One donated kidney, not one regret

[okarol]

February 17, 2008

One donated kidney, not one regret

It started with a television show.

Nicole Hruska had intently watched a segment on "CBS News Sunday Morning" about the Web site MatchingDonors.com, where patients needing organ transplants post their individual pleas.

The goal: To find a match among the living, potential donors signed up on the site - individuals willing to give a piece of their bodies to improve the life of a stranger.

"I thought, 'Wow, that is really neat," said Hruska, from Des Moines. "I thought about it and I mulled it around and put it in the back of my mind for awhile. That was one of the things that struck me - this is a wonderful thing that the Internet has available for people." That was in 2006.

On Nov. 13, 2007, Hruska, 47, donated her left kidney to Connie McGhee, 53, of Denver.

"It has just been a wonderful experience," said Hruska, whose few physical restrictions since the procedure include watching her salt intake and not taking aspirin. "There's not one regret."

McGhee has recently been in and out of hospitals in Denver and at Johns Hopkins in Baltimore, where the transplant took place. She has been seen for surgery-related complications, and to address some slight rejection of the organ, which was treated with extra immunosuppressant drugs, McGhee said.

But life is good.

"Nicole's kidney is doing well," she said. "My life is getting back to normal, which is just wonderful, with family and friends and working," she said.

"Oh, my gosh, I feel so much better."



Thinking it over

It was Christmas 2006, and Hruska had spent months considering the idea of being an organ donor. She had researched the medical procedures involved, including how technology has made surgeries less invasive. That information helped allay her fears.

She and her husband, Scott Hruska, were in good health and had no children.

She thought about her charity work, which focused mainly on animals, and considered organ donation as a way she could help a fellow human being.

"That was the right time if I wanted to look into it," Hruska said.

Scott Hruska could see how passionate his wife was about pursuing it. While there was some anxiety on his part, he said he supported her.

"Obviously, I know my wife very well and I know when she sets her mind to something, there's no other outcome," he said of his wife of 22 years. "My main concern was understanding the surgery, the potential complications that could arise for a donor, and any surgery risk."



Unrelated donors

There have been 90,068 living donor transplants to date in the United States, according to United Network for Organ Sharing, or UNOS. Of those, 11,949 transplants - or about 13 percent - involved a donor giving an organ to a specific person who was unrelated. Examples of that include matches made on MatchingDonors.com, or a person giving an organ to an acquaintance or friend.

More than 98,000 people in the nation are on the national waiting list maintained by UNOS, according to Paul Sodders, spokesman for the Iowa Donor Network. Of those individuals, 469 are from Iowa.

The lion's share are requests for kidneys, accounting for 368 in Iowa and about 74,000 nationwide, Sodders said.

When a deceased organ donor is identified, the UNOS computer network creates a ranked list of patients to receive the organs, according to specific factors and protocols.

On average, patients in larger cities such as New York and Chicago can wait up to five years for a kidney, Sodders said. In Iowa, the wait is about two years.



Paul Dooley, a co-founder of MatchingDonors.com, said the site has gained more acceptance since it was first established in 2005. Dr. Jeremiah Lowney helped create the organization, based in Canton, Mass.

Dooley said bigger centers such as the Mayo Clinic in Rochester, Minn., and Johns Hopkins in Baltimore, Md., do perform transplants that involve "altruistic donors."

"There's an alternative out there to help them live," Dooley said of those needing an organ. So far, they've helped facilitate nearly 70 transplants.

The Web site provides a vehicle for recipients and donors to meet; the individuals work with transplant centers and hospitals to start the process.

Large, bright red text on Web pages directed to potential donors remind them that the sale of organs is illegal.

Dr. Alan Reed, head of the University of Iowa Hospitals' Organ Transplant Center, said it's not the center's role to regulate how people meet and form relationships.

"Our responsibility is to make sure that there's nothing illegal going on and that everything we do puts the donors' safety squarely in our sights," Reed said. That includes ensuring the donor is not being coerced.



Dr. Doug Hanto, chief of the division of transplantation at Beth Israel Deaconess Medical Center in Boston, said the center had publicly stated in the past that it would not accept a donor found through MatchingDonors.com.

That's because the fairest way to allocate organs is by using the UNOS list, Hanto said. UNOS prioritizes which patients receive organs according to medical need.

He's concerned that when individuals go to the MatchingDonors Web site that they're making choices based on age, sex, race or someone's "ability to write a good story," Hanto said.

But the center changed its policy a couple of years ago, agreeing to evaluate donors found through MatchingDonors.

That was when a longtime patient, who had exhausted all his potential donors, wanted to use the Web site, Hanto said. The patient also wanted to continue to receive his care at the center. After debating the issue and advising the patient of their concerns, Hanto said they ultimately decided they had an obligation to the patient.

"If he found a donor on MatchingDonors.com, we would evaluate that donor as we would anyone else," Hanto said. "If he was a suitable, altruistic donor, then we would do the transplant."

The patient eventually found a family member to be a donor.

