayal of a confidence.

4.( usually used with a singular verb ) that branch of philosophy dealing with values relating to human conduct, with respect to the rightness and wrongness of certain actions and to the goodness and badness of the motives and ends of such actions.

Art Caplan of the University of Pennsylvania, the man who questioned whether the Vice President was too old to get a transplant, is a “Bioethicist.” The same Dictionary gives this definition.

bi·o·eth·ics

[bahy-oh-eth-iks] Show IPA

noun ( used with a singular verb )

a field of study concerned with the ethics and philosophical implications of certain biological and medical procedures, technologies, and treatments, as organ transplants, genetic engineering, and care of the terminally ill.

Having established who and what we are talking about let us return to the continuing saga of the Cheney heart transplant. The ethicists are rallying behind their colleague Art Caplan. One said, “The ethical issues are not that he (VP Cheney) got a transplant, but who didn’t?”

What an absurd argument! That could be said about anyone who got a transplant. if a 40 year old got a new liver, do we ask, “Who didn’t get the liver he just received?” I may not know much about ethics but I do have a clue about logic and somehow logic has been lost in the arguments forwarded by these learned people. I wonder how well any of them would do on “Are you smarter than a 5th grader.” Probably not real well being as that takes knowledge not philosophizing.

At the risk of sounding like a reactionary I have to say that some of these ethicists are the ones who got us in this donation shortage in the first place. For years the ethicists have been telling us that the only ethical way to obtain organs is through the “Altruistic” system which is what we have now — people voluntarily becoming donors. This method has been in effect since 1984. The problem is that it doesn’t provide anywhere near enough donors to satisfy the need, therefore from 6000 to 7000 people die each year while waiting for organs.

The ethicists have met many times to consider alternatives to altruistic donation and each time after a great deal of philosophizing, consternation and speculation have found that the alternatives are, you’ve got it, “unethical.”

Now I’m no rocket scientist and don’t have a PHD or a fancy title like “Bioethicist” but I do have common sense. It seems to me that if you are really concerned about ethics you would have to expand your thinking to a bigger picture. These ethicists appear to have quit thinking about the problem when they reached their myopic conclusion. They conveniently ignore the fact that people are still dying and will continue to die because they refuse to allow change. Doesn’t that deserve some of their “ethical” brainpower, philosophizing and speculation, too? It is amazing to me how strangely silent these “holier than thou” ethicists are about not questioning the ethics of allowing people to die.

There may be an explanation for their actions though and that explanation was found way back in 1931,long before transplants were considered possible. You see, even then the medical community was having problems with ethicists who considered themselves to be “Experts.” http://tinyurl.com/7c8fnho

Harold J. Laski writing in the London’s Fabian Society, manuscript in February of 1931, presented a challenge to the expertise of an “expert” in decision-making with the following:
:
“But it is one thing to urge the need for expert consultation at every stage in making policy; it is another thing, and a very different thing, to insist that the expert’s judgment must be final. For special knowledge and the highly trained mind produce their own limitations which, in the realm of statesmanship, are of decisive importance.

Expertise, it may be argued, sacrifices the insight of common sense to intensity of experience. It breeds an inability to accept new views from the very depth of its preoccupation with its own conclusions. It too often fails to see round its subject. It sees its results out of perspective by making them the centre of relevance to which all other results must be related. Too often, also, it lacks humility; and these breeds in its possessors a failure in proportion which makes them fail to see the obvious which is before their very noses.

It has, also, a certain caste-spirit about it, so that experts tend to neglect all evidence which does not come from those who belong to their own ranks. Above all, perhaps, and this most urgently where human problems are concerned, the expert fails to see that every judgment he makes, not purely factual to nature, brings with it a scheme of values which has no special validity about it. He tends to confuse the importance of his facts with the importance of what he proposes to do about them.”

I have no idea who Mr. or Dr. Laski was but his profound insight into the psyche of ethicists is a perfect reflection of my thoughts only articulated far more effectively.

I suppose there’s a role for ethicists to play in our society but at this point in my life (73 years worth) I don’t need a so-called ethicist to explain the difference between right and wrong to me. I’ve not studied the great philosophers to the extent they have but living as long as I have and having had a heart transplant has pretty much instilled in me a set of values that I think are pretty solid. That’s probably true about most people. We don’t need much help in making moral decisions. Do we want information? Sure. Will we accept advice? Sometimes. Do we need to have ethicists make decisions for us? Never! Unfortunately they do and It has cost thousands of lives.

Bob Aronson, a 2007 heart transplant recipient is the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of 110 blogs on donation/transplantation issues on Bob’s Newheart on WordPress.

Ethicist Needs Ethics Transplant

Bob Aronson — Mon, 26 Mar 2012 10:05:20 +0000

In an op-ed piece on MSNBC Arthur Caplan a University of Pennsylvania bioethicist suggested that Vice President Dick Cheney received a heart transplant because he was rich and influential. Caplan implied, too, that Cheney at 71 was too old for a transplant and that the heart should have gone to a younger person. I responded with this comment.

Up until today I had some respect for Dr. Caplan but upon reading his uninformed and arrogant musings on Vice President Cheney’s heart transplant and senior citizens, I not only lost all respect I find him pathetic and in need of an ethics transplant.

I am a long time Democrat, a very vocal opponent of Mr. Cheney and everything he stands for and a transplant recipient who got a heart at age 68 and I’m neither rich nor influential yet I believe the former Vice President got his heart in the same fair and balanced manner in which I got mine. In that sentence I just negated all of Caplan’s arguments.

Had Arthur Caplan taken a little bit of time to understand the donation/transplantation process he might have a different story.

As much as I dislike Dick Cheney he got his heart fairly and am convinced that his wealth and influence had nothing to do with it. The only discriminatory factor that prevailed is that you must be able to pay for a transplant whether privately or through insurance. Yes, that leaves a lot of people out of the mix but that’s another argument. He was insured just as I was. Had we matched bank accounts I would have come out on the short end but it was insurance that paid not private wealth.

The United Network for Organ (UNOS) Sharing in Richmond, Virginia (a site I’ve visited many times, has Caplan?) is a U.S. government subcontractor that coordinates all organ transplants in the United States. It has done so since its establishment under the National Organ Transplant Act (NOTA) in 1984. Its computer system tracks and continually updates the national transplant list which includes nearly 114,000 Americans. It is a very sophisticated process and it is blind. The information in the system does not contain anyone’s name or rank or social standing or wealth it has medical information and the location for each patient.

Having been on the national waiting list I think I’m familiar with the process of how you get there and it is not easy. First you must see a specialist in your disease at a transplant center where you are subjected to battery of tests to determine two things 1) are you a legitimate candidate for a transplant and 2) is it likely you’ll survive after the surgery. If the physician determines you meet those criteria he or she presents your case to a hospital’s transplant committee and, if they agree, the patient’s information is sent to UNOS for listing. Please note, you cannot get on the list unless a specialist physician certifies that you are dying, that a transplant is a last resort to save your life and that you will survive the surgery.

In the United States there are 58 Organ Procurement Organizations (OPOs) they are the federally mandated groups that work with transplant centers and UNOS to identify potential donors and then with families and hospitals to coordinate the recovery of the organ and its transportation to the site of the recipient. They have no knowledge at any time of who the recipient is.

Once it is clear that there will a donor organ the process begins to match blood type, tissue, size and other factors. The match must be as close as possible to in order to limit rejection of the organ by the host body (once transplanted rejection is further limited by powerful drugs). While the intent is to get the organ to the sickest patient, it doesn’t always work out that way because sometime the sickest patient is not a good match for the available organ.

Here’s an example. I had my transplant done at the Mayo Clinic in Jacksonville, Florida. My heart came from South Carolina. I don’t know all the details but here’s what likely happened. First the heart was offered within the immediate area served by the OPO but there were apparently no good matches. Then it was made available to outlying areas and they found me in an area that was in the jurisdiction of a different OPO altogether. I was not the sickest (wasn’t even hospitalized) and certainly at age 68 was not the youngest, and I know I was not the richest but I was a match and I got the heart. It is just as likely that the same thing could have happened for Mr. Cheney.

