Transplant Immunology Research - Immunosuppressive Drugs
I suffer from primary sclerosing cholangitis, a rare genetic autoimmune disease which was diagnosed about 10 years before I had my liver transplant at Emory University Hospital in August 2002. Autoimmune diseases are pretty tricky. They come in all shapes and forms. There's nothing you can do to stop them or slow them down. The only cure, and ultimately the only treatment for this disease, is a liver transplant.
When I was first diagnosed, I didn't believe it. I thought, ‘not me.' I had no symptoms except elevated liver enzymes which showed up in blood work for five or six years and then I developed portal hypertension. This means too much blood was going through the portal vein into my liver, causing varicose veins in my esophagus. With too much pressure, they burst and you can bleed internally. The first time that occurred, I didn't know what was happening. It's pretty serious and you can bleed out. It happened to me seven times before I had major surgery. My anatomy had to be rerouted to create an internal shunt system. Three years later I had a liver transplant, after being on the waiting list for 14 months.
My liver transplant took eight hours and I had a positive outcome. I woke up after surgery feeling better than I can remember feeling in a long time. I love Emory. We didn't consider going anyplace else for my transplant surgery. The doctors and nurses are great, and I felt that they knew me.
Before surgery, I knew I was on a course to dying without a transplant. Now I don't feel like death walks with me every day like I did before it.
I thought that once I got my transplant, life would go back to normal. But getting a transplant is not really a walk in the park. For the rest of my life I'll need drugs (I take prednisone and Prograf®) to suppress my immune system so it won't see my liver as something foreign and attack it. Transplant patients walk a fine line between having our immune systems suppressed enough not to reject the transplanted organ and at the same time not making us vulnerable to every infectious thing out there. That's part of the balancing act we're trying to figure out. But it beats the alternative.
I have heard that Emory is researching new immunosuppressant drugs that prevent rejection of the new organ and are less toxic without the side effects. Anything that would help with rejection without carrying the burden of the current drugs I'm taking would be great. Currently the drugs I'm taking involve the risk of diabetes and other effects of steroids.
I serve as the co-director of the mentor project for the Georgia Transplant Foundation. We train people who have had transplants to be mentors to people who are waiting for livers and other organs. When people say they don't know if it's worth it, I never hesitate to say, "Of course it's worth it." Look at what I've gained. I'm going to be a grandmother in July. I was the mother of the bride two years ago. None of these things would have been available to me if I hadn't had this transplant at Emory. I'm healthy enough most of the time to do the things I want to do. And that is good enough for me.
Dorinda McCauley, 56, Atlanta