does anyone feel similar ?: i live in... - British Liver Trust

British Liver Trust

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does anyone feel similar ?


i live in the us. am 62 yrs old and contracted hepatitis c when I was 20 yr old i used the new hep c cure drugs which did cure it however i am left with stage 3-4 cirhosis and i think i am starting to develop acitesi am have serious mental issues ,.confusion depression,unable to concentrate.i just wonder how long before i need transplant.Does any one know how to tell when its time for transplant i do see a liver specialist and he said on my last blood work that my L.F.T. WERE NORMAL BUT THE WAY I FEEL TELLS ME THAT THERE IS PROBLEMS.

5 Replies

Hi, I also have been cured with the new drug but feel it left us with Cirhosis which is stage 4. Wants we develop cirhosis it's stage 4. I went through the itching really, really bad. It would come and go for a few weeks mostly at night it was tough sleeping they have meds for the itching. Keep your mind working. I notice I forget things, but push through. I now experience pain on my right side often which worrys me. Dr's talk about getting on transplant but say we have to be very sick to qualify. So we're pretty much on our own. I don't know how sick is sick! To get on transplant. What I've been told from my liver DR is really sick! it sucks.

I wish I had more, but if you still work it should help with the brain fog.

I keep pushing everyday to keep strong. Keep positive, and updated with your doctors. I'm here I don't get on often but will respond as I can

Yes I am 58 on the same course, I was Hepatitis C positive with F4 with-act grade 3 , I took Sovaldi & ribavirin now I am Hepatitis C reactive an F4 act2 and all my results fluctuate between normal and just below normal. For the confusion (hepatic encephalopathy) I take XIFAXAN® (rifaximin) 550 mg and Lactulose, this made a huge positive difference. As far as the ascites there is a possibility that your stomach is experiencing an accumulation of fat people with a fatty liver tend to show fat in the stomach area versus hips etc... so you need to look at your diet . I do take prescription medications (antihistamine) mainly for being happy and relaxation and itching. I see my liver specialist every 6 months for blood work and MRI once yearly for an upper GI, There is nothing to worry about it’s a journey the specialist have so many new opportunities and your liver specialist will tell you what’s going on. It’s one thing to educate yourself on Cirrhosis and all the side effects but try not to dwell on one thing, because with this as you know Cirrhosis mimics so many other diagnoses , concentrate on living for awhile get up and go. Hell I bought a new Harley and I ride when I have both my psychologically and physically needs are under control and it’s not that much but little by little I go further and longer. I have a question my problem is breathing do you experience this ? I can’t exhale I have been to a pulmonary specialist and taken all of medications they had with no results I have been to a heart specialist looking for shunting and did all those test no results still can’t breathe only thing I found out basically is the left side of the heart is stiff not allowing it to pump out properly and the right side is going to fast. I wonder more about the damage from having Hepatitis C so long then Cirrhosis.


Great to hear from you,and like you the long term cirrhosis seems to cause more and more issues to our body.I have noticed difficulty breathing when laying down but not to your degree .I hope your doctor can fix that issue.I see the the specialist in December and I hope my liver tests are still normal.I am going to ask him about the XIFAXAN.The confusion of even texting has been getting more difficult hence my short responses.thanks again!

Liver3 in reply to Dldtx

Thanks for the info! Here hanging on like everyone else. Sending you prayers for.all thebest!

Your UKELD score is usually how they determine placement on the transplant list -----

Higher UKELD scores equate to higher one-year mortality risk. A UKELD score of 49 indicates a 9% one-year risk of mortality, and is the minimum score required to be added to the liver transplant waiting list in the U.K.[1] A UKELD score of 60 indicates a 50% chance of one-year survival.

The UKELD score is calculated from the patient's INR, serum creatinine, serum bilirubin and serum sodium, according to the formula:

(5.395 x In INR)+(1.485 x In creatinine)+(3.13 x In bilirubin)-(81.565 x In Na) + 435

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