The Light At The End Of The Tunnel
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The light at the end of the tunnel is a sign of an oncoming train. That’s supposed to be a joke but on Tx you can never tell. I do feel confident, less stressed, less mad and looking forward to a successful and fruitful life after treatment ends.
The reduction in the ribavirin is largely responsible for this.
However, having reduced the ribavirin I am able to separate out the effects of the combo. Combination therapy is called that because it is a combination of two drugs which work together to produce the desired effect. In this case it is interferon and ribavirin.
Interferon on its own is ineffective (10% success rate, I think)
Ribavirin on its own is useless and won`t be of any help.
In combination however the rate of success rises dramatically to 65+% in Geno 1 and 80+% in Geno 2 and 3.
I blamed everything on the ribavirin because it is so powerful a rush. Within 20 minutes my heart rate rises dramatically while a small cosh is applied to the back of my head.
Let me tell you how powerful it is. Before my reduction on riba my resting heart rate was 86. One little pink pill, 200mg less, and it is down to 72. Before tx it was 65 – 70.
So ribavirin does tend to get the blame for everything but the interferon is a real body ravager.
After 38 weeks of injecting that stuff I feel my body getting tired and worn out. I`m aware that I could get infections very easily and now that winter is approaching I find myself being more cautious. If you read my post “Louis Pasteur never shook hands”, http://paulwilcox.blogspot.com/2005/02/louis-pasteur-never-shook-hands.html I outline the dangers of infection. I have in fact trained myself never to shake hands and avoid rubbing my face and eyes and picking my nose. Of course, I never picked my nose anyway, having been brought up in the North of England where gentility is instilled at birth.
Interferon is subtle. You don`t think it is doing much but it is responsible for all the aches and pains, flu like symptoms and all the malaise that goes with that. Most powerful of all is the effect it has on your bloods and the ability to carry oxygen around the body. A flight of stairs can leave you totally whacked and panting painfully for breath. 5 minutes later you are back to normal.
You adjust of course and live life at a slower pace. I have seen 80 year olds fitter than me as I am at the moment.
But I am only 50 and when this is all over I will feel a very healthy 50.
Not straight away though. I was reading the blog of a friend who has just finished 48 weeks of treatment. Finishing treatment is in itself an achievement but he has also been tremendously active in helping others through treatment and promoting awareness.
I notice he wrote this on his blog recently:
“Today I am realising I must have had some notion in the back of my mind that once I stopped taking the medications I would feel better quickly, perhaps even instantly. I say that because my head knows this won’t be the case, but I do feel distinctly disappointed to feel much the same 48 hours later without medication as I did before”.
http://www.ronmetcalfe.com/blog/ Wednseday 12 October.
I have this same notion. And it is dangerous. All evidence to the contrary I somehow believe I will be different from everybody else and will instantly recover and be 21 years old again. Well, I will never be 21 again. So thinking like that can only lead to disillusion. It is the same thinking I had pre treatment. While preparing for the worst I secretly thought I would be one of the ones who had an easy time and would breeze through treatment. Needless to say I was totally wrong. We seem to live most of our lives in some sort of self delusion other. It keeps us going. Some people like to call it being hopeful. But what basis is there for this hope? Why should life go easier for me than anyone else.
Its interesting. When I was kid I looked upon my grandparents as fusspots because they were always saying be careful and warning you of danger. They saw the world as a place full of hidden dangers and pitfalls. To me as a child I saw it as a safe place full of fun. This led me to playing on the sea cliffs near my home and nearly falling hundreds of feet to certain death on a number of occasions.
My body has been put under stress and will need to recover. Those extra heartbeats, 840 an hour, 20,000 a day have taken a toll. Whilst living as a geriatric my body has been working overtime.
Light at the end of the tunnel? Yes, but still a way to go yet.
The light at the end of the tunnel is a sign of an oncoming train. That’s supposed to be a joke but on Tx you can never tell. I do feel confident, less stressed, less mad and looking forward to a successful and fruitful life after treatment ends.
The reduction in the ribavirin is largely responsible for this.
However, having reduced the ribavirin I am able to separate out the effects of the combo. Combination therapy is called that because it is a combination of two drugs which work together to produce the desired effect. In this case it is interferon and ribavirin.
Interferon on its own is ineffective (10% success rate, I think)
Ribavirin on its own is useless and won`t be of any help.
In combination however the rate of success rises dramatically to 65+% in Geno 1 and 80+% in Geno 2 and 3.
