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« on: April 22, 2009, 10:42:46 AM »

Dallas hospitals uneasy about organ donations arranged online

11:51 PM CDT on Sunday, April 19, 2009

By SCOTT FARWELL / The Dallas Morning News
sfarwell@dallasnews.com

Annette Baker's friends think she's crazy – and some in the medical community wonder whether they are right.

In January, the 43-year-old Garland business owner donated her left kidney to a woman she had never met: Sapna Lall, a 38-year-old mother from Frisco.

The women met on a Web site, matchingdonors.com, which, for $600, posts personal ads from people in need of organ transplants. From there, prospective donors search the site for a connection that begins with a matching blood type – and is augured by a picture or a poignant story.

Baker said she was drawn to Lall because they both live in North Texas, and they each have one child, a daughter.

"I just think that if more people would try to help each other – even with small things – the world would be a better place," said Baker, a woman who compulsively rescues stray dogs (she has six at the moment), and digs in her purse nearly every time she's confronted with an outstretched hand.

"I've always been that type of person," she said. "True happiness is just doing the right thing. It's really no more complicated than that."

But in Dallas, altruistic organ donation is not only complicated, it's controversial.

Last fall, both Baylor and UT Southwestern Medical Center turned Lall and Baker away from their transplant wings. So in January, the women, who live about 30 miles apart, traveled 1,100 miles to the University of Toledo Medical Center for the successful transplant.

Why?

Hospitals in Dallas will not accept organ donations from people who aren't friends or relatives. They fear under-the-table payments – it is a federal offense to buy or sell organs in the United States – and the growth of an Internet-induced organ exchange industry preying on the sick and poor.

Motives questioned

Dr. Goran B. Klintmalm, chief of the Baylor Regional Transplant Institute in Dallas, questioned the motives of good Samaritan organ donors like Baker.

"The preservation of body from injury is probably the strongest basic instinct we have as man," he said. "To violate that, you really have to ask yourself. Is this something people do because they want to do a good deed? And I think you have to ask the question, 'How reasonable is that?' "

Klintmalm, the immediate past president of the American Society of Transplant Surgeons, said the brokering of organs by Web sites such as matchingdonors.com may exploit the desperate and needy.

"It's felt quite strongly by a number of transplant surgeons around the country that organ donation is a gift of life," he said. "We don't want to sully that gift by making it into a commodity."

He said India, Thailand and Turkey – where the wealthy purchase organs from the poor – should be an abject lesson to hospitals and surgeons in the U.S.

Ten years ago, most transplant centers in the country agreed with Klintmalm and Baylor. But today, more and more hospitals – including Johns Hopkins in Maryland, Massachusetts General Hospital and others – accept organs from unrelated altruistic donors.

Ten years from now, it may be common practice.

"We hope there will be enough donors to meet the need," said Joel Newman, assistant director of communications for the United Network of Organ Sharing, the arbiter for nearly all donations in the country. "But if there's still a need for living donor transplants, I suspect the field will be more comfortable with it."

New policy

As a matter of fact, UT Southwestern is working on a new policy that would make it possible for people to donate organs to strangers. The new protocol would also be applied at Children's Medical Center Dallas.

Methodist Dallas Medical Center does not accept unrelated donors and Medical City Hospital did not respond to questions.

"We think this is a very viable method for increasing donations in this country," said Dr. Meelie DebRoy, surgical director of kidney-pancreas transplants at UT Southwestern. "There is a population that is truly altruistic and at some point we have to stop interfering with people's autonomy and allow them to do what they want to do."

More than 84,000 people are on the kidney transplant list in the United States, and about 15 people a day die while waiting. The typical wait is three to five years.

Most organs are harvested from cadavers, although living donations from family members and longtime friends have been common for years. But it wasn't until widespread adoption of the Internet that kidney patients began pushing for relaxed rules on who could donate.

Why, they argue, could someone at church donate to a friend in the congregation, but friends who met online couldn't? And how long do you have to know someone to be considered a close friend? Ten years? Two weeks?

DebRoy said the fluid meaning of the word friend was one of the reasons decision-makers decided to recalibrate UT Southwestern's policy.

