Sent here by another group-Decompensating suddenly!

On my way back to the ER, no relapse involved. I was diagnosed with cirrhosis October 13, 2023. Spent 3 weeks in major hospital in Chicago and was put on liver transplant list, full transplant at first, but GI told me just last month we could start looking amongst friends/family for a living donor and partial transplant.

Except that now it seems I’m decompensating again? Met the PCP for my annual physical this morning. He sent me straight for labs afterwards, and he got the results just half an hour later showing my platelets dropped to 17. HgB of 8.7. Suspected internal bleeding. Again. He called me in a panic and told me to go straight to the ER in the closest large hospital, 45 miles away. I’m still here getting transfused. No ascites or internal bleeding confirmed, hemoglobin level is holding steady so I’ll have a CT scan first thing in the morning.

I haven’t taken a single solitary sip for 486 days. This disease is a thief. A thief of time, money, relationships, and health. Not really looking for advice, just venting I guess. Fear, anger at myself, guilt, shame. Hatred for this illness and all the fires it has set in my life, too many of them just smoldering, too many still raging on. Stay well friends.

UPDATE Thank you for your kind words and support. The CT showed no internal bleeding. They tested my platelets again today and they have come up marginally. They’ll do another follow up this afternoon, and as long as my PLTs hold steady, no decrease, they’ll send me home and check on Monday again. Praying that I don’t need another transfusion then, but if so, I’ll get through it.

I have a lot of PTSD after my 3 week stay in hospital 18 months ago. Two doctors discussing my case right in front of me, saying just “let her die.” I was literally begging them to help and the older doctor turned to me and said, “No. you did this to yourself and now you’re dying. There’s nothing we can do.” And then walked away.

So getting the call yesterday saying I needed to go straight to the ER brought back all that trauma. I’m better emotionally today, my therapist called last night, and we talked about the fact that I chose to drive to a distant, larger and better staffed hospital instead of our much smaller regional hospital. I don’t think I can ever step foot through those doors again. Something else to work on I guess. But again, thank you for the support during a very scary time for me. Best wishes to you all 💗