DONATE LIFE ORGAN DONATION AWARENESS-ROCHESTER, NEW YORKWritten by gmatsuki on Jun-10-10 5:54am
From: donatelife-organdonation.blogspot.com
Kidney donors link to save loved onesChris Swingle – Staff writer
Local News – June 10, 2010 - 5:00am
Jeananne Thomas, 49, donated a kidney May 4 at UCLA Medical Center in California as part of a chain of pairs that included her brother G. Murray Thomas, who needed a kidney.
To get a kidney for her brother, Jeananne Thomas donated one of hers to a stranger in Utah.
Thomas’ blood type wasn’t a good match for her brother, so first she was told she couldn’t solve his polycystic kidney disease. For seven years, G. Murray Thomas depended on hours of kidney dialysis three times a week — and waited, because there is a huge shortage of deceased donor kidneys. But then Jeananne Thomas heard of a newer approach that strings together pairs of needy recipients and their living, medically incompatible relatives or friends who can be a good match for someone else.
Thomas, 49, of Rochester, traveled cross-country in May as part of a 10-person chain of kidney donations and transplants that benefited five people, including her brother. Strong Memorial Hospital — the Rochester region’s only transplant center — hasn’t yet participated in these kidney chains.
But in about six months it will.
Strong, which is part of the University of Rochester Medical Center, has joined a 30-state private network of about 80 transplant centers called Alliance for Paired Donation that identifies and coordinates multi-city, pay-it-forward kidney donation chains. Strong will be getting involved just as a federal pilot program will begin linking Alliance’s patient/donor database with some of the half-dozen other matching services, which could provide even more possible matches.
The need is great. Rising rates of diabetes and hypertension, driven by obesity, and longer lives, have resulted in more kidney disease, making it the most-needed organ for transplant. Currently 331 people are on a waiting list at Strong for a kidney transplant, including 101 people who have been waiting for at least three years.
In all of 2009, 64 kidney transplants were done at Strong. Nearly half of those kidneys came from deceased donors (brain-dead patients who were on life support before their death). The remainder came directly from a relative, partner or friend who knew the recipient and was a good match.
Soon, Strong’s patients who have a healthy, willing donor can be added into Alliance’s database of nearly 200 people — other incompatible donor-recipient pairs — for attempts at computer matching based on age, location, blood type, tissue typing and other immunological characteristics.
“I think it’s a huge benefit to our patients,” said Dr. Carlos Marroquin, director of the Kidney and Pancreas Programs and one of four kidney transplant surgeons at Strong.
“We’re excited to have them,” Laurie Reece, executive director of the Ohio-based Alliance, said of the Rochester hospital. “It does give hope to people, and that’s a good thing.”
Starting the chain
Nationwide, fewer than one-quarter of dialysis patients ages 18 to 54 are well enough to work or go to school. About one in five people on dialysis die each year, most often of heart disease or infections. Estimates suggest that about a third of people needing a kidney transplant have a relative or friend who’s willing to donate but incompatible with them, said Reece. If those people can participate in a swap of two or more pairs, or a chain started by a no-strings-attached donor, it solves their problem and gets the recipient off the long waiting list for a deceased donor kidney. The national waiting list had 85,296 people as of Tuesday. In 2009, 16,831 kidneys were transplanted nationwide, 62 percent from deceased donors and 38 percent from living donors.
Strong must work out some details before joining chains and swaps. Transplant centers can contract with any of a half-dozen private matching agencies that make the chains of surgeries possible. Strong has contracted with the network started in 2006 by University of Toledo Medical Center transplant surgeon Dr. Michael A. Rees. Rees came up with the idea of using an altruistic donor — someone not connected to a needy recipient but who’s willing to give up a kidney to whomever is chosen to receive it — to start chains of kidney transplants that didn’t have to be performed simultaneously. The Alliance so far has arranged 10 of those, as well as 40 simultaneous two-way loops and three-way exchanges.
“It’s brilliant on so many different levels, and yet it’s so simple,” said Dr. Jeffrey Veale, Murray Thomas’ transplant surgeon and director of the University of California, Los Angeles Kidney Transplantation Exchange Program, which has been part of more than 30 chains since 2008. His program contracts with a different matching service, the National Kidney Registry, which lined up the Thomases’ chain.
Murray Thomas’ new kidney came from an altruistic female donor in Illinois who started the chain with the goal of helping multiple people. She and three other altruistic donors helped launch Loyola University Medical Center’s Pay-it-Forward Kidney Donation Program in March. News about it has prompted 21 more good Samaritan donors to step forward in that Chicago region.
Murray Thomas could receive the generous woman’s kidney because his sister promised to donate to the next person in the chain — a man in Utah. In turn, that man’s wife donated a kidney for a New Jersey man. And on it went.
Such chains could theoretically go forever, but typically they include a half-dozen pairs. Some chains end when the last willing donor has typeAB blood, since that kidney can go only to someone else with type ABblood. Few such recipients would be in the pool for a donor chain because people of any blood type can donate to someone with ABblood, so the needy person likely wouldn’t have an incompatible donor. In such cases, the donor’s kidney goes to an eligible person on the cadaveric kidney waiting list, explained Veale.
How it worked
Some matching networks, such as the one Rochester joined, prefer that the donors travel to the recipient’s city for surgery. Others, such as the National Kidney Registry, send the kidneys, unaccompanied, on ice in specially labeled white cardboard boxes on commercial flights. “They basically go in with the luggage,” Veale said of the precious cargo.