The new screening, she said, will include an additional layer of social-psychological evaluation. Doctors worry some donors may undergo the surgery as a way to atone for past mistakes, or with the hope that a selfless act will make them a better person.

"In the altruistic setting, this is even more important because in a very real sense, the donor has no disease process to bring them to the operating room," she said. "And the donor needs to understand, this is not a procedure without risks."

UT Southwestern's about-face on the issue prompted a terse response from Baylor's top transplant surgeon, Klintmalm.

"I don't care what Southwestern does," he said. "I am the senior transplant surgeon in this market. I speak for myself and my program and I stand for integrity and the safety of donors. That's what I stand for, and that's what we do."

Web site criticized

Paul Dooley, chief executive officer of matchingdonors.com, said he understands Klintmalm's thinking, but he doesn't agree with it. People should be able to donate to anybody or any organization they'd like.

If you went to Stanford, and you want to write a check to your alma mater, he says, the government shouldn't be able to force you to donate to the United Way.

"Our experience is that people are more likely to be coerced by their brother or mother than they are by a stranger," he said. "And the probability that a stranger is going to shake you down is less likely than someone you know shaking you down for money."

He said the $600 registration fee is waived for people who cannot afford it.

Even so, many physicians – even the Ohio doctor who performed the transplant on Lall – said the model advanced by matchingdonors.com is flawed.

Dr. Michael Rees said the "beauty pageant" method, which allows people to post pictures of themselves and write profiles, sews seeds of inequity. Even so, he said, he decided to go forward with the surgeries because the women came to him and proved to be a good match. He said it was not his place to intervene.

"We think the system should be fair for everyone, said Rees, "not the prettiest or those with the most clever words."

Baker, the organ donor from Garland, said she still feels there is not a place for her in the current organ donation system. And she understands the criticism of matchingdonors.com.

"It is wrong in some ways because rich people are the ones getting their kidneys," she said.

"But if you're like me and you want to help somebody, how else do you do it – especially in Dallas?"


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Comments (37)

Posted by getakidneytransplant | 1 day ago

There are actually tens of thousands of offers of living donor kidneys every year from friends and family of people dying on dialysis which are turned down Dialysis involves the worst conflict of interest in American Medicine. The kidney specialist, nephrologist, who is in charge of the care of the patient in kidney failure is allowed to profit from dialysis by owning, owning stock or working at huge salaries for the dialysis corporations. His/her job is to keep those chairs filled and not refer people to transplant--that would leave and empty chair and lost profit. In fact all but 6,000 living donors a year are rejected, though they are desperate to save a loved ones life, because they are told they are not the right blood type or a good tissue match. In fact for over five years, these have not been barriers at Cedars-Sinai in Los Angeles. They have a protocol that eliminates the antibody problem and allows these transplants to go forward. Most transplant centers own dialysis clinics and make huge profits charging insurance companies for dialysis and "processing" people for transplant but never transplanting them. That is the reason only Stanford and the University of Toronto have learned the new protocol that went through NIH trials from 2000-2003 and has been paid for by Medicare since 2004 since a person with a transplant saves Medicare over $50,000 a year compared to a person strapped to a dialysis machine. Go to www.sevenluckystars.com and, on the conflict of interest issue, go to www.getakidney transplant.org for peer reviewed journal papers. Dialysis cost Medicare over $20 billion last year, transplant less that a billion. Go to US Renal Data System for all the gruesome numbers.


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Posted by thedonor | 1 day ago

To anyone thinking of donatig.This is Annette donor in this story.I just want you to know that there is a new procedure that is pretty painless they don't cut you wide open any more the make 2 small cuts 1/4 of an inch for the insturments 1 small cut 1/4 of an inch for the camera and a small cut at the bikini line. I had no pain at all they had a ball filled with numing meds. going to the area of surgery by the time they disconected the ball the pain was gone!! I never took any pain killers they did prescribe them I just never had to take them!!Hospital stay is 1 day for most donors! I went back to work 1 weak after surgery,I don't suggest that most go back that quikley the doctor told me to stay off work for two weeks! I don't have to take any meds.,my life goes on just like before. My life as been deeply enriched with joy and happiness since this experience and I have a whole new adopted family, Sapna and her family have become great friends of mine!!(No!they did not pay me for those of you wondering)It's not about money it's about helping our fellow humans! I don't know why this is so hard for some to understand. God says we are all brothers and sisters and we should treat each other as so!! I picked Sapna from matching donors for several reasons! Number one reason was because she was taking matters into her own hands and not waiting around and feeling sorry for her self!! There is options out there other than cadaver donors. such as matchingdonors.com and the paired exchange program at www.paireddonation.org

