don in ks update - good and bad and TELAPREVIR

[Guest guest]

Hi everybody

Just got home from my Gastro-doc appmt.

I have been sooooo worried about this dreaded day.

Didnt hardly sleep last night any at all.

Well, heres the bad news first.

My G-doc wont let me do HCV TX for at least another year.

- wah - yea - wah - yea - wah - yea..........LOL

It seems too, that my heart-doc wants me to wait awhile longer due to something going on with my heart still.....the CHF [congestive heart failure thing].

I thought that my heart had healed because Ive been off my heart meds for 6 months now, but I guess not yet.

- BUT - heres the good news:

Since my labs are staying normal, few HCV related health issues, and my VL is staying below 2 million, my gastro-doc isnt even concerned with a biopsy yet, much less HCV TX.

She told me that I have probably had HCV for decades, and that I am in that small percentage of people who may never have to do HCV TX, and certainly not any time soon.

Now that surprised me.!!!!!!!!!!

I sure didnt expect that prognosis.

She asked me all sorts of questions like health issues that I might have been experiancing with HCV, then checked my eyes, teeth, tapped on me, listened to my chest, looked down my throat, and a few other things like my hands and feet, bloating, swelling, skin stuff and so forth.

- We discussed my fatigue.

She said it could be the HCV or the Fibromyalgia, that theres no way to really be sure without a liver biopsy, and she doesnt want to do that yet.

- We discussed the Fibroscan vs the needle biopsy, and she said she doesnt think that the Fibroscan is as good as a BX. [i agree.]

- We discussed memory issues [ammonia buildup from failing liver], and I told her I forget to remember. LOL :-)

- We discussed my diet, lifestyle, and the sups that I take.

She told me to stop smoking, but otherwise I am doing really good taking care of my health at home.

- And we talked about my fear of stressing my liver with prescription meds.

She said that I probably dont have to worry about over doing my scripts because my liver seems to be doing so good.

- We discussed Telaprevir [Protease Inhibitor], and she doesnt think that its going to be approved for at least another year, possibly longer....this according to the company rep she talks to.

She said that it probably wont be fast tracked, and everybody is waiting on the AMA for approval.

I thought that the phase 3 clinical trials were already over, but she said that they arent just yet.

Perhaps by the end of the year.

- We discussed why she wouldnt recommend HCV TX yet for me, over and above my labs.

She said that treatment is a balance between the sides, complications, and the health benefits to someone.

Seeing that I was doing VERY good liver-wise, she thought that for right now, I should wait.

She also said that there is no reason to do a liver biopsy yet because I am not displaying any signs that one is required yet [labs, sides, etc].

- We discussed a lot of other stuff too, like the groups like the Warriors that I am involved with, getting a support group going in NC Kansas, starting a 1-800 phone support thing, and lots more Advocacy stuff.

She gave me some info that I have to explore yet, and later on I will post about it.

She was very impressed that I am so active, doing daily research, and trying to help other Heppers.

I gave her the HCV Links Library URL that I am trying to build for all of us, and she is going to help me with it as she can.

So, I guess my heart sucks, but my liver is doing pretty good....so far....40 years and counting.

All in all I am most amazed.

I went in all ready to get set up for my liver biopsy, and a treatment dates.

I was all ready with questions about assisted care living facilitys, and/or home health nurses, so that I can stay on top of my meds and shots [because my memory is so bad, and the psych meds I am on mess me up].

I am both happy and sad.

I am happy that my body still has a lot of fight in it yet, and is beating back the HCV.

I am sad because I am facing yet another year of this bug in my body.

I want to be free of the HCV, once and for all.

I love all you folks, and Im glad your there for me too.

Im going to take a nap now because my brain is fried.

Talk to you all a little later on.

love

don in ks