Cirrhosis Support Group
Cirrhosis is a consequence of chronic liver disease, most commonly caused by alcoholism and hepatitis C. Ascites is the most common complication of cirrhosis and is associated with a poor quality of life, increased risk of infections, and a poor long term outcome. Liver damage from cirrhosis cannot be reversed, but treatment can stop or delay further progression and...
Hello, new to this group. I noticed there is not a specific group for NAFLD, so decided to join anyway in the hopes I can receive information and support for my condition.
Two weeks ago had a FibroScan and it showed Level 1 Fibrosis. Also, had an ultrasound and it showed mild Fatty Liver Disease. However, I also have been having Gallbladder attacks recently (have one polyp). Met with my HMO GI who wants to remove the Gallbladder which I am refusing at this point.
So, my GI doc said to avoid all simple sugars, which means table sugar, go on a low carb diet, avoid anything white, but she didn't send me to a dietetician for specific instructions, so have been doing a Google search and finding alot of conflicting results.
I already had to reduce alot of food for a migraine elimination diet, then reduced all fried and fatty foods to try to keep my gallbladder calm and now I am being told to eliminate alot more food to protect my liver from advancing.
Then I have another condition. I have been suffering from high ammonia levels in my blood since 2014, which was when I got my first diagnosis for NAFLD. I have been treating this with Lactalose. The doctors are not finding the source of the ammonia so far but are keeping me on daily Lactalose with monthly blood tests which I am growing weary of. The GI doc I met with last week said that since I am only at Stage or Level 1 of Fibrosis, she believes that my liver is not producing ammonia, but if I was at Level 4 of Fibrosis or Cirrosis then she would agree that my liver was producing the ammonia. So, she disputed the origin of the ammonia with me.
I am considering going outside my HMO for a second opinion at this point.
Here are the results of the FibroScan which make no sense to me, maybe to some of you it will:
FIB-4 INDEX Final not relevant, KPA, Transient Elastography 5.80 kPa Final 17%, F-Score, Transient Elastography 1 Final.
Thank you for listening !
Debbie
Have you been to a hepatologist? This is a Dr that specializes in liver disease. How are your liver functions? And have they ever told you what your MELD score is?
Is there a reason you refuse to have your gall bladder removed?
I was dx with NAFLD years ago, had gastric bypass in 2009, followed up with my Drs for a while but I was feeling so good, I stopped seeing my Drs...dumb on my part.
I guess I would say see a specialist and find a Dr that you trust.
My liver functions are all normal. I have them checked every 3 months. I am waiting for the results for the Hep A, B & C. The GI doc felt that depending upon the results of these 3 blood tests, I may need the Hep. vaccines.
I have no idea what a MELD score is, can you explain that to me? I noticed, in reading thru the posts here that the term "MELD score" was used alot. I guess I can look it up on Google Scholar.
I don't want my HMO to remove my gallbladder. I am waiting until I see the hepatologist and go outside my plan to see a "real" doctor. My HMO uses their basement of a clinic to perform these surgeries and I want any surgery to be performed in a hospital, so I am waiting. If I get another acute attack, will go straight to the ER this time. Last time, was to sick to move out of my bed, and during the flu season, didn't want to go to the ER and be exposed to all those viruses. But now that it's Spring and the viruses here in Northern Virginia are not as rampant, I will go to the ER. I have read up on the negative effects of living without a gallbladder too and I am worried about that.
Sorry to hear of your medical history. Are you in treatment now, what is the treatment for cirrhosis. Are you working at diet?
Again, thank you for reaching out to me cricket :)
Debbie
The MELD score is the measurement of liver disease. It seems like all I do is research stuff lately. It can be very confusing.
I would def go to a hospital if you decide to have your gall bladder removed. I did not have any issues after mine was removed. But I've heard other people say that they had GI issues for a while.
Yes. I am on a low sodium, high protein diet. I have to stay under 700 milligrams of sodium per day. That's not easy but I've learned a new way of eating and cooking.
I see a hepatologist for my liver disease. They also specialize in liver transplants which I don't need at this point.
I was on diurhetics to help control the abdominal fluid that backs up because my liver can't filter as it should but the diurhetics caused kidney issues. So now I go in to the hospital when I need to have the fluid drained. (sorry, maybe too much info)
Currently we are discussing a procedure to place a stent in my liver to help it. Haven't made that decision yet.
Good luck with your new Drs.
I will send you a"friend, request if I can figure out how to do that.
Keep us updated.
My liver disease was caused from several things.
I am on a low sodium diet. I only have 700milligrams or less of sodium a day. I have to have a lot of protein to build back the muscle that I have lost. I don't have to worry about carbs and sugar. Actually they want me to eat a high carb and fat diet to build back the weight that I have lost. As long as the carbs do not contain a lot of sodium.
I've learned a lot. I research everything I can. I call this my new normal.
I have had several issues with panic attacks. I usually stop what I'm doing place my hands over my heart and say to myself that I'm ok...I feel my heart beating, I'm alive, I'm breathing and I'm going to get through this any way I can.
That usually calms me down and gives me strength to keep going.
This is the new normal.
Hope that helps. Keep researching and asking questions.
Keep in touch
I am in late stages but I can't get on the transplant list until I get insurance ( hardest thing to do) I lost my ability to drive and can't work anymore. Trying to get disability to get on Medicare. Anyone have any suggestions on that. Everyday I am not on the list is another day I loose.
My brain function is slowing down and my muscles are getting to where they don't work. Feeling really lost right now.