I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on August 12, 2007, 10:50:16 AM
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The Kindness Of Strangers
Foes Don't Stop MatchingDonors.Com From Connecting The Needy With The Generous
The world of online organ donors has opened new doors for people like Richard Cohen, an attorney in Hartford who underwent a kidney transplant operation on June 20, made possible by a match from a woman in New Hampshire.
By JOANN KLIMKIEWICZ | The Hartford Courant
August 12, 2007
Richard Cohen figured you could find just about anything you wanted these days, no matter how elusive or obscure, in the quick zip of an Internet search. So, with his health declining and all other options failing him, he typed into Google: I need a kidney.
It was a shot in the dark, Cohen knew. But what else did he have?
Several years after doctors diagnosed him with incurable kidney disease, his appetite, energy and hope were on a steady dwindle. The busy Hartford attorney declined the traditional dialysis treatments, worrying that the physically draining sessions would impede his already eroding lifestyle. He opted for a kidney transplant that might give him a second chance. But the procedure wouldn't come easily.
With no compatible kidney donors among his family and friends, Cohen, now 55, would have to put his name on the backlogged national wait list for organs from deceased donors. On a register that this week neared 73,000 waiting kidney recipients, that could easily have meant four years before Cohen's name was called. And if he wanted to move up that list, it would also mean Cohen would have to undergo the dialysis he didn't want, required by the organization until the patient-kidney match is made.
"The clock was ticking," says Cohen. "My feeling was there had to be people out there who are altruists, who are willing to donate a kidney."
And so Cohen typed those search terms at his computer, and his hunch led him to an online living-donor service called MatchingDonors.com. A cynic by his legal trade, he wasn't sure about it. "My wife really thought I was being taken to the cleaners on this one," he says.
But sure enough, it eventually led him to Margie Stevens-Beville, an emergency room nurse from New Hampshire. And on June 20, doctors at Hartford Hospital successfully transplanted her kidney into Cohen's ailing body. The surgery went smoothly, and both donor and recipient are recovering well. It was the 46th transplant facilitated by a Matching Donors search.
"What she did was just so breathtaking and awesome, and so unselfish," Cohen says, back at work and visibly at ease Monday behind a desk of folders and messy paper piles.
"It's the ultimate gift."
But it's also a controversial one.
When a Massachusetts doctor launched the site in 2004, MatchingDonors.com ignited an intense debate over the ethics of seeking live organ donors via the Internet. With its members paying $595 for a lifetime subscription - or $295 per month - to scroll through donor-recipient profiles, critics argued that the site reduced the serious issue of organ donation to the medical equivalent of an online dating service. (Donors are not permitted by law to be compensated, though their medical bills and lost wages can be reimbursed by recipients).
Opponents contended it gave unfair advantage to the wealthy and sophisticated. They worried it would leave the poorer, perhaps sicker patients - or those whose member profiles weren't written with as much heart-breaking savvy - to wait under a national shortage of organ donors. And they contended it would fuel illicit trade in human organs.
But none of it has come to pass, says Matching Donors medical director Jeremiah Lowney.
"Anytime you can take someone off that [wait] list, you're allowing someone else to move up that list," says Lowney. "Instead of passively waiting, this is allowing patients to take their health care into their own hands."
In less than three years, the nonprofit site - still the only one of its kind - has bridged more than 50 recipient-donors for transplant surgery. It counts more than 4,000 potential donors as members. The successful pairings, Lowney says, include members of all socio-economic backgrounds, and profiles as utilitarian as Cohen's: I need a kidney. I am 53 and desperately want my old life back. ...This is a situation I never dreamed I'd be in but for the first time in my life, I'm asking for help and I need all I can get.
They do get reports of some users trolling the site, illegally offering their organs for thousands of dollars. But both Lowney and Cohen say that element is in the minority. The service is awaiting clearance from Medicare to reimburse patients the registration fee, but in the meantime it reduces or waives fees for patients who can't afford it.
Skepticism remains. But much of it has yielded to cautious acceptance. Doctors at transplant centers around the country are increasingly familiar with the services. And the United Network for Organ Sharing, the private, nonprofit that contracts with the U.S. government to oversee the national organ procurement wait list, has also eased its stance. An organization spokesman says it does not weigh in on how recipients and donors meet. It's more concerned that both parties receive the comprehensive physical and psychological screening from their transplant centers to make sure they are viable candidates; and that patients are properly educated about the benefits and risks of being living donors. For kidney donors, the risks are considered minimal. A person with one functioning kidney has the same life expectancy as one with both.
