collecting the chips.
Most of our members don't see a PCP or their GI doc once their liver disease gets bad. My partner switched from our local GI doc to a Hepatologist at a Major Medical Center known for its excellent transplant program.
Before that switch, Mike went to the community hospital with fever and somnolence (he had slept 23 hours in a row) and was diagnosed with sepsis secondary to End Stage Liver Disease...and put on 2 kinds of IV antibiotics for a week. Several things went VERY wrong during that hospitalization AND I found this site.
Several members recommended switching to a hepatologist. We had 2 major medical centers with transplant programs within 2 hours of our home -- in Orlando or Miami. It was 4.5 hours to Mayo, so that was too far.
We got an appointment in Miami within a month.
The GI doc was checking Mike's bloods but not escalating his care. The Hep in Miami wanted to keep Mike IN the HOSPITAL the day we arrived there and work him up, maybe keep him through til they got a liver, he was THAT bad...UNTIL MIKE ADMITTED HE DIDN'T HAVE THE 6 MONTHS SOBRIETY.
So, he was put into the Pre-Transplant program, had his bloods done monthly. He had 4 more hospitalizations in Miami where they started his work up as an inpatient. They could see he had quit drinking, was serious about
his sobriety, and were wonderful with him.
As I said above, he got his liver just after the 6 month sober mark...and just in time. His liver was decompensated, he has Hep C, and a 2 cm HCC.
He still has the Hep C, however...as it is blood borne and will infect his new liver, so he is not "home free" by any accounting. His post transplant department sees him quarterly now and the hepatology department has him enrolled again...keeping an eye on the Hep C. His viral load is really high...hoovering in the 25Million - 50 Million copies each quarterly test cycle. That will have to be addressed (again--failied treatment in 2003).
Keep us posted. I am not sure where the best transplant center is in your area, but I'd switch over there if I were you and your insurance would cover it.
Post Edited By Moderator (hep93) : 4/6/2012 5:34:35 PM (GMT-6)