Sagamore Hills man finds that donating a kidney is no simple thing
Published: Sunday, February 26, 2012, 8:15 AM Updated: Sunday, February 26, 2012, 9:03 AM
By Angela Townsend, The Plain Dealer
One year must pass before a kidney donor and recipient can meet and only if both parties agree to it. "For me, personally, it would be interesting for me to meet him," Curtis Hendrix says of the California man who now lives with Hendrix's kidney. "But if I don't meet him, that's fine."CLEVELAND, Ohio -- At 2:40 a.m. Pacific time on Dec. 13, a man in his 50s received a new kidney following a 3 1/2-hour surgery in California. He had been on the transplant wait list for more than four years.
The kidney came from Curtis Hendrix of Sagamore Hills, who was recovering in a room in the Cleveland Clinic's Miller Family Pavilion that night.
Six months earlier, Hendrix, 21, had decided he wanted to donate a kidney. To a stranger. The idea, he said, came to him in a dream.
The dream was "the most vivid, intense, realistic dream I've ever had," Hendrix said. "It was long. It came out of the blue."
The next day, with the dream replaying in his mind, Hendrix started researching how to go about becoming a kidney donor.
Despite the risk involved with any surgery, and despite some vocal opposition from a few friends and relatives who thought he was a bit crazy, Hendrix was confident that his chances of having a successful surgery and outcome were good.
His hope from the start was to help someone in need without drawing attention to himself.
One week after having the dream, talking to family and friends, and researching kidney donation online, Hendrix finally called the Clinic's transplant center and shared the revelation that he wanted to donate a kidney.
The administrative assistant who fielded the call took Hendrix's name, address and phone number. Someone would call him back, she told him.
About paired exchange transplants
In late 2006, little over a year before the founding of the National Kidney Registry, the Alliance for Paired Donation was formed in suburban Toledo. Like NKR, the alliance also specializes in facilitating paired exchange transplants as a way to address the number of available kidney transplants.
A kidney chain is made up of donor-recipient pairs in which the donor's kidney is incompatible with the intended recipient. So that donor gives a kidney to another patient in need, starting a chain that ends when the person originally identified as the recipient of the first donor's kidney finally receives a kidney transplant.
The Alliance for Paired Donation, which works with 80 transplant centers across the country, has started 19 kidney chains, says executive director Laurie Reece.
One hundred transplant centers have signed up to participate in the national Kidney Paired Donation Pilot Program, which is being run by the Organ Procurement and Transplantation Network. OPTN hopes to use the pilot program, in which 18 transplants have occurred to date, as the basis of a new national policy. OPTN is scheduling public hearings on the plan within the next couple of months. The OPTN's board of directors will then vote in November. If the board approves the policy, it will go into effect in February 2013.Hendrix wasn't so sure.
"There was definitely a lot of, 'What's going on?' and 'Are they really gonna blow me off? Are they gonna take me seriously?' going through my mind," he said.
The Clinic did take him seriously.
Two days later, Audrey Caplin, called. Caplin, a nurse, is one of two people at the Clinic who coordinate what are termed living kidney donations.
For about 20 minutes, the two talked about Hendrix's general medical history. Caplin wanted to make sure there were no red flags -- active cancer, heart disease or diabetes, a family history of kidney disease -- that would disqualify Hendrix immediately.
Caplin also asked Hendrix what his family thought about his plan to give one of his kidneys to a stranger. He assured her they were supportive. She provided him with a general idea of the donor process.
"It was nerve-racking, definitely," he said. "I'm not sure why. It was really uncomfortable."
The unease came, in part, from the degree of inquiry.
"We ask all kinds of questions," Caplin said later. "We educate them. That's part of our process."
Caplin also mailed Hendrix an information packet. Three weeks later, Hendrix called her back; he hadn't changed his mind.
On Aug. 18, Hendrix went to the Clinic and met Caplin for the first time. They talked for about an hour, going over what he could expect as the process moved forward.
Hendrix then talked with social worker Cheryl Gillespie. It was as if he were telling her his entire life story, he said -- what his childhood was like, what was going on in his life right now.