"Any reasonable person would question the motives. `Why would someone want to donate their kidney to a complete stranger'?," says Lowney, who practices internal medicine in Boston. "But there are these beautiful people out there who are willing to donate...because there is someone in great need. We can't continue to ignore these people."
97,000 Names On Wait List
Indeed, nearly 97,000 patients currently await organ transplants in the United States. The majority of living donors are patients' relatives or friends, though UNOS reports the number of so-called good Samaritan donors who offer their organs to strangers is increasing.
As the population ages and causes of kidney failure like diabetes increases, the need for donor organs will increase, says Matthew Brown, Cohen's transplant surgeon at Hartford Hospital. In 1998, 150 people per million population suffered kidney failure, he says. By 2004, that number was 350. That has stretched the median wait time in Connecticut from two years in 2004 to 4 to 7 years today.
"This website sounds like a useful tool to get more people the life-saving transplants they require," says Brown, who first learned of Matching Donors through Cohen. And just last week, he encountered his second set of patients who met through the site, a local woman who received a kidney from a donor who flew here from overseas for the surgery.
"But I don't think that MatchingDonors.com is going to close the gap between the number of organ donors and the number of people waiting," he says. "I think this is still always going to be a minority of our total patients."
Patients wouldn't need such services, Brown says, if the masses could be convinced to donate their organs upon death. Doing so has the potential to save 7 or 8 lives: The heart, lungs, kidneys, liver, pancreas and small intestine can be transplanted.
Seeing The Benefit In Life
Margie Stevens-Beville never needed convincing. She knew from childhood that she wanted to donate her organs upon death, and she remembers the day she filled out her first driver's license to give permission. But last Christmas, Stevens-Beville, now 39, saw a news program featuring MatchingDonors.com. She was taken with the notion that she could see the benefit of her donation in life. She signed up and connected with Cohen within days.
After the initial shock wore off, she says, her family supported her. Her husband had a particular understanding, since a childhood accident left him with just one kidney.
Still, the gift of a living organ is an enormous one to give to a stranger. There was something else tugging at Stevens-Beville when she decided to donate. Her first husband died of a brain tumor. He was just 32. "I would have given anything to have more time with him," says Stevens-Beville, her voice quivering under the weight of the words. "I thought, even more for Rich's wife than for Rich, if I could save her the pain that I went through. If I could just give her more time with her husband."
How do you thank a donor for giving you a second chance at life? Cohen hasn't figured it out yet. He suspects he can't. But this he does know: Stevens-Beville is forever part of the family.
He figures maybe the best way to pay it forward is by getting the word out to potential donors.
"I realize that a lot of people don't have the time or the lifestyle that would allow them to do what Margie did," he says. "If you can't do that, at least become a donor upon death."
Tell your family members your wishes, he says. Put it on your driver's license.
"You're not going to need your organs where you're going. And you will be saving someone's life. What could be better than that?"
Reach Joann Klimkiewicz at jklimkiewicz@courant.com.
http://www.courant.com/features/lifestyle/hc-donors0812.artaug12,0,4663748,full.story
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Wow, he took a chance and it payed off, good for him :clap;
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Yea , for him it was good, but what about the donor ? This caring individual, a nurse by profession gives up a kidney to a "lawyer". What happens in the future, God forbid, she needed it after an accident or something, will this lucky lawyer help her needs, whatever they may be.? HA HA. not a prayer. Now I can see some poor soul or somebody serving the good of the community getting a fast living gift of life, but not a blood sucking, swamp slime lawyer.
He took advantage of her. I hope she doesn't live to regret it. We need nurses, there is a shortage of them. We have far too many lawyers compared to the rest of the world. It was a mistake to save him.
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Yea , for him it was good, but what about the donor ? This caring individual, a nurse by profession gives up a kidney to a "lawyer". What happens in the future, God forbid, she needed it after an accident or something, will this lucky lawyer help her needs, whatever they may be.? HA HA. not a prayer. Now I can see some poor soul or somebody serving the good of the community getting a fast living gift of life, but not a blood sucking, swamp slime lawyer.
He took advantage of her. I hope she doesn't live to regret it. We need nurses, there is a shortage of them. We have far too many lawyers compared to the rest of the world. It was a mistake to save him.
Wow, you don't even know the guy and you have a lot of hate for him. How sad.
Congrats to him, and thank god for people like her who donate.
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Wonderful story- gives us all hope. Hippy, I see that you are new to the site. First, :welcomesign; Second, after reading through the threads, you may come to understand how so many of us admire anyone who is willing to donate a kidney. It doesn't matter what our professions are - rich or poor - we all want to live. It is a miracle any time another human being can save anothers life. Again, welcome. Hope you find good information on this site. It is a great group of people.
