By Timothy B. Wheeler, The Baltimore Sun
3:52 PM EDT, September 15, 2012
Joan Corbin's day is governed by the humming box in the alcove off her living room. For nearly an hour in the afternoon and nine hours at night, the Smith Island resident must tether herself to a suitcase-sized dialysis machine to get rid of the waste building up in her body.
A healthy person's kidneys would perform that vital chore. But Corbin's gave out long ago, after being damaged by infections in her youth. She got a new kidney from her older brother 13 years ago at the University of Maryland Medical Center, which restored her health for a time. But the replacement faltered and then failed last year, putting the 44-year-old in the hospital for a week, back on dialysis and hoping against hope for another kidney.
"People think once you're transplanted it will last forever," said Corbin wryly. "Actually, the time [my doctors] told me, it's eight to 10 years. So I've done really well."
But she's not doing that well now. There's no one else in her immediate family able to give her another kidney, so she got on the waiting list for a new one nearly two years ago. She's been waiting for a match from a dying donor or, better yet, from an unrelated living one.
And if joining the growing ranks of people needing a second kidney transplant weren't unfortunate enough, her plight is further complicated by living in a tiny community in the middle of the Chesapeake Bay, where going to the doctor or drugstore requires a 45-minute boat ride, weather permitting. It's where she was born and raised and has lived the life of a waterman's wife — and healthy or not, it's home.
Unless something breaks her way, she could be waiting a long time. The number of kidney transplants has grown sharply since the first was performed in 1954, but so have the number of people needing a transplant. There are more than 90,000 people nationwide on the waiting list for a new kidney, according to the Organ Procurement and Transplantation Network. About 12 percent of them, like Corbin, are in line for a repeat transplant.
"Second kidneys are becoming more and more common as transplantation becomes more common," said Dr. Jonathan Bromberg, head of the transplant division at the University of Maryland Medical Center, and a professor of surgery at the medical school.
There are many patients whose kidneys have "lasted five, 10, 15 or 20 years" who need another transplant, he said.
Even kidneys from close family members can get rejected by a recipient's body or gradually wear out, said Bromberg, who is not Corbin's physician. Diabetes and other diseases contribute to the deterioration, he added.
Corbin has diabetes, which she said she developed after her transplant. She said her doctors told her it was likely brought on by the immunosuppression medications she's had to take to keep her body from rejecting the donated kidney.
Corbin's health issues are compounded by the lack of medical care for the 240 year-round residents on Smith Island. There are no doctors, only volunteer emergency medical technicians and a nurse who visits the island about once a month.
She has to take the ferry twice a month to have her blood tested and see doctors in Salisbury. But, while many dialysis patients must travel to a clinic for treatments, Corbin has been able to treat herself at home.
She undergoes peritoneal dialysis, using the lining of her abdomen to filter her blood, rather than the more common — and complicated — hemodialysis, in which the patient's blood is cleaned directly.
Through a tube permanently installed in her belly, Corbin pumps fluid into her body containing a mixture of minerals and dissolved sugar designed to draw wastes from her bloodstream. The solution stays there for several hours until she drains it off and replaces it with fresh fluid. Needing to exchange three gallons of fluid a day, she can do most of it at night while sleeping but needs an extra, short session in the daytime.
Starting each day's treatment is a time-consuming, meticulous process. She dons a surgical mask and repeatedly washes her hands while preparing the machine and attaching all the tubes. Infection is a big fear, and she got one recently, though it seems to have been knocked back by medication.
"The machine is what's keeping me alive," she said. "So I'm doing pretty well, considering that."
But even before her recent infection, she was having trouble. She used to join other watermen's wives picking crabmeat for sale in the community's cooperative kitchen, but said she lacks the strength for that now. Corbin said she experiences periodic bouts of high blood pressure and muscle cramping whenever her system gets out of kilter. And she feels fatigued all the time, the result of severe anemia she's also battling.
The daily treatments seem to be losing their effectiveness, she said, and she's worried about what she can do to hang on until her number comes up on the kidney transplant waiting list.
Dialysis is a life-saver for many, Bromberg said, and many can carry on more or less normal lives for years. But those on dialysis are at risk for potentially serious infections and other health problems, particularly heart attacks and strokes.
