Dr. Erb said the last biopsy was a 1 out of 4 for fibrosis and a 2 out of 4 for inflamation. This time it's 2 and 2 so there is a bit of progression but no panic as far as treatment goes.
His advice is we should start thinking about treatment again and what he would like me to do is a 3 year course of interferon with ribavirin for the first 3 months. He said that when I was on treatment my rna went to undetectable and my liver counts all went to normal so he feels if we do the ribiviran and the interferon for the 1st 3 months it will bring all the counts into line and then we can keep them there with the interferon. The anemia last time just kept on a downward spiral until the drug was discontinued and then I had to wait for the counts to come back up before I could take the ribavirin again. Twice that happened during the 48 weeks.
So then the next thing is money. He says it costs $2400 a month but we do have pharmacare and my husband has extended health benefits at work. Dr. Erb says that pharmacare will only pay for 1 - 48 week course of treatment and because I was on a drug trial last time and have never been funded under pharmacare then I should do it that way this time. But with pharmacare you have to pay whatever your portion is once a year. So if I was to start treatment now then I would have to pay my portion before pharmacare kicked in and then again in January when a new year rolls around I'd have to pay my portion for that year. So the plan right now is to go back in January and start the treatment then so that the first year of treatment falls in a full year of coverage. Then we will go to my husbands extended health. They pay 80% of the cost of drugs so that would still leave us paying $400 a month ourselves but Dr. Erb seems to think that the drug companies will kick in and help pay so that works for me.
I asked him if during this treatment if a drug trial became available would I be able to switch over and he said yes and no. Some drug trials will not let you participate if you have already had treatment but some do so if one came along that I qualified for then I could switch over to it after a 3 or so month period of quitting the drug and starting fresh on the trial. The final thing he said was, "You don't want to find yourself sitting there 10 to 20 years from now with end stage liver disease because you didn't have treatment now".
It is a relief to know exactly where I stand and to know I have 6 months to go before I start treatment. Starting in January is perfect for me work wise too because winter is a slow time for us so if I need to take time off work in the beginning it will be easy to get the time then. Also if I get sick from the ribavirin and need to take some time off work I always have medical EI to fall back on as well so just knowing that helps relieve the stress even if I sail right through treatment this time with no problems. Hey gotta keep positive! Plus I want to finish organizing the house.
Josh moves out the end of the month. Middle son who moved home 2 years ago so he could save up for his third trip to Thailand. He loved it there the first two times he went and wanted to go back one last time before he settled down and bought a place of his own. So he moved in and saved up and took time off work and went to Thailand for 5 months. When he got home he decided to stay home and save money for a downpayment and pay off all his bills. He has now done that as well and is moving into his own condo a few blocks away from us on the 29th of June (but who's counting the days lol) Then we want to finish clearing away 28 years worth of clutter and "I might need it someday" sort of stuff. We have already done quite a bit and I have been buying rubbermaid containers and bins and organizing what is left.
Oh yeah, that is something else, the biopsy and ultra sound report both showed I have a bit of a fatty liver. I have no idea what that is about and when I am done here I am heading to google to read up. I have been tired alot lately and find I am resting between chores and such lately as well. Been having pains under my ribs on that lower right side as well and all these symptoms are not going to get better until I start treatment. That is what I have to keep reminding myself. All the news today does not alter the liver disease symptoms I am having now and the only way to help is eat healthy, don't drink (which I haven't done for many years) and get rest when I know I need it. So that is the plan. To me it sounds good.