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not all lawyers are bad people....he is a human being first, I'm glad he was lucky enough to find someone to donate.
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Yea , for him it was good, but what about the donor ? This caring individual, a nurse by profession gives up a kidney to a "lawyer". What happens in the future, God forbid, she needed it after an accident or something, will this lucky lawyer help her needs, whatever they may be.? HA HA. not a prayer. Now I can see some poor soul or somebody serving the good of the community getting a fast living gift of life, but not a blood sucking, swamp slime lawyer.
He took advantage of her. I hope she doesn't live to regret it. We need nurses, there is a shortage of them. We have far too many lawyers compared to the rest of the world. It was a mistake to save him.
Hippy, you need to gain a bit more knowledge of the donor/transplant process before you cast stones at anyone for trying to make themselves well with a transplant.
Why is an attorney less deserving than anyone else with kidney disease?
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Yea , for him it was good, but what about the donor ? This caring individual, a nurse by profession gives up a kidney to a "lawyer". What happens in the future, God forbid, she needed it after an accident or something, will this lucky lawyer help her needs, whatever they may be.? HA HA. not a prayer. Now I can see some poor soul or somebody serving the good of the community getting a fast living gift of life, but not a blood sucking, swamp slime lawyer.
He took advantage of her. I hope she doesn't live to regret it. We need nurses, there is a shortage of them. We have far too many lawyers compared to the rest of the world. It was a mistake to save him.
Sounds like you might be a little jealous there hippy. That's what this site is about a place to speak your mind. Within reason.
Please read the site rules here: http://ihatedialysis.com/forum/index.php?board=34.0
Thanks
Sluff/ Admin
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What seems strange, judging from other posting, is that if he didn't get lucky finding this donor and left the country looking for a donor, we would then call him names.
If he paid a donor and got transplanted outside of the country, people would say he took advantage of the donor by paying him a few grand. While I feel closer with the American nurse
many here would sympathize more with the paid donor in an other country, saying he didn't understand the risks, the money would not have a long term good result, he may need that kidney in the future and NOW he can no longer lift heavy sacks of rice. Well neither can the Nurse lift heavy sacks nor her heavy patients. What about her future ?
The lawyer who was transplanted with the nurse's kidney had lots of help and we cheer all those who helped him, but if he left the country to find an available donor, would we still cheer everone helping him ? Or would we curse them and him. ?
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What seems strange, judging from other posting, is that if he didn't get lucky finding this donor and left the country looking for a donor, we would then call him names.
If he paid a donor and got transplanted outside of the country, people would say he took advantage of the donor by paying him a few grand. While I feel closer with the American nurse
many here would sympathize more with the paid donor in an other country, saying he didn't understand the risks, the money would not have a long term good result, he may need that kidney in the future and NOW he can no longer lift heavy sacks of rice. Well neither can the Nurse lift heavy sacks nor her heavy patients. What about her future ?
The lawyer who was transplanted with the nurse's kidney had lots of help and we cheer all those who helped him, but if he left the country to find an available donor, would we still cheer everone helping him ? Or would we curse them and him. ?
Does one have to do with the other? The nurse donated, no compensation and of her own free will, her kidney to save this man. All I can think is this is a selfless and amazing thing for her to even consider, much less do. I don't sympathize with this nurse, I applaud her. She is a hero.
Bless the donor. And I am thrilled to pieces for the recipient.
This attorney is as deserving as any other kidney patient. If live donors don't step up, those on the UNOS list will wait longer and longer or possibly die on the list.
If and when one of our members decides to go overseas and pay for a kidney. Then I will support them and be there for them, just like I would when any us to get a transplant.
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Hippy--maybe you need to explain where you are coming from so we understand what you are trying to say. We are here because we need a kidney. We have dealt with organ dealers in the past on this site, so you might read old posts to find the common view on different types of donation. Just a thought
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I would like to read what you read. Which post ?
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What seems strange, judging from other posting, is that if he didn't get lucky finding this donor and left the country looking for a donor, we would then call him names.
If he paid a donor and got transplanted outside of the country, people would say he took advantage of the donor by paying him a few grand. While I feel closer with the American nurse
many here would sympathize more with the paid donor in an other country, saying he didn't understand the risks, the money would not have a long term good result, he may need that kidney in the future and NOW he can no longer lift heavy sacks of rice. Well neither can the Nurse lift heavy sacks nor her heavy patients. What about her future ?
The lawyer who was transplanted with the nurse's kidney had lots of help and we cheer all those who helped him, but if he left the country to find an available donor, would we still cheer everone helping him ? Or would we curse them and him. ?
