Discharged yesterday 24 days post LDLT from my brother. Experienced just about every complication except hepatic artery thrombosis (severe ACR, sepsis, multiple ileus events, AKI…) and my body is now barely recognizable. Went 4 years from incidental diagnosis to ESLD.
Has anyone dealt with persistent ascites after transplant? My team is sticking to small for size and complication related nutritional deficits to explain it, but at this point it is my major barrier to gaining strength and I’ve read articles on portal/systemic pressure ratios remaining off after transplant until an intervention like splenic embolization is performed.
Cali, keep your team informed and fight them if they disregard your concerns.
I was lucky to not have gotten ascites, so I do not have any direct advice.
I’m so sorry to hear this, Cali!
You’ve suffered through a lot. I’m not familiar with many fo these complications, but I deeply hope the road gets smoother for you starting now.
I am still a fair distance from getting a new liver, and I’m afraid I don’t have answers for you. But this forum can really help you connect with those who share many PSC and transplant experiences.
That said, would you feel comfortable answering some questions?Please ignore these if you feel they are intrusive.
Where was your procedure done? What was your MELD, and were you allowed exception points?
Were you strongly directed toward the Living Donor route, as in feeling pressured to see it as your only option?
I wish you comfort and renewed health. All the best to you and your family, for all you’ve been through.
Sorry, can’t help with the ascites as I didn’t experience that after my liver transplant. What I can say is that once you get over the initial surgery rehab and you start building back strength and weight, you will feel like a new person. After my transplant this January, I was down to 125 pounds and didn’t even recognize my body. Now I’m back at my job full time, I’m at a healthy 178, and feel like I’ve gone back in time 7 or 8 years as there’s nothing I feel I’m limited by. Things will get better for you!
I had ascities so bad my groin swelled up to the size of a bowling ball. My legs wouldn’t work because of the fluid. It was bad for a bit.
They changed my immunosuppressant from Prograph to Cyclosporine, which helped a lot. After that, it was really just time.
The first month or so it was bad and then by the end of month three it was gone.
I’m 3 1/2 years post transplant now and no issues. I think your body is just taking its time working things out. Stay the course and hang in there!