Goodbye to all that: No more sticks. No more scans.

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.

  1. There’s a fair chance that after a year or so, the autoimmune illness PBC could come back with a vengeance.
  2. I don’t want to spend the rest of my life on immunosuppressants.
  3. 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.)
  4. 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.
  5. 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.

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4 thoughts on “Goodbye to all that: No more sticks. No more scans.

  1. I have been wondering how you are. I’m so glad to see a post here. I admire your attitude and resolve. I hope you find lots of other things to post about and stay engaged with the cyber world in any way that brings you joy. Take care there.

  2. Thank you MrsT and Katharine.
    Sometimes I just have “all the other kids get to” moments. It took me 9 months to feel better after the TIPS and then I reached a livable plateau. So livable in fact I got my teeth done, my hair done, all the time thinking, you best not tempt fate. And then in May I started very nearly passing out in stores (I know when to just sit on the floor). And then this heart problem was diagnosed.
    It would be rather dreamy for the decision to be taken out of my hands and to wake up with it done and in good working order. I would love to have my life back..
    I have binders full of bloodwork results and scans.
    I do what I can — take my meds, don’t eat meat, but I act without hope.
    Thank you for your understanding.

  3. Laurie, so sorry about this. It’s so hard. No good choices. Such a struggle. I for sure know about being sick of being sick with PBC. But toward the end I could not read and retain what I had read, could not carry on conversations with more than one person at a time (with difficulty), and was sleeping my limited life away. Fatigue is extremely debilitating, as you know. And there were so many other physical crises and problems.

    I had a living donor transplant from a complete stranger in November 2015. He is doing just fine, and recovered much more quickly and thoroughly than I have. There have been and continue to be bumps in the road for me, but that is to be expected in many cases of transplant. Some are lucky and have none, I was not that lucky.

    However, the PBC has not come roaring back. My numbers remain those of a healthy person, all within or close to normal range. May it continue to be so.
    At one year post-tx I got a wonderful Siberian forest cat with my doctor’s blessing (“Just wash your hands a lot and wear gloves to change the litter.”) The immunosuppressants have their own symptoms, but they are no way nearly as bad as the disease was. Yes, we took a financial hit, but the insurance covered most of it, we are managing, and all our children are grown and on their own so that’s not a worry. And I have my life back. Yes, a different life, but a better life, for however long it may last.

    My husband tells me that at one point in my illness I thought I didn’t want a transplant – the thought of the surgery and its aftermath terrified me, I didn’t want to be on the drugs forever, and we didn’t even know if I’d live through it. I now have little memory of this time because PBC/AIH did such a number on my memory. But a point came when I had so very little quality of life left, I was listed.

    You are so fortunate that hepatic encephalopathy has not robbed you of your brain. Your writing illustrates that you are spirited and determined, though also discouraged and very fed up. You have a cyber-life as well as a life at home, though believe me, I understand the limits. My heart aches for you. No one deserves to go through a disease like PBC. I hope you find ways to laugh, experience beauty, and have love in your life. And yes, you can and may change your mind. Or not.

    OK, more than enough from me, you clearly want to change the subject.
    I do look forward to your posts, and I wish you the very best life possible.

    Katharine

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