It is also likely that had Cheney not gotten the heart, no one would because it wasn’t a match. I doubt that someone else was deprived of an organ because Mr. Cheney got it. Also, there is the question of distance. An organ will only survive for a limited amount of time once removed from a body. It must be transplanted as soon as possible. Mr. Cheney was likely the best candidate within the range of the survivability of the organ.

And finally. It may not be important to Dr. Caplan that those of us over 65 have a chance at getting a transplant and living several more years but it is to us. How dare he imply that we seniors aren’t worth the time, money and effort to save. His arrogance and lack of compassion reflects poorly on his ethical character. How can the ethicist say that a certain segment of the population is “disposable.” Is that ethical behavior? Better unlock that ivory tower door Dr. Caplan. Let some fresh air in.

Not Enough Organs — The Salamander Solution

Bob Aronson — Sat, 17 Mar 2012 00:36:43 +0000

The organ shortage is real here at home and around the world. People aren’t becoming organ and tissue donors in the numbers that are necessary to drastically cut or eliminate the deaths caused by the lack of organs. Each year for the last several years there have been around 28,000 transplants in the U.S., that number has remained static, Unfortunately the number of people who need organs continues to grow and right now that number is approaching 114,000.

In the United States we obtain organs for transplantation via what is called the “altruistic” method or “opt in.” That means we depend on the goodness of people to become organ donors. The problem is that less than 50 percent of Americans ever get around to becoming donors and the result is that from 6000 to 7,000 people die every year because there aren’t enough organs to go around. Obviously something has got to change, soon!

There are many alternatives to altruism including mandatory organ donation, compensation or incentives or a combination of many. I have long been a supporter of “Presumed consent” (PC) which is the reverse of altruism. Under PC you are automatically considered a donor unless you “opt out.”

The problem we face with any of these proposed changes is that it would take some kind of government action to force a change and my political instincts tell me that the country just isn’t in the mood to hear the government or a bureaucracy tell them they “must” do something even if it saves lives. Furthermore there isn’t even a whiff of a scent of a move to change the system. Once in a while a state makes some changes but we need a massive federal change. If PC were introduced as a possible change and it is the most likely of all the alternatives, it would take a very long time if ever to make it the law of the land. And…even if such a change had congressional and presidential approval and endorsement I am positive that there would be an almost immediate court challenge that would delay implementation indefinitely.

Presumed consent isn’t going to happen in this country. We can keep pushing for it but I just don’t see it happening. The National Organ Transplant Act (NOTA) has been on the books since 1984 and even though the gap between organ supply and demand continues to widen there is no widely popular movement in congress or at the United Network for Organ Sharing (UNOS) to change the system. There’s been talk, but no action and it is unlikely there will be any. So where does that leave us. Actually it leaves us with a lot of hope.

Some amazing things are happening in the area of regenerative medicine that could literally knock your socks off. At the very heart of regenerative medicine are — the salamander and the newt. They belong to the same amphibian family and they have the amazing ability to regrow organs. I recently saw some time lapse photography of a salamander that had lost a leg and slowly over the period of several days it grew back (it’s in the link to the Atala video). Researchers say, “If Salamanders can do it, why not humans?” We’ll talk more about salamanders and newts later.

Anthony Atala is the director of the Wake Forest Institute for Regenerative Medicine. He says, “Every thirty seconds a patient dies of diseases that could be prevented with tissue or stem cell replacement.”

That’s an amazing claim but then he is doing some pretty amazing things at Wake Forest. The first ever lab-grown organ, a bladder, to be implanted in a human was engineered by his team. Additionally the team is developing fabrication technology that can “print” human tissue on demand. Note I said “print” — the tissue will actually come out of a printer, similar to the one you have at home or in your office. This link will take you to a video of Anthony Atala that is fascinating. http://tinyurl.com/7ctyr7v

But – as the commercial says, “Wait…there’s more.” There is so much going on in regenerative medicine that I can only touch on a few things here but enough, I hope, to get you as excited as I am about the potential for saving lives.

Stem cells are said to be the very basis of life. Unlike cells of the skin or the brain, which have narrowly defined functions, the possibilities with stem cells are endless. Given the proper setting, stem cells can develop into specialized cells so in theory they could replace those cells we lose when we age or get sick. They are known as “pluripotent.”

Five years ago in 2007, some mice with sickle cell anemia were cured by infusing them with cells created from their own skin and modified by gene-splicing techniques so that they no longer contained the sickle-cell gene. While it worked on mice it can’t be used on people because of the potential for the cells to trigger cancer but…it’s a beginning.

Last year a private U.S. company launched a cell therapy trial that could repair spinal injuries. It uses some special cells made from embryonic stem cells. Four patients have been treated but no results as of yet.

In Scotland a trial to treat stroke was launched last year, using special nerve cells. The company involved says it is evaluating the safety of the treatment which has been given to several patients in very low doses.

While all of the trials are in the earliest stages at least we are having trials in humans. You can be sure that in the next few years more trials will start and we’ll find out the true potential of stem cell therapy.

Some of the advancements in the regenerative medicine are already being used. Recently CBS News correspondent Wyatt Andrews reported on a man who re-grew a severed fingertip. According to Andrews possibilities abound for creating an organ in the lab that can be transplanted into a patient without risk of rejection. It sounds like science fiction, he says, but it’s not. You can watch the full report here. http://tinyurl.com/6wqmhay

And, finally, the story of cardiologist Mark Keating, a Harvard professor who is really into salamanders and newts and he’s spending all of his time studying them in hopes of uncovering their secret to regeneration. Even if we could only partly regenerate an organ we’d be better off. According to Dean Li, Keating’s business partner, “Patients with kidney failure need just 10 percent of their cells back and they can go off dialysis.”

But the small piece of kidney is less than the tip of the iceberg. Hydra Biosciences, Keating’s Cambridge, Massachusetts Company, is also looking at the pancreas, skin, central nervous system, veins, joints, and eyes.

You can read more about Keating and his company here http://tinyurl.com/rnqm

While there is a considerable body of work taking place in regenerative medicine, there is also progress being made with artificial organs. The exciting news here is the confluence of mechanical and biological research. The result being organs that are a little of each.

Here are some headlines about technological medical advances:

A 10,000-rpm, no-pulse artificial heart that doesn’t resemble an organic heart
A team of Japanese researchers who earlier this year engineered a mouse retina that is the most complex tissue ever engineered–have now derived a working pituitary gland from mouse stem cells.
Researchers in Cleveland have built an artificial lung that is so efficient it can breathe regular air rather than the pure oxygen required by current artificial lungs.
Impressive strides are being made toward developing an artificial pancreas, supplanting insulin injections and pinpricks for patients with diabetes

You can read the full stories and get information on other advancements as well at http://tinyurl.com/7t33pon

As you can see, there’s a lot going on.

So…back to my point. I believe that we as Americans should take the following positions.

1). we should support and promote altruistic organ donation to the fullest extent of our abilities. There is no nobler cause.

2) We should encourage decision makers, policy leaders, elected officials, everyone in a position of power to support and fund the most promising scientific and technological possibilities as an investment in our future.

One certain way to control health the health care costs that threaten to bankrupt us is to have a healthier population. Medical science and technology can lead us there if our political leaders will not only allow them to but also support their financial and other needs. .

I believe that by becoming a healthier nation, we’ll be able to put a lot of our economic problems away for good. The ramifications of what these scientists are doing in regenerative medicine go well beyond providing transplants for people who need them. What they are doing strikes at the soul of who we are as a nation and if we survive or succeed. I prefer success.