The final conversation that day was with a psychiatrist. Dr. Kathy Coffman conducted some basic psychiatric tests and quizzed Hendrix on his memory recollection and association.
Because Hendrix had called the Clinic to offer his kidney to whoever needed it, his meeting with a psychiatrist came early in the screening process. Most people don't meet with a psychiatrist until after they are approved as a potential donor, with the session coming as part of two days of medical tests and consultations.
The following week, a committee convened to review all of the details of Hendrix's case -- the only one that didn't have an identified recipient -- and those of other potential kidney donors.
From eight to 12 people, including surgeons, kidney specialists, social workers, bioethicists, an independent donor advocate, nurses and the living-donor coordinator, attend these weekly meetings, which can last up to 90 minutes.
The committee approved Hendrix as a potential kidney donor. Caplin called to tell him the good news.
In any given year, the Clinic -- like other transplant centers -- fields hundreds of calls from people who want to donate a kidney to someone they don't know.
"Maybe 20 [of those calls] are serious. Ten are thoroughly evaluated and go through the process completely. And just a rare few wind up completing," said Dr. Stuart Flechner, a Clinic transplant surgeon.
Health issues disqualify many people. Others back out when they realize that they don't get paid for donating (it's against the law) or that the surgery doesn't come with a same-day recovery.
Although the operation is usually performed laparoscopically with minimal incisions, it can take three to four hours, is performed under general anesthesia and is followed by a few nights in the hospital.
"People really don't have a clue about what it means to be a patient and to have surgery," Flechner said. "They haven't thought it through."
Of the 48 living kidney donors who had surgery at the Clinic in 2011, only two -- including Hendrix -- did not know who the recipient would be. Seven patients at the Clinic have received a kidney from anonymous living kidney donors since 2003.
'We are very cautious' about donors under 25
As part of a battery of medical tests that Hendrix had to complete to be cleared to donate, he had to collect urine samples over 24 hours. That proved a challenge for the fourth-year computer engineering student at the University of Akron.
How rare are anonymous donors
Of the 4,731 people who were living donors in the United States from January through November 2011, only 142 donated anonymously, according to data provided by United Network for Organ Sharing.
About half of 170 hospitals that have performed kidney transplants have used anonymous living donors three times or fewer.
Of the more than 110,000 living donors in the United States from 1988 through November 2011, about 1 percent -- 1,136 -- have been anonymous."I was carrying a cooler around campus," he said. "I had to keep [the sample containers] refrigerated."
On Sept. 13, cooler in hand, Hendrix showed up for what would be nine hours of further testing at the Clinic.
First up -- a blood test to check Hendrix's glomerular filtration rate, or GFR, to see how well his kidneys were functioning. That was followed by an EKG, chest X-ray, CT scan and the start of 24-hour blood pressure monitoring. All of this was to rule out diabetes, high blood pressure and heart disease.
Also that day, for the first time, Hendrix met with Flechner, the man who would perform the surgery.
"There were two big issues about him," Flechner recalled. "One was his age; he was extremely young. Is he mature? Two, being altruistic, what is really the motive?"
At 21, Hendrix was past the legal age of informed consent, 18. That doesn't mean much, though, in the process of vetting potential donor candidates.
"We are very cautious about those, let's say, under 25," Flechner said. "The reason is twofold. One, are they adult enough? Are they making decisions and choices that they wouldn't regret later? And two, the younger you are when you donate, the more life years you have to have something to go wrong. We want to make sure that really young folks are super-clean, medically. . . . It's more delicate."
In early October, Hendrix skipped classes to go back to the Clinic for meetings with a kidney specialist, Dr. Brian Stephany, and a bioethicist.
People who say they want to donate to someone they don't know automatically meet with a bioethicist. They're not the only ones. Anyone whose relationship with a potential recipient raises a flag -- an employee donating to his boss, a tenant offering a kidney to her landlord -- receives extra scrutiny, Caplin said.
