F4: cirrhosis

[TrixieMami]

I was recently diagnosed with F4 Cirrhosis and I'm terrified. I found out by reading my medical record. I was first told that I had Autoimmune Hepatitis after my Fibro scan results and that I needed to start treatment with Imuran and prednisone. GI dr said that if treatment didn't work I would be put on a liver transplant list. She then said. "I'm sorry". For years, I was diagnosed with Raynaud's, RA, and Sjogren's diseases. I'm completely lost and feel that I just read my death sentence. I did send a message to the GI dr. that I would like information.

[isi123]

I am very sorry for what you are going through, I hope that the treatment will be effective and your health will stabilize

[Golendoodle]

I'll pray for you that the treatment works. I'm very sorry this is terrifying news to receive hopefully a biopsy will show better results.

[BU2B]

Breaks my heart - I feel your despair. Deep breaths - you got this. Don’t worry about what you don’t know, it sounds like you are doing all you can to get as much information as you can. Until you have access to that information look here and on fattyliverfoundation.org and soak up as much reliable and scientifically backed data as you possibly can. Beware of your confirmation biases, they’ll trip you up from time to time. What you can’t immediately grasp put on your quick access list - you’re going to find the information useful. Stay away from ‘help groups’ and emotional geeky sites with tons of great meaning folks but most with the wrong or no helpful or useful actual fact to back claims. Learn to be your own best advocate- you’re going to need to do that first and foremost.

Remember the words - ‘fear is the mind killer’ even though from a work of fiction we’re never more true.

Do what you can to do what you can, gather round your tribe of friends and family and lean on each other when you need to. All my best wishes that things turn out as well as is possible, that you get the advice and support that you need and the long life you deserve to share and care for and with others. For anything else - I’m sincerely hoping the first step in coming HERE is as helpful for you as it has been for me. 🫶🏽

[TrixieMami in reply to BU2B]

Thank you. I feel lost and I have pull myself together and talk to my kids.

[ThyroidDeb]

Hi TrixieMami, I am not a doctor but speak from experience, don't panic. There are two types of liver conditions; compensated and decompensated, you didn't mention which you fall under. If compensated your liver is still functioning normally and you can still slow the disease. When I was diagnosed by fibroscan as F4 cirrhosis but all other test indicated something different the gastroligist decided to stay with fibroscan results. I was scared, cried, panicked and totally freaked out and ended up in the hospital having a bunch of heart test. Which turned out okay. I switched doctors, went to a Hepatologist, he read all my test and blood work way back to when records started..as did I. He also said he doesn't do or rely on the fibroscan too many things can cause false readings. His suggestion was biopsy, I did it. I was scared of it but worst part was my fear. So glad I had it done, results were Stage 1 fibrosis, zone 3 of the liver and mild fat. That was a year ago last month I went for my yearly ultrasound and blood work along with regular every 3 months blood from primary doctor. All test have been good, lost weight got my numbers where they should be and I am much happier. So don't despair, I know it's hard but until you know everything you don't know anything. Don't just depend on being told what you need to know, research for yourself and ask questions, be up on their terminology some so you know more of what they say. I have been told I ask questions unlike any other patient, most just say oh ok and leave not understanding. Good luck and read everyone's story, you learn a lot on the site. This site has been here whenever I needed them. There's also a survey that Wayne is asking everyone to do. I feel it's the least I can do in repayment for everything he is trying to do for us....thanks.

[TrixieMami in reply to ThyroidDeb]

Thank you! That's exactly how I feel.

[TruthWillSetUFree in reply to ThyroidDeb]

This is encouraging to me because your story sounds similar to my husband's. He had an F4 FibroScan test result. His biggest symptom is the itching and losing weight. His CT Calcium Scores are 0,0,0. But his liver enzymes and GGT are through the roof high. We are trying to see if we can reduce his numbers naturally before we do a biopsy. You have encouraged me! Thank you!

[utep99]

First drinking alcohol or smoking you will become unable to get a transplant. They call them deal breakers. You tumor should be under 2,5 cm although that is not a steadfast rule. Testing is extensive if you are overweight diet immediately I weighed in at 315 I am told I must get to 250. I have adopted a paleo diet and am now down to 306 it takes time. Take only medications prescribed as any of the miracle cures for weight or to treat your liver are scams they do not work. Do not touch a cigarette or any alcohol there are blood tests for both. If you come up positive six months wait time. Which you may or not have. Keep track of your Meld the lower the better. This means it is progressing slowly. If you want a transplant it is a long road and I do mean long you will go on test after test MRI every two months and heart checks often. and enough blood tests to float a battleship. If you are not on iron get on it. It will help you from becoming anemic. Your spleen will become a huge drain on you blood supply. Investigate what hospitals for transplant are available. They all have success rates listed. The better the Hospital the better chance of success. The surgery is difficult to get through and you can expect at least one year of recovery. they will continue to check you are not smoking and not drinking rules still apply. They will not take the liver back but your survival depends on it. If I can do anything to help let me know. My direct e-mail is [e-mail] just title it liver so I know it is from you.