In Your Area
After 12 years of battling colitis, Brian was diagnosed with Primary Sclerosing Cholangitis (PSC). This is his story, in his words, about the journey he took.
At age 24, after 12 years of battling colitis, I was diagnosed with Primary Sclerosing Cholangitis (PSC). PSC is considered a rare liver disease, but it is 70 percent more common for people with inflammatory bowel disease like colitis. In patients with PSC, the bile ducts inside and outside the liver are narrowed by inflammation and scarring. The cause is unknown and no cure exists.
From age 24 to 27, I continued to be in and out of the hospital for days, and sometimes weeks, with episodes of high fever, itching, jaundice and pain on my right side. My daughter, Hannah, spent the first 4 years of her life visiting me at MGH. I lost 100 pounds and didn’t look or feel like myself. After countless tests, antibiotics and invasive procedures, I would go home and wait for it to happen all over again. My appearance changed so much that close friends did not recognize me. Clearly, something had to be done. The first issue my doctors and I tackled was my colitis. After 14 years with colitis, my “sure cure” was the complete removal of my colon. This surgery put me in better health for the hard decision that came next: addressing my PSC by putting my name on the list for a liver transplant.
Brian Burke, two weeks before transplant
After another year of living with my illness, my doctors and I talked about having a “live donor” transplant. The liver is a unique organ because doctors can replace an unhealthy liver in one person by transplanting only a portion of the liver from a healthy person. If everything goes well, within a few months both the donor and the recipient will have regenerated, functioning livers. In my case, my brother-in-law risked his life to save mine by donating part of his healthy liver to me.
Brian Burke, heading into transplant surgery
On August 21, 2001, surgeons removed 60% of my brother-in-law’s liver and transplanted it to me. The entire procedure took 14 hours. The day after surgery, we were both doing well and beginning our recovery. It truly was a miracle. On only the first full day of recovery, I felt 100 times better than I did prior to transplant. I even got back the rosy red cheeks I had lost for 6 years. My brother-in-law went home after five short days in the hospital and has not had any complications from surgery. He lives a normal life helping others, like he stepped up to help me. Within four months of my surgery, I was back to work and playing hockey again.
Brian Burke, 3 weeks after transplant
For the past 13 years, I have not spent a single night in the hospital and have had no complications from my living donor transplant. My family has also grown since my transplant, in 2003 my wife Amy and I welcomed our daughter Emma to the world. I am now able enjoy life, coach my daughters teams and spend quality time with my family.
On August 21, 2014 I will celebrate my 13 year transplant anniversary!
Brian Burke, 10 years after transplant
If you are interested in sharing your story of living with liver disease in our next patient spotlight, please contact Lindsay Ventura, Community Outreach and Education Manager, at firstname.lastname@example.org.