Journalistic Terrorism

Bob Aronson — Thu, 15 Mar 2012 10:25:07 +0000

I am a heart transplant recipient and a registered organ donor. Today my new heart aches for the over 113,000 people on the national transplant list and their families because an irresponsible writer just told them their lives are unimportant and that they should go home and die. I know what it’s like to be on that list. I know firsthand the terror associated with the fact that because less than half of all Americans are organ donors some patients will die waiting. In 2010 over 6,000 died and now the shortage of donor organs is even greater with the likelihood that the fatality list will go even higher. With the publication of a “don’t become an organ donor” column in the Wall Street Journal, the author and the paper have displayed a heartlessness I thought could not exist. I would rather not believe that anyone would seek financial reward at the cost of human life but that’s what author Dick Terisi and Wall Street Journal owner and publisher Rupert Murdoch have done. It is what it is – Journalistic Terrorism.

The irresponsibility of Terisi and Murdoch is going to cause a lot of people to die. The story in question claims that physicians allow and even facilitate the death of patients in order to retrieve their organs for transplantation. Not only is that charge wrong, it is reckless and life threatening. The teams of people in hospitals that care for patients, however ill, are not connected nor do they report to the very specialized transplant teams in the same organization. And – not all hospitals even have transplant capabilities. There are 5, 754 accredited hospitals in the United States but only 242 of them are transplant centers. Terisi makes it sound as though all hospitals are transplant centers with surgeons hovering over patients, scalpel in hand ready to retrieve organs. That picture is not only distorted it is the product of the overactive imagination found in most fiction writers. The problem is Terisi passes himself off as a knowledgeable reporter of actual events. Let me be very blunt. He knows better but lying about the process sells more books and that’s his bottom line.

His major point is that Physicians are cavalier in their approach to proclaiming brain death so that they can hurry the process of recovering organs for transplant. Fact: the procedure for determining death prior to recovery of organs is rigorous, thorough and as exact as medical science can make it. My previous blog on the subject “Death by Journalism” explains the process for declaring brain death in great detail. This story is a dramatic example of what I call “Junk” science. He uses anecdotal evidence and off the cuff remarks of a single physician to make his point and calls it evidence.

Some readers are going to believe this nonsense and refuse to become organ donors. Others, who are donors, may decide to reverse their decision. In either case people will die as a result because the critical shortage of organs for transplant will become even more critical. Terisi and Rupert Murdoch’s Wall Street Journal must be held accountable for this reckless endangerment of human life. This time there is a cost for having a “Free” press and the cost will likely be the deaths of a good many people…just so an author can sell some books and a publisher can sell a few more newspapers. Shame on them!

If you want the facts about organ donation/transplantation and associated issues here are some links.

* Fact sheet. Myths about organ donation (this link directly addresses the subject of care of dying patients) http://tinyurl.com/7xngpet

* 25 facts about donation/transplantation National Kidney Foundation http://tinyurl.com/8o6uq2

* How the transplant system workshttp://tinyurl.com/7rccn3u

* UNOS facts about Transplantation in the U.S. http://tinyurl.com/7bkmaft

* Transplant Recipients International Organization (TRIO) General information http://www.trioweb.org/

You can also read more about a wide variety of donation/transplantation issues on my blog Bob’s Newheart on WordPress www.bobsnewheart.wordpress.com

Bottom line. We can’t stop people like Terisi and Murdoch from publishing lies and distortions but we can mitigate their effect by speaking up and letting the truth be known that organ donation threatens no one and saves thousands of lives.

Every organ donor can either save or enhance the lives of up to 60 people. That’s a fact! Tell the story and tell it often. I’m here to write this piece because of an unselfish organ donor. I will not let his action or his character be defiled because of the greed of a writer and publisher – I hope you will join me in honoring all donors and their families by spreading the word that organ donation saves lives.

Lodge your protest at Wall Street Journal Contact:
Online: onlinejournal@wsj.com
1-800-JOURNAL (1-800-568-7625)
Outside the U.S.:1-609-514-0870
Monday – Friday: 7am to 10pm ET
Saturday: 8am to 3pm ET

Death by Journalism

Bob Aronson — Wed, 14 Mar 2012 20:38:24 +0000

On behalf of the over 1600 members of Facebook’s Organ Transplant Initiative and my Blog, Bob’s Newheart on WordPress, I am lodging a very strong objection to Dick Terisi’s inaccurate and life-endangering column in the Wall Street Journal, “What You Lose When You Sign that Donor Card.” Not only should Mr. Terisi retract his irresponsible words he should also issue an immediate public apology to everyone on the national transplant list and their families.

Recently a hack journalist, Dick Terisi, published a column in the Wall Street Journal suggesting that American physicians were killing patients in order to extract their organs for transplant. This irresponsible attack on a system that has saved thousands of lives and will save thousands more is worse than bad journalism it can only be termed what it is – death by journalism, because there will be people who will refuse to become organ donors as a result.

I am a heart transplant recipient who knows the desperation felt by being on “the list.” I can only imagine the emotional trauma Mr.Terisi caused with his reckless disregard for truth and lack of compassion for the dying and the loved ones who care for them. He has also insulted the professional and personal integrity of every medical professional in the nation, but I’ll not take up their defense. I’m sure they will rise to the occasion.

There are over 113,000 people on the aforementioned list but fewer than 30,000 transplants are done each year in the United States because of the shortage of organs. That means that thousands die while waiting. Mr. Terisi’s inaccurate portrayal of the donation system is based on “junk” science, anecdotal information and an “off the cuff” remark by a single physician. It ensures that even more people will die because some readers will believe his distortions and either not become organ and tissue donors or change their existing designation to non-donor.

I know that others in the transplant community are preparing point by point responses to Terisi’s ravings so I’ll just touch on one – brain death. He told a simple lie so here’s the simple truth.

According to the American Academy of Neurology, brain death is defined as the irreversible loss of function of the brain, including the brain stem. The most common causes of brain death in adults are traumatic brain injury and subarachnoid hemorrhage (a form of stroke) The guidelines for determining brain death were written by a team of experts lead by Eelco F. Wijdicks, M.D., Ph.D. from the Mayo Clinic in Rochester, Minnesota. Dr. Wijdicks is considered the preeminent expert on brain death in the world – and he says, “The brain death diagnosis can be made only after a comprehensive clinical evaluation that often involves more than 25 separate assessments.” These assessments must be done by highly qualified physicians.

OK…I’ve given you the simple truth now here’s a detailed explanation as printed in Critical Care Nurse which is a far cry from the simple almost cavalier approach suggested by non-physician, non-medical expert, non-donor and self proclaimed, “heartless, selfish bastard” Dick Terisi. http://ccn.aacnjournals.org/content/24/5/50.full

“Current standards for making a diagnosis of brain death require (1) identification of the suspected cause of the coma, (2) determination that the coma is irreversible, (3) performance of a clinical examination, and (4) interpretation of appropriate neurodiagnostic and laboratory tests.¹ Identification of the cause of coma is based on the patient’s history and the results of neurodiagnostic tests such as computed tomographic scans. Common causes of brain death detected on computed tomographic scans include brain masses with or without herniation and edema.¹ In determining the cause of the coma, conditions that could confound the clinical assessment must also be ruled out, such as hypothermia, hypotension, severe acid-base abnormalities, drug or alcohol intoxication, sedation, and neuromuscular blockade.

The next step in diagnosing brain death is performing a directed, clinical examination. According to the American Academy of Neurology,² each criterion of the clinical examination should be satisfied on 2 separate occasions. The length of time between examinations has not been defined and varies depending on the cause of the coma. The American Academy of Neurology² has suggested that a 6-hour interval between examinations is reasonable; others¹ have recommended a period of up to 48 hours in instances in which unknown toxins may be responsible for the coma. In addition, 2 conditions must be met before the clinical examination is conducted: the patient’s blood pressure should be greater than 90 mm Hg, and the patient’s body temperature should be greater than 32°C (90°F).