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Posted by tflores57 | 1 day ago

I speak as a person who is registered on the website matchingdonors.com. I did not put a picture on there. I only stated the facts of my story. I received my first kidney from my mother 15 years ago and it has now failed....15 years is a long time for a transplanted kidney to last. Now I am on dialysis and working 40 hours per week, though that is getting harder and harder. There are no spare kidneys in my family since there is a family history of PKD. I registered on that website in the fall of 2008 and received a phone call a week before Christmas from a wonderful altruistic person who wants to give me one of his kidneys. He is a compatible match and was has just completed his workup. We are at the point where we are waiting for the Transplant Team to review everything and then we will hopefully have a date for surgery. No money has exchanged hands and none will. This person is a rare individual who just wants to help someone. Through phone conversations and email we have become good friends. I did get the chance to meet this person and found that he is one of the nicest and most down-to-earth people I know. He has spent his entire life helping people and defending our country where we can live in relative safetly and maintain the right to make our own decisions. My daughter will one day need a kidney transplant and my brother will one day need his second kidney transplant. I thank God for people like this. If it weren't for others who want to be altruistic and help someone, there would be more people dying from remaining on that infernal dialysis machine. If you have not been sitting in that chair for 3 to 4 1/2 hours three times a week, then you have no right to say anything of a derogatory nature about anyone who wants to reach out to someone in need. I am going down this road for the second time in my life and am thankful that this person exists and that he found me on matchingdonors.com

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Posted by philipabel | 1 day ago

The entire kidney transplant system seems flawed to me. Medicare pays $75,000 per year for each dialysis patient. Contrast that with $15,000 per year (for medications) for transplant patients. Medicare could easily afford to pay American citizens to donate their kidneys; it would colse most dialysis centers and there would be no transplant list. Doctors could select donot kidneys from the pool of willing donors to get the best match possible. Medicare could even afford another bureaucracy to run the whole thing and still save money!

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Posted by philipabel | 1 day ago

The entire kidney transplant system seems flawed to me. Medicare pays $75,000 per year for dialysis treatments. A transplant patient cost Medicare about $20,00 per year for medications. If Medicare would pay a fee for kidney donations, there would be far fewer dialysis centers and no transplant list. Doctors could then select the best kidney available, and Medicare would save lots of money. They could even afford another bureaucracy to run the whole thing!

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Posted by LIFESHARERS | 1 day ago

RE: DALLAS HOSPITALS UNEASY ABOUT ORGAN DONATIONS ARRANGED ONLINE by Scott Farwell

The generosity of live organ donors like Annette Baker is wonderful. It’s a shame we need so many live organ donors. Americans bury or cremate 20,000 transplantable organs every year.

There is another good way to put a big dent in the organ shortage – if you don’t agree to donate your organs when you die, then you go to the back of the waiting list if you ever need an organ to live.

Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. About 50% of the organs transplanted in the United States go to people who haven’t agreed to donate their own organs when they die.

Anyone who wants to donate their organs to others who have agreed to donate theirs can join LifeSharers. LifeSharers is a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition. LifeSharers has over 12,000 members, including 980 members in Texas.

Please contact me - Dave Undis, Executive Director of LifeSharers - if your readers would like to learn more about our innovative approach to increasing the number of organ donors. I can arrange interviews with some of our local members if you’re interested. My email address is daveundis@lifesharers.org. My phone number is 615-351-8622.

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Posted by betsyw | 1 day ago

Our son found a kidney donor through MatchingDonors.com in a matter of days. He had been on several "lists" for cadaveric kidneys for over a year, he had gone on dialysis, and his health had started to deteriorate as a consequence. Why should a potential donor not have the right to choose a story that resonates with them? No money has changed hands here, nor will it ever. MatchingDonors.com is providing an invaluable service to patients like my son who are waiting and increasingly desperate.

