As far as she was concerned, Michele Bruno was in great health. So, in April 1995, she was in shock when she was suddenly diagnosed with liver disease at age 27.
Routine blood tests at her annual physical showed very elevated liver enzymes. After weeks of testing, Michele was diagnosed with a rare, severe liver disease called primary sclerosing cholangitis (PSC).
In most people with PSC, the disease progresses slowly but it can eventually lead to liver failure and repeated infections. In short: Michele’s liver was attacking itself.
“I was shocked,” says Michele. “I felt perfectly healthy. They couldn’t predict the progression of the disease – it could get worse in two years, it could get worse in 20. I was just stuck, waiting for the symptoms to appear. And once you’re diagnosed, it’s always on your mind.”
Liver Transplant for Primary Sclerosing Cholangitis
Her husband, Charlie, was by Michele’s side when she received the diagnosis. He recalls, “We broke down – it was devastating. Here we were, young and newly married. We had our lives planned out ahead of us and couldn’t wait to start a family. And then, in that moment, we found out our lives weren’t going to be what we thought. From there on out, our life was consumed with reading about the disease and looking at treatment options.”
A liver transplant is the only known cure for PSC. Michele didn’t need one yet, but she would eventually need it in order to live. So, she was evaluated for a transplant, and her medical team recommended her to be put on the transplant list.
Finding a Living Donor Liver to End the Long Wait
In 2000, five years after her diagnosis, Michele was still on the transplant waiting list. Each year, the number of people on the waiting list continues to be much larger than the number of donors, or available organs. Michele was one of more than 10,000 people waiting on a liver. Getting off the wait-list was made more difficult by how rare her condition was.
“There’s a scoring system to determine who is higher up on the transplant list,” recalls Michele. “And rare diseases like mine tend to fall through the cracks when scoring. I would need to get sicker before I could move up on the list, but of course, I didn’t want to get too sick.”
By this point, the liver disease was clearly visible. Down to 100 pounds, Michele described herself as a “walking skeleton.” One of her physicians, Abraham Shaked, MD, PhD, warned her that she might not get a liver in time and that she should start to consider a living donor transplant.
A living donor liver transplant is when surgeons take a piece of a health donor’s liver and put it into the person with liver disease, removing and replacing their diseased liver. The donor’s liver will regenerate and grow back to its normal size.
Michele’s husband Charlie wasn’t a match, so he couldn’t donate part of his liver. Since every surgery comes with risks, Michele didn’t even think to ask anyone else to do it.
She explains, “Not only was it a risky procedure, but also a major life interruption. Living donors need to undergo pre-testing to make sure they’re healthy, get a stamp of approval from a psychiatrist and then spend months recovering. And they have their own families and kids to look out for. I couldn’t ask anyone to make that sacrifice.”
So, Michele and Charlie didn’t tell anyone about the living donor option. Instead, Michele spent the next five years with her name on the transplant list, waiting for a miracle.
Finding Her Living Donor Match and Her Miracle
In May 2001, while waiting for a suitable liver to become available, Michele asked Charlie to take her to the healing grotto of Lourdes, located in France. Some people go there hoping for miracles – so even though she was so weak that she couldn’t even walk up the stairs in her house, Michele knew that this was the place to go for a miracle.
It only took a few months after returning from France for that miracle to come along.
Michele’s cousin Kristen was very worried about her, so she had been researching how she could help Michele. Shortly after Michele returned from France, Kristen gave her the good news: She wanted to be her living donor, and she was a perfect match.
At first, Michele was hesitant. Living donor transplants were still fairly new, and Michele didn’t want her cousin to have the surgery. But when she tried to talk her out of it, she wouldn’t let her.
“I could die crossing the street tomorrow. Michele will die if she does not get a new liver,” explained Kristen.
Seven years to the day after learning of her diagnosis, Michele accepted her cousin’s generous offer. On March 20, 2002, Dr. Shaked and Kim Olthoff, MD, performed the transplant – and Michele became the 11th adult at Penn Medicine to receive a liver transplant from a living donor.