The clinical examination includes an evaluation of overall responsiveness, brain-stem reflexes, and apnea testing. The patient should be deeply comatose, with no response to painful or verbal stimuli, including decorticate or decerebrate posturing. He or she should also have no spontaneous movement, including shivering, seizures, or respiratory movement. The single exception is movement resulting from spinal reflexes. The assessment of responsiveness and movement requires that the effects of all neuromuscular blocking agents and sedatives have worn off completely.”

Mr. Terisi’s column is bad enough but the Wall Street Journal cannot be absolved of blame. Terisi would have had a far smaller audience and a minimized effect had the Wall Street Journal used sound journalistic judgment and trashed this extremely shoddy piece of journalism. WSJ ought to join Terisi in the public apology I called for earlier but I expect neither to do so because that takes “class” and integrity — commodities which neither seem to possess.

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 www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.
Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Bob Aronson

Heart Transplant recipient

Jacksonville, Florida

“RockScar Love is where “Scars R Sexy”

Bob Aronson — Tue, 21 Feb 2012 16:30:51 +0000

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

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

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

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

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

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

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

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

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.

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

Bob Aronson — Sun, 19 Feb 2012 17:26:55 +0000

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

Tobacco smoking 467,000 deaths
High blood pressure 395,000 deaths,
Overweight–obesity 237,000 deaths
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 ).

Fishermen “this occupation is characterized by strenuous work, long hours, seasonal employment, and some of the most hazardous conditions in the workforce.”
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.
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.
Farmers and ranchers
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.
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.
Sanitation workers
Truck drivers and delivery workers
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?

Post Transplant Depression — It’s Real and it’s Treatable

Bob Aronson — Sun, 29 Jan 2012 11:53:22 +0000

Early in July of 1995 I collapsed in a parking garage, got up, dragged myself to the car and drove to an emergency room. After a Battery of tests I was told I had dilated cardiomyopathy and would someday need a heart transplant. In simple terms cardiomyopathy is a weakening of the heart muscle that causes it to pump out less blood. The less it pumps out, the more it retains and the more it retains the bigger it gets. As your pumping capacity goes down the heart is forced to store more blood so it grows even more. Finally, when the pumping function is almost negligible and the heart can’t grow any more you die. It is called end-stage cardiomyopathy and it took me 12 years to get there, 12 years of continuous declining health, 12 years of knowing I was dying, 12 years of worrying about it. And…I was 12 years older, 68, and that doesn’t help when you need a heart transplant.

Does that sound depressing? Well it was but it was nowhere near as depressing as what I suffered after the transplant. “So,” you say, “Why would you be depressed after a transplant, you just got a new lease on life you should be happy.” And if you said that, you’d be right, we should be happy but a very large number of transplant patients aren’t. Some even become suicidal. It wasn’t until four years after my transplant that I was finally free of depression.

Before we discuss why transplant patients get depressed, let’s talk a about what depression is, how to identify it and how can affect your life. Clinical depression can affect every part of your life…your ability to sleep, eat, work, and get along with others can be severely affected. Depression can ruin self-esteem and turn simple tasks like getting dressed and taking a shower into major struggles. People who suffer from depression can lose interest in things that used to excite them and put a dark and gloomy cloud over everyday life. It cannot be willed away and you can’t ignore it. There’s a lot that can be done to treat depression but the first step is to admit that you have a problem and that is not always easy. Depression like other diseases has symptoms which include:

Decreased energy, fatigue
Loss of interest in things that were once enjoyed, including sex
Insomnia or sleeping too much, not wanting to get up
Loss of appetite, or overeating
Feelings of hopelessness
Pessimistic about most things
Feeling helpless and worthless

Thoughts of death or suicide, or suicide attempts

If you have any of these symptoms you should get immediate medical attention but if you are still not sure, take this on-line test as a kind of second opinion. http://www.mayoclinic.com/health/depression/MH00103_D

Back to transplant patients and depression. I can only speak for myself but I have spoken with many transplant patients who have shared in my experiences. When I awoke after transplant surgery and the anesthesia wore off I felt a euphoria that defies description. Maybe it was realizing that I had survived the surgery or maybe it was the pain killers and residual effects of the anesthesia but I had this feeling of complete and total relief. If one can really achieve serenity I had at that moment. I have not experienced anything like it since. It didn’t last very long.

Anyone who knew me prior to my surgery will tell you that I have always been very outgoing, friendly, upbeat, optimistic and full of energy. That was my natural state but heart transplant surgery and the events surrounding it changed all that. After 9 days in the hospital I was released to go home but I was very weak, had little or no energy, and felt like I was no longer of any use to anyone. I had energy, no appetite, no sense of humor, no personality … nothing. All I wanted to do was sit in my recliner in a dark corner of our family room and watch TV. Well, watch is the wrong word, the TV was on and I was aware of it but I couldn’t concentrate on anything long enough to get interested in it. That recliner became my home off and on for almost two years.

Each day as my physical health improved I went through the motions of living but without enthusiasm and always with a feeling of impending doom. I attributed some of my mood to being forced to retire from a profession I loved which meant I was no longer able to support us. For the first time since I was ten years old I didn’t have a job and felt too old and useless to get one. I did everything my doctors advised; physical therapy, watched my diet, tried to get exercise, tried to live a normal life but deep down I just didn’t give a damn. I wasn’t suicidal I was just a kind of zombie.

My wife, Robin, was running two of her own businesses at the time and made tremendous sacrifices to help me recover including trying to involve me in her business by giving me simple and easy jobs to do but I wasn’t interested. I owed her my interest and should have helped her because I was capable of doing what she wanted but I preferred feeling sorry for myself while sitting in my dark corner with the flickering images of an unwatched TV set changing the room’s shadows.

While I was being treated for depression, it seemed as though none of the medications really worked very well. Some would give me a lift for a few weeks but almost always would fail and I’d be back in my recliner. I finally got to the point where I believed I was as good as I was going to get. Enter a new therapist.

At my clinic a change in staff resulted in my being assigned a different therapist. At the time I thought nothing of it because I didn’t think there was any hope of ever really feeling good. Wrong! She tried a couple of new medications and then all of a sudden things changed. I felt like a new man, I was my old self…better than my old self, I felt reborn and began living again, doing all the things I used to enjoy but enjoying them even more. It took a little over four years after my transplant to begin living again but it was worth the wait. Incidentally, after trying several drugs and combinations of drugs the one that finally worked was an old one…Remeron.

Post-transplant depression, I understand, can be caused by many factors known and unknown. Two of the most obvious factors are 1) survivors guilt (someone had to die before I could get a transplant), 2) I’m undeserving or, “Why me?” (There are so many younger, sicker people who should have gotten my organ)

Whatever the reason for the depression the fact is that help is available it just may not be immediate. I now know that you cannot give up, you must fight every inch of the way until you get relief. It is not normal to feel down, useless, unimportant and insignificant every waking moment of every day. It just isn’t normal so don’t accept it. Find help. I’m really enjoying life again. You can, too.

Helpful links

Supporting a family member or friend http://www.mayoclinic.com/health/depression/MH00016

Post transplant depression http://surgery.about.com/od/ingandsurgery/a/TransplantCope.htm

All about Depression http://www.allaboutdepression.com/gen_01.html

Not Enough Transplantable Organs, Thousands Die…Options for Change

Bob Aronson — Thu, 19 Jan 2012 07:45:21 +0000

There will come a time when organ/tissue/blood donors are no longer needed. Advancements in mechanical devices, therapeutic cloning (duplication of organs not people) and regenerative methods will negate the need for human donation. But, that’s not going to happen any time soon and until it does we are going to have a shortage that results in thousands of unnecessary deaths.

Twenty eight years ago, The National Organ Transplant Act (NOTA) was approved. Sponsored by Democrat Representative Al Gore and Republican Senator Orin Hatch the act outlawed the sale of human organs and provided for the establishment of a volunteer (Altruistic) system of organ donation in the United States. NOTA also authorized the Department of Health and Human Services (DHHS) to make grants for the planning and establishment of Organ Procurement Organizations (OPOs); and established the formation of the Organ Procurement and Transplantation Network (OPTN).

