Letter from Transplant Physician
Dear Patients and Their Loved Ones,
Liver transplantation can be a scary medical term. To others it’s a lifesaving phrase filled with gratefulness. I became a hepatologist (liver doctor) and specialize in caring for patients who are in need, or have had a liver transplant as there is not greater satisfaction than assisting patients through complex medical testing and treatments and watching them thrive and succeed.
I’ve had the opportunity to care for people with Wilson disease who’ve needed liver transplants. I also care for healthy WD patients who we’re trying to keep healthy and avoid the need for a liver transplant.
If you have Wilson disease the most important thing you can do is take your medication every day for the rest of your life. This message is repeated throughout the website and there’s a reason for it. Too often patients stop taking their medication or don’t take it regularly. That’s a huge mistake. It’s also a mistake to think you can just get a liver transplant if your own liver fails and that everything will be okay. There is no guarantee that a liver transplant will be available in time and that the surgery will be a success. Liver transplantation does save lives and can offer a good quality of life for many years. But there’s a tradeoff: there are not enough livers for all those who need them and those who do get a new liver must be compliant in taking a number of medications that carry health risks. There’s always the chance that the new organ will be rejected.
In addition to taking your medication regularly it’s important to see your doctor as recommended for lab testing. If possible, you should be under the care of a doctor who has expertise in caring for the liver such as a hepatologist or gastroenterologist. To ensure that your liver is healthy and functioning normally you should have regular blood and urine tests.
Even when WD patients take care of themselves and get appropriate medical care their livers can sometimes, though rarely, fail. These patients shouldn’t feel guilty if they end up needing a transplant. We can also see patients who present with similar lab results and liver function and some respond well with therapy, while others progress to severe liver failure. It’s normal for patients and their families to ask, “Why?” Through research and case reports doctors are getting more information to help predict which patients are more likely to develop more serious liver disease.
The story of the twins, Brittany and Tiffany Duckworth is a perfect example of how WD patients can end up needing transplants. Brittany’s liver disease was sudden and severe. She didn’t have the opportunity to take the recommended therapy for Wilson disease because her own liver failed her before she could. While she’s grateful for her liver transplant and has had an excellent result, she says she would do all she could to avoid a transplant. Her twin, Tiffany struggled with medication compliance for WD and ultimately developed liver failure. It’s impossible to say if she could have avoided a transplant if she had taken her medication faithfully as they carry the same genetics.
The WD patients I’ve cared for represent the spectrum of individuals with this disease. I can assure you it’s possible to live a normal life and lifespan with this disease with an exceptionally high quality of life when the disease is recognized early and treatment and follow up with medical care occur. Even when there’s severe liver disease at the time of diagnosis, with good personal and medical care the liver can recover and function normally. That’s great news! I can also assure you that if a liver transplant is necessary, patients can have a long and productive life when they follow their doctor’s advice and take care of their new gift of life.
Lance Stein, MD
Piedmont Transplant Institute
Clinical Assistant Professor of Medicine, Mercer University School of Medicine