Partners in life: Dixon woman receives needed kidney through exchange program

DIXON – Julie and Scott Helfrich aren’t unlike other couples who’ve been together as long as they have. In 40-plus years of marriage, they’ve been at each other’s side, building a life, raising a family, making friends, traveling. But last year, they did something not a lot of couples can say they’ve done.

They saved lives together.

The couple did it when they underwent operations as part of a program that gives people a gift that really does keep on giving: the gift of life.

In short, Julie needed a kidney, and Scott had one to give. There was just one problem: Scott’s wasn’t a match with his wife. Undeterred, the couple kept searching for a solution. That’s when they found out about the University of Wisconsin–Madison’s kidney exchange program, which pairs compatible living donors with recipients in need of a new kidney, and can help expedite the transplant process.

Instead of being on a list and waiting for compatible organs from a deceased donor to become available, people in need of a kidney can be matched with a living donor in a few different ways. In the Helfriches’ case, they were candidates for the paired kidney exchange in which a donor doesn’t match the intended recipient, but still can donate a kidney to someone else who needs one. The intended recipient gets a kidney from another living donor after the university places them on the National Kidney Registry.

It turned out to be the perfect solution. Julie was given a new lease on life, and Scott was able to provide the same for someone else.

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

“It’s a great program because I don’t have to be a match [to her] when it’s hard to get a match,” said Scott, 64. “I can give a kidney, and she can get one, and two or three families are helped out, and it’s a lot quicker for people.”

Scott’s sacrifice wasn’t lost on Julie, 68.

“He knew he wasn’t going to be a match, but he decided to go through the process,” Julie said. “He’s my hero.”

Scott applied to be in the exchange program in early 2023 and was approved in June. Then came the process of finding compatible matches, which wound up lasting five months.

“One of the benefits of a living donor is that the acceptance of the kidney is much higher,” Julie said. “The chances that the body will accept the kidney is much more likely if it’s from a living donor.”

“We were told that it would take six months, but it took five,” Scott said. “A few days before Thanksgiving, she got a call, and then I got a call at the same time. They told her that they had a match for her, and they told me that they had someone for me to give [my] kidney to.”

After three weeks of planning, which included sheltering in place to prevent being exposed to illnesses and viruses, Scott had his surgery Dec. 12 to remove his kidney, and Julie had hers Dec. 13 to get her replacement.

______

This wasn’t the first time Julie and Scott had faced a health challenge together. Julie survived breast cancer more than 30 years ago. About six years ago, she developed a tumor on one of her kidneys that necessitated its removal. Three years later, the other kidney started to go bad, and doctors determined a transplant was needed.

At first, the couple, who tend to be more on the private side, shared their ordeal with only close family members. But as time went on and the situation became more serious, the couple opened up to more people in hopes of getting the word out and finding a donor. During an online Zoom get-together with her siblings, Julie was persuaded to go public.

“That was a hard decision for me,” Julie said. “I have six sisters and three brothers, and we Zoom every Sunday morning. One morning, they said: ‘It’s time. You have to tell people.’”

Although that decision wasn’t easy, it resulted in an outpouring of love and concern. The couple would find out later that friends and family were tested as potential donor candidates. Even though they weren’t able to donate to Julie, she said many of them became more aware of the health of their own kidneys, and one friend even became an organ donor herself and, like Scott, donated a kidney.

“It worked out that, because of her run to help Julie, she was able to help someone else out,” Scott said.

Once the couple finally went through the surgery, the family was able to breathe a collective sigh of relief. They even gave Julie’s new kidney a name – “Kevin,” named for her favorite character in “The Minions” film series.

“We were both in recovery at the same time,” Julie said. “It’s just amazing about all of the help and support we got. When I got back to the room, I could see the look of relief on my four daughters who were in there waiting for me. There was a lot of joy and relief.”

These days, the couple is adjusting to life after a transplant, which means anti-rejection meds and weekly testing for Julie. Scott doesn’t have to change his diet with one kidney, but he must be mindful that he has just one.

“That’s our new normal, but that’s fine,” he said. “That hasn’t stopped us from traveling.”

By February, the couple was back enjoying vacations as they had wanted to – and without worry.

When they became donor candidates, the couple had to adjust their lives. When they took a vacation, they would try to plan trips around Madison and southern Wisconsin, where they would be close to the hospital should they get the call that a kidney had been found. When they did venture farther from home, they would go through emergency scenarios ahead of time just in case.

“We were still taking trips but were always thinking about, if something happened, how quickly we could get to an airport and all of that, thinking that it could happen,” Scott said.

