Normal live function with cirrhosis
Posted , 5 users are following.
I've been told that I have cirrhosis of the liver but that my liver and all other organs are functioning normally. I do not have any symptoms of any kind. It was suspected I had cancer, but that has been ruled out. My hematologist has referred me back to my gastroenterologist for further evaluation and treament. She indicated that with proper life style changes and good health habits I could possibly live for years with no problems. My question is: What does that mean? Anyone had any experience with this? Neither doctor has indicated what stage I'm at, how serious my situation is, etc. Thank you.
1 like, 7 replies
ruth51315 kristin07815
Posted
Hi Kristin. Sorry to hear your diagnosis. I know how you must be feeling because in March 2016, I too, was told that I had cirrhosis, despite having no symptoms. I was diagnosed following a Fibroscan result of 10.7 which on the scale they use, made me stage 3/4.
By what method has yours been diagnosed? I am asking because in April this year, a follow up Fibroscan yielded a result of 7.1, which is only a bit higher than normal, and not cirrhotic. The gastroenterologist told me that the previous years Fibroscan was of poor quality and gave a fuzzy image and so was interpreted wrongly.
So, if they aren't sure, why tell a patient that they have cirrhosis, when they don't?!
Could you ask for a second opinion maybe, or a different means of diagnosis? Maybe if you had a biopsy, could you ask for a Fibroscan, or if you had a Fibroscan, maybe ask for a biopsy? Or another Fibroscan, because they can be wrong, like mine was.
Like you, I was given the bombshell news and left to get on with it. No advice whatsoever.
I was lucky. My result was wrong, but I only found this out after 13 months of worrying myself sick.
I hope yours turns out to be wrong too. These doctors aren't infallible.
Wishing you all the luck in the world......
kristin07815 ruth51315
Posted
I had an ultrasound, CT scan and MRI. They thought there was cancer after the ultrasound but the CAT scan and MRI we're both negative. However, all three showed cirrhosis. I've never been told anything beyond that other than eat healthy, do not drink alcohol, and I may be able to live a fairly long time. But there can be complications and at this point I don't know what my odds are. I go back to see the GI in September. So happy for your positive outcome and good health!
ruth51315 kristin07815
Posted
It seems pretty conclusive then. I am so sorry to hear this.
I expect you have googled prognoses but until you see the GI in September and find out what stage it is, it won't be much help. Only consolation, September is now not far away.
I hope the GI gives you a lot more info (other than eat well and don't drink.....honestly!) when you see him/her and remember to write down questions you want to ask, because it is easy to forget them when face to face with the doctor.
I am sorry I have been no help, but I am really hoping that your visit in September can provide you with more positivity. Thankyou so much for your good wishes. I'm hoping that your outcome will be as fortunate.
kristin07815 ruth51315
Posted
bruce97898 kristin07815
Posted
I was initially diagnosed with cirrhosis, at the time my doctor talked about a transplant after normalizing my iron levels. I was prepared for cancer in my future.
What are your iron levels and for how long? What about your ALT/AST tests? And bilirubin?
Since that time, after getting the iron under control, the scans show borderline cirrhosis, but not actual cirrhosis, which my doctor said the iron can cause ultrasounds to come back as cirrhosis. I don't know if it was mild enough and I was lucky enough to have some reversal. Not common but it happens.
I would focus on the iron and see if you get better news after it is controlled. Keep salt to 2,000 mg a day. No alcohol and no sugar.
kristin07815 bruce97898
Posted
I'm inclined to think that my issues are excess iron related and like you not really cirrhosis. I'm having more tests this week and meeting with liver clinic in Nov. What's so amazing to me is how so many doctors fail to consider the possibility of this rather than immediately thinking it's because of personal behavior. Since I've had two phlibotimies my numbers are better. I feel fine and that's what is so frustrating about the whole thing. Thank you for your help.
bruce97898 kristin07815
Posted
I can relate to the personal behavior part. The ER doctors accused me of being a raging alcohol and IV drug user.
I had a lot of doctors misunderstand the role of iron in my health. I had all the scans you mentioned, but the iron was the problem. Don't quit being optimistic, I went from a terrible prognosis to a very good one.