Treatment plans

Hey all! I have been gone for quite a while and I see a lot of new faces here, some old familiar ones, and a few who seem to have gone. For those of you who don't know me or don't remember me I'll try to fill in a few blanks here about my dx.

I was dx in May 2013 with Hep C and have been infected probably at least 36 years. I am also an alcoholic and drank regularly every day for over 20 years. I have stage 4 fibrosis, and am pretty well compensated, but have some symptoms that improve when I watch my diet and don't drink. I have portal hypertension and have had banding procedures for several large esophageal varices. I take propranolol for the portal hypertension. No other meds at this time.

I had a really bad winter and my seasonal affective disorder was so bad. I have been terribly depressed to the point that I decided that I just don't care to fight this disease. I can't focus and I can barely leave my house anymore. I am trying to pull myself together now and get back on track so I thought one thing to help myself would be to try to reach out to some people who understand better than the people around me what I am going through.

Now I am reading about all the new treatments and how well everybody is doing and that is just great. I have my 6 month check with my hep doc coming up at the end of April and he told me we would probably ready to start treatment when I come in. Actually, I am scared because I don't know what my options will be but I am hearing all these stories about major fights with insurance and drug companies to get them to approve treatments if what your doctor wants is not SOC set by them.

I am treatment naive and genotype 1a so I have read that the SOC will have to include interferon. But since I am cirrhotic my doctor said he will not put me on interferon because it could kill me. I am really hoping to avoid ribavirin too, but I know a lot of people are treating with Sovaldi and Riba. A friend sent me a paper about a study of Sovaldi/Olysio that was really promising but I heard that doctors have to be ready for a big fight to get that combo approved for certain patients. I see that is what Mike is on and was wondering what the criteria is and how hard it was to get it approved and paid for. I have been reading the treatment blogs from everybody here, but I don't know how easy or hard it was to get everything going. It's not exactly like they hand you a script and you can walk into Walgreens and pick it up I guess. LOL

Anybody who can shed some light on this I would really appreciate it. I want to be as prepared as possible for my appointment and also for the disappointment if I find out my insurance isn't going to cover it. If there is a huge co-pay then I will be out of luck because we just don't have any extra to spare at this time. These medical bills add up so fast. Even with really good insurance we get bills everyday from all these different labs and doctors and hospitals and if you send them all something every month it adds up to a big chunk.

OMG! I was wondering but was actually afraid to ask. :'( I'm so sorry to hear that.

Thanks for the welcome back Barry. I'm happy I came out of hiding, but still having a rough ride. I fell off the wagon last year when my dad was in ICU for 11 weeks, went to Denver to visit the kids before Christmas and fell and snapped my humerus in half. I had surgery, they cut my arm open from armpit to elbow and put in a metal plate. I got out of the hospital on Christmas eve, a total mess. Been locked up in my house depressed and beating myself up since I got home on New Years. I was so ashamed, in pain and just couldn't bring myself to talk to anyone. Finally realizing that I have to snap out of this or I am choosing to die. I know that's not what I want. I guess I better gather my strength and be prepared for whatever is going to happen. I am even having a hard time deciding if I should post this or not because I don't want people to know how I really feel. I'm hoping some here will understand how I feel anyway.

doni

doni

Thank you Sandia! I needed that. :)

doni

Um... Admited to drinking makes you not worthy? I wish someone told the rest of us, we wouldn't be here then! Honestly that part of your post didn't even register with me, I just saw Hep C and knew I had nothing to offer. I am an alcoholic cirrosis sufferer, not viral hepatitis, so I am sorry, I don't know anything to help you. Be patient someone will probably be around to help.

-K

denverdoni said...
Actually, I am feeling kind of out of the loop (unwelcome) in this group. I am pretty sure it is because I admitted to drinking and not being worthy of talking to. I asked a couple of questions and no response except for Barry and Sandia. thanks for that anyway.

Hi denverdoni, I'm new here and on Sovaldi and Ribavirin treatment and just want to say regardless if you admit to drinking or not I don't think it matters and I think its more likely your post was made on the weekend and perhaps not many people have seen it...like myself.

I personally understand how sometimes we can go without alcohol for years and then all of a sudden be stressed and have a few drinks, this does not make us a bad person at all and as a matter of fact I think it was good of you to actually come and share this with everybody and obviously you wanted to talk again otherwise you would have just stayed away but you didn't.

You'll always be welcome here as its a support forum and we all need each other for support with this through the highs and lows of it all and regardless if you had one drink or one hundred drinks doesn't matter, you're back here for support and we are here but understand some of us have different hours for the computer or work or prior commitments but we all do our best to reply when we can.

DD: I don't think anyone would ever feel anyone on here is not worthy no matter what the situation. I have been helped a ton on here. As for drinking, while bad that is why many of us are here. We or in my case someone I know at one point struggled. Just get back on track.

I am new, but glad to see you return to get support.

Thanks for the support. I am doing everything I can to stay on track and get myself ready for treatment. Like I said I am just scared of almost everything anymore. Feel like if someone looks cross eyed at me I would start bawling and have a breakdown.

I went to my PCP yesterday to get my propranolol refilled because my original GI refused to renew it unless I come in. I just needed to get back on it and didn't want to wait another month til my hep appt. PCP said my ascites is pretty bad because I stopped taking it when I ran out months ago, which I knew. Hope that will improve if I keep a super clean diet and stop stressing my liver with junk food and salt. Does anybody know what the right amount of water is to drink daily? I usually drink water all day with fresh lemon and lime, but my urine is very dark, like a strong tea. A few days I was very busy and didn't remember to drink as much water and I noticed it got lighter. That seems the opposite of what I thought it should be.

ML, was it any problem getting Mike approved and insurance to pay for his treatment? Do they waive the co-pay somehow? I heard some people had $16-20K co-pays for it. I have been reading as much as I can about the new treatment and just hope that I can get approved for the Sovaldi/Olysio. I know since I am treatment naive that will be considered off label, but with my F4 liver condition, history of varices, and platelets at 79 maybe they can argue that I won't be able to do the Int or Riba.

I'll be back soon. Gotta go crank out some tax returns. ugh.

DD,

I think Mamalama was right, weekends are slow typically. I think this forum would have shut down if there were no drinkers here. And for the ones that drink too much, well, don't we all get hooked on something at different points in our lives? You are no different. We don't judge here, you're here because you need help. If everything was right with your world, you wouldn't be here, so please, don't give that another thought.

I wish you all the best, I just don't know much about these treatments so many here are undergoing. I remember you by the way!

Hope you find your answers and that you turn your life around. Come here often, you know we care about you, the person :)

Best of everything to you.

Hugs,