Liver pre-transplant question

@sjh1240, Welcome to Mayo Connect. It does sound like you are seeing a doctor about the NASH, is that correct? NASH (nonalcoholic steatohepatitis) causes the liver to swell and become damaged due to the fat deposits in the liver.

I commend you for searching for more information from members and for more information about your liver condition. I have located a list of 4 preventive steps from Mayo Clinic's Health Library: Eat a healthy diet. Limit alcohol, simple sugars and portion sizes. Keep a healthy weight, Exercise. Here is the link to read more about each one - https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/syc-20354567

For information about the tests, symptoms, procedures, and treatment I reccommend: Nonalcoholic fatty liver disease:
https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/syc-20354567
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@sald1101, I did not have NASH, but another liver disease. And one of the first things that my doctor told me was, "No alcohol" because alcohol ms toxic to the liver, and any anount could risk severe damage. Although your diagnosis is named _non alcoholic -Please seriously consider avoiding all alcohol. You can ask for help. You are not alone.
Are you seeing your doctor regularly?

If you are currently working with mayo and accepted into the transplant department as an appointment candidate, you should have been assigned a nurse coordinator. I had one pre and post transplant. If things arise prior to your three month appointment, don't hesitate to message your coordinator and ask questions. It is a very fluid process and if conditions change for some reason, they may suggest returning earlier. I used the professionals often for questions or guidance.
They expect questions and it is what they are there for. The brain fog can become an issue and they will watch for encephalopathy, which can be caused by the liver not functioning well and filtering toxins they then go to the brain. They will treat that if becomes too concerning. Good luck to you.

My wife has cirrhosis and is just getting on transplant list meld 21 however due to ascites she has developed a painful hernia that keeps getting worse. She’s in terrible pain hoping she can have hernia surgery has anyone waiting on a liver gone through anything like this

@miller81, I can imagine you are worried for your wife and concerned that she is in such pain with the hernia while waiting for her transplant. @hogan_g1937 talks about a similar situation in this discussion:
- Hernia Surgery scheduled
https://connect.mayoclinic.org/discussion/hernia-surgery-scheduled/
Are they managing her ascites? Has her team suggested getting surgery for the hernia while waiting for the transplant?

@miller81, Welcome to Connect. I want to say that I am sorry that your wife has cirrhosis, and I am also happy that she is getting on the transplant waiting list. As a recipient, I know that you and she are experiencing a whirlwind of emotions along with confusion right now. I want you to know that you are not alone because each one of us (patient and caregiver) has experienced the same feelings.
Having ascites alone can be a painful experience. It is probably adding to the discomfort of the hernia. I had ascites and edema prior to transplant, I was terribly uncomfortable, and needed asciteds fluid removed every 10-14 days. The relief after the paracenthesis procedure was immediate. I had to wear X-large elastic waist sweat pants since my abdomen was so swollen. When I departed the procedure, the pants were loose. But I felt so much better! Of course, for me, that was to be repeated until after transplant.
Has she had any paracenthesis to remove excess fluid?

I am unable to tolerate even the smallest dose of lactulose, it explodes in my intestines and is extremely painful. I've been on Rifaximin twice a day for the past 10 years along with MiraLAX daily which has kept the HE at bay. I was for sure mentally confused and forgetful before this combination. My MELD score keeps me in MELD purgatory; it won't stay up and it won't stay down so I bob up and down constantly. It needs to be above 15 steadily which it won't do. It bounces between 9 and 25. I have ascites and portal hypertension and now after the partial spleen embolism I now have varices on my spleen and in my esophagus. On the 21st they will decide if TIPS is the next step to take as the PSE didn't work. I have found that my HE runs up with the more ascites I have but thankfully my HE isn't one that makes me angry just goofy (for the lack of a better word). I do dumb things but no outburst or the like. With the lactulose whatever dose they start him at be very careful, it causes major diarrhea. I was unable to leave the house until they finally took me off of it. I did find that while taking it, its easier to get down if you add honey to it. After TIPS they anticipate greater HE so my Rifaximin dosage may go up. That won't be good because the gov't changed how medication works with prescriptions by helping those with high bills due to diabetes medication to not exceed $2,000 a year in meds, it messed up others. I have been getting it for free via their patient assistance program but now with this new cap on RX's I no longer qualify and I can't afford $170 a month for it. Lactulose won't be the answer, I have no idea where this is headed. All of this stuff gets so old just trying to get through a day being "normal". Sorry, rambling...Kelly