@jacqualin Your story is amazing! To have a MELD so high and not have been aware of having liver problems seems very odd. When I was finally diagnosed my MELD was in the teens and I was told by the hepatologist that I had probably had NASH cirrhosis for 10 years, which fit the onset of some symptoms I had that had not been diagnosed as being from liver problems -- low platelets, recent diagnosis of diabetes when there was never any in my family, shaky hands, and the biggie -- HE episodes. It took about a year and a half for my MELD to get high enough for me to have a transplant.
I find it very interesting that acetaminophen can cause liver problems yet after transplant it is the only OTC pain reliever allowed, of course in limited dosage. Even some other doctors I have been to have been quite surprised at that.
I hope the fluid will gradually go away as mine did.

@tjgisewhite Hopefully being off of prednisone will help your weight to go down. I was on a high dose of it once for some condition and gained a substantial amount of weight in the two week course of it. I envy you getting off of it, I am still on 5mg a day. I believe this is because my blood numbers are not quite within range and it helps with that. My platelets are always lower than desired by a little. I wish I could blame prednisone for the weight I have gained recently but I think it's my fault, not the prednisone. I do blame being on prednisone for over three years now for my osteoporosis.
I still take biotin, recommended by my transplant team, for my hair. It's also good for fingernails and mine are thin and peeling so I hope it helps with that. The only thing to be conscious of with biotin is that if you have thyroid tests (TSH) it can alter the test results (per my endocrinologist), so if you are going to have that test you should stop taking it a few beforehand.
JK

I don’t know if this warrants a “nice to meet you” or a “so sorry to meet you in this manner” but your story hits very close to home: I also had no idea I was sick. One weekend I was spending time in NYC with my childhood best friend; the next, I was in the hospital. The doctors had no idea what was wrong and I thought I had just caught the flu that had been going around the office. My diagnosis began with pneumonia and changed to autoimmune hepatitis, acute renal failure, respiratory failure, and acute liver failure throughout the course of one month. (Yes: one month.) I was hospitalized on April 5, 2019, and placed on the list May 5, 2019, with a MELD score of 39. It took multiple MRIs, CT scans, X-rays, ‘oscopys, IVs, blood tests, and 17 blood transfusions to arrive at those final conclusions. I had a liver transplant on May 10, 2019, with an understanding that I’d probably need both kidneys transplanted as well. I spent a few more weeks on dialysis post-transplant. Eleven months later, so far, so good!

It’s frightening to know that the physical I had one year before didn’t show anything. It’s frightening to be told “you have five days to live.” It’s heartbreaking to know that people stay on these lists for years and live in fear for years, yet I spent five days on the list. It was surreal to be told, “The good news is, you’re at the top of the list; the bad news is, you’re at the top of the list.” I feel grateful and guilty; happy and sad; but above all, feel blessed.

Heavy but true. I know you’re 4 months out. I promise you it will get easier.