The Middletown Press (Middletown, CT)
Need an organ? Tell everyone
Spreading the word helps find matching donors for transplants
NEW HAVEN >> If you have kidney or liver disease, you may be shy about letting people know you need a transplant.
Don’t be. For some potential donors, it just might take a nudge to make the decision and save a life.
And even if would-be donors are not a match, they can still help their family member or friend, through an organ-exchange program.
“Most of the time, people find a loved one, a friend, some kind of friend of a friend that they may have known, and when they show interest to be an organ donor, a significant number of times they can be a donor,” said Dr. David Mulligan, director of Yale New
Haven Hospital’s Transplantation Center.
The key is getting the word out, which many people in need of a kidney or liver are reluctant to do, Mulligan said. For someone with kidney disease, that can mean five years on dialysis, moving slowly up the waiting list, until an organ from a deceased donor is available and is a match. For someone with end-stage liver disease, the time left may be short.
While “close to 80 percent of the patients on the [kidney] wait list today have a donor available for them,” the wait is much longer and more difficult for those with liver failure. “Only about 20 percent of the people on the waiting list for a liver transplant have a donor waiting for them,” Mulligan said.
That makes it vital to let people know if you’re in need, he said. “If they just talk to family, friends, loved ones, even people from church, their neighborhood, all kinds of people, it’s significantly likely that they could have a living donor just through that route,” Mulligan said.
Many people can find a match with someone they know, but it’s not essential, Mulligan said.
“Where it gets special is this concept of paired exchange,” he said. “What happens with a paired exchange is that a donor who would like to donate for a loved one or co-worker or whoever they know may not have the right blood type or they may not be immunologically compatible. The donor doesn’t need to say, ‘It won’t work for me; we have to find somebody else.’”
In a paired exchange, the donor gives a kidney or part of a liver to someone else on the waiting list, and their family member or friend receives an organ from someone with whom they’re compatible.
“That same concept can carry on for long chains,” in which donors and recipients are matched until all receive compatible organs.
“I think one of the records that I can recall was a 38-member chain,” Mulligan said. “It can even stretch across the whole country.”
Multiple swaps can even occur in one place. On March 3, 2015, Mulligan and other surgeons at Yale New Haven Hospital transplanted kidneys from four women to four men in eight nearly simultaneous surgeries. Three of the donors were wives of three of the recipients, but none donated her kidney to her own husband.
“It’s very common for these chains to be started by someone who says, ‘I want to donate a kidney,’ an altruistic donor,” Mulligan said.
Mulligan compared donating an organ to a stranger to a firefighter running into a burning house. “It doesn’t get more heroic than that,” he said.
Many donors, however, come forward because they know of someone in need. Middletown Mayor Dan Drew responded when he heard a city resident needed a kidney. He had been a blood donor and was on the blood marrow donor list, but hadn’t seriously considered donating a kidney until he heard of Olivia DiMauro’s case.
“I have O-positive blood myself so I decided to get tested.” Since O-positive is the most common blood type, donors like Drew are in demand.
Drew, a Democrat who is exploring a campaign for governor, said he feels “great” since the Aug. 25 surgery. “It’s never as bad as people say it is,” he said. “The first couple weeks you’re a little sore … You’re a little tired for a little while and you have to be careful about the amount of weight you lift.”
Drew said he was warned that at about two weeks after the surgery he would feel better — but that he should be careful, because he was still healing.
“I was very mindful of those words of wisdom … I felt better a lot faster than I expected to,” Drew said. Otherwise, he was told to eat right, drink plenty of water and “take care of yourself.”
“I would do it over a thousand times if I could,” Drew said. “It only works for everybody if, when anybody needs it, there’s someone else available.”
Drew is feeling so well that he and his wife, Kate, have been learning the foxtrot, which they’ll dance at Donate Life Connecticut’s annual fundraising gala on March 3. “It’s a good cause and when it came up, I figured you never grow if you never go outside your comfort zone,” he said.
DiMauro said in an email that she was lucky because, even though her kidney function was down to 2 percent, she didn’t have to go on dialysis, as her mother and sister have had to do.
“My doctor, Dr. David Miner, in Middletown where I live encouraged me to try and find a living donor,” DiMauro wrote. “He said if I didn’t I would be on a waiting list for what could be 10 years. He knew I felt uncomfortable about it and always told me ‘if people don’t know they can’t help you.’”
She said Miner told her there would be greater benefits to finding a living donor. “They can do more testing on that person beforehand” and the kidney will “last a lot longer” than one from a deceased donor, she said.
DiMauro publicized her case on Facebook, in the Middletown Press and through friends. Several people went through testing, but were not a match, she said.
“The importance of living donor is that so many more people can get off the ‘list’ if more people step forward to donate,” DiMauro wrote. “I was told that just by my Facebook page someone went to Yale to donate to someone. That was a wonderful feeling.”
She said she was off pain medication after two weeks and returned to work after two months.
