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World Kidney Day in Milwaukee
March sheds light on a common, but relatively unknown, life-threatening genetic disease. The best cure is organ transplant, but finding a match isn't easy.

Jeff Nelson
Photos by Thomas Nardini

Jeff Nelson is tired. Weekends are no longer the time for grocery shopping at Pick 'n Save, checking things off the "honey-do" list, or doing activities with his wife and two adopted sons. Now they are filled with naps and resting on the couch.

He loves camping and kayaking, but last time he tried to go, the setup and takedown wore him out. He gets winded walking down a hallway.

His wife Terri helps him watch his diet. He tries to consume limited amounts of sodium and potassium-rich foods. He’s on three different medications to manage his high blood pressure. He has lost 50 pounds with Weight Watchers, but his stomach still bulges.

If two of his organs weren’t slowly giving up, he might be the picture of health. Instead, he is living with polycystic kidney disease (PKD), the same disease his mother had and brother still has, the same disease 600,000 Americans have.  March is national kidney month, and today – March 14 – is world kidney day.

PKD is a genetic disease passed from parent to child about 50 percent of the time. As the name suggests, the disease causes cysts to form on a patient’s kidneys. These cysts cause the kidneys to grow to be so enormous that – as in Nelson’s case – they become comparable to the size of a football. Each.

Even though there are more people living with PKD than there are living in the city of Milwaukee, it doesn’t receive the publicity you see with breast cancer, AIDS or heart disease. Similar to a lot of these ailments, a 100 percent cure is nearly impossible to find. But with PKD, one generous individual could take someone like Nelson from a life of sleeping on the couch, back to the life he once lived: camping and kayaking.

This solution lies in transplant centers across the country. There are more than 95,000 people in the U.S. on the kidney transplant list. (The second biggest waiting list is for liver transplants with 15,770.)  The wait for relief can be a long and emotional process. When a patient’s kidney function reduces to a certain level (for Nelson that number was 20 percent of what it should have been), patients are placed on a waiting list. Usually that means they have to wait until a deceased donor’s organs become available. That can take years.

The other option is to have a living donor see if he or she is a match. This is the tedious part. Candidates have to go through close to a year of testing. Transplant coordinators ensure the donor’s blood type and tissue match the patient. They also make sure there will be no risk to the donor, meaning the donor must be healthy.

Katie’s testing took a year. She decided during Christmas in 2009 that she wanted to help her cousin who was suffering from PKD. “From a donor’s standpoint, at least me personally, that’s just what I was meant to do,” she says. “I never wanted thanks, or praise, or even people really knowing what I did. I did it for my cousin. I did it out of love. I didn’t do it for any other reasons.” And that's why Katie didn't want her last name used. She hopes that if she inspires someone else to donate, they don’t do it just for recognition.

The testing process is as intense as it is long. "They basically break down everything in your body – how everything functions, every body fluid level – to make sure that you’re healthy enough to sustain the surgery," Katie says. "If all of that goes well, then you sort of monitor your fluid levels for 24 hours at a time, send in the results to the hospital.”

Katie was also assigned a social worker who made sure she was making her own decision and ensured there was no payment agreement. Paying for an organ is a felony.

She and her cousin finally scheduled the surgery, and when the day finally came, it worked out perfectly. Katie’s surgery was unusual due to her short stature. There wasn’t a lot of room available in her torso so she had an open surgery, leading to a slightly longer recovery time. She spent five days in the hospital and then eight weeks recovering at home. Patients usually have laparoscopic surgeries, unless the recipient's kidneys are too big to remove that way, or, like Katie, the patient doesn’t have a lot of room to maneuver.

“There was eight weeks of discomfort when I was sleeping," she says. "I mean, it’s sore. I was cut open. It’s to be expected. Any sort of pain or feelings of discomfort are totally diminished by the joy that you see in your recipient and the fact that he is functioning like he was before and enjoying life and being able to eat and drink the things that he wanted to…it’s almost selfish, like how good it makes you feel.”

You do not need two kidneys to live. When you donate, your remaining kidney works harder to make up for the one lost. Katie’s one kidney will never function at the full 100 percent that she would have if she still had both, but she’s living at close to 70 percent kidney function and says aside from the emotions and the scar, it’s like the surgery never happened.

From the recipient’s side, there is no way to make it up to a donor. David Leigh received a kidney from his daughter almost a year ago. He had been suffering from PKD, and his kidneys each weighed 10 pounds. Just as experts predict, of his two daughters, one also has PKD and the other does not. Despite feeling constantly tired and uncomfortable, and looking “pregnant,” Leigh initially refused to take his daughter’s healthy kidney, wanting her to hold onto it until her sister with PKD needed one.

He finally agreed when his wife gave him a tough dose of reality: “My wife said, ‘It’s not about you; it’s about this family. Can you imagine the three of us at your early funeral because you wouldn’t accept this kidney?'”

Leigh’s story is a best-case scenario. His daughter went through all the testing, and in May 2012, doctors replaced Leigh’s two swollen kidneys with one of her healthy ones. Leigh saw results instantly. His kidney function – which doctors measure by levels of creatinine, a waste kidneys filter from the blood – went from 4.8 to 1.6. The normal level is between 0.6 and 1.3. And that was on the first day. The second day, his level dropped to 1.0 and to 0.9 on the third day.

“Literally within one day, my one kidney was doing the work of two kidneys,” Leigh says. He now lives at around 60 to 65 percent kidney function. The instant 20 pound weight loss wasn’t too bad either. “I can’t even tell you how much better I feel than I felt,” he says. “I always knew that this was a special gift but now I know this is off the charts a special gift. I can never repay her. There isn’t enough money. There isn’t enough in this world that I could ever do to repay her for that gift.”


Nelson is planning on purchasing a billboard to get his message out.
Now Katie, Leigh and the rest of their Milwaukee PKD Foundation chapter are working to bring that miracle to Jeff Nelson. They hold an annual walk and try to raise awareness about the disease, and now they are using social media to try and let people know what they can do to help Nelson.

He came close to getting a replacement kidney. His brother-in-law, also named Jeff, went through the testing process. They found that he was in fact a match. When it came time for 24-hour blood pressure monitoring, the transplant team found that Nelson’s brother-in-law had slightly high blood pressure and that they wouldn’t be able to do the surgery. “I was devastated,” says Nelson. “I was sitting in the office crying so bad, and Jeff was crying. It was just really bad because I really wanted a kidney and I just know that he wanted to give me a kidney, too…It was a real roller coaster.”

Nelson, a network engineer turned project manager has created graphs and charts to figure out how his disease is progressing and when he will have to start dialysis, which will involve being hooked up to a machine that will make up for lost kidney function but keep him out of commission for four hours a day, three days a week. He does not want to get to that point but is certain he will reach it by winter 2013 at the latest.

He is in his second year on the UW Hospital’s waiting list and the average wait time is three years. He hopes this year he will be at the top of their deceased donor list. “I can’t ask somebody for a kidney," he says. "That’s not going to work. They have to make that decision on their own."

To help commemorate National Kidney Month and find out more about Jeff Nelson’s search for a kidney, visit his Facebook page. You can also visit the PKD Foundation site or United Network of Organ Sharing to learn more about kidney disease and transplants.

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