Re: don in ks update - back at ya Don...

[Guest guest]

Dude,You sound better already... I could almost hear the angst in your words before... Glad you are breathing again. With what you are up against, cardiac wise, I definitely like where this doc is coming from. She laid it all out there for you. Now you can digest it over the weekend and go from there. It's actually really good news that you aren't in dire need of treatment. Try to relax and eat something would ya?Hugs,Teri From: Christ <ludichrist2000@...> Sent: Fri, September 24, 2010 3:19:56 PMSubject: [ ] don in ks update - Teri

Hi Teri

Yeah, I love my Gastro too.

She is probably in her 40's, and sat and talked with me for well over an hour.

I was her only appointment today, and she didnt seem to mind addressing 'all' my concerns.

She displayed today that she is very attentive to every detail.

I suspect that she is one of those people that not much gets past her.

I dont know how I rated getting her as my doc, but I am very pleased because my last Gastro was a real creep.

[He begrudged spending 5 minutes with me.]

I guess Im pretty happy with everything that happened today.

I will sit back now and take a deep breather.

I will also thank God for giving me a good body, that is able to fight.

You know, I might make it to 90 years old like my Dad, after all.

Who knows.

love

don in ks

From: Teri Gottlieb <theresagottlieb@...>Subject: Re: [ ] don in ks update - good and bad and TELAPREVIR Date: Friday, September 24, 2010, 2:58 PM

Don,

I think I love your gastro. You just got the most honest and straightforward answers that you could have possibly gotten. Actually, I am happy for you as far as the HCV goes anyway. Not liking what is being said about your heart though. CHF is a very delicate issue and the treatment is always on the cautious side. That's one of those things that can pop up and kick you in the ass at a moment's notice. Once CHF rears it's ugly head the docs watch for it carefully for a very very long time to make sure that it's no longer an issue. That is why your gastro is delaying the onset of any treatment. The fact that your liver functions are in the normal range is great news. And yes, you may be one of those that can live with this virus and not need treatment. IT HAPPENS. Remember, more people die with this than from it. All in

all it sounds like good things happened today. I know you wanted to start treatment and I'm sure you are disappointed. You can go thru treatment vicariously thru Trudy and and marie and everyone else. Really, don't feel left out.. I don't think I would ask for what ny is going thru. That's what the doctor is really concerned about... Can your heart handle the worst case scenario on this treatment? Maybe... maybe not. Therefore, if they aren't convinced that medically you can handle the worst this treatment has to offer, they are not going to let you get started. Chin up. You're going to be okay.

Hugs from the very windy suburb of Gurnee,

Teri

From: Christ <ludichrist2000@...>WebWarriors grp < >Sent: Fri, September 24, 2010 2:34:25 PMSubject: [ ] don in ks update - good and bad and TELAPREVIR

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