Jeananne Thomas chose to travel to Los Angeles to recover near her brother. Their parents, Merrillan and Woody Thomas of South Bristol, Ontario County, went, too, to help take care of both of them.
Merrillan Thomas said she was full of admiration “for Jeananne’s courage and willingness to go through the physical pain and disruption of her life that the transplant operation entailed in order to give such an incredible gift to her brother.”
Living donors must pass lots of tests. Their kidneys transplant better than cadaveric kidneys, said Marroquin.
Marroquin said live donors can live fine with just one kidney. If illness or injury does hurt a donor’s remaining kidney, he or she moves to the top of the list of people needing a kidney transplant, under guidelines set by the United Network for Organ Sharing, the federally run program that regulates all transplant programs in the country.
Jeananne Thomas’ minimally invasive surgery May 4 required five tiny incisions in the lower abdomen wall to insert instruments and camera equipment to see, dissect, clip and staple. Her freed right kidney — about the size of a fist — was then removed through a three-inch lower incision. She was in the hospital overnight and in pain for about a week. Today she still has some twinges, but her energy level is almost back to normal. She needed three weeks off work to recover, during which she got short-term disability pay. She’s gradually returning to full days as human resources and accounting operations manager at Eastman School of Music.
She said she’s glad she donated a kidney, “because my brother got his life back, and somebody else did too. To me, the whole chain process is even cooler because I even helped two people.”
Murray Thomas was in the hospital four days and then had to recover at home for two months, so he’s just starting to experience new freedoms. He was cleared to return to his job at a book store this week. He said his sister’s surgery seemed worse in terms of pain.
“I’m very proud of her, very happy and kind of amazed that she did it,” said Murray Thomas, who’s 52 and is also a poet and writer. “I do feel physically so much better.” During the years of dialysis, he never felt good, he said. “Doing the laundry would wear me out for the rest of the day.”
Paying for it
Hoping for a transplant was like playing the lottery but only having the same numbers to play each time, he said. The donor chain option is a whole new lottery with many more chances to win, as long as you have a healthy pal willing to share. Murray Thomas wishes that people who wouldn’t consider being a living donor would at least sign up to be a willing organ donor upon death.
Kidney transplant chains continue to evolve. A disagreement between hospitals over payment called a disappointing halt to the Thomases’ chain when their surgeries were originally scheduled before Christmas 2009. The transplant hospitals in the National Kidney Registry have since hashed out a financial agreement, Veale said.
Health insurance plans typically cover kidney transplants and the recipient’s plan pays for the live donor’s surgery. But insurers don’t all cover the donor’s required pre-transplant testing, which costs $3,000 to $5,000, or travel, said Reece, of the Ohio-based match program.
Transplant centers and private insurers don’t want to pay for testing incompatible donors who might not end up donating to one of their patients. Reece’s Alliance is trying to convince the federal government — the biggest payer of dialysis and transplant services since people with permanent kidney failure are eligible for Medicare — to automatically pay for donor evaluations. A transplant saves more than $200,000 per patient over five years, compared to the cost of dialysis, said Reece.
Murray Thomas, now free of dialysis, hopes to have another book of poetry published next year and to travel for poetry readings. Now he has the flexibility to get in the car and go wherever, without needing dialysis appointments lined up every two days: “I’m looking forward to hitting the road somewhere.”
Perhaps eventually one destination will be the Chicago area — to meet the woman who provided his healthy kidney. He hasn’t yet learned her name, but he’s been told that she’s interested in talking once the transplant organizations finalize permissions and put them in touch.
CSWINGLE@DemocratandChronicle.com
FOR MORE
# United Network for Organ Sharing
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www.transplantliving.org/livingdonation# Alliance for Paired Donation
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www.paireddonation.org# National Kidney Registry
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www.kidneyregistry.orgKIDNEY TIMELINE
1954: The first successful kidney transplant was between identical twin brothers.
1983: Cyclosporine was introduced, the first of a number of drugs that effectively treat organ rejection by suppressing the immune system. Non-genetic relatives such as spouses were allowed to donate.
1991: Kidney loops — a circle in which every recipient brings in a loved one willing to donate — began with a two-pair kidney swap in Korea. These are typically all done on the same day and are limited in size by the number of available pairs and operating rooms.
2007: Kidney chains — also known as a non-simultaneous, extended, altruistic donor chain orNEAD chain — began. An altruistic donor starts the chain and allows a domino effect where each transplant triggers a donation by a loved one of the recipient. They don’t have to occur on the same day.
ORGAN DONORS
New York has one of the lowest rates — about 18 percent — of people who’ve signed up to be an organ donor at death, probably because it’s among few states that still require people to sign up on paper with a signature through the Department of Health. A new law has passed the state Assembly and Senate to allow online enrollment, which would require changing the current computer system, but Gov. David Paterson has been unwilling to sign any new laws that would cost money. State Assemblyman Richard Brodsky has proposed a law that would assume everyone wants to donate organs at death unless they opt out on their driver’s license. For more about organ and tissue donation upon death, call (800) 810-5494 or seehttp://donatelifenys.net.
http://www.zimbio.com/Why+Donate+Organs/articles/PIji0j8h1hj/DONATE+LIFE+ORGAN+DONATION+AWARENESS+ROCHESTER
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