"It's protection for the donor," said Caplin, adding that potential donors are advised throughout the process -- up until they are wheeled into the operating room -- that they can back out of surgery at any time.
The following week, the bioethicist called Hendrix with the results of the medical tests and evaluations. Everything looked good.
Again Hendrix heard the words, "We'll call you."
On Oct. 20, Hendrix's case was once again presented at the kidney donor selection committee. Based on the test results and evaluations, Hendrix was approved as a kidney donor candidate. Four months had passed since his dream. The Clinic called Hendrix that day to schedule a date for surgery.
During his first conversation with the Clinic, Hendrix stated when he wanted to have the operation.
"The only request he had -- and he was quite gentle and low-key in expressing it -- he had this window of finishing his finals and being off for three weeks," Flechner said.
"He asked me twice, in the most humble way, could it happen in that interval."
The Clinic, Flechner said, pushed for the National Kidney Registry in New York to accommodate Hendrix's class schedule. "That usually doesn't happen but we really went overboard to make it user-friendly for Curtis," Flechner said.
The Clinic had worked with the registry, a nonprofit organization that specializes in coordinating paired exchange transplants, for only a few months.
"We're very enthusiastic about them," Flechner said.
The registry also develops sequences of donor-recipient pairs, in which the donor's kidney can't go to a planned recipient for medical reasons. Hendrix's kidney started a chain reaction that will end with a kidney going to a recipient at the Clinic. The chain could theoretically involve 12 transplants, Flechner said.
After one potential recipient fell through because the match wasn't favorable, in late November the National Kidney Registry identified another potential patient.
Once blood test and tissue typing results from a patient in California came back favorable, the Clinic notified Hendrix he was a match. Following Hendrix's wishes, the surgery was scheduled to take place 10 days later.
As with all kidney transplants, all costs related to Hendrix's surgery and recovery (as well as his pre-surgery medical evaluations) would be picked up by the recipient's health insurance.
On Dec. 12, during his winter break from classes -- one week after taking his last final of the semester and about a month before starting a five-month engineering co-op at the Minerva, Ohio, operation of PCC Airfoils -- Hendrix would give away his left kidney.
Following the two-hour, 40-minute surgery, which had begun at 8 a.m., Hendrix's kidney was put on a charter plane to Chicago. From there it was flown to San Francisco, then on to Sacramento, where it was taken by ambulance to the hospital at the University of California-Davis.
At 7:40 p.m. Pacific time, the kidney arrived at the hospital.
For the next few hours, the organ was evaluated by the surgeon. The fat that surrounds and protects the kidney was removed. The ureter (the tube that carries urine from the kidney to the bladder), artery and vein also were prepared before the transplant.
At 11:13 p.m., Dr. Richard Perez, a professor of surgery and director of the kidney transplant program at the UC-Davis in Sacramento, began the surgery and finished 21 hours and 40 minutes after Hendrix's surgery began in Cleveland.
After three nights in the hospital, Hendrix went home. For the next few days after that he didn't do much more than sleep and lie around in bed. Once he felt a little stronger, he hung out with family and friends but pretty much took advantage of his vacation to recuperate at home.
Two days after Hendrix was discharged, the California man also went home with his new kidney.
Hendrix returned to the Clinic Jan. 3 for a follow-up visit with Flechner, who checked that the incisions were healing correctly. Hendrix's six-month follow-up will be sometime in June. After that, as is required by UNOS, he will come back for a one-year and two-year follow-up, the cost of which will be covered in full through the Clinic's Donor WIn (Wellness INitiative) program, designed to meet the post-surgery health needs of living kidney donors.
Because he is young and healthy, Hendrix's remaining kidney will grow big enough to provide his body with about 70 percent kidney function, Flechner said.
That's fine with Hendrix.
"If everything goes well, there are pretty much no changes in your health," he said.
"I look at it [as], what if the roles were reversed? If I were stuck on dialysis with no kidney function left, I would want somebody to give me a kidney. I'm extremely healthy. This is something that I could do."
http://www.cleveland.com/healthfit/index.ssf/2012/02/an_altruistic_kidney_donor.html
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