Dixon woman receives much needed kidney through exchange program – Shaw Local

DIXON — Julie and Scott Helfrich are no different from any other couple who's been together a long time. Married for more than 40 years, they've been by each other's side, building a life, raising a family, making friends and traveling, but in the last year they've accomplished something that not many couples can claim to have accomplished.

Together they saved lives.

The couple did just that when they underwent the surgery as part of a program to give people the gift that truly keeps on giving – the gift of life.

So Julie needed a kidney, and Scott was able to donate one. There was just one problem: Scott's kidney was not a match for his wife's. Undaunted, the couple continued to search for a solution, and they learned about the University of Wisconsin-Madison's Kidney Exchange Program, which could speed up the transplant process by pairing a compatible living donor with a recipient in need of a new kidney.

Instead of being put on a list and waiting for a matching organ from a deceased donor to become available, people who need a kidney can be matched with a living donor in a few different ways. In the Helfrichsches' case, they were candidates for a paired kidney exchange, in which a donor is not a match for the intended recipient but can still donate a kidney to someone else who needs one. The intended recipient receives a kidney from another living donor after the university registers them in the National Kidney Registry.

It was the perfect solution: Julie was able to start a new life and Scott was able to do the same for others.

Giving up a kidney and undergoing surgery to help a stranger isn't something everyone is willing to do, but Scott was willing to do it if it meant helping his life partner.

“It's a great program because you don't have to compete. [to her] “When it's hard to find a match, I can donate a kidney,” said Scott, 64. “If I donate a kidney, she can get a kidney. That helps a couple of families and makes it a lot quicker for people.”

Scott's sacrifice was understood by Julie, 68.

“He knew he didn't fit but he was determined to get the procedure,” Julie said. “He's my hero.”

Scott applied to take part in the exchange program in early 2023 and was approved in June, after which he began the process of finding a compatible partner, which ended up taking five months.

“One of the advantages of a living donor is that kidney acceptance is much higher,” Julie says. “Your body has a much higher chance of accepting the kidney if it's from a living donor.”

“They said it would take six months. It took five,” Scott said. “My wife got a call a few days before Thanksgiving, and I got a call around the same time. They told her they had found a match, and I had someone who could donate a kidney.”

After a three-week plan that included staying indoors to avoid exposure to the disease and the virus, Scott underwent kidney removal surgery on December 12, and Julie underwent kidney replacement surgery on December 13.

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This wasn't the first time Julie and Scott had faced health challenges together. Julie survived breast cancer more than 30 years ago. About six years ago, a tumor developed in one of her kidneys that needed to be removed. Three years later, her other kidney began to fail, and doctors decided she needed a transplant.

At first, the couple, who were rather private, shared their ordeal only with close family. But as time passed and the situation became more serious, the couple began to speak out more in hopes of spreading the word and finding a donor. She was persuaded to speak publicly when she got together with her siblings on a Zoom meeting.

“It was a hard decision for me,” Julie said. “I have six sisters and three brothers, and we meet every Sunday morning on Zoom. And one morning they said, 'It's about time. We have to tell everyone.'”

The decision was not an easy one, but it resulted in an outpouring of love and concern. The couple later learned that several of their friends and family had been tested as potential donors. Though they were unable to donate a kidney to Julie, many of them had become more conscious about their own kidney health, and one friend, like Scott, had become an organ donor and donated a kidney.

“Her running to help Julie meant she was able to help someone else,” Scott said.

When the couple finally emerged from surgery, there was a collective sigh of relief from the family, who named Julie's new kidney “Kevin,” after her favorite character from the Minions movie franchise.

“We were both on the road to recovery at the same time,” Julie says. “The help and support we received was incredible. When I returned to my room, I saw the relief on my four daughters' faces as they waited for me. There was so much joy and relief on their faces.”

These days, the couple is adjusting to life after the transplant, which means taking anti-rejection medication and Julie having weekly checkups. Scott doesn't have to change his diet because he only has one kidney, but he does have to be mindful of that fact.

“It's our new normal, and that's OK,” he said. “But it doesn't mean we're going to stop traveling.” By February, the couple was enjoying vacations as they had hoped, without worry.

When they became potential donors, the couple had to make some lifestyle changes. They planned vacations to Madison and southern Wisconsin so they would be close to the hospital when they got the call that a kidney had been found. When traveling far from home, they ran emergency scenarios through their minds in case something went wrong.

“We were still traveling and we were constantly thinking about what might happen, if something were to happen, how quickly we'd get to the airport and things like that,” Scott said.

