“The second we arrived at Penn, I remembered how informative and organized they are. My other hospital had been fine, but this was heads above.”
In July of 2016, Dan McMonigle’s little sister Terri was suffering from liver failure.
Though he’d never been treated at Penn Medicine’s Transplant Institute himself, Dan, a lifelong Philadelphia-area resident, knew its reputation for top-notch care and advanced treatment options. He told her they had to get to Penn.
“I was with her at Penn as she met with a psychologist, a social worker, the finance specialists, her hepatologist, the whole team,” says Dan. “I was very impressed by the process and learned quite a bit.”
In one of life’s very unexpected turn of events, everything Dan learned on behalf of his sister would soon hit even closer to come.
At 62 years old, Dan McMonigle assumed that the weight around his belly was the result of too much eating and too little exercise. It turned out to be ascites, a condition where fluid accumulates in the abdomen. Ascites is caused by cirrhosis, which often leads to liver failure. Cirrhosis can develop from many causes.
Dan underwent a procedure at his local hospital to drain the excess fluid but ended up in the emergency room again weeks later. For the Berwyn family man who’d always been active in his church, local Rotary Club and community, the news and the treatment took their toll.
“I was in the hospital for 14 days and lost a lot of weight and muscle,” says Dan. “Coming home, I wasn’t myself.”
Two more procedures followed. It was time to discuss a larger plan for Dan’s worsening liver function.
A Family History of Liver Disease
It turned out that Dan, like his sister, suffered from nonalcoholic fatty liver, a condition that causes irreversible liver damage. Dan was placed on the national organ donor waiting list, which matches deceased donors’ organs with qualified recipients.
“I continued with my local hospital system because their emergency room had referred me to a doctor I really liked,” Day says. “He explained my reality: My liver is not going to get better. All we can do is try to manage the pain and side effects as I wait for a new one.”
Dan started doing everything in his power to slow his liver’s decline. Around the same time, though, he got some sobering news: His sister Terri never made it to transplant. Her condition had worsened and she lost her life on her 60th birthday in 2018.
With his wife JoAnn’s encouragement and support through this devastating loss, Dan kept moving ahead.
“I was getting sicker, trying to stay in shape and build strength back. But everyone knows, this doesn’t get better.”
Dan’s doctor advised him that a living donor liver transplant was his best bet to get to transplant sooner, before he got too sick.
An Exciting Option
The liver’s ability to regenerate is at the heart of living donor liver transplants.
In living donor liver transplants, a healthy donor donates a portion of their liver to the person who needs it. Within a few months, the donor’s liver grows rapidly and function returns to normal. The transplanted portion does the same for the recipient. Living donor organ transplants often provide better outcomes than transplants from a deceased donor. This is in large part because recipients often undergo transplant sooner, before their health declines further, than if they’d waited for organ match from a deceased donor.
Dan and Jo Anne started talking to family and friends, but none of Dan’s immediate family turned out to be a match. And then Dan uncovered more discouraging news: His hospital system had not performed a living donor transplant in more than five years.
“I had friends who were being evaluated to see if they could donate a portion of their liver to me,” he says. “But this fact about the hospital gave them pause. I didn’t want to be a guinea pig.”
Finally, a friend at Dan’s church who was also a gastroenterologist and understood Dan’s health challenges, said what Dan had been thinking: “Dan, you have to go to Penn.”
The Penn Medicine Advantage
Penn Medicine’s Transplant Institute had performed more liver transplants than any other program within hundreds of miles of Dan’s home. It was experience Dan could trust; he made an appointment at Penn. Jo Anne will never forget what happened on the drive in to Philadelphia.
“We were in our car, discussing the questions we wanted to ask the doctors, when a white sedan merged in front of us. Its license plate spelled out the words GOD’S PLAN. I knew it wasn’t a coincidence.”
“The second we arrived at Penn, I remembered how informative and organized they are,” Dan says of that same day. “My other hospital had been fine, but this was heads above.”
Jo Anne was similarly impressed and at ease.
“The friendliness and helpfulness of everyone, from the parking attendant to the front desk staff, was amazing. Signs made the facility easy to navigate, and we appreciated the fact that everything was in one building. At our previous hospital, we had to walk from building to building, sometimes a few blocks, which was getting hard for Dan as he got weaker.”
