Aa
Stuck in a psychic fetal position!
Treating the world like a boxing ring is a mirthless way to live. I have 2 months to go and boy am I easily frustrated: I know from present and post experience this is largely Interferon......But you want to know the real cloud that follows me everywhere I go? 14% chance of SVR for cirrhotics that were previous responders. When I was handling the s/e of the Incivek and ignorant of the 14% I was like Pandora's Box: lots of bad bad (s/e) stuff with hope on the bottom...making it seem "worthwhile" .....but now: Back to my psychic fetal position. d
"Like a boxing ring"~ perfect analogy.
My last week of tx, exhaustion overcame my being. Not because of the meds, but because I stopped fighting, it was over, or nearly so. After the elation of EOT, the exhaustion returned. I didn't have to fight, didn't have to push forward.
Having done tx with decompensated cirrhosis, I know it can be very tough. Although afterwords my husband said he thought it was the stupidest thing I'd ever done, I felt I had no choice.
How could I have had a transplant without feeling I'd tried everything else first ?
BTW: You might just be in the winning percentage, no matter how small.
Did you read crossroadsec's post ?
http://www.medhelp.org/posts/Hepatitis-C/UND-week-45/show/1735014
My last week of tx, exhaustion overcame my being. Not because of the meds, but because I stopped fighting, it was over, or nearly so. After the elation of EOT, the exhaustion returned. I didn't have to fight, didn't have to push forward.
Having done tx with decompensated cirrhosis, I know it can be very tough. Although afterwords my husband said he thought it was the stupidest thing I'd ever done, I felt I had no choice.
How could I have had a transplant without feeling I'd tried everything else first ?
BTW: You might just be in the winning percentage, no matter how small.
Did you read crossroadsec's post ?
http://www.medhelp.org/posts/Hepatitis-C/UND-week-45/show/1735014
I'm so sorry that you are having a rough time. I am in total sympathy with you and am feeling the same way. Take care and keep on hanging in there!
Try to stay positive because stress makes body healing harder. I know thatvsounds funny coming from me since I've been so dark lately but really do all you can to stay on the light side and not stress it is better for your health truly.
Statistics are just that dennis ..numbers that they come up with to give prescribing protocols some guidelines.
Everyone is different and stats can be beaten.Take pride in that you are doing all you can and try to stay positive.
Wishing you the best....
Will
Everyone is different and stats can be beaten.Take pride in that you are doing all you can and try to stay positive.
Wishing you the best....
Will
Dennis, please see Working Dog's SVR post today. I don't believe the odds were with him since he had to stop tx early, but in spite of that, he's reached SVR. What if you're one of the 17% who does clear? And what if your chances are actually greater than that, I believe those numbers will be revised the longer triple tx is on the market, and we have results outside of the studies. I know this is a long, slow slog through the mud, and feels like it won't end, but it will, and you'll need to hold on to the hope that you'll clear the virus. At the very least, you're likely giving your liver a break from the virus during this time. Please hang in there.
Hang in there. The light is at the end of the tunnel. I know it is tough and feels like it will never end but it will. I promise. Remember this is temporary. Try not to worry about the statistics. You have no control over that. Focus on what you do have control over. Your treatment. You are giving it your best shot. Doing everything in your control to beat the virus. That is all any of us can ever do! The results aren't up to us. If they were we would all be hep C free. We do what we can, as best as we can, to beat this thing. No more can be asked of anybody.
From my experience we cirrhotics want to know that we did everything within our control to stop the virus from further damaging our livers. It will give you inner peace knowing you gave it your all, no matter what the outcome. At least it did for me. I tried and I failed. I was a null responder. I can control that no matter how much I wish I could.
If I could only convey what has happened to myself and my friends as this disease has progressed you could see that every minute you are fighting is worth all the suffering you are going through. It really is invaluable what you are doing. I am sorry that you have to suffer, but sometimes unfortunately we have to suffer in the short term to have the long term outcome we want.
Yes, interferon is no "user-friendly" benign drug. Unfortunately only such a very powerful drug can defeat the hepatitis C virus. Don't we all wish there was an easier way? In a similar manner it takes chemo to kill liver cancer. The only thing worse than cancer is chemo in my experience. No walk in the park. Some days I thought it was going kill me before it killed the tumors. But it did kill the tumors and I am still here. So I'll do chemo any day rather than have life-threatening tumors growing in my liver.