While there were nearly 17,000 kidney transplants performed nationwide last year, according to the transplant network, nearly twice as many people were added to the waiting list. Donations have grown, but aren't keeping pace with the increase in kidney disease and failure, Bromberg said.
Nearly 5 percent of those on the list died waiting and half again as many were stricken from the list because they'd become too sick to survive the procedure, according to the network.
A patient with Corbin's blood type can wait four to seven years for a transplant, Bromberg said. "That's quite a substantial amount of time for someone to be hanging out on dialysis waiting for an organ to be available," he said.
Corbin said her doctors urged her to switch to hemodialysis, which cleans a patient's blood directly and may be more effective. It can be done at home, but a helper is needed. Eddie, her husband, is partially disabled from a stroke, which ended his career as a waterman, at least for now, and also limits his ability to help.
She's tried hemodialysis before, however — when her replacement kidney first failed — and is not eager to return to it. Three times a week, she made the boat ride from Smith Island to the mainland and then drove to Salisbury to a dialysis center there. The treatment drained her strength as well as her blood, and all the travel added to her fatigue.
"By the time I'd rested up it was time to go back," she said.
Moving to the mainland to be closer to the dialysis center doesn't seem to be an option, either, since their income is limited. And it would mean leaving behind the close-knit network of family and island neighbors who help the Corbins out. Relatives carry the monthly shipments of dialysis supplies from the dock to their house, for instance.
"It's not easy living here, especially if you have to see a lot of doctors, like we do," she said. "But it's a good place to live. We know each other and depend on each other. We have lots of family here."
Family and friends have tried to find a donor, with appeals placed in local newspapers, on Facebook and circulated among church groups.
Despite a few responses, nothing has panned out.
"I had a man from Crisfield [call] that I didn't even know," Corbin said. "He'd seen our ad in the Crisfield Times. He was real excited. He wanted to give me a kidney."
Though he was the same blood type, his tissue didn't match. "He was so sad, I could tell when he called and gave me the bad news," she said.
Though Corbin doesn't complain much, Denny Bradshaw, who lives nearby, said his sister is "having a rough time of it. There's not many days she feels good."
Bradshaw, 62, said he's glad he was able to help his sister by giving her his kidney. She was not coping well with extended dialysis back then, either.
"It got down to the nitty gritty, something had to be done," he said. "Joan was going downhill fast. I just jumped in and did it."
Though hobbled by chronic back problems, he said he's had no complications from his act of generosity, nor any regrets.
"I don't know why there's not more donating kidneys," he said. "It's no big deal."
But for the recipient, he said, "It's a big thing. … You're saving somebody's life. It makes you feel like a hero."
Donors do fine with one kidney, medical experts say, in large part because doctors screen potential donors carefully to weed out any with underlying health problems or a family history of diabetes and other diseases that could weaken the remaining kidney.
Still, any surgical procedure comes with risks, advocates say. There also are other concerns, such as getting time off from work to recover and making sure health insurance coverage will not be affected.
Most transplanted kidneys come from people who've volunteered to donate them when they die — though for a variety of reasons those organs don't last as long as those from a living donor.
In Maryland, as in many other states, it's possible to sign up to be an organ donor either online or when getting or renewing a driver's license. There are no health or financial risks to discourage such generosity, as there may be with donating a kidney while alive. The number of such organ donor designations has risen nationwide, and about half of Maryland's licensed drivers have signed up.
But only 2 percent or 3 percent of those who've agreed to donate their organs die in circumstances that make it possible, said Jennifer Gelman with the Living Legacy Foundation, which handles Maryland's donor registry. For that reason, the foundation keeps campaigning to get more people to pledge to give the "gift of life" upon their death.
Corbin's doctors haven't told her how long she can continue on dialysis, and she hasn't asked.
"That's not something I want to know," she said. "I know after a time it weakens your heart, they did tell me that."
Despite it all, Corbin said she hasn't given up hope. She leans on the faith that runs strong in many islanders.
"A lot of people here depend on God, and he sees us through each challenge," she said. "That's what I've come to believe, and will always believe."
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