Penn advised Dan that his focus should be on living donor organ donation to get to transplant as soon as possible.
“Dan really needed a transplant soon, and our preferred approach is getting a living donor transplant as it is the best way to ensure a transplant happens with as little delay as possible,” explains Maarouf A. Hoteit, MD, the transplant hepatologist at Penn who was taking care of Dan.
After undergoing the full evaluation, the Penn team confirmed that Dan was eligible to be a living donor recipient. His friends and family organized a donor awareness event on his behalf. Hundreds came out to support the McMonigles, contribute to medical expenses, learn more about living donors and even learn how to be screened as a possible donor for Dan.
The support was great for spirits, but couldn’t change Dan’s worsening medical reality.
“By now I was clearly getting sicker,” Dan says. “I was in bed by 2 pm every day, going to work less.”
It was at this point that Dan’s worsening medical reality became even more complicated. Following scans, the team at Penn Medicine discovered that Dan had liver cancer on top of cirrhosis.
“I was jaundiced and going downhill fast,” he recalls.
Luckily for Dan, his team had found the cancer and he could receive the treatment he needed at the region’s leading Abramson Cancer Center. At Penn, liver cancer is managed by a multidisciplinary team that includes liver transplant surgeons, hepatologists, oncologists, radiologists and radiation oncologists. The experts, the testing and the treatment he needed to manage his cancer and stay on the transplant list, all in one place.
A Dramatic Turn of Events
In March of 2019, a dramatic turn of events changed two lives forever. Dan learned that his son-in-law’s 42-year old sister Amy sustained an injury that left her brain dead. Her family, knowing Dan’s condition and that Amy was a registered organ donor, designated Dan as a directed recipient of her liver.
“Around 4 pm on March 17, we got a call from Penn asking us to come in,” Dan says.
On the 4th floor at the Penn Transplant Institute, Dan and Jo Anne learned that initial tests indicated that Amy’s liver would be appropriate for Dan. A transplant team was en-route and would return with Amy’s liver a few hours later.
“There wasn’t much joy, if I’m being honest. We didn’t know for sure, and even more, our son-in-law had lost his beautiful sister, who we loved. Jo Anne and I spent the next six hours talking, praying.”
Dan was prepped for transplant and wheeled into the operating room around midnight. Kim M. Olthoff, MD, Chief of Penn’s Division of Transplant Surgery, had performed the transplant thanks to his directed organ donation, thanks to Amy. When he woke up from anesthesia, his skin was no longer the yellow he had known through his illness for so long.
Dan made incredible progress during his recovery in the ICU and was moved to a regular floor after only two days. Still, the victory was bittersweet.
“I was on so much medicine, and my emotions were everywhere. I was experiencing serious survivors’ guilt, asking God why Amy, a mother of four children was taken away.”
Then, just a few days out from surgery, Dan was visited in his hospital room by a priest who, among many things, talked to Dan about his personal goal of building faith and medical resources in his native town in Africa.
Dan remembers thinking, “I felt a new calling, a new purpose. It helped take the edge off of my guilt.”
Post-Transplant Care and Recovery
Once at home, Dan received calls from his Penn team three times a day for the first few weeks. A nurse visited several times a week for in-person checkups.
“There were even video calls with the care team so they could see how I looked without asking me to come in,” he explains.
Today, Dan continues to regain strength and recover smoothly.
“As my wife says, in the last two months I’m really back to my old tricks!” he says with a laugh.
Dan is back to work as a real estate agent, volunteering and raising funds for everything from liver research at Penn to Project Cure, the organization focused on bringing resources to Africa.
Dan and Jo Anne visit Penn for follow-up visits and blood work every few weeks – a visit they look forward to.
“We have really grown to love Dan’s care team,” Jo Anne says. “They’re so good at what they do, among so many other things we appreciate.”
At home every morning, Dan weighs himself and then takes his temperature, blood pressure and pills. An app that Penn downloaded on his phone ensures proper pill timing, which is critical post-transplant.
“I would move into the 4th floor at the Penn Transplant Institute if they’d let me!” Dan says with a laugh. “Penn Medicine is amazing.”