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Format: 04/23/2014
Format: 04/23/2014


Sharon Herald: Woman trying to recruit kidney donor

Friday, November 12th, 2010

 Family can’t help in needed transplant
By Joe Pinchot
Herald Staff Writer

Darlene Cook skooches off her chair to reach down to get a pamphlet from under a stand, then sits back in her chair. It’s a simple exercise, one people perform day in and day out, but it’s taxing for a 
woman with polycystic kidney disease.
The West Salem Township woman is breathing much harder when she returns to her seat than she was when she leaned over.
“As you can see, I get winded easily,” she said. “Just by leaning down and getting up, it puts enough pressure on my lungs.”
In PKD, fluid-filled sacs, called cysts, develop on the kidneys. The cysts eventually sap the kidney’s ability to function.
Ms. Cook’s left kidney is not, or is barely, functioning, and her right kidney is gradually losing its function. She is on the verge of 
needing dialysis and is on a personal quest to find a kidney donor before she reaches that point.“Having a live donor is an ideal situation for our patients,” said Dr.Kusum Tom of Allegheny General Hospital Transplant Center in Pittsburgh.
Dr. Tom could not talk specifically about Ms. Cook, but Ms. Cook has elected to have a transplant, should a donor become available, at AGH.
Family members are the most likely candidates for live donations, but Ms. Cook does not have that option. Her children and siblings either 
have PKD or medical conditions that preclude organ donation.
Ms. Cook is not sick enough to be put on a live donation waiting list, but people can investigate whether they might be compatible matches 
for her. If a suitable donor is found, she could receive a kidney without being on a waiting list.
The 52-year-old woman was diagnosed with PKD in the spring of 1998.She was tested for the condition after simple roughhousing between her 
twin nephews resulted in one of them urinating blood. The boy was taken to a hospital, where doctors found he had PKD. Because PKD is 
genetic, other family members also were tested. Ms. Cook was not showing symptoms then, but they emerged over time.
She stopped working as a school bus driver in December 2008, because the motions of driving and reaching over to open and close the bus 
door became too painful. The pain is worst in her sides.
“My flank pain is increasing daily, enough that I’m not sleeping through the night because of it,” she said. She can’t take pain medications because of her reduced kidney function.
“Doing nothing or doing very little is the best thing at the moment,” she said of treating her pain.
 Doctors check for swelling, which would indicate that she is retaining fluid, a sign of kidney malfunction, and she battles bouts of nausea. She undergoes regular blood tests to determine her Glomerular Filtration Rate, a measure of kidney function. Normal GFR is 60 or higher, while Ms. Cook’s has fallen to 25. Once it dips to 20, she will be put on a kidney donor waiting list, she said.
Donor waiting list patients usually receive organs harvested from people who have recently died.
The only medication she takes is to control her blood pressure.
“The higher BP overworks your internal organs, which overworks your kidneys,” she said. “My kidneys are about double the size of normal kidneys.”
On Thursday, Ms. Cook is scheduled to meet a vascular surgeon to discuss if she would be a better candidate for a fistula in her arm or a catheter in her neck or shoulder area. Either device is needed for hemodialysis, which removes waste and excess water from the blood and returns the cleansed blood to the body.
Doctors insert a fistula or catheter prior to the need for dialysis because the patient has to be healed from the insertion surgery before the start of dialysis, she said.
“It really scares me,” Ms. Cook said of dialysis. “I know there are some people it really hurts and, for other people, it’s a breeze.”
Doctors like to keep patients off dialysis as long as possible, and do not view dialysis as an end in and of itself, Dr. Tom said.
“Dialysis is just so that we can get our patients to transplant,” she said, noting that dialysis is done three times a week for several hours at a time. “Most people (on dialysis) say they just feel horrible and they can’t do anything else,” Dr. Tom said.
Ms. Cook has been putting out the word through church and social functions that she needs a kidney in hopes that one can be found before she becomes very ill.
“I’ve been pushing and pushing,” she said. “Hey, I need a kidney,” and “Would you consider getting tested?”
About 40 to 45 percent of kidney transplants involve live donors, Dr. Tom said. Ms. Cook is an A-positive blood type, so a donor would need to have A-positive or O blood, she said.
The first step in getting tested is answering questions from Kimberly Meyer, the manager of the live donor program at AGH Transplant Center. Ms. Meyer will go over the prospective donor’s medical history, particularly dealing with cancer, kidney stones, heart problems and diabetes, and that often shows there would be a problem with donation.
The next step would be to mix some of the donor’s blood with Ms. Cook’s to gauge compatibility. If the donor passes that test, he or she is subjected to a battery of medical tests.
Prospective donation can be a commitment of time, to say nothing of the three to eight weeks of recuperation after surgery. The financial demands on a donor from being off work probably put many people off live donation, Ms. Cook said.
“Our rate-limiting thing is donors,” Dr. Tom said. “Our amount of patients who need kidneys is rising, but our number of donors is not.”
Dr. Tom said AGH Transplant Center performs about 75 kidney transplants a year, the Veterans Administration medical system does about 50 in the Pittsburgh region, and UPMC performs another 150. The longer a potential recipient is on a waiting list, the higher up the list they go, Dr. Tom said, although the recipient must be healthy enough to withstand the surgery and post-operation medications they 
must take for life, including anti-rejection agents and antibiotics. If kidney recipients? new organs are not rejected, they generally can resume the same level of functionality as before they got sick, Dr. Tom said.
 “Part of the reason we do this is so people can go back to their lives,” she said. “They can do what they did before.” As for life expectancy, “They will have this kidney for as long as 
they take care of it,” Dr. Tom said.
Ms. Cook faces her condition with faith, humor, and a respect for her body that has kept her otherwise healthy.
But, she said, she will keep pushing and pushing.
 “I need a kidney,” she said.


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