As I’ve written earlier, Vinny and I have been working with a great liver specialist, Leslie Seecoomar. He is young and smart and over the years we’ve developed quite a good rapport, so now that it’s my turn to see a liver specialist, we made an appointment to see Les.
We went to his new offices at Columbus Circle and he greeted us warmly. He joked with us that whenever he goes to medical conferences or family reunions or whatever and folks Google him, the first few pages are various places quoting Vinny calling him “A truly gorgeous Ken doll with blue-black hair.” Vinny (and I) are guilty as charged. Just for the record, Les has a wonderful wife and three great kids, but hell, if you’re going to be gravely ill, you might as well have doctors around you who make you smile.
After catching up socially, we did get around to talking about my liver. Given my blood work and extreme fatigue, we probably did want to begin pegylated alpha interferon (Pegasys) supplemented with ribavirin (Copegus). Check out the Roche Pegasys website.
The likelihood of success and duration of therapy could somewhat be predicted based on hepatitis C genotype (which would take 3-4 weeks to get back) and results of the liver biopsy, but a much better idea of both success and duration of therapy would come after 90 days of treatment.
Folks have told me that Pegasys (from Roche) is incredibly expensive (but covered by insurance). It’s only about $2,000 per month, which isn’t cheap, but not more than everything else I’m already on. Even a full two year course of treatment would cost 1/20 of what the least expensive liver transplant would cost.
The bad part is the side effects. The new formulation is easier to take and for some folks it is no worse than having the flu. But others are bed ridden as they would be getting chemotherapy. Without treatment, my fatigue is so bad I can’t get through the week. With treatment, there’s a pretty good chance of success, but there’s no way I’m going to be able to keep working through it. It’s what I expected, but now it was real.
I’m going to have to go out on a medial leave of absence and go on disability. One of my buddies prefers to call this a sabbatical -- which I really like: In the academic field people take a year off every seven years (or they used to in the days of tenured professors) to recharge their batteries and keep fresh.
One thing I was worried about was picking the best treatment to keep my options open down the road. It turns out that hepatitis C doesn’t have drug resistance issues like HIV does, so there’s no chance of failing treatment. If treatment doesn’t work, then we can try something else, and if that doesn’t work, I can still try whatever is in the research pipeline later.