STATE COLLEGE — If you did not know Kurt Behers, you would not be able to tell he has been going through a major health battle just from looking at him. When he’s not going on walks or bike rides with his wife, Deb Behers, and spending time with his family, he is busy fighting kidney failure and waiting to receive the call from his doctors that a kidney is available for him.
April is National Donate Life Month, a month aimed at bringing awareness to the need for organ, eye, tissue or bone marrow donors. According to the National Kidney Foundation, in 2021, 786,000 patients in the U.S. were living with kidney failure. However, less than 25,000 of those patients received a transplant. The following year, the U.S. completed 25,000 kidney transplants. Still, there is a great need for donations in the U.S.
On a fall day in 2018, while Kurt was hiking Mount Nittany, he noticed he was having trouble breathing. As someone who lived an active lifestyle, this raised concerns, which led him to get blood work done at a routine health visit. Upon receiving his results, he was quickly hospitalized and told he had stage IV renal failure.
After a biopsy was performed on his kidney, he was diagnosed with AL amyloidosis, a rare disorder that occurs when abnormal light chain proteins gather around organs, such as the heart or kidneys. For Kurt, his kidneys, lungs and heart were impacted.
According to the Cleveland Clinic, AL amyloidosis is most commonly treated with chemotherapy and/or bone marrow or stem cell transplantation. During his bone marrow biopsy, Kurt was informed he had a variation of multiple myeloma in his bone marrow and immediately began chemotherapy for six months before having a stem cell transplant.
On top of those challenges, Kurt battled pneumonia and COVID-19 and had to have spinal surgery done. After surviving health complications from COVID-19 that required him to be on oxygen for six months, Kurt began dialysis, a treatment that removes extra fluid and waste products from the bloodstream when the kidneys cannot do the job.
While on dialysis, Kurt was placed on a waitlist for a donor match, though finding a transplantation center proved to be another challenge he would have to face.
“It’s a long and lengthy process,” Kurt shared. “First of all, you have to find a transplantation center that’s willing to take you. I was turned down at UPMC Pittsburgh because of my amyloid involvement. So, I applied to Penn (Medicine), and after a lot of testing, they accepted me into the program. The minute that that occurred that I was accepted, they put me on the National Kidney Registry.”
The National Kidney Registry provides its patients with a website to share their stories in the hopes of finding a donor. (See Kurt’s story at nkr.org/LUX454.) While the website shares statistics about how many people view a profile, there is no guarantee a donor match will occur. That is what caused Deb Behers to start the testing process to potentially donate her own kidney.
Kurt and Deb Behers are no strangers to organ donations, though it has been many years now since their daughter, Dana Hardy, got the call that a candidate was available for her to receive the heart transplant surgery she needed.
“This experience has been different from how it was with our daughter,” Deb shared. “A heart transplant is different. It’s hard because somebody has to die. That’s a really tough thing to experience. That’s different from a live donation because, with that, the person is alive to say, yeah, you can take my kidney, you can take a piece of my liver or whatever you need.”
However, a living donation can take years to receive. The National Kidney Foundation estimates it can take anywhere from three to five years, if not longer, to receive a match.
“The longer you wait on the list, the more problems can happen, and dialysis is so awful on the body,” Deb said. To become a donor and get her husband off the waitlist, Deb has undergone three months of extensive physical and mental health screening. But for her, all the tests are worth it to support her husband.
“Everybody looks at things differently. I have tremendous faith and I think my faith has helped me get through this. I guess I knew that God had a plan. Maybe it wasn’t exactly what I had planned for our retirement, but I’ve just always believed that things were going to get better,” Deb shared. “Whatever way it turns out, we’ve given one hell of a shot.”
“At some point in our lives, you really learn to appreciate the smaller things in life that are out there every day that people take for granted,” Kurt said. “I especially appreciate the support my wife has given me.”
For Deb, the support has come naturally, she shared, explaining how though she has supported her husband by potentially becoming a donor and walking alongside him in this battle, he has equally supported her.
“This is my job right now. To be there with him, to support him. It is very hard to watch someone you love to go through this, but my top priority is to always be with him, to help push him through it. I kind of consider myself as his coach,” Deb shared. “We’ve been married for 52 years, and this has made our marriage stronger. It has given us courage we didn’t know we had.
“It’s the little things sometimes we don’t appreciate. We get so busy in our lives that we forget about all those little things. Health is such a blessing, and when you don’t have it, it can wreck you.”
In recent years, improved medication has made it so a genetic link is not required to ensure a successful transplant. All transplant centers require donors to be at least 18 years old, though some require donors to be 21 or older. Some medical conditions — like high blood pressure, diabetes and cancer — may cause the donor to be rejected.
While Kurt and Deb wait to learn whether Deb will be able to donate her kidney, or if another donor will come forward, they are doing their best to see the positives in their situation and spread awareness of the impact of organ donation.
“None of us know what our life is going to hold for us. I feel that one of the greatest things that we can do in our life is to give the gift of life to somebody,” Deb said. “Yes, there are people dying every day. But if we’re lucky enough to be that healthy, to be able to donate, we should. Someday, maybe someone will have to do it for us.”