Recently, they visited family in Florida for two weeks, where they played pickleball, kayaked and biked, a welcome change from the waiting and worry that had long been part of their lives, especially for Julie, who resolved to get more physically active than she had in years.

“I would like to be able to increase my activity level a bit more, but I am working on that,” Julie says. “The anti-rejection meds are tough, but I am managing to get through it. Some of the medications I'm taking will eventually be tapered or stopped, and I'll be back to normal again.”

Julie learned to be proactive about her health from a young age: She was diagnosed with breast cancer 32 years ago at age 36 after being urged to get a mammogram, at a time when the medical community was not as proactive in encouraging women her age to get screened.

“I convinced them to do it because I have two aunts on my father's side who had already had breast cancer,” Julie says.

Her insistence paid off.

“My first mammogram found breast cancer. It happened because I simply asked for it. I felt I needed to get tested. It wasn't because I wanted to find out something was wrong.”

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Participating in the kidney transplant program was a learning experience for Julie and Scott, allowing them to offer advice to others in a similar situation. They know firsthand how difficult it can be to prepare for major, unexpected surgery, but they are strong-willed and determined to overcome the challenge together.

Organ transplantation is a difficult process with many ups and downs. It's not just about finding a donor, it's also about matching the donors together. Donor lists are long, the wait times are long, and sometimes it's a race against time. According to the U.S. Health Resources and Services Administration, there are more than 100,000 people on the organ donation waiting list. Even if a donor is found, the costs are enormous. According to the National Transplant Foundation, a pancreas transplant costs an estimated $350,000, a heart transplant costs about $1.4 million, and patients have to pay between $69,000 and $276,000 out of pocket.

According to recent statistics from HRSA, kidneys are the most common organ in terms of both the number of people on the waiting list (about 89,000) and the number of transplants (just under 16,000).

“I've read that for some people it's just a matter of putting on a backpack, getting mentally prepared and saying that's the life, but others have turned it down because it's too tiring,” Julie says. “If you need it, don't give up. There are a lot of resources out there. Stay healthy and stay prepared. Just doing it mentally is really hard.”

Major surgery can be financially burdensome, but help is available: Donors can be reimbursed for certain expenses during the transplant process, which helped ease some of the Helfrichsches' anxieties, and groups such as the National Transplant Foundation raise funds to help transplant patients.

In Illinois, awareness of organ donation increased with the establishment of an organ donor registry by the Secretary of State's office in 1992. About 25 years ago, organ donation advocates were invigorated when Chicago Bears football legend Walter Payton needed a liver transplant. Payton himself was an organ donation advocate, but he died of liver cancer in 1999, and his family continues to advocate for organ donation.

According to the Illinois Secretary of State's Office, Illinois has the largest organ and tissue donor registry in the country, with an average of approximately 20,000 people registering across DMV facilities each month, with the current registry number at approximately 6.5 million. Approximately 300 Illinois residents die each year waiting for a transplant, and there are approximately 4,000 people on the waiting list at any given time.

Along the way, the couple heeded advice from her nephrologist: “Always answer the phone, always keep your appointments, be prepared, always be in touch with the right people,” Julie says.

When the university called a few days before Thanksgiving, the Helfrichsches prepared for the operation and trusted the surgeon.

“The transplant center at the University of Wisconsin-Madison was great,” Scott said. “They did a great job taking care of her and me, and seeing the doctors and dealing with us. It's been a very positive thing and we would definitely recommend them. They have a great program and great people.”

“People considering donating their organs are treated very well as donors,” Julie says. “They don't have much to lose.”

Julie and Scott don't know who donated their kidneys or who received Scott's, but because of medical privacy laws, they know that Julie's donor was a man in his mid-50s who lived about three hours outside of Madison, and Scott's kidney went to a man in Wisconsin.

The Helfrichsches celebrated their 44th wedding anniversary in March with a week-long trip to Arizona, touring Sedona and Phoenix and attending a Chicago White Sox spring training game. Julie retired from BorgWarner & Donaldson in the city a few years ago, and Scott is set to retire this year from Coilcraft, an electronics company in Oregon. Retiring as they hoped will also give them the opportunity to spend more time with their 11 grandchildren.

Now that the Helfrichsches are out of surgery, they are quickly making plans to enjoy time together and be grateful for the gifts they have been given.

“We did what we had to do these last few years and it all worked out in the end,” Scott said.

“I'm so grateful,” Julie said. “It's a miracle.”