Some You Win, Some You Draw….
Time for a little reflection methinks…..
Opinions, facts and feelings are fluid things, as more information comes in they change or at least they should change. I consider myself a pretty fluid boy although its fair to say that not many people who know me would agree, I think that is because of my “plan” problem. I believe that there is no such thing as a bad plan as long as you follow it through, choose your path [hopefully wisely], give it 100% and execute it. I think that beats a great plan poorly executed everytime.
My treatment plan was very simple, take all my drugs when I should take them, 100% adherence was the target and to be honest SVR [or a cure if you like] never came into the equation. The main thing, the only thing, was not to quit. There are a few practical reasons for that, you have to finish the race before you can win it, but the main reason was psychological. With cirrhosis its highly likely this won’t be the first “challenge” I will face, in many ways this is the easy one, so now is not the time to become accustomed to losing, to quitting, to simply give up. Its the whole “drawing a line in the sand” thing.
That approach does have a fundamental flaw, the problem being that if you don’t achieve a 2 log drop at 12 weeks then your chances of SVR are between zero and 2% at best, best guess for me is about 0.25%. Usually the medical people would withdraw treatment, which they haven’t *yet*, but that would destroy my plan. That means I have had to adapt the plan on the fly. Now the plan is to achieve SVR on this round of treatment, adherence is a major component of that plan but it is no longer the only game in town.
I have my appointment with the Consultant tomorrow, with luck I hope to be able to discuss how we can force me down to undetectable and beyond, thats the new plan. I think this is going to be difficult, the medical people will be faced with a patient who has changed from one in whom they can rely on to do exactly what they tell him to do, when they tell him to do it, to one who will “question” the path we are on and push for change. That change will have to be managed well, managed by me, its vitally important that we remain a team and work towards the same goal. Part of that will be my ability to have “empathy” with them, to understand the forces and pressures that define how they do their work and financial considerations will be a big part of that. We shall see.
So there you go, I am quite fluid really 
Only on some stuff though, some stuff never changes. Never quit, give it your all, accept that the major factor in all of this is yourself, take responsibility. All those things are the foundations to my life, I can’t see them ever changing. The main aim is to be able to look yourself in the mirror, if you have to crawl there to do it then crawl. Without that you are just the living dead.
Winning is not everything, but wanting to win is.
Vince Lombardi
Just so you are all aware this post has broken a golden rule of treatment, don’t think too much, its dangerous. I hope that tomorrow I don’t break another golden rule and fail to remember that “a little knowledge is a very dangerous thing”.
So thats where we are today, looking back and looking forward. The main difference in practical terms from pre-treatment is simply this…..here and now a 0.25% chance of SVR looks very attractive, If I could only double that
We are not permitted to choose the frame of our destiny. But what we put into it is ours.
Dag Hammarskjold
January 29th, 2006 at 4:05 pm
Good luck for tomorrow, we are all behind you.
January 29th, 2006 at 4:42 pm
The plan is all very well while it fits the path of accepted treatment options, but there comes a time when the consultant’s best laid plans are exhausted, and any future moves may be along the lines of you laying down a strategy for him! Get him to throw the book of plans away.
I would suggest that before he abandons you into the vast empty void labelled ‘non responders’ he runs one more viral load, and keeps you on treatment until the result comes back. If this comes back as very low indeed, or undetectable it may be worth continuing, possibly for longer than normal treatments as a result is still possible. You would be a slow-responder rather than a non-responder. If the V/L is up on your last figure, or has not dropped appreciably you will have to face the fact that the current treatment is not going to work.
So where then? Well different interferons give different responses in different people. There is a fighting chance that switching makes will get a result as it has for me and many others. In an ideal world, switching immediately and monitoring V/L for a month would be the chosen course. A big drop or undetectable would make it worthwhile carrying on for another 24 weeks. Alternatively, take a treatment holiday, recover, and try again with the different type. This is all outside the guidelines, so what chance you have of getting the consultant to play ball is in the lap of the gods.
Take a good look at Surf2000’s recent posts on the forum. He switched mid-stream and the V/L’s look promising.
Failing all this, you end up in the queue for VX-950 or whichever of the new generation drugs proves most effective. You have almost certainly bought enough time to make it to that point without serious damage.
Stay positive, and make sure the consultant does as well!
Martin
January 29th, 2006 at 5:08 pm
Thanks for the kind words and great advice.
Off to the lion’s den tomorrow, I will be appearing as Daniel
January 30th, 2006 at 4:38 am
Yeah good luck for tommow Hep C fella, we most certainly are all behind you and will be thinking of you as always
January 30th, 2006 at 7:23 am
Good Luck. You are in my thoughts and I’m sending positive vibes.
January 30th, 2006 at 7:42 am
You will be in my prayers. Please let us know how it goes.
Week 7- I had a good weekend, slept friday noon til Saturday AM. Then had to be up and alive to coach basketball and to take my children to a football game. I had a good time as all 6 were there along with my brothers children. After the game I took my Saturday PM shot and again slept until Sunday night. I was able to eat a little and sleep again Sunday night until Monday morning. I am feeling better than last week, even the pneumonia symptoms seem better. I am going to try to take it easy this week and stay rested. I hope I can find a way to eat better also. I just don’t have much desire for food right now. I should have a lab report this week and I look forward to that being good news. Keeping the Faith !
February 3rd, 2006 at 7:09 am
Good to hear from you again Jimmy!
Week 7 already, boy time flies. I would say week 7 and 8 and maybe 9 were my worst so far, I hope things improve from here on in for you too.
November 7th, 2006 at 1:32 pm
This note is for all readers that had viewed comments from sorebones. When this letter was written, I had just found that I had Hep C and I was feeling sorry for myself. I was (am) angry but there’s nothing anyone can do about it. Please forgive me for the hostility I must have come across with. When the letter was posted, I had more bad feelings than ever.
Now (Nov 06) I am in the 10th of therapy and still doing well, so far.
Again I say to everyone, I AM SORRY FOR MY IGNORANCE, please forgive me. Thanks