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Making a chain of love can save many lives

Scott Kuhl (left) donated a kidney as part of a Paired Kidney Exchange Program which created a three-way match allowing his brother Shawn Kuhl (right) to receive a kidney from someone in California in 2014. Submitted photo

Every year more than 5,000 people die waiting for a kidney transplant, according to the Living Kidney Donor Network (LKDN) website. However, more options may be available to people in need of a kidney.

The Paired Kidney Exchange (PKE) Program offers a way for more people to donate a kidney and potentially save more lives. According to LKDN, 30 percent of potential donors are not a match for the person to which they want to donate, but the PKE program offers another option.

"As a result of medical technology and better anti-rejection drugs, paired exchanges (also called swaps or chains) allow these incompatible donors to help their intended recipients by donating to another recipient who also has an incompatible donor," per the LKDN website.

The PKE Program made a difference to one family when Scott Kuhl of Ellsworth donated his kidney to a woman in Philadelphial this woman's cousin donated a kidney to someone in California; then a loved one of the person in California donated their kidney to Scott's brother, Shawn Kuhl, from Cuba City.

The Kuhls' story starts long before the 2014 transplant. Unfortunately, the Kuhls were familiar with kidney transplants as their mom had her first kidney transplant from a deceased donor in 1983.

In 1999, Kuhl's mom was in kidney failure again. Since Shawn was now old enough to donate his kidney, he got tested to see if he would be a match.

"In 1999 I was tested to see if I was a match to my mom," Shawn said. "They told me I was a perfect match but unfortunately they discovered a rare disease in my kidneys. It was called Medullary Cystic Kidney Disease."

While Shawn wasn't able to donate his kidney to his mom, his mom was able to get another deceased donor kidney and had her second kidney transplant in 2000.

By 2008, Shawn was on dialysis looking for his own kidney donor. At the time, Scott said he sent a prayer request through his church, Crossroads Community Church in Ellsworth. Through this prayer request, Scott said four to six people were tested to see if they could be a donor for Shawn; Steve Denzer ended up being a match.

"In June of 2009 I received a transplant from [a] live donor from a great man who went to church with my brother Scott," Shawn said. "That kidney was working great. Then in 2012 my body started rejecting the kidney so I went back on dialysis."

While Scott wasn't a match for Shawn, he did find out about the PKE Program. If Scott was willing to donate his kidney to someone else's loved one, they could create a chain so multiple people would be able to get needed kidneys at the same time.

"I said I'm all in," Scott said about being part of PKE Program. "If I got into the database and I find a match I'll do it."

Shawn said he has always been close with his family and wasn't surprised at Scott's willingness to do this.

"Scott stepped up and told me he wanted to be tested to see if he could donate to someone in order to help me," Shawn said. "This was a decision that had to be made with Scott and the rest of his family. I don't think there was any hesitation with his wife or kids."

On Nov. 4, 2014, Scott and Shawn had their surgeries at UW-Madison. Scott said his surgery was first; he went in at 5:30 a.m. His kidney was driven from Madison to Chicago, but because of his surgery taking longer than expected, the kidney missed its initial flight from Chicago to Philadelphia; luckily a backup flight was already scheduled. Once his kidney got to Philadelphia, a police escort with sirens accompanied the kidney to a Philadelphia hospital where a 51-year-old woman was in surgery waiting for the kidney.

The Philadelphia woman's cousin donated a kidney that was flown to California. From there the person in California received the kidney and their loved one's kidney was flown back to Madison, where Shawn was waiting for his new kidney. Shawn's surgery took place at about 2:30 p.m. that same day.

"Doing this PKE was a life-changing moment for me," Shawn said. "If it wasn't for Scott I don't know if I would still be here. I don't know if my wonderful wife Paula would be a widow or my kids be fatherless. I owe Scott my life."

After the surgeries, Scott said Shawn was at his bedside four hours after Shawn had surgery as it took Scott a little longer to recover. But he said the recovery time was still way faster than when his mom had her first surgery. Scott said she had been in the hospital for weeks and it was days before she could get out of bed.

Scott said the PKE Program is a great way to be a kidney donor for someone even if you are not a match for that person. Through the PKE Program, many people are able to be linked together to get the life saving transplant they may need.

"It's not like my kidney went to my brother, it went to a stranger," Scott said. "If you have a kidney to give, give it."

There are different ways a person may choose to participate in a PKE program. Some hospitals have their own program set up for exchanges within the hospital or have a shared exchange program with other hospitals, according to LKDN. Three national organizations that offer PKE programs are Alliance for Paired Donation, National Kidney Registry and United Network for Organ Sharing.

According to the Alliance for Paired Kidney Donation website, 17,000 people in the U.S. receive a kidney every year, but the waiting list for a kidney transplant is about 100,000 people. The PKE Program may be a way for more transplants to occur and there are benefits to having a living donor.

"Living donors not only save lives, they help provide longer lives," the Alliance for Paired Kidney Donation website states. "On average, transplants from living donors increase survival rates by almost 12 years compared to those who receive kidneys from deceased donors."

The potential to save more lives, Scott and Shawn agree, is something the PKE Program can do.

"More people need to know that the Paired Kidney Exchange Program exists," Shawn said. "It can help so many people."

To learn more, go to www.lkdn.org/paired_kidney_exchange.html.

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