Searching for life, Rochester transplant patient relies on his 'team' for support
For those like Ken Hanson who are searching for an organ donor, it is essential to have a caring group of advocates who spread the word and provide encouragement.
Mary Schwalbe is always on the lookout for empty cork boards.
Discovering one, she’ll bolt back to her car, and grab a flyer: “Be a hero. Donate a kidney!” it reads, text wrapped around a picture of smiling Ken Hanson, a Rochester resident.
She’s just one member of Hanson’s team of close friends who have rallied behind the 61-year-old as he undergoes the emotionally and physically taxing process of searching for an organ donor.
Others on the team have planted large signs in their yards advertising Hanson’s need. Many wear buttons doing the same. Some have attempted to donate their own kidney. Most, including Schwalbe, have been halted during their evaluation due to some disqualifying factor.
These support systems are critical for people awaiting transplants as they battle psychological barriers, physical exhaustion and, for patients like Hanson who are on dialysis three times a week, constraints on their time.
"You need that support along the way to continue to give you hope and perseverance. Because if you don't have anyone, this is even more isolating and lonely," said Angela Samuelsen, a Mayo Clinic social worker who works with patients receiving kidney or pancreas transplants.
A quiet battle
Without seeing the sign on his car, the pin on his shirt or knowing the spots of blood on his sleeve are from dialysis, it’d be hard for an outsider to recognize that Hanson is battling for his life.
He can visit with his friends, go to family functions and frequent St. James Coffee — his favorite spot to connect with supporters — but these activities leave him exhausted.
"At the church I go to there's breakfast served right after the 7 a.m. mass. And it's kind of disappointing because my best friends are there, and sometimes I can't even get through sitting and having brunch with them," Hanson said.
The kidney decline has come slowly over decades, with a dramatic dip over the last three years. Hanson credits his kidney failure to taking the prescribed medication lithium, a mood-stabilizing drug used to manage his bipolar disorder.
"It is a common complication of lithium and it's one of the reasons why other drugs are often used or substituted," said Dr. Joseph Vassalotti, the chief medical officer for the National Kidney Foundation.
Transplant or dialysis weren’t ever serious considerations for Hanson until 2018, when his kidney function crept toward dangerous levels. He finally registered to join Mayo Clinic's kidney transplant waiting list.
“At the time it was kind of overwhelming,” Hanson said, adding that his slide to 20% function “came as a shock,” after years of relative stability.
Three years later, he’s still waiting for a match.
According to the Scientific Registry for Transplant Recipients, of the 848 patients on the Mayo Clinic waiting list for a kidney, 16% have been waiting three to five years.
Nationwide, 90,000 people await a kidney donor.
After he landed on Mayo’s waiting list, he went through what he calls his “denial period,” where he considered if he could continue to live his life without a transplant or dialysis. He focused on his diet and sought out homeopathic treatments, seeing minor boosts in his health. But it wasn’t enough.
The crippling headaches crept in. The lethargy was overwhelming. Dialysis was the only option to improve his quality of life in the absence of a donor.
The trials of searching
Hanson’s search for an organ donor has been filled with struggles, making the team around him even more important.
He originally opted for peritoneal dialysis, a more flexible option in that it doesn’t require the patient to go to a dedicated dialysis center, but does require him or her to be hooked up to a machine for much of each night. With this form of dialysis, a solution is filtered in the peritoneal cavity of the abdomen through a catheter, and filters waste products from the blood.
However, after the initial procedure to install his catheter, he sustained a series of severe infections, and he had to shift to hemodialysis.
Hemodialysis is more common for kidney patients, with 90 percent of dialysis patients using it, according to The Kidney Project from the University of California at San Francisco. The process uses an “artificial kidney” to filter blood, and the patient must remain connected to the machine for three to four hours a session.
Hanson could remain on hemodialysis for the foreseeable future, but he understands it’s likely not a permanent solution. The National Kidney Foundation states that most patients on this form of dialysis live for five to 10 years, although some life expectancies range into the 20- to 30-year span.
"The best outcomes are achieved for patients who starts with a kidney transplant and doesn't undergo dialysis," Vassalotti said. "Wherever you are in your journey, it's in your best interests to try to have a kidney transplant as soon as possible."
With renewed vigor, Hanson returned to his search for a match with the help of his supporters, who posted signs around town and spread the word on social media. He continued to do the difficult work of broaching the subject with his close friends.
"I don't like asking somebody else to do something pretty major, like donating a kidney to me. So you take that, and the fact that you don't feel in good health will because your kidneys are poor, because of dialysis... I think that's one of the reasons they recommend getting somebody on board who can help set up a team," Hanson said.
'People in his corner'
For Catherine Arnold, who met Hanson through church, reaching out to help during his search was a non-negotiable.
“The more you’re around Ken the more you want to be around Ken. He’s just a genuinely nice, decent human being. And you just want to go out of your way. If we could donate, we would,” Arnold says of herself and her husband Gerry.
Unfortunately, their own health concerns stopped them from doing so, but didn't stop them from finding other ways to help.
They planned frequent lunches with Hanson to provide emotional support and friendship, motivating him to continue with his search whenever he got down about his prospects.
Additionally, they planted a large sign in their front yard advertising Hanson’s need.
Sitting at her computer by their front window, Arnold often observes people walk past and grab a pamphlet. Sometimes they turn their car around in the street and run out to snag one. The gestures give her hope.
“I hope that things come through for him, I really do. He has so much to offer,” Arnold said. Hanson hopes to possibly return to working full-time and wants to help more on his dad's apple farm if he were to receive a transplant.
For Schwalbe, the 20-year friendship with Hanson makes being part of his “team” a no-brainer. One of the hardest things, she said, is trying to remember to provide support for someone like Hanson, who is naturally upbeat.
“He's got quite a few people in his corner, which is important,” Schwalbe said.
Dave Hagstrom, who owns several area laundromats, had wanted to donate a kidney since he was in his 20s, but it wasn’t until he met two people in need — one of them being Ken — that he began the process in earnest.
“If anything, I'm irritated at myself for not getting the job done before as I'm now 51,” he wrote in a message.
He began the evaluation process with Mayo Clinic, and made it through 2 1/2 days of exhaustive tests before the team concluded that he would have to lose weight in order to be an eligible donor. Now, he's focusing on meeting that goal.
“I'd rather not die with two working kidneys, I'd consider it quite a waste if it happens,” he added.
With each applicant who comes forward and is denied, Hanson gets his hopes raised and dashed. Samuelsen said it's one of the most psychologically taxing parts of the process.
"It is complicated. It can feel hopeless, but you can feel excitement, too, by getting a donor. And you can feel disappointment. You need that support in place to help you through this," she said.
Before he goes to dialysis on Tuesday, Thursday and Saturday, Hanson often stops by St. James Coffee Shop, where he sees Schwalbe and other members of his support team. Sipping on an iced americano sitting across from Schwalbe, he discusses the meaning of the location to him, pointing to the adjoining chapel where he often prays before going to dialysis.
"It's an exaggeration to say it's my Garden of Gethsemane," Hanson said, referring to a place of great biblical significance. "But it really is," he adds with a smile.