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Posted by okbb01 | 1 day ago

Transplant centers, their nephrologists, and their transplant surgeons who refuse to evaluate and perform alruistic, non-related, living donor transplants are violating their professional responsibility to their patients needing human organ transplants. Goran B. Klintmalm is a perfect example of a surgeon who should be held accountable for his abandonment of patients if they find such donors.
I am the first person to have found an altruistic donor through www.matchingdonors.com. Needless to say, my transplant caused international controversy. Only through local, national, and international media attention did I get my surgery to save my life. The same old nonsensical satements are being used now as they were then. None have any merit or basis in fact.
As to surgeons concerned about something untoward going on behind the scenes between a prospective donor and a transplant candidate, a transplant surgeon friend of mine in Pennsylvania responded to that stupidity by saying, "I'm a transplant surgeon not a cop. The transplant team's role is to evaluate the medical need of the transplant recipient as well as the medical and psycho-social suitablity of the prospective donor. As far as related patient-donor transplants, how do I know if cousin Johnny is receiving a kidney from cousin Suzie that cousin Suzie wasn't coerced? How do I know that cousin Suzie wasn't told by grandmother give Johnny your kidney or I won't pay for your college expenses?"
The present cadaver organ transplant system as operated by the private government contractor, United Network for Organ Sharing, is corrupt, unfair, and unethical. UNOS and its affiliated Organ Procurement Organizations (OPO) are all about power, money and greed. No one ever gets an organ donated to them through this unholy alliance. There is little transparency in anything UNOS/OPO are engaged in as well as huge conflicts of interest in transplant surgeons involved with UNOS and the OPO. As a transplant surgeon and former board member of UNOS has stated in public testimony, "... the UNOS stock in trade are misinformation and deceit. For more specifics go to www.innovativestrategies.us.
If anyone needs a transplant they need to advocate for themselves and use all legal means available to them to get the life saving surgery. Anyone in the medical profession who finds objection in such self-advocacy should find another line of work or profession.

Robert F. Hickey, Ph.D.
Vail, Colorado

Posted by thedonor | 1 day ago

aggiesmiles google organ donor or live organ donor.Most of all tell your love ones and sign your donor card on your drivers license.If more people would donate when they die there wouldn't be a need for live donors like me!!!!!

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Posted by thedonor | 1 day ago

I think matchingdonors is a great web. site! What i said is most people can not afford the exspense of going out of state for the transplant, since you cant donate to a stranger in Dallas it can get very costly!Matchingdonors can help with these cost! Sapna and I have became great friends in case you all are wondering!

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Posted by ep1972 | 1 day ago

Though I guess I can see how being a public service it does become more problematic.

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Posted by ep1972 | 1 day ago

I don't know that being able to choose any organization needs to be a prerequisite with this kind of site. You can always directly make your donations through other channels.

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Posted by DMNScottFarwell | 2 days ago

gazer12: An abject lesson serves as a warning to others. (In some varieties of English 'object lesson' is used.)

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Posted by belikemike | 2 days ago

good story

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Posted by xraygirl | 2 days ago

One major thing that donors need to be informed of is that it is harder physically on them to recover than the recipient. A friend's wife gave a kidney to her father and was "down" much longer than him, 30 yrs older than her, and obviously, in worse health.

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Posted by windwalker | 2 days ago

good story

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Posted by ks2 | 2 days ago

I am a kidney donor (to my best friend of 20+ years) and agree with Dr. Klintmalm. If you want to donate an organ to a stranger, it should be handled like cadaver donations and the organ goes to the person on the list who is the best match.

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Posted by AggieSmiles | 2 days ago

Where can I learn more about donating my organs?

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Dallas hospitals uneasy about organ donations arranged online

11:51 PM CDT on Sunday, April 19, 2009

By SCOTT FARWELL / The Dallas Morning News
sfarwell@dallasnews.com

Annette Baker's friends think she's crazy – and some in the medical community wonder whether they are right.

