WHEN I SVR with Vertex Prove 3 - will I go the Mike Simon route or take the Brit Girl approach?

[miked]

I entered into my 1st round of SOC tx with INF+RBV somewhat uneducated.  All my life I've taken really difficult situations head-on and normally won.  I knew that I'd do these drugs for 48 weeks, go about my business as usual, 50% cure rate that I'd be in; game over....put this whole HCV thing behind me.

Right before starting my 1st failed tx, I found this board, read through it and and thought to myself, "My God, what a group or whiners and pansies.  Suck it up people; take your meds; get cured; move on....what's the need for all of this discussion, debate and support?"  I'll never take part in that!

After my 1st go around of weekly INF+RBV that produced every symptom know to man....I became one humbled guy.  I've never done anything so rough in my life and oh by the way, lost with a viral breakthrough at week 32.  Then about week 3 into my 1st tx I came to this board almost daily for information, support and advice.  I honestly don't know what I would do if I didn't have this board and you people to turn to.  Thank you so much to all the people who invest their time posting here.

What prompted this post is 1-2 days ago I read a post from a person I didn't recoginize who basically said, "Don't be expecting to hear from me after I SVR".  Which by the way I think is an individual choice and a fair point of view.

That got me thinking if I am so lucky to attain SVR through the Prove 3 trial; will I continue to come here in support of others like Mike Simon (special transplant case), Jim, DoubleDose and countless others.

It's really OK too to just move on....the goal of tx is to have a healthy liver that you don't even have to think about, right?   Again, I'm not saying either way is right or wrong and I'm not picking on anyone.  There used to be a woman here titled BritGirl who SVR'd, move to South America and looked forward to a glass of red, good for her.  I haven't heard much from Snookmeister since he SVR'd; this yguy lived in South FL, got HCV from his Mom, got SVR'd and move on with his young wife, good for him too!

I just got me thinking about what my actions will be if I'm so lucky to SVR?

Mike

[APKhaos]

I'm with you, Mike. This board had three general groups who literally carried me through the journey:
- the fellow travellers, who in my case were the VX lab rats
- the old hands, who comprised those who had treated and cleared, and those heroic multiple treaters
- the newbies, who arrive here with the same fear, uncertainty and doubt that I had back then.

The board needs old hands to call the BS, to help the newbies, and to keep the place sane. Its easy to hit SVR and sail off into the sunset, but I for one feel the need to give something back to this community.

[mikesimon]

You should just do what feels right. There is no right or wrong. I stay because there aren't many transplant recipients who've achieved SVR or maybe there are and they don't announce it or maybe they don't stay. I think I have outlived my usefulness to a great extent and have thought about not staying around. But, the subjects of persistent and occult virus intrigues me for the obvious reasons so I look for any discussion along those lines. I owe a lot to this board because I didn't know a thing when I found out I had HCV. I actually thought that my transplant would cure HCV and the first year after transplant even though I was treating I never looked at a PCR until the end of treatment. Then in 2002 I started reading about HCV and I found this board. There were so many knowledgeable and brilliant people here that all we did was toss around theories and articles and studies and because of that I got a little smarter and for my third TX I insisted on full doses for an extended treatment duration. That's why I am SVR and I owe this board a tremendous debt of gratitude because without it I doubt I'd be in the shape I am in. That explains my presence and I am sure you have reasons for either staying or leaving and they are valid for you. There is a real value in putting this behind you and moving on - I just haven't reached that point yet. Good luck whatever you decide to do. Be well and happy, Mike

[mremeet]

On the one hand, if I manage to pull an SVR off, I'd like to hang around and help newbs when I can here and there. On the other hand, the thought of drifting off, starting a new life and putting HCV behind me like some ancient nightmare has a definite appeal to it. Especially with all the commercial spammers and multiple personality online sociopaths that seem to be plaguing this place more and more lately. If I don't get my SVR, then I'll probably go into a depressed reclusion for a good while. But I'll be back, simply because I have to in eventual preparation for round two. God I hope it doesn't come to that.

Mikesimon that is very cool of you to hang around for those in the worst sorts with an impending transplant and HCV. Your story really is astounding, hard to believe you managed to pull an SVR off with just about everything going against you (especially with the immunosuppressants in play). Anyone who comes by in a similar situation could gain a tremendous amount of insight and hope from your story. You're almost like a human lighthouse in that regard, infected transplant folks are in the stormiest of waters and under the darkest of skies - your unique and positive experience can see them through. Pretty amazing really, kudos for helping those most in need.

[mikesimon]

That is very kind of you to say and I thank you for it. Mike

[jmjm530]

When I was treating, I couldn't understand why anyone would stay here after treating and in fact I planned to run for the hills after my last shot. So what changed?

What changed is that I didn't realize that I -- like many here -- would need support after treatment, for a whole host of both physical and psychological issues.

In fact, the post treatment period can present an Easter Basket of unique problems that for some can be more troublesome than the treatment experience itself. Of course you won't know how much post tx support you will need until you are post tx.