I don't know if this helps but this is how I have got through those darkest, bleakest days and weeks. Try to take it one day at a time. Or one hour or one minute at a time. Whatever you need to do. Focus on getting through each day. Days will become weeks and weeks months. Time does pass even though some days of misery seem to go on forever. Don't try to look too far in the future it can be overwhelming. I compare it to any major project. If you look at the whole thing, it is overwhelming and seems impossible to do. But broken down into bits it can be done.
Like the old saying 'How do you eat an elephant? One mouthful at a time.'
Just take it one step at a time. Stay focused on the next step as much as possible. Don't worry about the distant future. The future has a way of taking care of itself no matter what we think about it. You have enough on your plate dealing with the day to day.
Remember be good to yourself. Be proud of what you have accomplished and are accomplishing every day you are treating. Not everyone can do what you are doing! Know that you are a fighter and that means a whole lot when it comes to dealing with any of life's challenges. You are stronger and braver than you know. Give yourself some credit. You are fighting the good fight and that means more than words can ever say.
What you are doing is totally worthwhile.
Hang in there.
Hector
From my experience we cirrhotics want to know that we did everything within our control to stop the virus from further damaging our livers. It will give you inner peace knowing you gave it your all, no matter what the outcome. At least it did for me. I tried and I failed. I was a null responder. I can control that no matter how much I wish I could.
If I could only convey what has happened to myself and my friends as this disease has progressed you could see that every minute you are fighting is worth all the suffering you are going through. It really is invaluable what you are doing. I am sorry that you have to suffer, but sometimes unfortunately we have to suffer in the short term to have the long term outcome we want.
Yes, interferon is no "user-friendly" benign drug. Unfortunately only such a very powerful drug can defeat the hepatitis C virus. Don't we all wish there was an easier way? In a similar manner it takes chemo to kill liver cancer. The only thing worse than cancer is chemo in my experience. No walk in the park. Some days I thought it was going kill me before it killed the tumors. But it did kill the tumors and I am still here. So I'll do chemo any day rather than have life-threatening tumors growing in my liver.
I don't know if this helps but this is how I have got through those darkest, bleakest days and weeks. Try to take it one day at a time. Or one hour or one minute at a time. Whatever you need to do. Focus on getting through each day. Days will become weeks and weeks months. Time does pass even though some days of misery seem to go on forever. Don't try to look too far in the future it can be overwhelming. I compare it to any major project. If you look at the whole thing, it is overwhelming and seems impossible to do. But broken down into bits it can be done.
Like the old saying 'How do you eat an elephant? One mouthful at a time.'
Just take it one step at a time. Stay focused on the next step as much as possible. Don't worry about the distant future. The future has a way of taking care of itself no matter what we think about it. You have enough on your plate dealing with the day to day.
Remember be good to yourself. Be proud of what you have accomplished and are accomplishing every day you are treating. Not everyone can do what you are doing! Know that you are a fighter and that means a whole lot when it comes to dealing with any of life's challenges. You are stronger and braver than you know. Give yourself some credit. You are fighting the good fight and that means more than words can ever say.
What you are doing is totally worthwhile.
Hang in there.
Hector
dennis....i'm glad to see your hanging in there having such a tough time...bad symptoms many times = svr......back in 07 /08 i followed lots of folks treating as i was adjusting my life to be able to treat and also waiting for the fda approval of incivek....i felt so bad for my cyber friends back then that had such bad symptoms.. then i noticed lots of them clearing......its funny i use to box a little and on tx especially while on incivek i felt like i had been sparing with a heavy weight...my head flet like mush...enjoy the spring rain today.. i'm in newburgh building a deck and its a rainy one....its great that you could even stay on tx with that rough start...take it easy!!!!...hospice is the best!!!...billy
I have hit the bottom mentally these last weeks as I now have only 9 weeks left of this torture. I understand how you feel and can only pray that this time it's gonna work for you. You seem to have a lovely family around you and that's important for the motivation. I've got small kids as well and those are the ones that keep me going. I'm not easy to live with these days and my close family are the ones that suffer from my sx's.
I count days and each one I survive I'm just reliefed.
Just wish you all the best and SVR :)
I count days and each one I survive I'm just reliefed.
Just wish you all the best and SVR :)
Mirthless - Wow you are feeling some of my unexplainable pain. I want my Mommy so bad. Interferon is diabolical to the virons and has tremendous impact on our phycies, what's left of them or it. Tough ride, no doubt, for some, maybe most. Thank you for expressing this strange out of this world zone. You are not alone. I don't know if I am chirrotic so I probably am not but carrying around this virus for decades - who knows. Your input is important. Thank you for your slant.
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