In January, the 43-year-old Garland business owner donated her left kidney to a woman she had never met: Sapna Lall, a 38-year-old mother from Frisco.
Also Online

Link: matchingdonors.com

Link: Baylor Regional Transplant Institute

Link: UT Southwestern Medical Center

Link: Children's Medical Center Dallas

Link: Methodist Dallas Transplant Institute

Link: Medical City Transplant Center

The women met on a Web site, matchingdonors.com, which, for $600, posts personal ads from people in need of organ transplants. From there, prospective donors search the site for a connection that begins with a matching blood type – and is augured by a picture or a poignant story.

Baker said she was drawn to Lall because they both live in North Texas, and they each have one child, a daughter.

"I just think that if more people would try to help each other – even with small things – the world would be a better place," said Baker, a woman who compulsively rescues stray dogs (she has six at the moment), and digs in her purse nearly every time she's confronted with an outstretched hand.

"I've always been that type of person," she said. "True happiness is just doing the right thing. It's really no more complicated than that."

But in Dallas, altruistic organ donation is not only complicated, it's controversial.

Last fall, both Baylor and UT Southwestern Medical Center turned Lall and Baker away from their transplant wings. So in January, the women, who live about 30 miles apart, traveled 1,100 miles to the University of Toledo Medical Center for the successful transplant.

Why?

Hospitals in Dallas will not accept organ donations from people who aren't friends or relatives. They fear under-the-table payments – it is a federal offense to buy or sell organs in the United States – and the growth of an Internet-induced organ exchange industry preying on the sick and poor.

Motives questioned

Dr. Goran B. Klintmalm, chief of the Baylor Regional Transplant Institute in Dallas, questioned the motives of good Samaritan organ donors like Baker.

"The preservation of body from injury is probably the strongest basic instinct we have as man," he said. "To violate that, you really have to ask yourself. Is this something people do because they want to do a good deed? And I think you have to ask the question, 'How reasonable is that?' "

Klintmalm, the immediate past president of the American Society of Transplant Surgeons, said the brokering of organs by Web sites such as matchingdonors.com may exploit the desperate and needy.

"It's felt quite strongly by a number of transplant surgeons around the country that organ donation is a gift of life," he said. "We don't want to sully that gift by making it into a commodity."

He said India, Thailand and Turkey – where the wealthy purchase organs from the poor – should be an abject lesson to hospitals and surgeons in the U.S.

Ten years ago, most transplant centers in the country agreed with Klintmalm and Baylor. But today, more and more hospitals – including Johns Hopkins in Maryland, Massachusetts General Hospital and others – accept organs from unrelated altruistic donors.

Ten years from now, it may be common practice.

"We hope there will be enough donors to meet the need," said Joel Newman, assistant director of communications for the United Network of Organ Sharing, the arbiter for nearly all donations in the country. "But if there's still a need for living donor transplants, I suspect the field will be more comfortable with it."

New policy

As a matter of fact, UT Southwestern is working on a new policy that would make it possible for people to donate organs to strangers. The new protocol would also be applied at Children's Medical Center Dallas.

Methodist Dallas Medical Center does not accept unrelated donors and Medical City Hospital did not respond to questions.

"We think this is a very viable method for increasing donations in this country," said Dr. Meelie DebRoy, surgical director of kidney-pancreas transplants at UT Southwestern. "There is a population that is truly altruistic and at some point we have to stop interfering with people's autonomy and allow them to do what they want to do."

More than 84,000 people are on the kidney transplant list in the United States, and about 15 people a day die while waiting. The typical wait is three to five years.

Most organs are harvested from cadavers, although living donations from family members and longtime friends have been common for years. But it wasn't until widespread adoption of the Internet that kidney patients began pushing for relaxed rules on who could donate.

Why, they argue, could someone at church donate to a friend in the congregation, but friends who met online couldn't? And how long do you have to know someone to be considered a close friend? Ten years? Two weeks?

DebRoy said the fluid meaning of the word friend was one of the reasons decision-makers decided to recalibrate UT Southwestern's policy.

The new screening, she said, will include an additional layer of social-psychological evaluation. Doctors worry some donors may undergo the surgery as a way to atone for past mistakes, or with the hope that a selfless act will make them a better person.

