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...

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shelleyekg 12/07/2016

Hi Group. My name is Shelley I am a 61 yr old disabled woman, wife, mother of 3 I was diagnosed with Hep C in 97 and did Interferon (Nightmare). I did Harvoni and have been "cured" a year ago April. I developed cirrhosis over the years, I am stage 4 but still compensated. I have Primary Billiary Cholangitis. PBC. I have REALLY bad RUQ pain. No one listens.

I had a recent CT scan for diveticulitis and it showed varices (which I thought I had none on endoscopy). NO surgeon will touch me..I went to the BEST at Albany Medical Center, NY. He said NO elective surgery for me. I am such a high bleeding risk.

In the meantime...I did get a new thermometer BECAUSE I feel so sick like a have a fever but it is still ONLY 96!! Every part of my body aches. My vision is blurry. My headaches terribly. I am nauseous most of the time. All that being said my bloodwork is PERFECT! Go figure???? Meld score last year was 6.

I can FEEL things are NOT right (just like I knew things were not right when I had Hep C..they said (Oh you are just stressed). I said NO..I know my body, something is wrong. Well something is wrong. I have call into my dr. Praying he will get back to me. I know I dont have all the REALLy bad symptoms of cirrhosis and IF its a lot worse than this I dont want it. Pep talk? Suggestions? Healing hugs to all! Shelley

levoo 12/07/2016

Hi Shelly, I can relate and my heart goes out to you. It seems that there has been some kind of shift in medical policy this past year. My varices have popped about 12 times in ten years. All resulted in 4-5 day icu stays, my last bleed was accompanied with full blown H.E. It seemed like the red carpet got rolled out for me. Everyone seemed to care. To listen. HOWEVER! My last episode this year, the whole dynamic changed. Same doctors, same procedures, same icu. But this time I was treated like a waste of time. It was like I had lost my best friends, like I had no credibility or relationship with the hospital anymore. Doctors I've known and joked with for years seemed aloof and disinterested. Go home and take your lactalose until the end...bye. Is how it was. My personal follow up was just as bad. I suspect money and policy has something to do with it. I've heard this from several other friends with various conditions. If you can "afford" and follow all their recommended advice, I suspect they will be more attentive. The message seems to be "jump on the drug/surgery/transplant money train or be relegated to the let them die category" It was so bad...I knowwww I will not go back to any of them unless I am unconscious and dont have a choice.
For now, I keep brewing and drinking kombucha tea daily without fail. It has done more for my "uncompensated status" then anything else. Digestive, immunity, bleeding etc. And I must state a probable miracle of God has something to do with it. I keep getting stronger. I think my liver is starting to regenerate! Hang in there, and dont believe everything your doctors tell you! Be good to yourself, try kombucha...particularly GT's gingeraid...very good for liver, inflammation, and immune strength in the gut!! I noticed a change in 2 days...energy and digestion. I know I sound like a freakin commercial, but I have a little hope, now that I am feeling stronger. Best wishes.

shelleyekg 12/12/2016

I just wrote the LONGEST reply. Too long I suppose as it time out and was lost. Just wanted to say I had an ER visit Thurs and was treated as a drug seeker for RUQ pain. THIS HAS NEVER happened to me EVER!. I worked at this hospital for 20 years. I am writing a letter and hoping for an apology. STill SMH! TTYS Shelley

levoo 12/13/2016

Yeah, I really went through it for a while, every time I made a payment I just got furious all over again. I had to conclude that letting it go would be a better use of my limited energy. To write the letters I wanted to write would have aged me more than I can afford.

shelleyekg 12/13/2016

Hi Levoo. Just wanted to let you know I saw my liver doctor. The ER physician had called him at my request. I just saw my liver doc yesterday. He said the ER doc was questioning that I may be a drug seeker. He said "Shelley if could have come through the phone I would have punched him in the face!" He told the ER doc he has been my physician for 12+ years and that if I in ER and say I am in bad pain, then that is the truth. Funny because after the call the ER doc came in and "changed his tune" and offered me narcotic pain relief. Which did the trick! So no letter writing! And I agree, letting it go is a must. It is exactly what my Dr Ben told me to do!!!

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