That was 28 years ago. Since then thousands of lives have been saved by organ transplants but the number of available organs has always, from the very beginning, lagged behind the number of people who need them.

As of right now there are 112,640 waiting list candidates but so far this year there have been only 23,745 transplants done and only 11,711 donors (data from UNOS, the United Network for Organ Sharing www.unos.org ). The numbers are really all the evidence we need to show that the altruistic system is not working. Each year about 6,000 people die while waiting for a transplant. Thousands of other Americans never even get on the list because of a lack of access to specialized care or because they can’t afford a transplant.

While many find this to be an intolerable situation neither DHHS nor UNOS seem interested in making any change to the system. From time to time they will assemble “Ethics” panels to study ways to augment or change it but the answer is always the same, “Unethical.” One can easily ask, “What is ethical about letting all these people die? How can you possibly look at these numbers and say, “Presumed consent and/or some kind of compensation system for donors, is unethical?” Surely something can be designed that will provide the needed number of organs and still be an ethical practice.

I recognize that the highly skilled, educated professionals who make these “Ethical” decisions are faced with a double edged sword 1) changing the system could produce negative publicity and affect their reputations and perhaps some funding and 2) the ethics of allowing people to die. Given those conditions it still seems that allowing people to die is more unethical than making some well-considered changes that would harm no one and benefit many. And…the situation is only going to get worse because modern technology is allowing people to live longer which is adding to the list of people waiting for transplants.

Twenty eight years of letting people die. About 168,000 people are gone because the Ivory tower thinkers refuse to or are afraid to make a change. Had changes been made in the past many of the 168,000 casualties would be alive today and who knows what contributions they might have made to our society.

As I noted in the first paragraph, in the long term we probably won’t need to have a donor system but it will be many years before any of those means become commonly practical. So we’re stuck with the old question, “What do we do to narrow or eliminate the gap between available organs and those who need them?”

My research indicates that while there are not a plentitude of options to consider there are some and they include:

1. Mandatory donation (anyone who dies is automatically a donor, no exceptions)
2. The LifeSharers approach, (you can only receive an organ if you are a donor)
3. Presumed consent (You are automatically a donor unless you opt out)
4. Some sort of compensation plan for donors and/or their families.
5. A combination of presumed consent and a payment system

Let us tackle mandatory donation first. On its surface it sounds harsh and like a product out of an HG wells book. It is harsh and probably unacceptable because of its dictatorial overtones. Americans don’t seem to like anything that is mandatory whether it is good for them or not, so mandatory donation is unlikely to receive enthusiastic support.

Aaron Spital, and James Stacey Taylor (Department of Medicine, Mount Sinai School of Medicine, New York, New York; and Department of Philosophy, College of New Jersey, Ewing, New Jersey) have written a persuasive paper on the subject of mandatory organ donation. http://tinyurl.com/6wavm4b. Their proposal is simple:

”We propose that the requirement for consent for cadaveric organ recovery be eliminated and that whenever a person dies with transplantable organs, these be recovered routinely. Consent for such recovery should be neither required nor sought.”

The two researchers go on to say,

“We believe that the major problem with our present cadaveric organ procurement system is its absolute requirement for consent. As such, the system’s success depends on altruism and voluntarism. Unfortunately, this approach has proved to be inefficient. Despite tremendous efforts to increase public commitment to posthumous organ donation, exemplified most recently by the US Department of Health and Human Services sponsored Organ Donation Breakthrough Collaborative many families who are asked for permission to recover organs from a recently deceased relative still say no. The result is a tragic syllogism: nonconsent leads to nonprocurement of potentially life-saving organs, and nonprocurement limits the number of people who could have been saved through transplantation; therefore, nonconsent results in loss of life.”

While it is difficult to disagree from a purely logical standpoint, emotions run high on issues like this and it is unlikely to get approval from the American Public.

The second option listed is the approach where registered donors would be offered organs first, regardless of how ill other patients on the list might be. In the U.S. there is one organization, LifeSharers, that has promoted that idea for several years and while they have nearly 15,000 members (http://lifesharers.org/) they have had virtually no impact. In order for the concept to work, they would have to sign up just about every single American…that’s not likely to happen and as far as we know, no LifeSharers member has yet been a donor to another LifeSharers member. To be fair, however, the nation of Israel has adopted a form of the LifeSharers program but it’s still too early to make any assessments on its success or acceptance.

Most people who object to the “Donors” first concept say it is because it deviates from the practice of offering organs (provided there is a match) to the sickest patient first. Their program would offer organs to members first and then if there was no match, the organ could go to the sickest person. Many people object because despite our great national communication system, there are still millions of people who don’t understand the donation/transplantation process, haven’t heard about it, didn’t know you could register to be a donor or, because of a multitude of myths, think they can’t be donors. Despite the honorable efforts by LifeSharers founder Dave Undis, the concept is not being seriously considered by the U.S. transplant community. Additionally LifeSharers growth has been slow indicating limited acceptance by the public. You can learn more about LifeSharers at http://www.lifesharers.org/

The third option is presumed consent and if any option is ever approved in the United States or even some of the states, this will likely be the one. Currently under our altruistic program people “opt in” by signing a donor card and having “Donor’ placed on their driver’s license or other official state ID card. Presumed consent is the opposite. It assumes that everybody wants to be a donor and so you would “Opt out” if you don’t want to be a donor and likely would carry a card that says “Not a donor.” You can learn more about presumed consent at http://tinyurl.com/7mcjoez.

In countries where presumed consent is in effect, (Austria, Spain, Portugal, Italy, Belgium, Bulgaria, France, Luxembourg, Norway, Denmark, Finland, Sweden, Switzerland, Latvia, Czech Republic, Slovak Republic, Hungary, Slovenia, Poland, Greece, and Singapore) the opt out rate has been around 2% which means that 98% of the eligible population would be organ donors as opposed to under 50% in the United States where we have the opt In program. That’s a big difference. The great leveler, however, may be that the countries with opt out as their system still ask family members, at the time of the donors death, for their approval. If they refuse the organ is not recovered.

The most politically sensitive of all the issues is the outright sale of organs. At this point I know of no serious effort in the U.S. that would change our laws to allow a person to sell his/her organs on the open market. It is not realistic to think that any U.S. regulatory or government agency would even consider the idea. Strangely, In Iran of all places, it is legal to sell organs and a healthy kidney retails for about $6,000.

Iran legalized living non-related donation (LNRD) of kidneys in 1988. The Iranian government regulates and funds the donation/transplantation process and compensates donors for their organs. A third-party group arranges contact between donors and recipients (much like U.S. Organ Procurement Organizations (OPOs). In addition to payment from the government, donors receive free health insurance. The transplant recipient benefits from highly subsidized immunosuppression support. Iranian law also provides for charitable organizations to pay the cost of transplants for people who can’t afford them. Here’s an interesting twist, though. It is illegal for the medical teams or any ‘middleman’ like our OPOs to receive payment. Within a year of being implemented the number of transplants in Iran almost doubled.

They system seems to be working in Iran and it certainly could work here…it isn’t as though we aren’t selling things similar to organs. Currently in the United States it is legal to sell yourself to become a surrogate mother and everyday people are paid for sperm, eggs and hair so why not organs. The Iran concept is certainly an option but polls continually indicate it is not a very popular one.

There are some variations on the “Payment” theme that might be attractive to the American people. We could consider a system that “compensates” rather than pays donors or their families. For example, a living kidney donor does not have to pay for the surgery to remove the donated kidney nor does that person have to pay for any of the medical care surrounding the operation those costs are absorbed by the recipients insurance coverage. The donor’s, though, often accrue other expenses like travel to the city in which the recipient lives, lodging, food and time away from work, which could be significant especially if there are any surgical complications. A very good case could be made for compensation for these expenses.

