Polycystic liver disease
I had a double nephrectomy and simultaneous kidney transplant coming up on three years ago, due to ADPKD. I always knew I had liver cysts but the extent of them really didn’t became clear to me last year, when one ruptured. I’ve been seeing a PLD specialist and we can see that my liver is growing. At this point it’s about twice the normal size.
I’m really struggling with this right now. I spent a long time watching my kidneys take over my whole abdomen and the stress of it was overwhelming. My family members who also have ADPKD are denial people, and I’m just not. That led to a lot of conflict and I have medical PTSD to this day. I was so relieved when the kidneys were out. Now it looks like I could be heading for a liver transplant too. The Dr said it will ultimately be my call based on how I feel and my nutrition levels. She also said they can’t reliably predict future liver size but that I’ve gone up a full liter of volume in the past decade.
So far I can still eat semi normally but I’m experiencing more weird stabbing pains from the internal pressure. I’ve been getting more reflux. It all feels horribly familiar. Yesterday I had a breakdown about it in therapy and now I’m just feeling so tired. Part of me wants to just get the transplant over with but I know that’s not sensible. I just fucking hate being in limbo. It’s too much.
Anyone else dealt with this?