In 1995, Karen Molisee was diagnosed with primary sclerosing cholangitis (PSC), a disease of the liver caused by inflammatory bowel disease. PSC damages the bile ducts that carry digestive waste from the liver to the small intestine, which can cause scarring of the liver.
Karen and her doctor were able to medically manage her disease for years, but by January 2018, her disease had progressed to the point that she needed to put on the liver transplant waiting list at UPMC. During her transplant evaluation, she learned that her chances of finding a match through deceased donation were low.
She also learned about the UPMC Living Donor Champion Program, which offers patients resources to help them find a living donor.
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My First Living Donor Champion Workshop
In May 2018, Karen attended her first Living Donor Champion Workshop at UPMC.
“I didn’t know exactly what to expect,” Karen says. “But I was looking for ways to better share my story.”
At the workshop, she learned about an important but often-overlooked role in the transplant journey: The Champion. UPMC recommends that every transplant patient begin their living donation journey by identifying a Champion—a friend or loved one who can be the patient’s advocate and help them to find a living donor.
“The workshop was informative and interesting,” she says. “I learned a lot about where and how to share my story and I left feeling motivated to try new things.”
Karen and her Champion shared her story far and wide. They spoke with:
- Family members
- Window decal advertisements in their car windows
- An article in the local newspaper
A few people signed up to be evaluated. No one was a match. That was hard news to take – but Karen knew that she had a long journey ahead of her. One year later and she was back to the drawing board.
“I couldn’t give up. I was too sick,” she says.
My Second Living Donor Champion Workshop
“When the invitation for the second Champion Workshop came, I thought it would be a great chance to get some new ideas and see how other people were sharing their story,” Karen says.
At the workshop, she met 13 other people, patients and Champions, including a Champion at the end of her journey – Tasha Livingston. Her husband had received his lifesaving transplant and had returned to a healthy, active life. It was Tasha who gave Karen the extra boost she needed to keep searching.
“Tasha was wonderful,” Karen says. “We spoke after the workshop and she was always full of ideas and energy. Meeting her was a huge help to me.”
After the second workshop, Karen and her Champion continued to search. They shared Karen’s story in a few other ways:
- A Facebook page updated every few days with pictures of Karen at home
- Local fire fighters and first responders
“The Champion Program is a great for way to learn how to share your need for a donor and to meet people who understand what you are going through, because they are on a similar journey,” Karen adds. “I found that kind of support very helpful.”
The Solution: A Stranger Donates Their Liver
A few months after attending her second workshop, Karen finally received her lifesaving liver transplant.
She often thinks about everything she and her Champion did to find a donor. She’s not sure what finally “worked” because she still doesn’t know who ended up being her living donor.
“My donor was anonymous, and we’ve never met,” Karen says, “I don’t know who they are.”
Her donor might be a family member, a friend, or a community member who saw the story in the newspaper, or even a stranger who discovered the Facebook page. Her living donor could have come from anywhere. And that’s true for everyone searching for a living donor – where you find your donor might surprise you.
The search for a living donor is a journey. At UPMC, you have access to resources to help you on your search. To learn more about the UPMC Living Donor Champion Program, visit UPMC.com/LivingDonorChampion.
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About Transplant Services
For more than four decades, UPMC Transplant Services has been a leader in organ transplantation. Our clinicians have performed more than 20,000 organ transplant procedures, making UPMC one of the foremost organ transplant centers in the world. We are home to some of the world’s foremost transplant experts and take on some of the most challenging cases. Through research, we have developed new therapies that provide our patients better outcomes — so organ recipients can enjoy better health with fewer restrictions. Above all, we are committed to providing compassionate, complete care that can change – and save – our patients’ lives. Visit our website to find a provider near you.