There are other considerations as well. Dr. Sally Satel a Psychiatrist and a kidney transplant recipient who is also a resident scholar at the American Enterprise Institute has written and spoken extensively on the subject of compensation, “The solution to this lethal paternalism, as I and others have argued, is not to create a direct exchange of cash for kidneys, but for Congress to let donors accept a carefully devised and regulated government benefit — perhaps a tax credit, a contribution to a retirement plan or early access to Medicare.”

It would not be a huge stretch to extend Dr. Satel’s ideas to families of deceased donors while also covering funeral expenses even providing some help with college tuition for their children, subsidized prescriptions or even subsidized health care insurance. You can read more on Dr. Satel’s thoughts by going to http://tinyurl.com/yabluu3 .

The final option that could be considered is a combination of presumed consent and a form of compensation that follows the lines described by Dr.Satel.

The point of this blog is to just get people thinking. The present system isn’t doing the job and never will despite heroic efforts at increasing organ donation, there just aren’t enough donors. That we must change if we are to stop the dying, is a given. Determining what that change should be is what is so incredibly difficult.

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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, you should contact your elected representative or U.S. Senator and let them know your feelings. Change has to begin somewhere, why not with you?

Please view our two brand 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.

Help Your Caregiver — Get Your Own Glass of Water

Bob Aronson — Sun, 15 Jan 2012 09:57:57 +0000

When you are very ill or recovering from a serious illness or surgery our caregivers (spouses, partners, friends, relatives) have a most difficult task. Being a caregiver can be physically and emotionally draining and strange as it may seem the patient may sometimes have to offer care to the caregiver. Care in the form of consideration and gratitude. Remember the expression, “When mamma’s happy, everybody’s happy?” Same goes for caregivers.

As a heart transplant patient with a wife who would do anything for me and did, I can now reflect on my recovery period and easily see the number of mistakes I made as she tried so hard to meet my every need, and take care of the house while running two businesses. To this day I have no idea how she did it and I will be forever grateful. My ruminations on the subject led me to write the following advice to others who may be in the same situation now or who could be in the future.

Make it easy on your caregiver if you want to do what’s best for you.

Do as much for yourself as you possibly can. If your physician says you can get up and walk around do it as often as possible. Get your own glass of water.
Learn your meds. Know what they look like, what they do, how often you take them and when they must be refilled and do all of it yourself. Plan ahead for refills and find a pharmacy that will deliver to you on short notice so no one has to go running after prescriptions at the last minute. You can do it sitting and you don’t need a caregiver to do it for you.
Know your condition. When you talk with your doctor or coordinator take notes. It is your job to know about your health you cannot and should not depend on someone else to “remember what the doctor said.”
Make your own meals but be sure they are nutritious. You either just got a new organ or you are about to get one. Don’t cause further problems by eating and drinking the wrong things.
Only ask your caregiver for things you absolutely can’t do for yourself. If you can’t drive, you may need a ride or the caregiver may have to run errands for you. If you are on medication that causes some mental confusion or fatigue your caregiver should be involved such as in dealing with legal papers, insurance etc. But you should take over these responsibilities as soon as you possibly can.
If you have children, especially young ones, you may not be able to get involved in strenuous activities. The Children need to know this and your caregiver may have to take on some of this responsibility…for awhile.
Before making any request of your caregiver ask yourself this question, “Am I taking advantage of my caregiver by asking — is this something I can do myself?”
Show gratitude and consideration. Taking care of another person can be emotionally and physically exhausting. Tell that person how grateful you are and ask what you can do to make it easier on them. Every once in a while, get a glass of water for the caregiver.

Free, Professional Coaching if You’ll Give Talks On Organ Donation.

Bob Aronson — Sat, 07 Jan 2012 18:24:54 +0000

If you are a member of Organ Transplant Initiative (OTI) on Facebook or if you become one at any time (it’s ok to belong to any number of other similar groups at the same time) we invite you to take advantage of this exclusive offer. It is a challenge to get people to work harder on increasing organ donation. Too many people are dying while waiting.

If you will arrange for a two speaking dates to an audience of your choice on the subject of organ/donation transplantation, I will provide you with a factual, hard hitting, convincing PowerPoint presentation (one you can edit to fit your own style) visuals included at no charge. I will also offer you professional advice on getting and keeping the attention of an audience, motivating them to do what you want them to do, how to use your voice properly, how to breathe, body language and so much more. but, the coaching offer only stands if you use our presentation (we will very carefully research each fact offered). As a stand-alone the coaching will apply to many other areas of your life and it’s up to you how you use it.

All you have to do is volunteer to make two presentations during 2012 about donation/transplantation to the audience of your choice; family, service club, dinner group, church group, as the featured speaker at a banquet or anywhere else. You will be responsible for seeking out and securing those speaking dates. I can’t promise that I can give you perfection, but in a few short minutes or hours I can help you become a more confident, powerful and convincing speaker. All you have to do is send me a personal email at bob@baronson.org and say, “I’ll do it” and we can work toward arranging the proper communication vehicle to help refine your skills. If you just want the presentation and no help from me…that’s fine too. You may use the presentation I write without permission as long as you give attribution to the Organ Transplant Initiative for having provided you with some assistance. You do not need to mention my name.

I know public speaking can scare the bejeebers out of people but for many there is good sound advice that can help you through that. One thing for sure the advice you get will help you in many ways that go well beyond talking about organ donation. The skills you learn will be applicable in job interviews, courtroom and/or regulatory agency testimony, media interviews, sales presentations, regular conversation, and even giving a talk to co-workers about any subject (sometimes it even works with teenagers and spouses).

I spent all of my working life in communications including owning a firm with clients around the globe many of them in the Fortune 50 of top corporations. I don’t know why the good lord gave me this modicum of talent but I think he’d like me to share it to help save some lives, hence this offer.

I am already working on developing a slide show and hope to finish it within a month or two. Once done I will share it with you and we can begin the process. I’m hoping that eventually this will turn into a sort of national OTI speakers bureau with resources in every state and a message that is powerful, consistent and heartfelt.

I hope many of you will find it in your hearts to commit to this. With under 50% of Americans signed up to be organ donors there is ample opportunity to make a difference. Please become part of it and I promise I will do everything I can to make you successful because if that happens, we are going to save a lot of lives.

Too Few Organ Donors — Inadvertent Terrorism

Bob Aronson — Mon, 02 Jan 2012 14:21:43 +0000

Each day 19 people die because there are not enough transplantable human organs to fill the need. The United Network for Organ Sharing (UNOS) which coordinates all transplants in America maintains a list of people who need life-saving transplants. As of today, January 2, 2012 the numbers are:

Waiting list candidates 112,702

Transplants January – Sept. 2011 21,354

Donors January – Sept. 2011 10,558

Right now, as you read this a patient, maybe a child, is near death. She needs a heart but there won’t be one. As the electronic monitors beep and chirp, the family is devastated, inconsolable in the frustration over the lack of organ donors and the imminent death of their loved one. The best medical care in the world is at their fingertips but they are helpless without an organ donor. The patients vital signs are dropping more rapidly now, the Doctors aren’t holding out much hope.

Right now as you read this, another patient not too far away has already been declared brain dead as the result of an auto accident. He is surrounded by a grieving family. It is not known if the patient is or wanted to be an organ donor. The family is considering a request to donate his organs but the decision must be made soon and they don’t know what to do, their loved one never told them of his wishes. Through tears and indescribable grief they discuss, they argue and then decline. Both patients die.

Each year Americans bury or cremate more than 20,000 transplantable organs – 20.000. Surveys continually indicate that over 90 percent of Americans approve of organ donation but in one of the greatest mysteries ever, only 46 percent actually make the commitment to do so. This inaction, this procrastination is causing people to die, families to grieve and patients who are awaiting transplants to live their lives in absolute terror. People who are not organ donors are not evil, they are not bad, they just don’t understand that their lack of action causes terror among patients as great as that caused by the real terrorists of the world.

