At age 54, Kathy Diehl thought life ahead looked amazing.
She and her high school sweetheart, Curt, had been married 33 years. They’d worked hard to raise three daughters and were enjoying life as new grandparents, traveling more than they had ever been able to before.
When Kathy kept getting sick in late 2014, she didn’t think much of it, figuring it would pass – until blood work results showed something seriously wrong. Kathy’s liver enzyme numbers were sky high.
Her gastroenterologist broke the news: Kathy’s hepatic steatosis (better known as fatty liver), a hereditary condition that had never been a problem since she was diagnosed four years earlier, had gotten significantly worse. Kathy was suffering from cirrhosis of the liver, an irreversible condition that would lead to liver failure within a few years. Her only chance at survival was a liver transplant.
“I assumed I would be placed on a waiting list for a deceased donor,” Kathy remembers, knowing by the time a liver became available, it might be too late. She knew that as a result of a critical shortage of deceased donor livers, many patients die each year while waiting for a life-saving organ to become available. “But my hepatologist at Penn encouraged us to look into a living donor liver transplant.”
A Glimmer of Hope, Right at Home
At the time, Kathy’s youngest daughter Sarah, then 26, was getting ready to move to Rhode Island to pursue her dream – the start of a program in wooden boat building and repair.
Devastated by her mom’s diagnosis, Sarah began poring over literature that had been sent home from Penn. She discovered the same thing her parents had been told: that the liver’s amazing ability to regenerate means that healthy, compatible living donors can give a portion of their organ to a person in need. In successful living donor liver transplants, a donor’s liver grows back to its full size within months and the recipient’s new liver grows as needed.
The benefits were innumerable. Most importantly, a living donor transplant takes away the risk of getting very sick, or dying, while waiting on a deceased organ donation to become available. And, looking towards the future, Sarah learned that post-transplant outcomes in people who don’t have to wait till they get very sick are much better – less time in the hospital and longer survival.
“When I found out there was a chance my mom wouldn't have to wait for her card to be drawn, there was no question. I knew right away that I would find out if I could be my mom's liver donor for a living donor transplant.”
The information they received, in addition to the fact that Penn had more experience performing living donor transplants than any other transplant hospital in the region, confirmed the Diehl’s decision to move forward.
There was no question that they would stick with Penn. Kathy had also been treated at Penn a few years earlier for an unrelated surgery and the experience reinforced her trust in her Penn team.
“The treatment I had received during my previous stay gave me confidence that I was in the right place, and I knew that Penn was highly regarded in the transplant field. It was convenient to our home in South Jersey, too."
From Loving Daughter to Liver Donor
Sarah is the only one of Kathy's three daughters who shares her blood type, making her the only possible donor in the family. Still, seeing Sarah start the process as she filled out the initial living donor questionnaire was tough for Kathy, even though she knew it was her best shot at getting a transplant sooner while still relatively healthy.
“Sarah's my little girl. My youngest. Being my donor would mean time away from the things she wanted to do. There are very weighty and important considerations. It wasn't something that I expected from her; it was something she pursued.”
Sarah began testing, evaluations and MRIs starting the summer of 2015– including psychological testing. As part of Penn medicine’s protocol, prospective donors have their own team of physicians, nurses, social workers and transplant coordinators, separate from the recipient’s, who help determine not just physical and medical suitability but also, and very importantly, emotional and psychological suitability.
“As her mother, it was good to know that there was somebody that was her advocate, to make sure she was 100% willing to do this,” Kathy says.
Beyond her one main concern – her mom’s declining health – Sarah was focused mostly on scheduling challenges.
“I basically had the summer to get the surgery, recover and be ready for a pretty labor-intensive school schedule in the fall,” she remembers.
A few months after her first information session with a transplant coordinator, the Diehl women were given the green light to move forward with the live liver transplant. And not a moment too soon: Even though Kathy felt okay most days, tests showed that her liver was deteriorating rapidly.
The Big Day and Now, the Rest of Her Life
On May 24, 2016, Kathy and Sarah underwent their respective surgeries.
The surgery to remove a section of Sarah’s healthy liver was performed by Kim Olthoff, MD. At the same time, in an adjacent operating room, surgeons Abraham Shaked, MD, and Peter Abt, MD, removed Kathy’s ailing liver and replaced it with the piece of transplanted liver from her daughter.
Mother and daughter began their recovery and were discharged seven days later, on the same day. Back at home, Curt Diehl set up what the family called their “recovery tent” on their back deck.
“After the surgery you’re instructed not to do a whole lot for three months,” Kathy remembers. “Having somewhere where you can sit and not do anything is really key. Somewhere that’s comfortable and helps you not feel isolated is really important.”
Walks from the tent to the end of the property slowly grew to walks to the end of the block. By September, Sarah was back at school in Rhode Island. Kathy was back on her feet soon after, playing with her three young grandchildren and planning her next trip.
Smooth Sailing on the Road to Recovery
After leaving the hospital following transplant, donors and recipients are encouraged to slowly resume normal activity. Most donors return to regular activity six to eight weeks after surgery. Both Kathy and Sarah follow the recommended follow up visit schedule to ensure that the healing process is successful and a full recovery is achieved.
“I'm in monthly contact with the Penn hepatologist and transplant nurse practitioner overseeing my case.”
Best of all, Kathy is well enough to do most things she loves, like sailing with her daughter.
“To still be here, to still be experiencing things with Sarah, it's a really big deal. It's a very important thing.”
It's a new lease on life that both Diehl women attribute to Penn Medicine.
“Without the transplant team at Penn, we would not be having this conversation today,” Sarah says. “I can tell you, there is nowhere else to go for a liver transplant but Penn,” Kathy adds.