Posted 4/21/2013 9:46 PM (GMT 0)
thecucus,
I received a liver transplant on 8-23-09 at Massachusetts General Hospital. I found out I had Hep C in 2001 and went through interferon/ribavirin treatment for 48 weeks in 2004. On March 1, I had a cerebral hemorrhage that wasn't too bad, but 20 days later had a second bleed. This was serious and I almost died. My right arm was paralyzed, my Hep C which had been undetectable (for 12 months) came back with a vengeance and my liver went to high stage 3. A few months later I was recovered somewhat, though my speech was still messed up. It's fine now. I spent 4 years with my MELD score in the mid teens. I worked as much as possible, but it was difficult, between being incredibly tired, taking lots of lactulose and my legs and ankles were swollen.
In the spring of 2009, my legs were so swollen I was hospitalized (locally) for a week, with peritonitis. Got out, went back to work, but was very sick. In July, was tiling a bath for a customer, went home, fell asleep and woke up, because my legs were so swollen I couldn't bend them. Called my pcp, drove to the hospital and spent a week there. MELD score when I went in was 18, the highest I'd ever had. My doc gave me large IV doses of lasix and albumen. I lost 27 pounds of fluid in that week. Got out on a Sunday and felt better than I had for quite a while. On Tuesday saw my doc and he mentioned that my MELD was 24. It didn't register, as MGH had told me, I'd have to be up to 27-28 and even then it would probably be 6 months to a year before a transplant.
On Wednesday, I was headed to Boston (MGH) for a seminar for transplant patients. As I was about to fly to Cape Cod, I got "the call." Got on a bus to Boston and then took the T to MGH. Arriving at MGH at a little before 11 am, they checked me in. The transplant was performed late that evening and into the next morning (5 1/2 hours). The liver didn't start working and after 13 hours, they reopened me to check for possible blood clots in the arteries, but they were fine. Four hours later my new liver kicked in. I was anesthetized for 36 hours and woke up 2 days later. Spent 4 days in ICU and a total of 11 days in MGH. Had to stay in Boston, while they tweaked the meds. I went home 10 days after that. Had a small incisional hernia that was easily fixed at one year.
At first I had to go to Boston once a month, then every 2 months and then every 3. Now it's every 6 months. I was back to (light) work after 6 months. After a year, my viral load started rising, so I did 16 months of interferon/ribavirin and am now undetectable for 16 months. I did have a setback a year ago, which turned out to be Lyme disease and lost 20 pounds, before they figured out what it was. Having had Lyme twice before, made it difficult to diagnose. Got antibiotics and regained the 20 pounds in a month.
I was 59 when I received my transplant, am now 63. I live a fairly normal life, but realize that any day things could change. It's not something to obsess about. After dealing with liver disease and a transplant for a dozen years it's just there... I wake up every morning and get about my life. I realize that not everyone gets through this as well as me. I am also on a transplant forum online and some of the folks are doing better than me. Transplants have come a long way, even in the time since mine and they keep doing better. Getting a transplant and dealing with it beats the alternative. Last year, I found out (from my surgeon) that I was 2 weeks away from death, when I had my transplant, so that's 3 1/2 years I've gained. No complaints here. I hope I answered your questions.