“The surgeons, nurses and transplant coordinators at Penn really helped to calm my nerves. They were there with me every step of the way, from the time I was listed to the time I was transplanted. They treated me like family,” says Michele.
The surgery was successful – both Michele and her cousin recovered without complications. While Michele’s entire recovery took about six months and had its fair share of ups and downs, she eventually regained her strength and energy.
“A liver transplant is another chance at life,” Michele says.
Michele and Charlie were beyond thrilled and relieved that Michele was able to overcome her life-threatening disease. But they didn’t know that their journey wasn’t over just yet.
A Second Hero
With liver disease in her past, Michele and Charlie decided that it was time to start a family. However, there was a major hiccup: Because of Michele’s organ transplant, it was not safe for her to carry a baby through pregnancy. She could risk damage to her liver, as well as put the baby at risk for being born prematurely.
“We already knew she wouldn’t be able to carry a baby,” recalls Charlie. “That had been one of the most devastating parts of the diagnosis. But now that she was better, we didn’t want to give up on our dream of having a child.”
The couple decided to adopt, but the adoption proceedings fell through at the last minute.
Then, in the summer of 2003, Michele’s coworker stepped in. She offered to carry their baby via in vitro fertilization.
They decided to give it a shot.
“That’s when we discovered the great team at Penn Fertility Care,“ Michele says. “The in vitro fertilization worked on the first try, and nine months later, we were parents to a healthy boy.“
Michele and Charlie named their son Christian.
However, there was still one more leg of their journey left.
The Last Hurdle
Six years later, in June 2009, Michele had a routine colonoscopy at Penn Gastroenterology. It turned out that Michele had stage 1 colon cancer, meaning the cancer was in its early stages – it hadn’t spread throughout her body and was treatable.
“At first, it was like, ‘We just got across the huge hurdle of a liver transplant, we had a baby – why is this happening?’ explains Charlie. “But we quickly realized that there was no use in saying, ‘Why me?’ It can happen to anyone. Instead, we started saying, ‘Why not me?’”
With their “why not me” attitude in place, Michele and Charlie once again put their faith in the team at Penn Medicine.
Michele says, “There was no question that we were sticking with Penn. It’s not that they have the best physicians in the area – they also treat you like family.”
Michele had two surgeries performed by Najjia Mahmoud, MD. The first was to remove her entire colon and create a j pouch from her small intestine, which would function as a colon. The second, a re-connection, was performed three months later to allow Michele time to heal. She went on to make a full recovery.
“Not only has Penn saved her life twice, they also helped bring life to our son Christian,” says Charlie. “And each time we were at Penn, we felt comfortable. It was our safe place where we knew that everything was going to be OK. Their competence is just intangible – you can’t even put a finger on it.”
Happily Ever After
Today, at 50 years old, Michele’s health remains stable. While she monitors her health and frequently checks in with her physicians, she tries to live in the moment.
“So much has happened, but I try to focus on the positives instead of worrying about the future. We can never know what’s coming in the future, but I feel great right now,” says Michele. “I remind myself that whatever happens happens, and that for now, I have to live for today.”
Michele works as an audiologist and speaks about organ donation at schools, churches and service organizations. She also volunteers as a speaker for Gift of Life Donor Program, a group that raises awareness about organ donation and encourages people to sign up to be organ donors.
Her son Christian is 14 and a freshman in high school, where he competes on the lacrosse team and performs as a drummer in the school’s concert band. He also races micro sprint cars throughout the country as a representative of Driven2SaveLives in honor of his idol and racing legend Bryan Clauson. Following Clauson’s tragic death, he became a hero by saving five lives as an organ donor and enhanced the lives of dozens more with cornea, tissue and skeletal donations.
Of course, Christian’s racing suit is complete with the emblem for Donate Life, the symbol to promote organ donation. Because without the miracle of organ donation, he wouldn’t be here today.