Senate President Pro Tem Martin Looney had no trouble getting the word out that he needed a kidney, given his prominence in state government. But he was surprised when his friend, Superior Court Judge Brian Fischer, told him that he would be Looney’s donor.
Meeting at the funeral of a mutual friend, Fischer made the offer, asking Looney, “‘How’s Dec. 20 for you?’ … I said if it’s good for you, it’s good for me,” Looney said. Two weeks after surgery, he was at the state Capitol, being sworn in to his 13th term representing parts of New Haven, Hamden and North Haven. He’s been the Democratic Senate leader since 2015.
Looney went into kidney failure because of medication he takes for a form of arthritis known as ankylosing spondylitis. While his case brought him extensive news coverage, Looney also put the word out at St. Mary and St. Bernadette churches. “Given my position of course it was easier to do than it would be for others,” Looney said, but he said he was told “to get out there on social media and to advertise it on Facebook. Contact any civic or church group” that you’re a part of.
Mulligan said there are about 850 people on Yale New Haven’s kidney transplant waiting list, about 30 percent of whom “are inactive because they have to lose weight or have some coronary issues that have to be squared away.” Surgeons performed 146 kidney transplants in 2016, “which is the most that we’ve ever done” and the most in New England last year, Mulligan said.
They also performed 34 liver transplants. “We’ve had two altruistic donors donate a small part of their liver for a baby,” he said, but “it’s much less common for somebody to volunteer to go through as major an operation for a liver resection,” he said. (Liver transplants are possible because, after part of the liver is removed, the organ regenerates itself.)
The great advantage of having a living donor is “you step out of the line; you’re getting a transplant,” Mulligan said. “That’s the beauty; there is no wait anymore. You’re setting the date, you’re getting freedom from kidney failure when you and your donor are ready to go.”
Another advantage of living donations is “they work immediately, they have the best outcomes and they have the longest … length of function for both liver and kidney. That’s why it’s so important to us.”
Donating a kidney requires only laparoscopic surgery with “a small incision down at the bikini line” and a hospital stay of one or two days, Mulligan said. Recovery takes two to four weeks. For the recipient, “because they’re immunosuppressed and it’s a bigger incision … it takes four to six weeks for the recipient to be fully recovered,” he said. Liver surgery requires a longer recovery time.
Matching donors to recipients involves two factors: blood type and the antibodies that a recipient has developed. A patient can acquire antibodies in several ways: “a recipient who has been through a previous transplant or has had major surgery … or a woman who’s given birth to several children,” Mulligan said. Any of these events would expose a person to proteins in the blood that they didn’t have before, causing him or her to build up antibodies, he said. In that case, “your antibodies are going to rev up and reject that organ,” Mulligan said. Someone who has built up antibodies is called “sensitized,” he said.
Kidney and liver donors are tested to see if they are suitable for such recipients. “Our allocation system for kidneys has been modified to help people who are really highly sensitized … and give them access to donors from across the country, so they have a chance to find a needle in a haystack,” Mulligan said.
“Every time a kidney comes through, they run it through the computer system in Richmond, Virginia, at UNOS headquarters.” UNOS, the United Network for Organ Sharing, is a nonprofit organization that coordinates organ transplants — a record 33,600 in 2016, according to its website.
Mulligan said some people do not donate because they fear they’ll lose their job, but organ and bone marrow donations are covered under the Connecticut Family and Medical Leave Act. Some employers will give paid time off to donors, and the National Living Donor Assistance Center is available to help with travel and other expenses. Mulligan said donation is covered by the recipient’s health insurance policy.
Mulligan said risks of donating organs are low, but it’s important to remain under a doctor’s care. Followup care is provided by the Yale New Haven Center for Living Donors. The mortality rate for liver donors is one in 500 procedures, he said; for kidney donors it’s one in 1,700 transplants.
More common side effects for kidney donors are high blood pressure and protein in the urine. Risks from liver donation include “bile leaks, wound infections, hernias and … fluid buildup around the lung that will typically go away over time,” Mulligan said.
He said a Johns Hopkins study revealed a greater risk of renal failure in African-American donors because blacks tend to be more susceptible to high blood pressure.
Donors who do not take good care of themselves and have high blood pressure or diabetes are at greater risk of developing kidney failure themselves.
“If that happens, of course the system will give them high priority to get a kidney immediately when they have a problem because, if they’ve been a donor, they certainly would get a kidney as a result,” Mulligan said.
“There is a slight increased risk that they may have problems if they go down to one kidney, but the facts are that the vast majority of these are the healthiest people in society and they have the lowest risk of developing renal problems as compared to the average person in society,” he said. “The key is not so much you … having renal insufficiency and kidney problems yourself. I think the key is, if we follow you medically and take good care of you and you manage your blood pressure and you manage your weight and you take good care of yourself, the likelihood of [kidney disease] is infinitesimal.”
For more information on becoming a living kidney or liver donor, call 866-9253897 or 203-727-1110.