Minnesota woman gets a new kidney through a 16-person kidney exchange chain
Finding a matching kidney for Amy Infanger that her body would accept was said to be a 1-in-3,000 chance. A 16-person donor chain that included her husband, Bill, donating his kidney to a stranger he has still never met helped Amy find that match and get on her way to living a healthier life again.
OSAKIS, Minn. — Amy Infanger was busy during her work day Sept. 25 as a middle school math teacher when a call came in.
Like many teachers, Infanger does not answer her phone during school hours, and she had no reason to believe this call was more important than any other. But the fact that her husband, Bill, reached out shortly after let her know this was definitely a call worth taking.
On Oct. 21, Amy and Bill both went into surgery at the Mayo Clinic in Rochester as part of a 16-person kidney donation chain. Bill gave a kidney that went into a pool for a person he still has never had contact with so Amy could receive a new kidney.
Amy’s family has a strong genetic history of kidney failure. Her grandfather died in his 40s before dialysis was a standard treatment option. Of the eight children on Amy’s mom’s side, six of them have dealt with kidney failure, and many of their children have, too.
Now at 44, Amy’s condition had worsened to the point where she had been on a donor list for two and a half years. She was near going on dialysis, the treatment that takes over for what healthy kidneys would do for the body in ridding it of unwanted toxins and waste.
The Infangers were hopeful for a donor, but it wasn’t supposed to happen like this. Not this fast.
That’s why that call from a Mayo Clinic nurse saying they had found a kidney for Amy still brings some tears when recalling it.
“Before it all happened, I just tried not to think about it,” Amy said. “There’s only so much you can do to control it. You can watch what you eat to try to make it as easy on your kidneys as possible. It was so cute because (Bill) just sent me an email and said, ‘Mayo called me. My mind is just blowing up right now.’ They tried me, and I never answer the phone during school. Then I got a hold of him.”
A hard match
Amy was doing what she could to take care of herself.
She watched her diet closely. She is a junior varsity tennis coach in Osakis and said the tennis season, with just enough activity and fresh air, was often when she felt her best. But fatigue started to set in over the last couple years.
“It used to be she’d have a lot of energy up until 9, 10 when it’s time to go to bed,” Bill said. “Where once we started seeing this, she would eat supper and she’d just be shot. She’d come home from work and she’d barely have enough energy to have supper with us as a family.”
The Infangers felt they would have some control over the whole situation when it became clear that Amy needed a transplant more than two years ago. Bill was happy to donate a kidney to his wife, and the match seemed to work with both of their blood types.
Bill is the varsity football coach in Osakis and works at SnowTech Magazine. Both he and Amy are less busy in the summers, and the couple thought things would work out with Amy getting a healthy kidney from Bill at a date of their choosing.
“Then I got a call saying that for some reason, my body has all of these antibodies,” Amy said. “The nurse said you will basically reject 99.9 out of 100 kidneys. She said it’s not impossible, but you need to get out of the Midwest because so much of your genetics are so similar to people in the Midwest. If we can get to say Florida or California, your chances go up.”
The Infangers were told to prepare for a long wait. Odds of finding that match were said to be 1 in 3,000, but the fact that Amy did need such a specific kidney also moved her up the donor list.
Paired donor program
After the Infangers realized Bill’s kidney would not be a match for Amy, they learned about a program through the National Kidney Registry that helps facilitate donor transplants through a paired exchange donation.
In a paired exchange, a healthy, willing donor such as Bill can donate a kidney to another recipient in exchange for a compatible kidney for their loved one. Dr. Mikel Prieto, a transplant surgeon at the Mayo Clinic in Rochester with expertise in kidney and pancreas transplants and living donation, said the average life expectancy today of a kidney from a living donor is about 25 years, compared to 15 years from a deceased donor.
Not only does the paired donor program get more healthy kidneys to more people, but it is also leading to recipients being better matched with a kidney that leads to lower risk of the body rejecting the kidney over the long term.
“This paired donation is, in my judgment, a game changer,” Prieto said. “I see in the future that most kidney transplants from living donors will be done where you are actually not getting the kidney from your loved one. But actually somebody in your family or friends is donating a kidney to a pool, and then we are getting a kidney from that pool for you. I’m hoping one day not too far in the distant future, we’re making everyone understand that the best chance for everybody to get a transplant is that we all share our kidneys.”
The Infangers were happy to be a part of this program knowing that it was likely Amy’s best chance at a successful transplant.
The call that Amy got that September day in school was to tell her that they had found a match for her if the Infangers were willing to be a part of a long chain. A total of 16 people — eight donors and eight recipients of a kidney — from all over the country.
A chain like this has to get started by what is called a good Samaritan donor. This donor gives a kidney to a stranger and initiates a whole chain of transplants. The Infangers got to meet the good Samaritan donor who started their chain, a man from Arizona. The Infangers have also been in contact with the woman in Florida whose kidney was a match for Amy.
“I was glad I was prepared for it so I could emotionally steady myself,” Amy said. “We basically told him the same thing we told (my donor), ‘What you did was amazing and we will be forever grateful and consider you a hero.’ It’s a big step for someone to take. It is. As well as they do to take care of you, there’s always a risk involved.”
Amy and Bill both went into surgery at the Mayo Clinic Oct. 21.
Amy left the hospital Oct. 24, but had to stay in Rochester for two weeks for additional testing. The Infangers rented a vacation home so family members could be there to help.
Having all of this happen in the midst of a pandemic added another thing to think about, too. Amy is in a higher-risk category, not just in terms of what symptoms she might get if she did contract the virus, but also because she would have to stop taking the anti-rejection drugs she is on after the surgery to fight COVID. That could affect the health of the kidney.
“I asked, ‘If I go back to school and there’s students in the building, do I need to be extra careful?’ One of the nurses said you probably will be safer right now than in other years because everyone is wearing a mask and everybody is much better about cleaning and keeping things sanitized,” Amy said. “Since I’ve been home, I just try to stay home as much as possible.”
Amy’s body is accepting her new kidney well, and she said she is feeling pretty good right now. The medication she is on makes it hard to sleep sometimes, but doctors are starting to lower the dosages of those meds as she gets into her second month of recovery.
Amy returned to teaching full time Wednesday, Dec. 9. Kids are still in distance learning, but she is able to lead her classroom through video. Amy said the whole Osakis community has been amazing, from the district putting her well-being first and encouraging her to work from home during the pandemic, to families of the tennis and football teams preparing them meals that lasted for more than a month.
“I’m just so thankful that it worked out like it did,” Amy said. “Mentally, I kept preparing myself for the worst. The fact that it happened in 2.5 years when I was still feeling good, recovery is better when you’re feeling better. I’m just amazed it did work out the way it did.”
Thankful. Grateful. Those are the words both Amy and Bill use the most when thinking back on everything that has taken place to allow Amy this chance to live a healthier life.
“You just think of all the pieces that fell into place, and we’re just thankful and grateful,” Bill said. “We just have an attitude of gratitude for the whole thing.”