Siblings await kidneys [The Hawk Eye, Burlington, Iowa]

Dec. 31--FORT MADISON- If polycystic kidney disease did not run in her family, Angie Pilkington said she would donate one of her kidneys to her father, Raymond.

"Because the disease runs in my family, my doctors told me not to donate my kidney," Pilkington said.

Unfortunately for Raymond, he will have to keep looking for a kidney.

He also has some company, because his two siblings also are in the same situation.

The three siblings -- William Pilkington, 59, of Keokuk; Raymond, 55, of Fort Madison; and Janet Keller, 52, of Niota, Ill. -- said they are on a waiting list for a kidney transplant and have been waiting for more than two years.

The three siblings suffer from polycystic kidney disease, an inherited disorder in which clusters of noncancerous, fluid-filled cysts develop within the kidneys.

The cysts vary in size, and, as they accumulate more fluid, they can grow very large.

According to the Mayo Clinic, a common complication of PKD is high blood pressure. Kidney failure is another common problem for people with the disease.

Side effects of the disease include back or side pain, headache, increased abdomen, blood in the urine and kidney stones.

They all inherited the disease from their mother, Zona. She spent 14 years on dialysis before dying in 1989. She was in her early 60s.

"We have an older brother and a younger sister," Raymond said. "They have the disease, but it's laying dormit. It may never affect them."

Shelly Brighi, kidney donor coordinator with the University of Iowa Organ Transplant Center, recently said patients looking for an organ donor are placed on a national waiting list though the United Network for Organ Sharing.

"If it's a local donor, the organ is offered to local transplant centers first before it's offered to regional transplant centers, then out to the national list," Brighi said. "Everything is done on one list."According to the Iowa Donor Network, Iowa's sole organ procurement agency, more than 112,000 Americans are waiting for a life-saving organ transplant. More than 640 of those people are Iowans. However, there were only about 50 organ donors from Iowa last year.

Recipient selection for an organ on the national list is based on blood type, body size, medical urgency and length of time on the waiting list.

"All the transplant centers in Iowa have agreed to look at whatever is greater -- the time they were put on the list or the amount of time they have had on dialysis," Brighi said. "That is unique to Iowa."

The heart, liver and lungs are matched by blood type and body size. In matching the pancreas and kidneys, genetic tissue type also is considered.

In other words, if a kidney becomes available, the sibling who has a better match will get the kidney.

"Everyone has O positive blood types," Raymond said. "We'd like to get an O positive to match."

Raymond said he didn't know he had a problem until roughly two-and-a-half-years ago, when he noticed climbing steps was not as easy as it used to be.

"I knew I had the disease, and I knew the day would be coming when I would need dialyses," he said. "When I would climb the stairs, my legs were getting real tired. Climbing three flights of stairs is nothing to me anymore, since I'm on dialysis."

Raymond added he uses his dialysis in his own home. He said it costs $300 a day to use it, however his insurance pays for most of the costs.

"I'm on it every day for eight hours, and I do it at night while I am sleeping," he said.

William was having trouble with his back a little over two years ago. When he went to the doctor -- around the same time as Raymond -- they told him he also needed to get on dialysis.

William gets his dialysis in Keokuk, and it costs him about $500 each time he uses the machine, which is three times a week. His insurance also helps him with the costs.

While Raymond and William are on dialysis, Keller said she is fine enough to live without it. However, her name is still on the kidney list.

Despite being on dialysis and waiting patiently for a kidney transplant, the three siblings continue to live their lives.

<p>Keller is an employee at Winegard in Burlington, Raymond works at DuPont in Fort Madison, and William works at Corps of Engineers Lock and Dam No. 19 in Keokuk.

"People think when you are on dialysis you are disabled," Raymond said. "I haven't seen where I had to be disabled. I couldn't be disabled and sit around doing nothing."

The siblings would like to accept two kidneys apiece, however, they can each receive only one kidney, if it's a match.

"We are all looking for one kidney because you can live off one kidney," Raymond said. "If you lose one eye, you can still function with the other eye. Same with kidney and lungs. The good lord gave you two, so if you lose one, you have the other one."

William said he has a daughter, Jenifer, 33, who has the disease. Keller has two children but added she is unsure if any of them have PKD.

Raymond said Angie has not shown any signs of the disease.

Angie, 32, said she feels fine, but added she plans to get tested for PKD.

For more information on kidney transplants or to donate a kidney, call the University of Iowa Organ Transplant Center at (319) 356-4778 or go online at www.iowadonorregistry.org/.

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(c)2011 The Hawk Eye (Burlington, Iowa)

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