First off-donating a kidney does not make you disabled in ANY way- and if you could lift heavy stuff before- once you heal you can again. My husband only had one kidney for 25 years, and he did very hard,heavy work.
Second- you voiced your opinion that a lawyer was somehow less deserving then -say- an accountant, or a bus driver. Lawyers are human beings who deserve compassion just as much as the next person .
If I had the money I would buy my husband a kidney in the Philippines- I want him to survive and don't think I would care what ANYONE thought.
But the idea that one person is more deserving then another because of their proffession- thats stupid.
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ER nurse's kidney gift helps Conn. lawyer
MatchingDonors facilitates transplant for Connecticut lawyer
By Jennifer Feals
jfeals@seacoastonline.com
September 09, 2007 6:00 AM
EXETER — Looking back to when she was 16 years old, Margie Stevens-Beville remembers how eagerly she checked "organ donor" on her driver's license application.
This June, the 39-year-old Exeter Hospital emergency room nurse took her chance, saving the life of a Connecticut man in need of a kidney transplant.
Working in the hospital, Stevens-Beville has seen cases where patients registered to be organ donors are unable to do so for various reasons.
"I've watched a lot of people die and I've never seen anybody accepted to the organ bank," she said.
She began to wonder about her odds of actually donating an organ.
"I realized that it's probably not very likely, unless I die tragically, that it will happen," she said.
Watching a commercial for MatchingDonors.com, a non-profit organization that matches living donors with those in need of a transplant, renewed her interest. Stevens-Beville said it was a way to ensure she could be a donor as the national registry does not accept donations from a living person.
She registered on the site in January and was contacted by Richard Cohen, 55, a Connecticut lawyer who was a potential match, within a few days.
Cohen had kidney disease and had waited for years for a donor. His options were receiving a transplant or going on dialysis, Stevens-Beville said.
"Other than the kidney, he was very healthy and he didn't want to go on dialysis," she said. "He's a criminal trial lawyer who owns his own business. He couldn't afford to sit in dialysis for hours, and it makes you more sick. Then he'd have to put his name on a national wait list which is a four-year wait."
So she said Cohen decided to take his future into his own hands and registered with MatchingDonors.com.
The successful transplant between Stevens-Beville and Cohen, performed at Hartford Hospital in Connecticut on June 20, was the 46th transplant facilitated by MatchingDonors, a nonprofit organization.
Stevens-Beville jumped at the chance to help Cohen and his family. Thoughts of his wife motivated her through the process, she said, as she remembered her high school sweetheart and former husband who was diagnosed with a brain tumor eight months before their wedding.
"No one could help him. For four-and-a-half years, we struggled," she said. "When the opportunity came up for me to help Rich, I took it because I prayed every day to let (my husband) live to be 40 and he lived to be 32. I thought of his wife a lot, and if I could give her those eight years I didn't get with my husband, I would do it."
According to the Organ Procurement and Transplant Network, there are 96,933 candidates on wait lists for organ transplants. Approximately 19 people die each day waiting for organ donations.
It has been 11 weeks since the surgery and Stevens-Beville is headed back to work at the emergency room. She said Cohen told her he has never felt better, has already returned to work, and is beginning to travel again, as he did before getting sick.
"He called me two weeks after the surgery and said he felt like a real person again," she said. "His kidney function is now better than mine."
Living with one kidney will not change everyday life too much for Stevens-Beville. While she has to maintain her weight and is not allowed anti-inflammatory drugs, the toughest requirement of life after surgery, she laughed, will be drinking six to eight glasses of water a day.
Her family has been completely supportive of her decision after the initial shock wore off, she said. Her second husband particularly understands what she has gone through after a childhood accident left him with one kidney. In addition, Stevens-Beville said just weeks after her surgery, the family cat got sick and needed to have a kidney removed.
"So we recovered together," she said with a laugh.
Stevens-Beville is sharing her story in the hopes people will see that being a living organ donor can be done and you can lead a normal life afterward.
It has given Stevens-Beville and Cohen a relationship they hope to continue. She said her family has been invited to Thanksgiving dinner at the Cohens and the two continue to talk on the telephone.
During her recovery period, Stevens-Beville said she got the time and opportunity to get close with her family. She also visited her mother in Florida, which she hasn't been able to do for years.
"Now I feel like I am closer to my immediate family and now I have an extended family," she said.
http://www.seacoastonline.com/apps/pbcs.dll/article?AID=/20070909/NEWS/709090360
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I am always happy to hear of a fellow human getting 'the gift'- bravo for them!