"In the altruistic setting, this is even more important because in a very real sense, the donor has no disease process to bring them to the operating room," she said. "And the donor needs to understand, this is not a procedure without risks."

UT Southwestern's about-face on the issue prompted a terse response from Baylor's top transplant surgeon, Klintmalm.

"I don't care what Southwestern does," he said. "I am the senior transplant surgeon in this market. I speak for myself and my program and I stand for integrity and the safety of donors. That's what I stand for, and that's what we do."

Web site criticized

Paul Dooley, chief executive officer of matchingdonors.com, said he understands Klintmalm's thinking, but he doesn't agree with it. People should be able to donate to anybody or any organization they'd like.

If you went to Stanford, and you want to write a check to your alma mater, he says, the government shouldn't be able to force you to donate to the United Way.

"Our experience is that people are more likely to be coerced by their brother or mother than they are by a stranger," he said. "And the probability that a stranger is going to shake you down is less likely than someone you know shaking you down for money."

He said the $600 registration fee is waived for people who cannot afford it.

Even so, many physicians – even the Ohio doctor who performed the transplant on Lall – said the model advanced by matchingdonors.com is flawed.

Dr. Michael Rees said the "beauty pageant" method, which allows people to post pictures of themselves and write profiles, sews seeds of inequity. Even so, he said, he decided to go forward with the surgeries because the women came to him and proved to be a good match. He said it was not his place to intervene.

"We think the system should be fair for everyone, said Rees, "not the prettiest or those with the most clever words."

Baker, the organ donor from Garland, said she still feels there is not a place for her in the current organ donation system. And she understands the criticism of matchingdonors.com.

"It is wrong in some ways because rich people are the ones getting their kidneys," she said.

"But if you're like me and you want to help somebody, how else do you do it – especially in Dallas?"
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Comments (37)
Posted by gazer12 | 2 days ago

Wouldn't that be "object lesson"? C'mon DMN.

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Posted by missl | 2 days ago

i will not judge any one.but i donated my daughters organs in 1995.she was 24yrs.had a 3yrs old son.she saved 4 people.to me she gave life.i will donate one of my kidney in a heart beat.i retired from working in a hospital.these patients are fighting for their lives.it is so sad.so please dont judge unless you have been there.

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Posted by DallasGirl | 2 days ago

I have a good friend who has been on a kidney transplant list for two years. If I could have been a match, I would have given her one of mine. With all due respect to the Baylor surgeon, you can't tell me wealthy people are sitting on waiting lists for organs.......

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Posted by samiam79 | 2 days ago

Dallaslatino I commend you and your family on donating your sons organs. What a great statement "those who take lives get news coverage". I agree people like yourself and your son should get praise on the 10pm news. So that we can bring awareness to everyone about the importance of organ donation. I don't see how telling your story on the 10pm news is a privacy issue.

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Posted by Dallaslatino | 2 days ago

More people would be comfortable with donation if it got better news coverage. My 24 yr old son passed in 06 and saved 5 peoples lives but no one knows about it because its all keeped on the quit side because of privacy issues. Unless you are lucky to be born in the spotlight. They should make a big deal out of every donation, after all you are saving a life(s). Those who take lives get coverage on all the channels.

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Posted by crashtx1 | 2 days ago

The current system doesn't work, so people are doing anything to try to live.

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Posted by alicat | 2 days ago

"It's felt quite strongly by a number of transplant surgeons around the country that organ donation is a gift of life," he said. "We don't want to sully that gift by making it into a commodity."

I'm sure Dr. Klintmalm and all the other transplant surgeons perform the surgery for free. Right? I mean, I know the ER makes it's servies available for free, because you know, you can't put a price on the gift of life.

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Posted by alicat | 2 days ago

"It's felt quite strongly by a number of transplant surgeons around the country that organ donation is a gift of life," he said. "We don't want to sully that gift by making it into a commodity."

So I assume these doctors perform the transplant for free. Right?

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Posted by Jason Jr | 2 days ago

At least the person gets the organ and survives. That's all that matters. The Doctors shouldn't freak out about it. People are helping people live. And that's a good thing.

