Joined support group

Joined support group to communicate with others with similar issues.  Feel like I am bouncing from "there is nothing wrong or not all that bad" to "your on deaths door" and everything inbetween.  I read one thing and get all positive, then the next thing I read says you are too advanced.  Trying to get educated and figure out all the symptoms.  Glad I have a medical background, anatomy and physiology is really coming in handy now.  Coming up on my 4TH visit to gastro and having my 6 month US to look for CA.  Will be interested in seeing if  the labs have improved.  Would like to have some surgical issues taken care of but they don't want to touch me now.

Replies

mwr59
mwr59

Haven\'t been on here in a while. Saw the PA that I see in gastro and he was really pleased with my labs. Still slowly improving in some areas. US of liver showed nothing but the AFP doubled in the last 6 months and is at 19. Wants to do an MRI in 3-6 months this time. Got the okay to consult a surgeon for a hernia repair, got scheduled and then the surgeon left the facility so going to try again. On same meds but changing spironolactone for ameloride due to side affects. Trying to stay on a 2 g sodium diet, haven,t had any major edema or ascites since 12/14. PA said maybe I have alcoholic hepatitis rather than cirrhosis due to the improvement in labs. So I wait again to see what the next labs show. Feeling better overall and sleeping at night now, I appreciate that!
Trissa01
Trissa01

I need to check my afp, it was high. Try not to worry about the numbers they are only numbers. If they find no evidence of tumor, its just a number trying to suck the joy out of your life.
Also there is no clear line between cirrhosis & not quite cirrhosis, and many levels of cirrhosis. A liver biopsy of 3 can be a 2-3 or 3-4.
mwr59
mwr59

Liver enzymes are normal, platelets are still low as is INR. Ammonia level is good and improved AFP. EGD showed improved varices but biopsy initially is showing Barretts with no precancerous cells. Started omeprazole. So with prediabetes, barretts and cirrhosis I am really struggling with changing my diet. Looking at doing low carb, moderate protein and high fat diet which is much harder than I thought. Trying to work into it slowly but feeling guilty about many things I eat. After quitting alcohol, sweets took over and now sugar is hard to give up. Feeling good overall and friends say I look much better. We have always had a garden and can/freeze, this year will be even more important.