Have my next meeting w Transplant Team upcoming and I think we are getting close to be listed, I think…
Here’s my question. Does the team have to list you in order to deem a living donor transplant to be appropriate? Another way of asking the same question, do you have to be sick enough to be listed conventionally before they will consider living donor?
MELD 15 w two hospital stays for cholangitis, one very septic, in the last 6 months. But still reasonably high functioning, working full time at a high level. Biggest symptom other than dead dog tiredness is slowing down mentally - this may sound bizarre but I can no longer spell and am often stopped in my tracks to figure out what letter a word starts with. Is that weird???
Thanks in advance.
I do believe you have to be approved for transplant listing before living donor donations will be accepted. Your insurance though should pay for any living donor evaluations that are done.
I was listed with MELD 12 in January, 2015. My MELD jumped to 36 by middle of July that same year. It can change very fast so I’m glad you are going to be listed. The sooner the better. You will have the option to defer getting calls for high-risk donors. I did that until my MELD got really high just to avoid having to make that decision over and over.
I hope all goes well with your transplant evaluation and all.
Thanks Mark, as always.
Every time i go in expecting one thing and another occurs, so who knows. Luckily in the Great White North we don’t have to worry about insurance issues - basically my only perk of paying 52% income tax.
What aspect of your blood results used to calculate MELD changed enough to go from 12 to 36 so quickly?
Definitely let your team know about the brain fog. What is your ammonia level?
I believe most if not all centers require traditional transplant listing before entertaining a living donor transplant. With a MELD of 15 and recurrent cholangitis it wouldn’t hurt to go through this process as things can change quickly with this disease. Keep in mind that post-transplant life comes with its own set of complications and concerns.
My INR shot up to 4.9 and my bilirubin 10.4. I was one sick puppy for sure. I’m sure by now you’ve seen a photo of my poor old liver they took out. Looked like burnt hamburger. Take care and the very best.
JTB - I am not sure what my ammonia levels are at. I can’t seem to find them on blood test. Is there an acronym that I’m missing via Google??
It seems like such vague and subjective symptom. Hard to quantify. But something is certainly making me slower and worse off mentally especially at work where I need to make quick calculates decisions and write coherently w correct spelling.
Roughly 50% of those with cirrhosis deal with hepatic encephalopathy (HE) due to a build up of ammonia in the blood. This can manifest as brain fog. Make sure to let your doctor know about your mental fuzziness. Actually, I was never checked for ammonia even during the transplant listing process - this is probably only ordered if the doctor suspects HE.
My father ended up in hospital and is now in a skilled nursing home(SNF). He has MS and PSC. He had had several MS attacks this past year - so we thought this was something related to his MS and general weakening. He’s almost no symptoms related to his PSC - other than a gangreous gallbladder that was removed about 12 yrs ago… He was experiencing severe mental confusion - with what we we were told were TIAs (transcient eschemic attacks) …like “mini strokes” - that come and go and leave no trace…it wasn’t til his doctor in the SNF checked his ammonia levels (a blood test that apparently isn’t part of the normal panel of tests) that we realized it was causing HE - he is on lactulose and most recently rifaximin (an antibiotic) and too soon to tell if that will help lower the ammonia levels but the mental confusion seems to be lessening.