A Visit to Big City Hospital

The check-up at Big City Hosptial wasn’t nearly as comprehensive as last year’s, thought there’s a few things they want me to follow up with on my own. They want a more recent MRI on my liver than last summer’s, and I’m supposed to round up a nutritionist for myself to talk to.

There was also some pressure about me considering working part time because of the fatigue problems. Dr. B (whom I’d not seen before) suggested I try negotiating with my company for Wednesdays off. That would essentially give me two two-day work weeks, and more of a chance to regenerate. I gave that some thought on the drive home. I’m already missing a fair number of Mondays and Fridays. I can’ see my company being too pleased with me scheduling every Wednesday off. In addition, if I’m working part-time, then I don’t qualify for disability, all I qualify for is a lower paycheck. Not a good move for me at the moment. Besides (and this is no offence meant to the Socialist) if I started staying home regularly Wednesdays he’d see that as another night I could stay up late with him, which defeats the whole purpose. So no, I don’t think I’ll look into going full time. If the time comes I can’t do full time, then I need to consider disability and just plain stopping work. I’m not ready for that yet.

And, of course, Nurse Liver Transplant Coordinator and I had the Big Talk about the Needs List. I’ve left a little better educated than when I went, but I’m still confused. “Needs” livers come from the elderly, those whose hearts have stopped rather than being “brain dead”, those with certain disease infections (For example they might give a Hepatitis B liver to someone who already had Hepatitis B). When I asked about long term complications of these livers compared to “normal” livers, I was told there was no difference. So I asked why they didn’t just allocate these to the most need, rather than making them “special offers”. If I followed her answer, sometimes they do make them available to those who are critical, but that they “avoid giving a 70 year old liver to a 24 year old man.” Emotionally, that’s a very satisfying answer, but reaslistically, if there’s no significant difference in the liver’s performance after transplant, who gives a fig if the liver is three times your age? I still don’t really follow the criterion for the needs livers, but this I do know:

– Putting myself on the needs list opens the way to a very few potential additional livers. Not a lot of livers get assigned this way.

– I can say “no” to any liver offered to me. Being on the needs list doesn’t obligate me to take anything offered.

-Big City Hospital seems concerned that, due to my type of liver disease, I may never acquire enough points to make it near enough to the top of the list to get a cadaver liver offered. They are trying, as best they can, to get me a transplant within the rules set down by UNOS.

My current MELD score is 15, it turns out. They pulled more bloodwork yesterday, and with luck that will go up again. As Nurse Liver Transplant Coordinator said though, my MELD score has been on a roller coaster that never seems to make it to the top of the highest hills. And there ain’t no livers to be found down in these valleys. I told them I’d talk to Dr. Liver about all this and get back with my decision. I guess I’m still taking the “glass is half-empty” approach to this, but it just feels like there’s some important question I should have asked but didn’t know to.

Today I’m going to look at new cars. No, I can’t afford a car. No, I have no intention of purchasing a car. But I have gotten a bee in my bonnet about Prius’s, and I’m going to go out an test-drive one to get it out of my system. If nothing else, mybe it will get this screwy MELD crap out of my head for a little bit.