In my case -- again like others -- first there was the stress and anxiety of waiting for those critical post tx PCR tests. But equally stressful was the fact that I didn't feel as good as I thought I would. Last summer -- for just one example -- I was pretty much a basket case, visiting one dermatologist after another, trying to figure out what to do about my post tx skin problems.

Fortunatly, things have changed, and this summer -- 15 months post treatment -- my skin is pretty much back to normal, or certainly closer than I expected it to be a year ago. As to the others issues, I've pretty much come to the realization that there isn't a whole lot to do about some things,  therefore no reason to invest more energy that necessary.

So now that I need less and less support, I stay on mainly to share what I've learned in the hope that others can benefit. How long I'll stay and how frequently I'll visit are questions that I don't think about, nor would I have the answers to, although no doubt my time here will be significantly diminished as it has already been the last couple of months.  

So to go back to your question -- I wouldn't think which route you will/should follow, but just go with the flow. If you need support and/or feel you want to give support, then stay on. If you don't, then move on. You'll know when the time is right.

-- Jim

[copyman]

i believe it is me who you are talking about. i did say i would want to move on with my life. if you read my post it said that this disease has consumed me and my life. sitting in front of the computer everyday hours upon hours helping when i can and asking for help when needed. what i meant was i would just want to make up for lost time with my wife and 9 yr old. it did not mean that i would not be grateful for everything that the people have done here for me. the people here have in essence have become my family for the last year since i found out about my hep c. i care about everyone on this board ! and if it did happen that i SVR'd and left i would always remember all of you. i have not even starting tx yet so that is a long time away. and like others have said here it is a personal choice with no right or wrong.

[geterdone]

Heck guys, I can't add anything, all my stuff is all out on the curb and it's all true with just a twist. Would I ever forget this place and people, hell no.
jasper

[bobbyullc]

i applaud your both for staying here and helping those of us who need some intellegent support. i have seen both of you get blasted for your opinions and would not blame you for bailing out but thank you both for staying to be of such a help.

thanks from my heart.
bobby

[purplecat]

I'm so greatful for all the help I've received.  Without this help I don't think I would have made it this far through treatment.  Shot 44 tomorrow.  

Jim, just recently trying to help someone having skin problems you mentioned your skin problems and saying you had 3 different things going on.  Talking about a dermatologist doing skin sample to DX and posting the very informative link saved me.  I realized I did have more than riba rash. Hep Dr said next point was lowering Riba dose.  I didn't want to do that so I was suffering.    

After reading your post  I got myself into a dermatologist 26June.  First thing he said when he looked at me was " well you have a few things going on".  Then took a skin biopsy that needed 1 stitch.  I go back 09July for stitch removal and reassement and find out results of biopsy.  He prescribed 3 different topicals for different area problems so I am doing so much better.  Actually enjoyed my 4th of July yesterday.  You were so right, thank you!

After I find out biopsy results Monday I will post my story on the Community side with all the details and hope it can help someone having similar experience.

Now that I'm almost through with treatment and have had so many issues to deal with, I think this experience can help others as I have been helped by so many of you.  When I feel I can add to a thread with some valuable information I will post. I owe so much back.  

          

[meki]

Hmmm...

OK - so here's the deal.

I came here for months and read.

I finally posted when I got scared enough to freak out. I was POST TX when I posted - but was (and still am) having SX as bad or worse than during TX.

I was freaking out because I thought when TX was done - that would be it. Done. Finito. Buh Bye problems.

But it wasn't. I'm almost five months post - and I'm just now getting some energy back. The desire to motivate and move more than a few feet.

I believe in educating people. And I don't fool myself. I may be cured --- but the disease may also be hiding somewhere in my body. I doubt it... but it could be.

And I also think that all of the help I got --- knowing others were having sides that they managed --- or were going through worse things than I was... well --- that help was so astronomical.

In fact - most of the time during TX I was too darned sick to even type much. I didn't have the energy. I would navigate to a page - and my eyes would drool down it.

But the people here - through their squabbles, their calling BS, some of the drama... some of the fun times and the high fives... the ups,  the downs... the new people walking in and being just as scared as I was...

And being in pain - or exhausted and not knowing what to do --- and TRULY having no one to talk to...

Because no matter what your family or friends say - unless they've been through it... They do NOT understand...

And no matter how much you tell them... I don't feel good --- over and over... their eyes glaze over and you feel like you're a broken record.

At least here - people can identify.

And you can help.

And you can help teach others ---- to teach others.

And all it takes is just a few to pass on the word --- to get it out there to keep the ball rolling. Because the more that are aware of the disease - the more that are aware of what happens ---- the more funding -- the more education - the more help people on TX can get... The more understanding the doctors can have THE CLOSER THE WORLD COMES to understanding and changing this disease.

The only way it will be eradicated is through knowledge and money.

So - I choose to stay - help where I can... But someday I may choose to disengage myself.

For now, I am here as much as I can be - and helping as much as I can.

I hope that I do help - and do make someone else's life easier - like this forum has done for me.

Meki