Special Report: A Piece of Me, Live Organ Transplants Part 2
In part one of our special report, we shared the story of Teresa Kieffer and her extremely rare experience as a living, double organ donor.
In part two, we introduce you to a Manistee man waiting for a kidney transplant.
“They call me, and they’re going to laugh at me for this one, but the people at dialysis call me the poster child,” explained dialysis patient Jon Madsen.
Jon first started dialysis in 2009, after he was diagnosed with a blood clotting disease called Tetra-acetic Thrombotic Perpetua or TTP for short.
It worked for seven years, until it began to fail in 2017.
Jon returned to dialysis and the transplant list in 2018.
Explaining dialysis, Jon said, “They either go in through a catheter through your chest, which they call a chest cath, or they go in through a fistula graft. I have one in my arm, which is where they tie in the blood vessel and the vein. They take your blood out of your body, put it through a machine, and filter it through a dialyzer which removes all the toxins that your kidneys normally do.”
Three days a week, four hours a day Jon needs to have his blood cleaned in order to survive.
“If you don’t have a positive attitude at it, it goes downhill quick,” Jon noted.
A tough feat, knowing the average person in need of a kidney has to wait a long, often frustrating 7 years before they reach the top of the donor list.
However, living donors can speed up the process.
It’s not very common in the United States.
According to the Department of Health and Human Services, only about 23% of kidney transplants came from living donors last year. It’s even less for liver transplants.
Dr. Abhi Humar from the University of Pittsburgh Medical Center and Director of the Starzl Transplant Institute says, “If you think about it, yes 5% of the total number of liver transplants, but look at other places around the world. If you look at places like Asia, India, the Middle East, those places, about 90% of the transplants come from a living donor as opposed to the other way around here.”
Dr. Humar says the reason behind the difference is quite simple.
“Really the main reason it’s not become popularized is because people don’t know about it. The most sort of heart wrenching things that I hear are when family members come in and they need a liver transplant and they are just too far gone. There’s nothing that can be done. It’s too late, and their family member says to them, I wish I had known this was an option,” he explained.
While Jon doesn’t need a liver, the same concept can be applied.
The human body can function with just one kidney, which opens up possibilities for living donors like Teresa.
“Anybody that would be interested in donating, first of all do it. If there’s ever, in anything in life with donating an organ or giving something to help somebody, I feel like when we lead with our hearts you can’t go wrong. Do your research and get healthy,” explained Teresa.
Jon said, “Honestly, in this case, you know a lot of time you donate or you give something and you hope they use it in the right way. When you give something like this to somebody, I can almost guarantee you that it’s going to get used in the right way.”
Teresa, Jon, and Dr. Humar say it’s important to have a strong support system if you do want to consider becoming a donor.
“One other than I’ll add to that is don’t worry about the financials. If you’re a living donor, my insurance or the recipients insurance will cover your operation and everything that comes after that kidney related for the rest of your life,” explained Jon.
As for why someone might become a donor, Teresa said, “I think the big question is why would you knowingly put yourself through pain or uncertainty or that fear of not knowing what’s going to happen. If I could share anything with people, it’s sometimes just getting through that pain or uncertainty or fear, it’ll always transform you.”
And it could give someone like Jon, another chance at a normal life.
“That’s one less person on the cadaver list. It’s somebody gets a kidney. It’s one less person on dialysis. They’re Godsends. They’re angels from heaven. It’s definitely a blessing to be able to find somebody like that. The more people I can encourage to do it, the better off,” added Jon.
For more information on how to donate a kidney to Jon or someone like him, click this link to learn more about the University of Michigan’s transplant program.
For more information about Dr. Humar and UPMC’s Starzl Transplant Institute, click here.