I never intended for this to become an illness blog, but once I became symptomatic for the Disease Formerly Known as Primary Biliary Cirrhosis, I could find no narratives of what to expect, and so I decided to chronicle my mess.
Last month I told my hepatologist we were done here. No more scans. No more sticks. There is no point in watching the numbers because there is only one way to possibly delay dying: a transplant.
Don’t fret; there is no reason to believe I won’t be around a while. But I have spent too long seeing my life as a slo-mo train wreck.
I felt tremendously free after announcing the end to tests. He said now my MELD was 15, it was time to start thinking about getting on a transplant list. I told him no, it was not.
I’d known this day was coming for 11 years. I had been ambivalent about it, but these are the reasons I told him no. (He said I can always change my mind). I don’t advise anyone else to take this route. If my children were younger, I would not.
- There’s a fair chance that after a year or so, the autoimmune illness PBC could come back with a vengeance.
- I don’t want to spend the rest of my life on immunosuppressants.
- Some programs require you to re-house your fur people. Our household includes 3 cats, 2 dogs, and 3 ferrets. Those cats and dogs aren’t going anywhere. (The ferrets stay on the top floor with my daughter.)
- Even if all went perfectly (not the way they usually do for me), a transplant would start at $150,000. They can easily end up costing $800,000+ range. Even if my insurance coverage doesn’t change in October, it would only pay for 80% of the cost. So we are looking at a minimum of $30,000. While we could swing this, we could not do the upper range without accruing enormous debt. My husband would be willing to do whatever it took, but I am not willing to see his life or our daughter’s (who is still in school) complicated by such a huge gamble.
- I’m not entirely sure that on a spiritual plane donors are dead.
I think my hepatologist might have been relieved because it saved him telling me I may not be a candidate since in between this and my previous visit I had been diagnosed with a severely enlarged left atrium. Hearing this was a bit of a relief since it means that I could drop dead and miss all the liver failure gore.
So how am I? I’m tired, all the time. This could have much to do with the heart and little with the liver, or both working against me, not to mention a whacked auto-immune system.
The worse thing is likely unrelated, although it remains unexplained in spite of every test in the box. Too often I have “steakhouse syndrome,” even with macaroni. So even eating is not pleasurable any longer.
But I can still read, so I am fine. I don’t get out much but I have an active cyber-life.
I’m sick of being sick. If anything interesting happens, I’ll post. Otherwise, I’d rather write about something–anything–else or not at all.