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Posted by dherald | 2 days ago

I wonder Goran suffered organ failure and none of his family or friends were a suitable match would he change his views? Organ failure is a death sentence without transplantation. With todays surgical techniques and anti rejection medications transplantation gives patients a real chance at life. Organ failure is more common than you might think. Every time you pass your neighborhood diaylsis center rest assured that every patient in there is praying for a transplant as they watch their life disapear into a diaylsis machine. Transplants are a miracle that must be shared! To let patients die while waiting on the transplant list is a unforgivable sin.

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Dallas hospitals uneasy about organ donations arranged online

11:51 PM CDT on Sunday, April 19, 2009

By SCOTT FARWELL / The Dallas Morning News
sfarwell@dallasnews.com

Annette Baker's friends think she's crazy – and some in the medical community wonder whether they are right.

In January, the 43-year-old Garland business owner donated her left kidney to a woman she had never met: Sapna Lall, a 38-year-old mother from Frisco.
Also Online

Link: matchingdonors.com

Link: Baylor Regional Transplant Institute

Link: UT Southwestern Medical Center

Link: Children's Medical Center Dallas

Link: Methodist Dallas Transplant Institute

Link: Medical City Transplant Center

The women met on a Web site, matchingdonors.com, which, for $600, posts personal ads from people in need of organ transplants. From there, prospective donors search the site for a connection that begins with a matching blood type – and is augured by a picture or a poignant story.

Baker said she was drawn to Lall because they both live in North Texas, and they each have one child, a daughter.

"I just think that if more people would try to help each other – even with small things – the world would be a better place," said Baker, a woman who compulsively rescues stray dogs (she has six at the moment), and digs in her purse nearly every time she's confronted with an outstretched hand.

"I've always been that type of person," she said. "True happiness is just doing the right thing. It's really no more complicated than that."

But in Dallas, altruistic organ donation is not only complicated, it's controversial.

Last fall, both Baylor and UT Southwestern Medical Center turned Lall and Baker away from their transplant wings. So in January, the women, who live about 30 miles apart, traveled 1,100 miles to the University of Toledo Medical Center for the successful transplant.

Why?

Hospitals in Dallas will not accept organ donations from people who aren't friends or relatives. They fear under-the-table payments – it is a federal offense to buy or sell organs in the United States – and the growth of an Internet-induced organ exchange industry preying on the sick and poor.

Motives questioned

Dr. Goran B. Klintmalm, chief of the Baylor Regional Transplant Institute in Dallas, questioned the motives of good Samaritan organ donors like Baker.

"The preservation of body from injury is probably the strongest basic instinct we have as man," he said. "To violate that, you really have to ask yourself. Is this something people do because they want to do a good deed? And I think you have to ask the question, 'How reasonable is that?' "

Klintmalm, the immediate past president of the American Society of Transplant Surgeons, said the brokering of organs by Web sites such as matchingdonors.com may exploit the desperate and needy.

"It's felt quite strongly by a number of transplant surgeons around the country that organ donation is a gift of life," he said. "We don't want to sully that gift by making it into a commodity."

He said India, Thailand and Turkey – where the wealthy purchase organs from the poor – should be an abject lesson to hospitals and surgeons in the U.S.

Ten years ago, most transplant centers in the country agreed with Klintmalm and Baylor. But today, more and more hospitals – including Johns Hopkins in Maryland, Massachusetts General Hospital and others – accept organs from unrelated altruistic donors.

Ten years from now, it may be common practice.

"We hope there will be enough donors to meet the need," said Joel Newman, assistant director of communications for the United Network of Organ Sharing, the arbiter for nearly all donations in the country. "But if there's still a need for living donor transplants, I suspect the field will be more comfortable with it."

New policy

As a matter of fact, UT Southwestern is working on a new policy that would make it possible for people to donate organs to strangers. The new protocol would also be applied at Children's Medical Center Dallas.

Methodist Dallas Medical Center does not accept unrelated donors and Medical City Hospital did not respond to questions.

"We think this is a very viable method for increasing donations in this country," said Dr. Meelie DebRoy, surgical director of kidney-pancreas transplants at UT Southwestern. "There is a population that is truly altruistic and at some point we have to stop interfering with people's autonomy and allow them to do what they want to do."