Most people who aren’t donors, “Just haven’t gotten around to it.” After all, there’s no rush for them. Organs are recovered after a person dies and most potential donors are in pretty good health. The problem is that the patients who need the organs are not in good health. Everyone who is on that UNOS list mentioned earlier, is dying. Without a transplant they will die. Period. End of story.

Well, let’s make the donation process really simple, so simple you can do it from home, your office, on your I-pad or Kindle in your doctor’s waiting room anywhere. You don’t even have to get up. Just go to www.donatelife.net and follow the instructions then tell your family what you have done. It only takes minutes. Then make very sure they clearly understand that you want to be an organ donor. “That means when I die I want the medical people to take as much of my tissue and as many of my organs as they need to help save or enhance the lives of others.” Those are my distinct wishes please respect them should the time come.

That’s the first step to saving lives by helping to increase the number of donors. The second step, just in case you like this cause and want to do more, is to spread the word to convince others to do the same. “So,” you say, “How do I do that, how do I spread the word?” Here are ten easy tips, I’m sure that if you think real hard you might be able to come up with ten more.

150 words is about a minute’s speaking time. Write out about 150 words on why organ donation is important to the donor…the donor and then post it everywhere you can think of on the internet.
Call your local Organ Procurement Organization (OPO) and volunteer to speak on behalf of donation.
Buy the green “Donate life” wristband at www.donatelife.net and wear it every day. If someone admires it give it to them and ask them to wear it. What’s a few bucks to save some lives?
Ask your pastor to give a sermon on organ donation…offer to help gather the information for him/her.
Write a letter to the editor…actually send it to every editor you can think of.
When some radio talk show host least expects it…call about the importance of organ donation
Offer to speak to a local service club about donation/transplantation issues (Kiwanis, Rotary, Lions etc).
Add a short note about organ donation to the signature of every email you send “Did you know that one organ/tissue donor can save or positively affect up to 60 lives?”
Talk to a public school class about donation/transplantation
Start a blog…it’s really easy. Just Google “free blog sites” and go for it.

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.” Just go to www.organti.org and click on the title. This video was produced to py romote organ donation so it is free and no permission is needed for it’s use. You’ll also find other useful information on this web site about other donation/transplantation issues.

We would love to have you join our Facebook group, Organ Transplant Initiative (OTI) The more members we get the greater our clout with decision makers and the more clout we have the more likely it is that we’ll be able to increase not only organ donation but the many alternatives that science and technology people are working on.

Donation to Transplantation — How it Works

Bob Aronson — Thu, 04 Aug 2011 11:38:58 +0000

It is only fitting that on the eve of the fourth anniversary of my heart transplant that blog 100 on this site addresses the donation/transplantation process. My undying thanks to my donor, his family and my caregiver wife for giving me these extra years. Bob Aronson

Joel Newman is the Assistant Director of Communications for the United Network for Organ Sharing (UNOS). UNOS coordinates all organ transplants in the United states and is located in Richmond, Virginia. In response to my request for a guest blog on how the donation/transplantation system works, Joel wrote the following. Our sincere thanks to him and all the dedicated people at UNOS for their life saving work and for allowing us to use them as a resource.

How It Works

By Joel Newman, UNOS

Since the first successful organ transplant in 1954, more than 500,000 transplants have been performed in the United States. About 250,000 transplant recipients are alive today, and most enjoy a greatly enhanced quality of life as a result of this life-giving therapy.

Under federal contract, UNOS (United Network for Organ Sharing) maintains an extensive national transplant network to assist medical professionals in the recovery and allocation of donated organs. This network is called the Organ Procurement and Transplantation Network (OPTN).

This is a brief overview of the processes involved in listing transplant candidates, organ donation and organ allocation. We at UNOS are glad to address more specific questions.

Transplant Evaluation and Listing

To be considered for a transplant, a person approaching end-stage organ failure must be evaluated at one of roughly 250 transplant hospitals nationwide. A transplant program’s medical team will address issues such as:

Will a transplant effectively treat his or her disease?
Does this person have other medical conditions that would complicate his or her care?
Can this person participate in his or her own care by taking medications on time, following medical advice, keeping appointments, etc.? Does he or she have family or caregiver support to assist if needed?
Does this person qualify for insurance for transplant costs? If not, can he or she raise funds to defray expenses?

The transplant team makes individual decisions according to its medical judgment. If the program agrees to accept the person as a transplant candidate, it will submit a set of basic data to the OPTN. The OPTN maintains a highly secure, continuously operated computer database to compare medical and logistical information about transplant candidates at hospitals with that of available organs from deceased donors.

An issue sometimes raised is whether a person’s past history of substance abuse, non-compliance with medical care or other self-destructive behavior may count against the possibility of listing. While this remains a medical judgment of the transplant team, their emphasis is not on past behavior but current and likely future status. If the team is reasonably assured that the person has ended harmful behavior and is not likely to resume that behavior once transplanted, they would be more likely to list the person as a transplant candidate. UNOS is not involved in any program’s decision to list a transplant candidate or remove a candidate once listed.

Organ Donation and Recovery

Organ transplantation depends entirely upon the generosity of one human being to help others through the gift of organ donation. While this gift may involve a living donor, we will focus here on donation from those who have recently died in a hospital and who meet criteria for donation.

An organ procurement organization (often called an OPO) is responsible for several key functions in the donation process, including:

identifying potential donors
documenting donation consent

collecting key medical history and lab test results to assess organ function and risk of any diseases that might be transmitted to recipients
entering donor information and organs available for matching into the OPTN database
assuming a transplant center accepts the organ offer, arranging for logistics of organ recovery, preservation and transportation

Most deceased organ donors in the U.S. encounter brain death (a complete and irreversible loss of brain function, determined by physicians not involved in the donation process). For such potential donors, respiration and circulation can be maintained artificially for some time (commonly 24 to 48 hours) after brain death has been pronounced.

In other instances, donation may be possible for some people who die in a hospital setting from cardiorespiratory failure. The person’s treating medical team (in no way involved with organ donation) must conclude that he or she cannot survive but will die of cardiac failure instead of brain death. The next of kin must agree that death is imminent and that they will agree to end supportive care. Only then, if the individual meets other criteria for donation, would donation be considered.

Surgeons with specific training and experience remove the organs to be transplanted. Each organ is packaged in sterile conditions and carefully labeled with a unique identification number to be matched with the recipient when it arrives at the transplant hospital. The organ cannot be frozen, as this would cause permanent damage to the blood vessels supplying it. It is preserved in a series of sterile containers that are then surrounded by a solution of wet ice.

Transportation arrangements for deceased donor organs will differ according to the type of organ, the circumstances of the donation, and the distance between donor and recipient hospital. If they are to be used within a local area, ground transportation (ambulance or chartered vehicle) may be used. Hearts, lungs and livers, commonly used within a few hundred miles of the donor location, often travel by charter air flight along with a team from the receiving transplant center. Kidneys have the longest preservation time (commonly up to 36 hours from recovery). If they are being transported over long distances, they may travel on commercial flights and be delivered to and from the airport by a courier service.

Organ Allocation

Federal law and regulation charge the OPTN to maintain an allocation system that promotes equity and efficiency, minimizes wastage of transplantable organs, and allows individual medical judgment in evaluating and accepting organ offers.

Candidates do not have a designated “ranking” on a waiting list until the OPO enters data for a given organ offer. The characteristics of each offer may be different in terms of donor size, blood type and location, thus the rank-order of potential recipients will be unique to each offer.

The OPTN computer system generates a “match run” list. This displays which potential recipient is to be offered each organ in sequence. Using the match run results, a specialist at either the OPO or UNOS notifies the medical teams for the highest-ranked candidates and provides additional detail to help the team evaluate the organ offer. This initial notification is usually sent electronically via computer or text message, but the transplant program may request additional information by phone.

