The Challenge: Wilson’s Disease
Matt DeSimone was diagnosed with Wilson’s disease in 2008. He kept his disease under control with different medications and frequent doctor visits, until an accident in 2017 changed his way of life.
Matt was deployed as a part of the Pennsylvania Emergency Management Agency (PEMA) to aid in the response to hurricane Irma in 2017. While he was deployed, Matt suffered an accident where he broke his ankle and elbow. After surgery, a blood clot formed in his ankle and traveled to his heart and lungs which resulted in a pulmonary embolism.
“About 80% of my one lung was blocked with fluid buildup and 60% of my other lung had buildup in it as well,” said Matt.
After doctors at UPMC Shadyside treated Matt for the blood clots in his lungs and heart, he felt like his hospital journeys were coming to an end.
The Path to a Living-Donor Liver Transplant at UPMC
Soon after he was released from the hospital, Matt began to slowly make his way to the gym to regain the strength that he had lost over the past few months.
“I was working out, eating right, but for some reason I kept gaining weight,” said Matt.
“It wasn’t weight gain on the sides or anything, it all was going to my stomach.”
When Matt was about to leave for the gym one afternoon, he asked his wife, Stephanie, if she wanted anything from the kitchen.
“The next thing I know I was on the kitchen floor looking up at paramedics and my wife,” said Matt.
Matt was then taken to UPMC Presbyterian hospital in November 2018 and diagnosed with middle-stage liver failure. That was when doctors told him he needed a liver transplant.
Matt was in the hospital until December 2018 and wanted nothing more than to spend what he thought might be his last Christmas at home with his wife and 4-year-old daughter.
“I asked if I could go home for the holiday because I didn’t want to spend my last Christmas in the hospital, especially when we had a 4-year-old daughter at home,” said Matt.
Two days after Christmas, Matt became very ill and had to be readmitted to the hospital. By then, he was in end-stage liver failure and needed to receive a transplant quickly.
Doctors began discussing the possibility of a living-donor liver transplant to help him receive a transplant sooner.
Stephanie immediately informed Matt and his doctors that she wanted to be his living donor.
“She told us that she has a feeling that she’s going to be the one who saves my life,” said Matt.
Matt had multiple friends and relatives that went to be evaluated to be his living donor. None were a match. Until Stephanie completed her evaluation process, and she was told she was a perfect match for her husband.
“Without her I definitely wouldn’t be here today,” said Matt.
Matt and Stephanie underwent a successful living-donor liver transplant in Jan. 2019, six months ahead of when doctors believed he would receive a transplant from a deceased donor.
“My wife and I are feeling good and haven’t had any complications since the transplant,” said Matt.
Twelve weeks after his transplant date, Matt’s liver has grown back to full size and after a little over a year, his medication has been reduced to smaller doses. He believes a good support system is key to helping patients get through the transplant process.
“Every person I met at UPMC wanted to know how I was and that really helped normalize my situation,” said Matt.
“My wife would also be by my side watching our favorite shows and we would go for little walks in the halls. She’s absolutely amazing.”
Matt, Stephanie, and their daughter are now back to living the lives they’ve always wanted. Being together.
“My wife is my guardian angel and I always let her know that,” said Matt.