More than 84,000 people are on the kidney transplant list in the United States, and about 15 people a day die while waiting. The typical wait is three to five years.

Most organs are harvested from cadavers, although living donations from family members and longtime friends have been common for years. But it wasn't until widespread adoption of the Internet that kidney patients began pushing for relaxed rules on who could donate.

Why, they argue, could someone at church donate to a friend in the congregation, but friends who met online couldn't? And how long do you have to know someone to be considered a close friend? Ten years? Two weeks?

DebRoy said the fluid meaning of the word friend was one of the reasons decision-makers decided to recalibrate UT Southwestern's policy.

The new screening, she said, will include an additional layer of social-psychological evaluation. Doctors worry some donors may undergo the surgery as a way to atone for past mistakes, or with the hope that a selfless act will make them a better person.

"In the altruistic setting, this is even more important because in a very real sense, the donor has no disease process to bring them to the operating room," she said. "And the donor needs to understand, this is not a procedure without risks."

UT Southwestern's about-face on the issue prompted a terse response from Baylor's top transplant surgeon, Klintmalm.

"I don't care what Southwestern does," he said. "I am the senior transplant surgeon in this market. I speak for myself and my program and I stand for integrity and the safety of donors. That's what I stand for, and that's what we do."

Web site criticized

Paul Dooley, chief executive officer of matchingdonors.com, said he understands Klintmalm's thinking, but he doesn't agree with it. People should be able to donate to anybody or any organization they'd like.

If you went to Stanford, and you want to write a check to your alma mater, he says, the government shouldn't be able to force you to donate to the United Way.

"Our experience is that people are more likely to be coerced by their brother or mother than they are by a stranger," he said. "And the probability that a stranger is going to shake you down is less likely than someone you know shaking you down for money."

He said the $600 registration fee is waived for people who cannot afford it.

Even so, many physicians – even the Ohio doctor who performed the transplant on Lall – said the model advanced by matchingdonors.com is flawed.

Dr. Michael Rees said the "beauty pageant" method, which allows people to post pictures of themselves and write profiles, sews seeds of inequity. Even so, he said, he decided to go forward with the surgeries because the women came to him and proved to be a good match. He said it was not his place to intervene.

"We think the system should be fair for everyone, said Rees, "not the prettiest or those with the most clever words."

Baker, the organ donor from Garland, said she still feels there is not a place for her in the current organ donation system. And she understands the criticism of matchingdonors.com.

"It is wrong in some ways because rich people are the ones getting their kidneys," she said.

"But if you're like me and you want to help somebody, how else do you do it – especially in Dallas?"
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Comments (37)
Posted by TxBrewer | 2 days ago

I can easily see sites like this used as a first step towards selling organs. I understand the doctors issues with this. If you want to donate an organ to someone why hand pick that individual? Make it a blind donor/recipient situation and allow willing doners to be blindly matched.

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Posted by CWeck | 2 days ago

I think if someone wants to donate and another needs the organ, why should the doctors get in the way?

It seems that doctors are well trained in an equality-for-all mentality to health care. Allowing stories and pictures introduces perceived merit into the equation. I'm not sure that's wrong.

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Posted by rmdurango | 2 days ago

It must cut into hospital profits, thats why they don't like it.

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Posted by GSchretter | 2 days ago

Hey it's American let people do what they want until we become the USSA.

I really do not think pictures or words will make a difference.

I hope Baker's kidney does not fail her down the road.

Hey people want to donate parts, cool by me.

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Posted by Awake2ooEarly | 2 days ago

I don't understand Amused in GP's question. There never has been a barrier for donations to children, parents, or spouse. There may be a medical problem regarding donor/recipient compatibility, but never an obstacle due to kinship.

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Posted by george560600 | 2 days ago

We are always hearing there are not enough organs to go around. Why not allows this type of donation. Doctors who are disagreeing might be feeling this option takes away from their "god-like" powers of deciding who gets the organs.

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Posted by Amused In GP | 2 days ago

But what if...it's YOUR son, daughter, mother, etc?

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 http://www.dallasnews.com/sharedcontent/dws/dn/latestnews/stories/042009dnmetorganswap.3e27259.html
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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