But Hanto said the center's philosophy regarding the Web site still stands. Sodders, with the Iowa Donor Network, said it refers people wanting to make a living donation to the closest transplant center - Mercy Medical Center or Iowa Methodist Medical Center in Des Moines, or the University of Iowa. This way, donors can work with recipients in the state, and are assured follow-up care close to home, Sodders said.



'How do you choose?'

The first time Hruska visited the MatchingDonors.com site, she narrowed the patient search to look for individuals in Colorado, where she likes to take vacations and hike.

"It was random," she said of her method. "You do feel like you're playing God once you get on the Web site, like whose sob story is the worst? How do you pick or choose?"

But almost immediately, McGhee's profile, which included a photo, caught her eye.

"I said, 'You know, she looks like my cousin," said Hruska, thinking of her close family member.

She called McGhee less than a day later. "I said, 'Hi Connie, do you got a moment? I saw your profile on MatchingDonors and I would really like to help you out.' "

McGhee's personality, with her cheerfulness and positive outlook, also reminded Hruska of her cousin.

It was the first, and only, profile Hruska would consider.

"She was really nice," McGhee said. "We kind of clicked instantly, as soon as we started talking.

"She was very open about everything and wanted to talk. She said, 'I just want to do this, I just want to do this.' "

This would be McGhee's second transplant.

The first had been a kidney/pancreas transplant 20 years ago from a cadaver donor. Doctors told her seven years ago she needed a new kidney; without one, they said she'd be on dialysis within six months, McGhee said.

"I've heard so many horror stories, that basically dialysis is there to help you survive, but you don't feel good," said McGhee, who managed to stay off the treatments.

She was put on the UNOS patient list. Then, she waited.



About three years ago, with no word from UNOS, McGhee learned of MatchingDonors.com through a story in a local newspaper. A Denver-area man had found a donor through the Web site.

She decided to post her profile and included a photo of herself and her husband, Darrell McGregor.

"I just wanted to get across how desperately I wanted a kidney," McGhee said. "I have a son, and I want to watch him grow up and see him have kids."

Fifteen people were tested to see if they were a match for McGhee. But as a result of her previous transplant, a lot of antibodies had built up in her body, making it tough to find a match.

There was one woman who was a match, but the woman's husband refused to let her go through with the transplant, McGhee said.

"You have to respect that," she said. "It was disappointing, but you know, it's her life. I just kept plugging along."



Year-long process

Hruska and McGhee immediately started the process for the transplant, starting with blood-test kits from the hospital in Denver where the transplant was to take place.

The pre-transplant process would eventually last nearly a year.

When the results came back that the antibodies between the two weren't a perfect match, McGhee suggested they travel to Johns Hopkins in Baltimore, which specialized in such transplants.

The UPS and FedEx deliveries of necessary medical tests ebbed and flowed to her house, Hruska said. There were numerous blood tests to be done, many of which she did before heading to work. There was a nuclear test, magnetic resonance imaging, CT scan and mammogram, too.

The two women also had to travel to Baltimore before the transplant to have more tests done.

There, Hruska had to undergo a psychiatric evaluation, to make sure she didn't have ulterior motives. She also had to contend with a complication related to a CT scan that caused an arm to swell, Hruska said.

McGhee's insurance paid for the tests and travel costs for both women. Hruska said it also helped that her employer, Hopkins & Huebner PC, was supportive throughout the process.

Hruska said one plus of taking all those pre-transplant tests: It helped her overcome her fear of needles.



By the time the transplant was performed in November, Hruska was frustrated with the bureaucracy and numerous departments she had to navigate to ensure things such as test results were accounted for.

"Donors have to just keep on top of things, you know," Hruska said. "Because believe me, you fall through the cracks so much."

The morning of the transplant, the women chatted. Hruska jokingly told her friend how vain she was: "We were supposed to not have makeup on, no fingernail polish, anything, and here she is showing up like a beauty queen with her hair all coiffed."

Hruska's surgery was three hours. Her longest scar is 3to 4 inches long.

"The first two days were the most painful," she said. "You don't realize how much you use your stomach muscles until you have surgery in that area, and everything's bruised up."

Scott Hruska recommended that donors have advocates at their side, a role he played after his wife's surgery. There were issues with medications and her menu post-surgery, he said.



Two weeks after surgery, Nicole Hruska was up to speed.

"I don't feel any different," Hruska said. "They tell me to watch my salt intake; don't add any extra salt to my food. Aspirin is a no for me."

McGhee can't wait to return to golf, her favorite sport. Her energy is up. She's ready to bite into tomatoes, oranges and bananas - favorite foods she had to skip for seven years because of their high potassium content.

Hruska said she'd consider organ donation again, but it would be at least a couple of years.

"I think you have to go into something like this at 100 percent," she said. "You learn along the way, but you go in with 100 percent of commitment. It's just the right thing."

"I would do it all again."

Reporter Dawn Sagario can be reached at (515) 284-8351 or dsagario@dmreg.com

http://www.desmoinesregister.com/apps/pbcs.dll/article?AID=/20080217/LIFE02/802170302/1045/LIFE05