Experts: Crucial to get on waiting list as soon as possible
Aaron Cannon believes there’s a good chance he would have a new kidney by now.
Problem is, he didn’t realize he could get listed for a transplant at the early stages of his illness.
Even though he was diagnosed with kidney disease five years ago, it wasn’t until two months ago that Cannon completed the required evaluation to be listed.
“I could’ve gotten on the list sooner,” said Cannon, 29, of Iowa City, Iowa, who was diagnosed with a rare kidney disease, focal segmental glomerulosclerosis. “I”m still a little bit annoyed about that.”
Faced with sudden symptoms brought on by kidney disease, patients often rely on doctors for education about potential treatments. As they cope with the shock of such a serious illness, they frequently are confused and sometimes don’t know what questions to ask, said Dr. Martha Pavlakis of Harvard University’s Beth Israel Deaconess Medical Center in Boston.
“Some people think of a transplant and they think of Frankenstein. … They are horrified,” she said. “I feel like somebody needs to get out there and educate the providers, doctors, nurses, patients and the community at-large about transplantation and how it can improve your life.”
Almost all kidney patients should be evaluated for transplants, said Pavlakis, who believes patients should be referred before they “start feeling the effects of kidney failure.”
Two months ago, Jerry Mitchell of Mt. Oliver started the often lengthy process of a transplant evaluation. Mitchell was diagnosed with kidney disease in May 2005 and started dialysis treatments in February 2006.
“The main focus was, ‘Let’s get you on dialysis first,’ ” said Mitchell, 38.
Mitchell and Cannon said their lives would be different if they had been listed sooner.
The dialysis treatments interfere with Mitchell’s ability to work and manage his cleaning business. He goes to the Fresenius Clinic in Mt. Oliver on Tuesdays, Thursdays and Saturdays, staying longer than three hours for each treatment.
“It’s hard to find a nice job that you can do a few hours a week,” he said.
Even when he gets on the list, Mitchell realizes he will have to wait. Kidneys are allocated based on a point system that considers factors such as time on the list, blood and tissue type, and body size.
Cannon said the first nephrologist he saw in 2004 when he developed symptoms such as fatigue loosely mentioned transplantation, but Cannon didn’t realize he could get on a wait list before starting dialysis. The treatments, which he started in December three times a week, have caused dehydration, infections and intestinal problems. He was hospitalized in January for pulmonary embolism, a blood clot in the lung that is a risk factor among patients with chronic kidney disease.
“There’s a decent possibility I could very easily have a kidney and would not have to miss so much work and so much schooling, and wouldn’t have to spend Halloween and the Fourth of July away from my kids in the hospital,” he said.
Cannon was listed two months ago at the University of Iowa, about six months after starting dialysis. That goes against evidence that shows patients’ odds of undergoing successful kidney transplant surgeries start dropping as soon as they start dialysis.
Patients typically start dialysis on the last of five kidney disease stages, when their kidneys reach less than 15 percent of their function, measured by a test called glomerular filtration rate, or GFR for short. Federal transplant rules allow patients to be listed for transplants when their kidneys are working better — at about 20 percent of their function.
Even if more patients are informed about transplant options, not enough organs exist for everyone to receive one, said Dr. Paul Palevsky, a nephrologist at the Pittsburgh VA Healthcare System and president of ESRD Network 4, one in a network of nonprofits that oversee quality in kidney failure treatments.
“The real issue is not, ‘Are patients being adequately referred?’ ” Palevsky said. “The real issue is, ‘How do we get enough organs for our patients?’ ”
If you know there’s going to be a long wait, you need to get in line as early as possible, said Dr. Herwig-Ulf Meier-Kriesche, renal transplant director at the University of Florida’s Department of Medicine.
Patients might seek to get kidneys from live donors such as relatives or friends. Last year, nearly 6,000 people received kidneys from live donors and about 10,500 received kidneys from deceased donors.
“If you miss that opportunity, if somebody doesn’t refer you for transplant and you just get referred at the time you actually start dialysis or, even worse, a couple of years later, that means you have potentially missed out on four, five, six years of waiting time you would have accumulated,” Meier-Kreische said.
Another factor to delayed transplant referral is that dialysis can seem an easier option until the patient realizes how exhausting and time-consuming the treatments can be.
Katia Daley, 38, of Kennedy started dialysis before deciding to put her name on the kidney transplant wait list. In July, she received clearance to be listed at the University of Pittsburgh Medical Center.
Daley, a Giant Eagle bakery worker, said she couldn’t stomach the idea of transplantation. But the monotonous routine of dialysis made her realize she couldn’t spend the rest of her life going to dialysis clinics.
“I’m too young to be on (dialysis) for a long time,” Daley said. “It’s a relief because, sooner or later, I’m going to get the phone call and I can go over and get the kidney.”
Dr. Angelo Lupariello, medical director of a clinic at Ohio Valley General Hospital in McKees Rocks where Daley goes for treatments, said he encourages all patients to go to UPMC or Allegheny General Hospital for transplant evaluation.
“We encourage transplants,” Lupariello said. “It’s the only way to stop coming here three times a week for dialysis.”