But we remain hopeful and optimistic! We are going to do everything humanly possible to keep him as healthy as we can, staying physically active and building strength and stamina, maintaining good nutrition and above all, keeping positive attitude!The downside, at least the way we see it, UNOS has changed the allocation system. We also know that he can die before he gets a liver. We are prepared for him to get much sicker between now and transplant. We know that his score can change rapidly. They said we probably won’t get any offers of available livers until his MELD hits in the low 30s. That’s only 6 minutes! WOW!!Our really great news……following the re-evaluation and clearance from the scope….Vic is getting listed for a liver transplant!!!!!!!!!!!!! To say we are ecstatic is an understatement! We have a renewed hope for a longer and healthier life! Maybe he won’t follow the family history of early death due to liver disease!! Yes, we know that it will probably be a while, a long, long while, before he gets a liver. And at 10:03 a.m., the procedure was done and he was moving to recovery. I have to say, I knew the scope didn’t take long to do, but was kind of shocked…notification at 9:57 a.m. Told to have the next EGD in a year, unless symptoms of a bleed appear. One small polyp in the stomach, which was biopsied, but the doctor does not feel it is of any concern.

Varices seen but not requiring any attention, no ulcers, etc. So Tues-Wed of this week, we went through eval again. After the CT, we got a call for the scope to be done this week. He originally told us every 1-2 years and that we would talk about it and get one set up when we see him in Dec. We had talked to the hepatologist regarding when the next endoscopy (EGD – esophagogastroduodenoscopy) needed to be done. They found clots and occlusive thrombus in the SMV (Superior Mesenteric Veins). And that ended up being a source of much concern. They did the CT of the abdomen with contrast last Wed, because that was when they could fit us in. They did decide we didn’t need to redo a few of the tests. It felt rather redundant, but it’s what we had to do. Since he was denied in July, we had to go through evaluation again. The hepatologist thought it was time to bring him up again with the transplant team for review. (Wednesday, after just 5 days, they got 8.1L)On Sept 8th, his MELD had jumped to 18 on the 13th, it was up to 20 and on the 19th, it hit 22. The ideal schedule was Mon, Fri, Wed, Mon, Fri, Wed, etc. It wasn’t easy to get everyone on the same page, but we did eventually get set up for the para’s to be done every 4 to 5 days. The problem….by the time the discomfort from “after” was starting to go away, he was back to having 4-6L of ascites built up again. It just felt to him like he wasn’t), or the discomfort and cramps for 2-3 days after as everything was moving back to their regular positions. I don’t know which was worse for him, all the pressure in his abdomen, feeling like he could hardly breathe because the diaphragm couldn’t move (yes he was getting sufficient oxygen. That is very uncomfortable, to say the least. In September 2022, it was pushing 10.5-12L every Thursday.

Considered a good candidate for transplant but the MELD was just too low, causing the big road block, which lead to denial.My husband, Vic, has been having weekly paracentesis since early October 2021. We were denied due to a MELD score that was too low (11 at that time) but with decompensation. Our Life with Liver Disease – The Journey Continues Hoping I am picking up where I left off, after Liver Transplant Eval in July.

Meld score 8 life expectancy