Open thread

[Califia]

I just provided a well known hepatologist with the URL for this site, as he wanted to refer some of his patients to a good support forum.  I have tender memories of my residence here when I treated, and still pop in once in a while.  However, I just had received an old familiar shock perusing the AIDS thread & now regret my recruiting effort.  Madre Mia!   The bad old days are still with us, it seems.   Is it too melodramatic to remind that we are all suffering flesh, especially those of us who are suffering on treatment, and that all here deserve to be treated with dignity and compassion?   Okay, 'nuff said.  Ball's in play!

[Mister beagle bailey]

Chevy I agree with what you said. :)

beagle

[mikesimon]

Where's the AIDs thread? I missed it and am now wondering if it's going to set me off. Mike

[sunspot]

I just finished reading the AIDS thread. There were a few zingers but nowhere near as bad as some in the bad old days of this forum.
This is still a great place to be.

[mikesimon]

Did I get deleted? If I did I think that's the first time in over 4 years. Mike

[mikesimon]

Gee, something weird is going on with my computer. I could see my name on the thread but there was no post...and now there it is as plain as day. Anyway, where is the post re: Aids? Thanks, Mike

[jmjm530]

That happens a lot. But if you refresh the screen the post fills in. Maybe a cache thing. Dunno.

I think thread in question is "Atypical HCV transmission questions, and familial symptoms...." posted by DoubleDose yesterday.

Hope this finds you well. Have you done another VL test? Are you still on the Peg?

-- Jim

[mikesimon]

I had a Heptimax Tuesday and the results should be here today - they shopuld have been here yesterday but sometimes I have to call and remind them.
I did hit refresh a number of times with no success. Then I was reading another thread and when I returned to the threads I found my post appeared. That's the first time that has ever happened to me.
I gotta write this because it totally floored me and I still don't know what to think about it. My liver transplant surgeon  has always shot straight with me and never candy coats anything. He's an upbeat young brilliant surgeon who has impressed me time and time again with his knowledge of everything HCV related. Anyway, he was asking me if I invested in Vertex as he knows I play the market. I told him I couldn't gamble on a liver stock though I thought it looked very promising months ago when I could have gotten in cheap - he remembered me talking about it with him. He laughed and said that PIs were going to change the HCV landscape. I asked him if he thought they would be that good. He replied they would make Hep C look like AIDS. I was incredulous and I said "And you think that's a good thing?" to which he responded "Have you seen Magic Johnson lately? He looks pretty healthy to me don't you think?" I didn't pursue the subject because I had another direction - my liver - that I wanted to talk about but his remark was one I would have never anticipated. I still don't know what to think but I know that it's human nature to prefer the devil you know to the one you don't but this statement coming from a liver surgeon has really made me re-think  all of my preconceptions about AIDS and HCV and PIs. Mike

[jmjm530]

Don't know the reason for the lag in posts appearing but I've noticed it at least a dozen times so I wouldn't worry about big bro too much :)

That AIDs comment by your doc is interesting and maybe if you strip diseases from all social connotations/prejudices that most of us have it, and look at a disease clinically, it makes sense.

All the best luck with your Heptimax.

-- Jim

[mikesimon]

Jim, I'd be lying if I said that his comment reassured me - that much I know. But, as I said this guy is no fluke or pretender or reactionary or a guy that likes to shock. I suspect that he thought what he said would comfort me and that tells me that, in his opinion, HCV is a very serious condition and not just for transplant recipients. Karen was with me when he made that statement and neither of us wanted to hear it or pursue it. This surgeon once told me, after I'd been treated for rejection, that he was afraid I'd have cholestatic hepatitis the next day. This was shortly after transplant and I wasn't informed enough to know how serious a situation he was describing - it was close to a death sentence or a re-transplantion scenario. The point is he talks straight to me regardless of nature of his opinion or diagnosis. I didn't get cholestatic hepatits by the way. He can be and has been wrong so I don't delude myself that he's pefect - but he is real smart and I assume that he's given this a lot of thought so you might be right about how it would look if we could divorce ourselves from sterotypical thinking about AIDS. Mike

[friole]

califia, this forum is just like a person.  Sometimes good and sometimes bad. Still, there is a lot of wonderful information and support here.

My hemotologist is going to tack on a B12 test to my next CBC Monday.  Do you know why?  Because of you.  Only because of you do I know there is a possibility of B12 deficiency post tx and only because of you do I know how severe that can be. I want to thank you for posting that information.  BTY, the hemotologist thinks the sublingual B12, OTC, is the way to go.  No subcutaneous shots if you don't have to.  Just slip that pill under your tongue and let it dissolve.  She reinforced -- NO CHEWING OR SWALLOWING.    ..... all this to say, this forum has value dispite the warts.


On vertex stock.  Boy I wish I had invested.  Put it on my watch list at $15 but never bought it.  Glad to see Johnson & Johnson is involved now because I do have some of that LOL -- still missed the big rise.

Mike - that is interesting what your doc says.  You two need to go out for a casual dinner sometime so you can discuss stuff in an informal setting and not have to focus on your own liver, which of course you need to right now - especially at your appointments.   Good luck on the heptimax..

frijole

[Mister beagle bailey]

I to take the B12 but in the shot form.  I was told that the pill is not as good.  With my hgb being so low durning tx, I had a B 12 shot every week along with the procrit only not on the same day.  It worked wonders for me and what's good about B 12 is the body exspells what ever B 12 it doesn't need, so there is no danger of over does like some vitamins.

Beagle

[jmjm530]

You and your transplant surgeon are looking at Hep C in a way few here are. On one hand, that means to me that some of what he tells you may not be relevant to many of us. But on the other hand, it puts things in perspective by not only showing how far hep c can go, but also showing how successfully it can be treated at any stage. Sounds like you have found exactly the right person to guide you through the difficult decisions you've encountered. Don't have to tell you that everyone here admires how you've handled the whole situation.

-- Jim

[bobbyullc]

hi,
i remember the name. how did tx go? svr?

thanks for putting the dr on to this site. it has been invaluable to many. as for the melodrama,,,,most of us do not read it,or even acknowledge it is going on.
new bodies and a dr. will be a good addition. THANKS
bobby

[Califia]

Well, I'm not trying to send the doctor this way, just his patients.   (His articles show up at the various hep medical sites, though.)  This is a patient-to-patient forum, anyway, a good place to get your medical degree on the cheap w/o professional supervision & all that other petty nonsense.  And I'm fine, thanks for asking--survived tx, at 11 months post, and probably SVR.  A few residual tweaks from treatment, but over all pretty satisfed with life.  Take care.

[friole]

I have heard the same thing about the shots vs under the tongue.  But gosh, this was right out of the mouth of the hemotologist.  I have never had a B12 shot.  I am so glad to see your hgb on the rise and think it is a good idea about the B12
frijole