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Sharing the gift of life: Kidney patients have more options

This article first appeared in the St. Louis Beacon, Jan. 27, 2011 - Lots of people celebrate non-traditional birthdays -- for a cat, a dog, even a car. But Jonel Presley and her daughter Casie Rentel, both of St. Peters, mark an annual observance for which most people don't give much thought.

"We always have a 'kidney birthday' cake," said Presley, 54, with a laugh. "I said I wanted to make this my new birthday because I felt so bad before and felt so much better afterward. It was like I had this new life."

Her daughter feels like celebrating, too.

"I knew it was worth it about a week after the surgery when my mom said, 'I feel like I want to go running,'" said Rentel, 32. "I knew she felt a million times better if she felt good enough to want to do something like that."

Presley is just one of the roughly 16,000 Americans who receive a transplanted kidney each year. Most donated organs come from cadavers but that means time spent on an extensive waiting list. Loved ones are often a more immediate and reliable source.

Moreover, it's a source with plenty of takers. The kidney is, by far, the most transplanted organ in the body and the one in heaviest demand. Of more than 110,000 candidates for transplants on the national list, more than 87,000 are waiting for a kidney. Almost 1,200 of those are in Missouri alone.

Oddly, that's due to a strange mix of good and bad news. Unlike those who suffer from maladies of the heart, lungs or liver, kidney patients have a temporary stopgap in the event of complete organ failure: dialysis. That means a high percentage can be kept alive until transplant.

That's not the only good news that has kept the waiting list numbers elevated, said Joel Newman, spokesman for United Network for Organ Sharing (UNOS), a non-profit that contracts with the federal government to track organ donation.

"Kidney transplantation is highly successful," he said, noting recent improvements in the field. "Many people who are today very good potential recipients may not have even been listed 15 or 20 years ago."

Unfortunately, there's another reason kidney candidates are in such ample supply. Disorders related to renal function have also gone up significantly in recent years. Newman is uncertain why, but believes it could have to do with an aging population and the increasing prevalence of diabetes.

Whatever the cause, more kidney disease and better transplant technology have merged to create a fattened waiting list that leaves tens of thousands stuck in transplant limbo as doctors and medical researchers scramble for new and innovative options to help them.

Those, like Presley, lucky enough to find a match from a living donor can bypass worries about numbers and wait times. While initially reluctant to let her daughter proceed with the donation, Presley eventually consented.

She's glad she did.

"I just can't imagine what life would be like without her doing that for me," Presley said.

Living With Dialysis

Emily McFarland doesn't have to imagine it. She lives that life three days a week, for as much as four hours a day sitting in a chair, keeping her arm completely still while a dialysis machine slowly pumps waste from her blood supply. For McFarland, 32, director of communications at Mehlville School District, it's an unwelcome return to a situation she thought she'd left behind years ago.

Diagnosed with kidney problems as early as the eighth grade, McFarland began having throbbing headaches, blurred vision and vomiting within weeks of beginning college. The answer was a transplant. Her mother donated a kidney and for the next decade McFarland felt her troubles were over.

By 2007, she began showing symptoms again.

"It was really hard for me because I thought I was done with all that," she said. "I was living a normal life, as normal as could be for me."

Her donated kidney failed. Now, she must rise for a 6 a.m. dialysis appointment just to make it to work by mid-morning. She also has to maintain a strict diet and tight fluid restrictions.

Still, she remains upbeat.

"Dialysis can go one of two ways," she said. "You can either let it consume you and become a sick person or you can stay an active member of society and do your dialysis."

In McFarland's voice it's easy to hear the mixed emotions. Dialysis has been both a blessing and a curse for nearly half a million Americans suffering from end stage renal failure. It gives them life, but it demands a significant price in return.

Dr. Surendra Shenoy, director of the Living Donor Transplant Program at Washington University, says that while dialysis is a substitute for the kidney's normal ability to flush waste, it is anything but easy on the body. Over decades, it can even shorten the lifespan of a patient.

"It's just a replacement therapy," he said. "It's not a normal situation."

Kidney transplant science has come a long way since its birth in the 1950s. Originally an option for identical siblings, today immunosuppressive therapies and other techniques have improved compatibility.

"We can now pretty much place any kidney in any person and make it work within some limitations," Shenoy said.

Those limitations include blood type and tissue matching. Unfortunately for McFarland, the latter is a barrier for her. She said her doctor has told her that only two of every 100 kidneys will be suitable for the antibodies backing her immune system, one of the reasons so many, including family members, have been ruled out as matches. Most kidney patients face some resistance from their immunity and have to take medication to counter the effects, even for a good match.

Like McFarland, every kidney recipient must face another uncertain reality of life with renal failure. Shenoy said that in many cases, donor kidneys aren't a final answer. From the moment it's implanted, the new organ often finds itself in a battle with the host's body and that fight takes a toll. He said cadaver kidneys tend to average about 10-12 years while living donor kidneys can last longer, often for an average of 15 or 20 years. Individual results, he said, can vary widely.

"When we are talking about rejection, we are not talking about losing the organ right away but cutting into its longevity," Shenoy said. "No kidney transplant is considered permanent. We wish they would last forever, but they do not."

That's the big reason living donor kidney transplants like those in McFarland's and Presley's cases are preferred. In 1997, when McFarland received her kidney, about one-third of kidneys were from living donors. A decade later, when Presley received Rentel's donation, that year's number had risen only slightly to 36 percent. Those figures have been fairly consistent. Nearly two-thirds of the almost 300,000 kidney transplants in the United States since 1988 have come from cadavers.