Once the transplant team for the highest-ranked patient is notified, they have one hour to review detailed information about the donor and the organ and either accept or refuse the offer. If the organ is accepted, arrangements are made for recovery and transportation. If the transplant program declines the offer, it will note a refusal reason back to UNOS. The offer process will continue either until the organ is accepted or until no one can accept it in time to arrange a successful transplant.

The OPTN matching system is programmed to reflect many factors. These include medical data known to affect the likelihood of a successful transplant and ethical principles to promote fairness and public trust in the transplant system. Public trust is especially vital, for if people perceive that the system is unfair they may choose not to support it through organ donation.

In general, OPTN organ allocation policies seek to balance two overarching principles. One is equity – ensuring that each candidate has an equivalent opportunity to be considered for organ offers according to his or her specific need. The other is medical utility – ensuring that the system is able to transplant as many people as possible and with the best possible survival.

In theory, the candidate who is first on the match run list for a given organ should be both in great need of the transplant and have a reasonable chance for long-term survival and quality of life afterward. The specific policies used to generate the computerized match run are weighted statistically to maintain a balance of equity and utility.

While the specific weight of each factor varies according to each organ type, common factors considered in the match run include:

how well the donor and potential recipients match in terms of blood type, body size and immune system compatibility
(for heart, lung, liver and intestinal organs) the candidate’s medical urgency, with sicker patients getting highest priority
the relative distance between donor and recipient (local recipients are considered before more distant patients, to minimize time the organ must be preserved and provide the best chance for a successful transplant)
if all other factors are equal, priority is given to patients younger than age 18 if the donor is younger than 35 (for kidneys) or 18 (for all other organs)

The matching system does not consider social factors that do not affect medical need or prognosis, such as a person’s wealth, celebrity status or cause of his/her organ failure.

All donation and transplantation professionals work to save and enhance as many lives as possible through the selfless gift of organ donation. We share in the hope that in the future, no one will suffer or die needlessly because an organ was not available in time.

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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 lovePlease 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.

An Expert Explains Addiction as a Disease

Bob Aronson — Fri, 29 Jul 2011 23:38:28 +0000

While most experts and most medical associations recognize alcohol and drug addiction as a disease many of our readers disagree. This blog and our Facebook group Organ Transplant Initiative (OTI) are focused on helping those who need organ and tissue transplants get them. That’s our purpose and our mission but many of those who don’t believe in the disease concept of chemical dependency hold strong opinions that if a person is dying of liver, kidney, heart or other organ failures and if that person has a history of alcoholism or chemical dependency they should not be eligible for an organ transplant. The argument is, “They chose to become an addict and they should suffer the consequences.” This topic has received more discussion than any other that we have introduced in the nearly four years Bob’s Newheart has been publishing blogs. We hope this guest blog will help dissenters have a better understanding and perhaps more compassion for those suffering from the disease of addiction.

Prior to my retirement to get a heart transplant in 2007 I was a private communications consultant specializing in health care issues. One of the great rewards in my 25 plus years career was getting to meet and interact with some of the leading medical professionals in the world. One such person, who I am proud to call a friend, is Dr. Marvin Seppala, Chief Medical Officer for the Hazelden foundation in Center City, Minnesota. Hazelden is one of the leading and largest non-profit addiction treatment centers in the world with several U.S. Locations. Dr. Marv is not only a highly respected physician he is also a psychiatrist who specializes in helping those who suffer from addictions. You can read more about him and about Hazelden at http://www.hazelden.org/

The following blog was written by Dr. Seppala for the CNN Health website and he has graciously given his permission for us to reprint it here. Your thoughts and comments are encouraged and welcome.

Bob Aronson

(Bob is the bob of bob’s Newheart and has been in recovery from alcoholism since 1982. He received a heart transplant in August of 2007)

ADDICTION — THE DISEASE THAT LIES

I learned of four addiction-related deaths this weekend. Three were people I knew in Portland, Oregon, recovery circles and the fourth was Amy Winehouse.

Tragically one must get used to such news if you spend a lot of time with those who have this disease. Whenever someone with addiction dies, I grieve the lost potential and wonder about the limitations of our ability to address this cunning, baffling and powerful disease.

I am also humbled by my own experience with addiction and recovery, and grateful for the help I received.

It seems nearly impossible to believe that people with addiction would continue to use drugs and alcohol to the point of death, but that is what people with addiction do: They deny both the consequences and the risks of using. As we continue to learn about addiction, we’re understanding more about why addicted people behave the way they do. But that’s little solace for friends and family.

Addiction is a brain disease, and our knowledge of it has expanded significantly, which has informed our treatment programs and altered our perceptions. We know that addiction resides in the limbic system, a subconscious part of our brain that is involved with memory, emotion and reward.

We refer to this area of the brain as the reward center, as it ensures that all rewarding or reinforcing activities, especially those associated with our survival, are prioritized. The reward center makes sure we survive by eating, drinking fluids, having sex (for survival of the species) and maintaining human interactions.

In late stages of addiction we can see how reward-related drives, especially those for survival, are reprioritized when people risk their families, their jobs, even their lives to continue to use drugs and alcohol. The continued use of the drug becomes the most important drive, at a subconscious level and unrecognized by the individual, undermining even life itself.

When a methamphetamine-addicted mother makes the nightly news after neglecting her children for four days while on a meth run, we can’t comprehend how anyone could do such a thing and tend to think she does not love her children. She may have been going out for groceries with the intent to return home and feed her children, but ran into a dealer and started using.

Addiction took over, and she was driven by subconscious forces even though she loves her children as much as I love mine. Her love and her natural instincts to care for and nurture her children were overridden by her own brain, the reward system reprogrammed to seek and use drugs at all costs. Unbeknownst to her, drug use has become the most important thing in her life.

When we witness the incomprehensible behaviors associated with addiction we need to remember these people have a disease, one that alters their brain and their behaviors. We tend to believe we all have free will, so it is difficult to understand how the addicts’ perception has been so altered as to drive them to destruction.

We also assume they can make their own decisions, especially when it comes to help for their addiction. In so doing we are expecting the person with a diseased brain to accept the unacceptable, that the continued use of drugs is not providing relief from the problem – it is the problem, and they need to stop that which has become paramount.

They are unable to make such decisions because their brains have been altered to prioritize use of the drugs, even above survival itself.

Relief of psychic pain, the real, unimaginable pain of addiction, is part of the problem. People have many reasons for seeking relief from pain; some pain precedes the addiction, but most pain is the result of the addiction.

The addicted neglect their primary relationships and they may lie, cheat and steal to continue drug use. And they know this at some level, they recognize their uncontrolled behaviors, but they can’t change, they can’t stop.

Hopelessness becomes a way of life. Self-loathing, shame and guilt become the norm as the consequences of continued drug use accumulate.

They use drugs to ease the pain, but the very remedy exacerbates the problem. The answer to their dilemma goes unrecognized due to the neurobiological changes that have occurred in their brains.

The good news is that treatment is effective and specifically designed to help people recognize the problem within. Most people are coerced into treatment for one reason or another; they may be facing legal issues, job loss or divorce.

With good treatment their likelihood for recovery and abstinence is just as good as the minority who seek treatment of their own accord. Unfortunately, less than 10% of those with addiction recognize they have it and seek treatment.

This is the primary reason people don’t seek help. Our largest public health problem goes unrecognized by those with the disease.

Every one of these deaths is tragic. They died of a disease that lies to them. Amy Winehouse had incredible musical talent that enthralled the masses, but she became known as much for her struggle with addiction.

We can safely watch such a tragedy, gawking as we drive by the destruction, insulated from the suffering and unable to help. But addiction is all around us and we need to respond to the rising death toll.

All of us are responsible for learning the truth about addiction, raising awareness and intervening for those who have this disease, knowing they are unlikely to be able to do so for themselves. Dr. Marvin Seppala.

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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.

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

Bob Aronson — Fri, 22 Jul 2011 21:32:28 +0000

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.

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.