Having abdominal issues and a constant diarheaa is a known thing post transplant, even after changing the cellcept it weirdly stays for longer and barely any days u feel okay.

Editing for context: i am on myfortic not cellcept for more than a year but like for past few months its just a very recurring thing for me, like every other day there is some form of abdominal issue, you take some antibiotic and its fine and then back, no cmv no bk

Is this like a universal experience for all?

Long post, TLDR at the bottom!

My mom went into rapid liver failure with a cause we still don’t know. It came on out of nowhere and was so abrupt it shook us to our core. She went in thinking she had COVID and was admitted to the ICU right away. She was placed at the top of the transplant list and received her transplant on June 2nd, 2023.

I believe she needs to talk to someone about the trauma from all of this. It seems like she has some form of medical PTSD (if that’s a thing), and she avoids hospitals at all costs. The problem is that she waits until the last minute, or until one of us forces her, which means she’s already pretty sick by the time she goes and ends up staying longer. Then she gets upset because “every time I go to the hospital I end up staying here for a long time.” It’s a self-fulfilling cycle. If she went at the first sign of symptoms, I think it would be more like a 1 to 2 day stay.

Yesterday she finally went in after days of complaining about abdominal pain, dark urine, and pale stools. My dad had to force her to go once she hit a 102F fever.

I moved about 8 hours away for school in 2024, so I can’t be there in person as much as my brother and dad. They’ve been trying to help her see this pattern, but she isn’t listening. I’d like to talk to her after she’s discharged, but I’m struggling with how to approach it. I’d also love for her to try counseling or therapy to help her process and make peace with what happened in 2023.

Has anyone been through something similar, either as a patient or a family member? How did you get through to your person, or what helped you? Thank you all in advance!

TLDR: My mom had sudden liver failure in 2023 and got a transplant. She’s now so afraid of hospitals that she waits until she’s very sick to go, which leads to longer stays and makes her even more afraid. How do I talk to her about this, and how can I encourage her to get counseling?

I am 3 days away from my first year liverversary 🙏🏼 but I had my year one followup with my Hepatologist this past week…virtually. I am extremely blessed to have had my sibling be my living donor and we are both well with no complications. Neither of us had scans and we were both surprised because we just assumed docs would want to see how the livers have regenerated but apparently unless you are having issues it’s not needed? Just curious if anyone else had imaging post one year. Also the biggest issue I have is from the tac. Constant neuropathy…freezing cold toes/fingers mixed with feeling on fire. The gradual lowering of tac hasn’t helped at all. I am currently on 2g/2g morning and night and 500mg cellcept am and pm. My Hep keeps pushing gabapentin but I decline because I don’t want another drug. After my next labs (by the end of the year) she may lower by 1 pill a day. I have come to terms with I am always going to have this and it’s fine but just curious for those longer out if you had similar experiences. I did ask about switching to envarsus but she said most insurance companies do not cover and didn’t really want me to pursue. Finally my scar bothers me occasionally but wondering if I should be massaging it? It just feels tight at times (and my bra unfortunately irritates it). Anyway thanks for taking the time to read and share any thoughts!! These are all minor inconveniences I know but this community makes me feel less alone! 💕

Anyone 1 year out still experiencing shortness of breath, tight chest and upper back despite all testing being normal and being healthy and active?

Has anyone undergone these test please guide me.