During the same period, more than 19 of every 20 liver transplants were from the deceased, while living donor lung and pancreas transplants are so rare that only one of each has been completed since 2008. Liver and pancreas transplants from the living can be achieved by cutting off a part of the organ for the procedure.

Some meet with success through the national list even if it does take time. Three years of dialysis passed before Pamela Brewer, 56, of Manchester could receive her kidney. She got her new organ on Christmas Eve.

She said she never felt impatient with the wait, though there had been disappointments in the past.

"I came in twice before and the kidney was not viable so this was the third time," she said.

That's not uncommon, said her doctor Jason Wellen, director of kidney and pancreas transplant surgery at Washington University School of Medicine. He notes that when a cadaver kidney comes in it must be examined thoroughly for problems such as growths, abnormalities or tumors, often ruling out organs with imperfections.

Altruistic Donors

As a compliance officer at Edward Jones, Phil Wisely enjoys reading business articles. But in August 2009, as he perused the financial page on a local news internet site, his eye was drawn to the row of links that featured a story about a kidney patient.

"I just happened to click on it not knowing exactly why I did," Wisely said. "I saw an article about a young lady who had been on dialysis for several years and was looking for somebody who would be willing to donate a kidney.

"I said, 'What the heck, I'm O-positive. I'll call the number,'" he said after checking the blood type requirement.

It turned out that Wisely wasn't needed for the woman in the ad but he was a match for someone else -- a man he didn't even come face-to-face with until after his kidney was implanted.

"I met him for about five minutes on the day I was being discharged from the hospital," Wisely said.

He's had some contact since then but hasn't kept in close touch.

"He's sent me a couple of e-mails telling me how his life's changed and he's back to what he was before," he said. "That's what it was worth. That's what it was all about."

Numbers are hard to come by but while Wisely's generosity to a stranger may seem amazing, such altruistic donations do happen with people willing to give up an extra organ for those to whom they have no connection.

"I think it goes on more than what people realize," said Wisely. He is a father of three and deeply religious. He told his wife and children about the decision but never informed the rest of his family. "People might be surprised but if they knew me they wouldn't. If somebody needs help, I'm going to be there to help them the best that I can with what I can."

McFarland is hopeful someone like Wisely may emerge for her. About a dozen friends and co-workers have already been tested and rejected in her case. She remains optimistic that perhaps a stranger will come forward and be the one. Her sister, who did not qualify as a potential donor, even founded a Facebook group searching for the right person who could give an organ.

"If one out of four people decided to do that, we wouldn't have anybody on dialysis or waiting wishing they could have a normal life," McFarland said. "Look around and everybody that you see has the ability to help somebody and save a life."

It's a thought that crosses her mind often.

"The kidney is the only organ in the body that performs at 200 percent capacity," she adds with a smile. "I like that statistic."

Paired Donors

For those who can't find a match and remain in limbo awaiting an organ from the national list, there is an increasingly prevalent third option: paired donation. Essentially, recipients with non-matching loved ones are linked with matches from elsewhere in the country who want to give but aren't compatible with those to whom they'd like to donate. These once-unusual organ swaps are becoming more common and can reach circles of up to two or three dozen people. UNOS is presently developing a pilot project to compile localized exchanges into a national database.

"One thing we know is that the more donors in a pool, the more transplants we're going to get out of these exchanges," said Wellen, Brewer's doctor.

Wellen is enthusiastic about the procedure's potential to reduce wait time, which, in Missouri, he said can run an average of three years, almost exactly how long Brewer had to wait for her cadaver kidney.

"The projections after everyone enters their names in is that it could increase the number of living donor transplants by 1,500 to 3,000 a year," he said.

'One Day Closer'

Today, Presley is as grateful to her daughter as ever. She's on a regimen of medication and doing fine.

"My nephrologist said my numbers are better than his," she chuckled.

While she admitted the procedure initially frightened her, Rentel said she never had any doubts about helping her mother. Other than three small scars, she has had no after-effects from her donation.

"I get checked every year to make sure that my one kidney is OK and there are no problems," she said.

She and her mother just celebrated their fourth kidney birthday earlier this month.

Wisely also has no regrets. He didn't even need pain pills after coming home. He said the real story isn't about him but about the patients who need organs and the skill of the doctors in performing transplants.

"I'd do it all over again," he said. "If I had three kidneys, I'd give another one away."

Brewer is in good shape also. She's looking forward to going swimming again, something made impossible before due to the threat of bacterial contamination interfering with her dialysis.

"It was slow going at first, but now it's four weeks out and I'm better," Brewer said.

Life is going well for McFarland too, though her wait -- and her weekly dialysis routine -- continues, just as it does for tens of thousands around the country. She's trying not to let the uncertainty slow her down. She's getting married in May.

"More recently, I've been thinking I need to stop letting my life be on hold and just go with it," she said. "When the transplant comes, it's going to come. I've got to do dialysis three days a week and that's my normal. When a transplant comes, that will be my new normal."

"My mantra is that I'm closer today than I was yesterday to my transplant," she said.

David Baugher is a freelance writer in St. Louis. 

David Baugher
David Baugher is a freelance writer in St. Louis who contributed to several stories for the STL Beacon.

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