Recently, they visited family in Florida for two weeks and enjoyed playing pickleball, kayaking and riding bicycles. It was all a welcome change from the waiting and worrying that had become part of their lives for so long, especially for Julie, who’s committed herself to being more physically active than she was in recent years.

“I would like my activity level to be a little higher, but I’m working on that,” Julie said. “Anti-rejection meds are a challenge, but I’m just working through it. Some of the meds I’m on will get reduced or eliminated eventually, but we’re back to being normal again.”

Julie learned early in life to be proactive when it came to her health. She was diagnosed with breast cancer 32 years ago after pushing to have a mammogram when she was 36, at a time when the medical profession wasn’t as proactive about recommending women that age get the test.

“I talked them into it because I had two paternal aunts who already had breast cancer,” Julie said.

Her insistence paid off.

“They found breast cancer in my first mammogram,” she said. “It all happened because I just asked. I felt that it needed to be done, not that I wanted to find things wrong.”

____

Being in the kidney program has been a learning experience for both Julie and Scott, which has allowed them to offer words of advice to others who may find themselves in the same situation. They know firsthand how overwhelming it is to have to be ready for major surgery on a moment’s notice, but the couple stayed strong, committed to getting through their ordeal together.

Organ transplants can be a daunting process full of ups and downs. Not only must donors be found, but they must be compatible. The list is long, and the wait can be, too, and sometimes the search is a race against time. According to the U.S. Health Resources and Services Administration, more than 100,000 people are on the waiting list for an organ donation, and even when a donor is found, the costs can be monumental: an estimated $350,000 for a pancreas to almost $1.4 million for a heart transplant, according to the National Foundation of Transplants, with out-of-pocket costs for the patient ranging from $69,000 to $276,000.

According to recent statistics from the HRSA, kidneys are the No. 1 organ when it comes to both the number of people on the waiting list – almost 89,000 – and the number of transplant surgeries – almost 16,000.

“I’ve read where for some people, that’s their life: backpacked, mentally ready, and I’ve read where people have turned that down because it’s too tiring,” Julie said. “For someone who needs one, just don’t give up. There are a lot of resources out there. Stay healthy. Be ready. It can be real taxing just to even mentally work through it.”

There’s also the financial burden of a major surgery, although help is available. Donors going through the parting process can be reimbursed for a portion of certain expenses, which helped relieve some of the concern for the Helfriches, and groups such as the National Foundation for Transplants raise money to help transplant patients.

Awareness of organ donation picked up in Illinois in 1992 after the establishment of a donor registry through the Illinois Secretary of State’s Office. Efforts to continue promotion increased about 25 years ago through Chicago Bears football legend Walter Payton’s story of his need for a liver transplant. Payton himself promoted organ donation before eventually dying of liver cancer in 1999, and his family continues to be active in its promotion of organ donation.

According to the Illinois Secretary of State’s Office, Illinois has one of the largest organ and tissue donor registries in the nation, averaging about 20,000 signups per month across Department of Motor Vehicle facilities, with about 6.5 million current registrants. About 300 Illinois residents die each year waiting for a transplant, and about 4,000 people remain on the waiting list at any given time.

During the process, the couple took to heart some advice from her nephrologist: “Always answer your phone, always meet your appointment, be ready, be in constant contact with the necessary people,” Julie said.

When the calls eventually came from the university in the days leading up to Thanksgiving, the Helfriches readied themselves for the operation and put their trust in the surgeons.

“The transplant center at the University of Wisconsin–Madison has been awesome,” Scott said. “They did a great job taking care of her, taking care of me, and with all of our doctor visits and responding to us. That’s been very, very positive, and we can definitely recommend them. [It’s] great program and great people there.”

“For people thinking about donating, you get treated very well as a donor,” Julie said. “You don’t miss too much.”

Although Julie and Scott don’t know who the donor kidney came from, nor who received Scott’s, because of medical privacy laws, they were able to find out that Julie’s donor is someone in their mid-50s who lives about three hours away from Madison, while Scott’s kidney went to a man in Wisconsin.

The Helfriches celebrated their 44th anniversary in March with a weeklong trip to Arizona, seeing places in Sedona and Phoenix, and taking in White Sox spring training baseball games. Julie retired a few years ago from Borg Warner and Donaldson Co. in town, and Scott will retire this year from Coilcraft, an electronics company in Oregon. Retirement – the way they wanted it to be – also gives them an opportunity to spend more time with their 11 grandchildren.

Their surgeries behind them, the Helfriches aren’t wasting any time making plans to enjoy their time together and appreciate the gift they’ve been given.

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

“I’m truly thankful,” Julie said. “It was a miracle.”