When I received my liver transplant in 2004, I knew that in order to protect this incredible gift of life, I would stay on anti-rejection medication for the rest of my life. “Sure thing,” I thought. “I will do everything possible to keep this liver healthy and happy so I can spend as much time as I can with my young family.”
Thanks to advances in transplant research and my participation in a clinical trial, I will most likely live the rest of my life with my transplanted organ without immunosuppression medication. But I am unique. Here’s my story, and a few things to know if you or a loved one is taking anti-rejection medications.
First, what are anti-rejection medications?
Anti-rejection medications, known as “immunosuppressive drugs,” help prevent the immune system from attacking the transplanted organ and causing damage. Although these medications keep the liver healthy, they also come with serious side effects like increased risk of infection and certain kinds of cancer and kidney damage. And the medications can be expensive.
After 12 years with this transplanted liver, I was already on low doses of medicine. I was one of the lucky ones. My body accepted this gift and I never had a “rejection” episode, which is quite common and easily managed in most transplant recipients.
However, I still had to take my pills every day and get the prescription refilled every three months. I had to carefully review my health insurance each time the policy changed to make sure the drugs I needed would be covered. I was warned to watch my exposure to the sun and get routine exams by a dermatologist because immunosuppressive drugs put transplant recipients at higher risk of developing skin cancer.
My clinical trial experience
In early 2017, I learned about a clinical trial that was studying patients like me. I qualified because I was three years post-transplant. I was taking tacrolimus and I did not have a history of hepatitis C or HIV. The goal of the study was to gradually reduce anti-rejection medicine in liver transplant patients over a period of time to determine if the medication could be stopped all together. They called this “immunosuppression withdrawal.” I signed up!
Over the next three years, I gave a bunch of blood and had three liver biopsies. One of the six study sites was Baylor University Medical Center in Dallas. I came to the hospital for physical exams and filled out questionnaires. I provided urine and stool samples.
The researchers closely monitored my liver function tests to make sure my liver was working right as they slowly reduced the amount of medication I was taking. My daily pill transitioned to every other day, then every three days, then once a week. Midway through the trial, I was told to completely stop taking my pills.
We watched and waited, and I gave more blood and liver tissue samples. My transplanted liver kept working just like it had since 2004.
Wow! I achieved tolerance. That means I will most likely live the rest of my life with my transplanted organ and won’t need immunosuppression medication. But I am unique.
“Every transplant patient is different.”
The results of this study have not been published yet, but according to James Trotter, MD, Director of Transplant Hepatology at Baylor University Medical Center, it is very rare for liver transplant patients to successfully stop all immunosuppression medications.
“In previous studies dating back to early 2000, only about 1 percent of participants successfully weaned off their medication,” he said.
My liver doctors warn patients multiple times a day not to adjust their medication without close supervision.
“Every transplant patient is different,” Dr. Trotter said. “We don’t want patients to take more medication than they need, so we work with our diverse patient population to personalize their immunosuppression regimen. Our studies and those of our liver colleagues across the country show that with close supervision, we can eventually substantially reduce the amount of medication many of our patients require to maintain a healthy transplanted liver.”
An important goal of transplant research is to allow transplant recipients to live with minimal immunosuppression. The research that I was part of may prove that a carefully selected portion of liver transplant patients can indeed come off immunosuppressive drugs without damage to their transplanted organ. The study continues to assess whether biomarkers in my blood and tissue and the biomarkers from other study participants will eventually help predict which individuals can successfully reduce or discontinue immunosuppressive medication without rejection.
Learn more about liver research and transplant studies at Baylor Scott & White Research Institute.