George Magulak isn’t feeling as well today as he did last August when he was featured in the latest “Wolverines for Life” video promoting organ donation. The Oakland County dentist was diagnosed twelve years ago with primary biliary cirrhosis, an autoimmune disease that has progressed to near-liver failure. Since there aren’t enough available livers for everyone needing a transplant, George is in the heartbreaking position of knowing he needs to be clearly in danger of dying in order to move to the top of the waiting list.
“It’s been a challenge lately. I’m noticeably weaker, less steady on my feet and things are getting worse,” he says. George was admitted to UMHS twice recently with hepatic encephalopathy, a side effect of liver failure that affects the brain and can cause disorientation, forgetfulness and, sometimes, loss of consciousness or coma. In George’s case, he didn’t know who he was or where he was.
Officially, he sees his care team every three months, but in reality George has extra appointments because of his worsening condition.
“Everyone is very open about what is happening to me, and very kind, from the clerks to the nurses to the doctors,” he says.
Patients’ place on the liver transplant waiting list is based on the Model for End-Stage Liver Disease (MELD) score, which reflects both liver and kidney function as kidney damage is common in end stage liver disease. The liver serves as the body’s central metabolic hub, so the consequences of liver failure are profound and have a domino effect on other organ systems, as George is experiencing.
Prior to MELD, as many as 40% of patients waiting for a liver transplant in the state of Michigan died while waiting. Today the risk is 10%. George’s score is 19, but he needs to be more ill, with a score of 25 or more to move to the top of the list.
“Here at the University of Michigan, the risk of dying while waiting is 9%,” says Christopher Sonnenday, M.D., M.H.S., Surgical Director of the Liver Transplant Program at the University of Michigan. He says this is in part due to how closely the transplant team works with patients to maintain their health as much as possible while waiting.
For example, a new prehabilitation program matches liver transplant patients with trained medical student coaches who encourage and monitor patients as they work to increase their physical activity and optimize their nutrition. Wearing a FitBit and keeping a journal, patients meet every several weeks with their coaches for personalized programs in the form of exercise, education and counseling. George is one of the pilot participants.
“I have two wonderful daughters and a wonderful wife, and until recently, I haven’t really dwelled on the negative. It hasn’t been that hard to be positive, but over the last few months it’s gotten harder,” says George.
George dreams of having a future, but at the same time prepares for the possibility that he might not have one. He loves downhill skiing and hiking the Grand Canyon. However, he knows that even with a transplant, he has lost so much muscle mass that he may never do those things again. Having a normal exercise plan and lifestyle would be fine, mixed in with a little travel.
“I really want to be able to visit my daughters in their respective homes. Since I’ve been so sick, they are the ones who travel and visit me. It would be nice for them to stay put while I do the traveling,” he says. One daughter lives in Chicago and the other is about to start a summer job in Grand Rapids.
George knows that many patients and transplant programs also wait for the scarce number of available organs for transplant. Difficult life and death decisions are made while assessing whether candidates like George remain strong enough to recover after transplant. Meanwhile, his activities of daily living are getting harder and harder. He can’t do the things he used to do and the encephalopathy was “pretty scary.”
“The rigors of waiting are terrible, both physically and emotionally,” Sonnenday says. “Living with liver disease is a difficult process. Emotionally, it’s terrible, too – sitting for weeks and months, waiting for the phone call. It is very hard on patients, their caregivers and family members. We are committed to getting through this process with each of our patients safely and successfully.”
Take the next step:
- Find answers to questions about becoming an organ donor in Michigan or elsewhere
- Become a Wolverine for Life.
- Register as a potential bone marrow donor
- Learn about transplantation at the University of Michigan Transplant Center
- Learn more about the University of Michigan multidisciplinary Liver Transplant Clinic
For more than 160 years, the University of Michigan Health System has been a national leader in advanced patient care, innovative research to improve human health and comprehensive education of physicians and medical scientists. The three U-M hospitals have been recognized numerous times for excellence in patient care, including a #1 ranking in Michigan and national rankings in many specialty areas by U.S. News & World Report.