things and stuff - SuziQ

[Guest guest]

Hi SuziQ

Yes, Im glad my labs and stuff are doing good.

I am grateful to God for being so kind to me.

I would like to rid my body of the HCV if I can, but as long as it leaves me alone......

I am scared to go through TX, I wont lie.

Living alone, with very little 'real life' contact with people who could help support me, makes me really nervous about grueling through TX for a year.

I just know that I would forget to take my meds like clockwork or something too.

And getting out to buy food is hell right now, so I cannot imagine being sick on TX, and having to.

Then too, even though I now have help minding the group, I feel responcible for it.

The group and each member is my life.

What would I do without you all? LOL :-)

One thing that has been going through my mind is the possibility that I may end up with bad complications down the road if I dont treat.

Things like transplanting or cancer.

I know, I know, dont speak such things into being, but its always there in the back of my mind.

SuziQ, I dont have any control where my life and health is going....not really.

Looking back over the last 60 years, I realize that I never have any such control.

Just the illiousion of control....and 'that' I have managed to screw up pretty bad.

All I can do is trust in my higher power to guide me to where I need to be, and ask for nothing for myself.

Just give and give and give all that I can to others, and not look back.

This sounds like a good plan to me. :-)

love

don in ks

From: SuziQ <ancientkron@...>Subject: [ ] Re: don in ks update - good and bad and TELAPREVIR Date: Sunday, September 26, 2010, 6:17 AM

Hi Don,You got essentially the same info on treatment that I have been getting for the last ten years. I agree with Gloria--treatment is very hard on the body. For some, it leaves long term effects--not all, of course. With your other health problems, it is GREAT that you do not NEED treatment. Be thankful that your Hep C is slow moving (or just sort of at a standstill). As I read all the difficulties that others are going thru with treatment, I am soooo grateful that my Hep C so far is not causing problems for me. And I'm too damn old to be going thru something like treatment--especially as I am alone. The doctors seem to think that too. By the way, I am also grateful that you don't require treatment from a selfish standpoint. Who would be there for us if you had many bad days??? Your dedication to the forum and research is really

wonderful.SuziQ>> 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> > >------------------------------------