I blamed everything on the ribavirin because it is so powerful a rush. Within 20 minutes my heart rate rises dramatically while a small cosh is applied to the back of my head.
Let me tell you how powerful it is. Before my reduction on riba my resting heart rate was 86. One little pink pill, 200mg less, and it is down to 72. Before tx it was 65 – 70.
So ribavirin does tend to get the blame for everything but the interferon is a real body ravager.
After 38 weeks of injecting that stuff I feel my body getting tired and worn out. I`m aware that I could get infections very easily and now that winter is approaching I find myself being more cautious. If you read my post “Louis Pasteur never shook hands”, http://paulwilcox.blogspot.com/2005/02/louis-pasteur-never-shook-hands.html I outline the dangers of infection. I have in fact trained myself never to shake hands and avoid rubbing my face and eyes and picking my nose. Of course, I never picked my nose anyway, having been brought up in the North of England where gentility is instilled at birth.
Interferon is subtle. You don`t think it is doing much but it is responsible for all the aches and pains, flu like symptoms and all the malaise that goes with that. Most powerful of all is the effect it has on your bloods and the ability to carry oxygen around the body. A flight of stairs can leave you totally whacked and panting painfully for breath. 5 minutes later you are back to normal.
You adjust of course and live life at a slower pace. I have seen 80 year olds fitter than me as I am at the moment.
But I am only 50 and when this is all over I will feel a very healthy 50.
Not straight away though. I was reading the blog of a friend who has just finished 48 weeks of treatment. Finishing treatment is in itself an achievement but he has also been tremendously active in helping others through treatment and promoting awareness.
I notice he wrote this on his blog recently:
“Today I am realising I must have had some notion in the back of my mind that once I stopped taking the medications I would feel better quickly, perhaps even instantly. I say that because my head knows this won’t be the case, but I do feel distinctly disappointed to feel much the same 48 hours later without medication as I did before”.
http://www.ronmetcalfe.com/blog/ Wednseday 12 October.
I have this same notion. And it is dangerous. All evidence to the contrary I somehow believe I will be different from everybody else and will instantly recover and be 21 years old again. Well, I will never be 21 again. So thinking like that can only lead to disillusion. It is the same thinking I had pre treatment. While preparing for the worst I secretly thought I would be one of the ones who had an easy time and would breeze through treatment. Needless to say I was totally wrong. We seem to live most of our lives in some sort of self delusion other. It keeps us going. Some people like to call it being hopeful. But what basis is there for this hope? Why should life go easier for me than anyone else.
Its interesting. When I was kid I looked upon my grandparents as fusspots because they were always saying be careful and warning you of danger. They saw the world as a place full of hidden dangers and pitfalls. To me as a child I saw it as a safe place full of fun. This led me to playing on the sea cliffs near my home and nearly falling hundreds of feet to certain death on a number of occasions.
My body has been put under stress and will need to recover. Those extra heartbeats, 840 an hour, 20,000 a day have taken a toll. Whilst living as a geriatric my body has been working overtime.
Light at the end of the tunnel? Yes, but still a way to go yet.
posted by Paul | 8:45 AM
5 Comments:
John couldn`t post this commnent so he asked me to. To post comments you have to create a blogger account. This takes 5 minutes and gives you an account and password to sign in.
John said,
"Paul I just finished a forty eight week go around with the combo beast with two faces at the end (21) September and your blog has caused me to think more on what has gone off since then. I have read Rons post treatment
blog and found the same thing re. expectation of some sort of feeling better immediately.
My previous treatments should have shown me otherwise but the
mind does not remember pain very well and some kind of denial is merciful or we would relive it forever.
It was good to finish and forget the paraphernalia and routine of poisoning myself but somehow a guilt about being ill came flooding back and I tried to do well, and feel well, by act
of will. It didn't work and only caused me to notice how tired and battered my body and mind were by the treatment. Over the past three weeks there has been good news of negative PCR and improvement of Hb which is allowing me to breathe again. This serves to get me to try more and realise how wasted
my muscles are. It is easy to give up at that point and it is equally easy to do too much. I have been caught by the old metal tasting, sense of smell distorting, mood altering waves of fatigue which leave nothing but a sit down collapse or a stretch out collapse as options. I had hoped to leave
fatigue, at that level, in the past. Not yet it seems. I am also
unprepared in a lot of ways to get on with my life and get back to work if I can. That springs from false starts in the history of my disease where the enthusiasm to leave illness behind left me absolutely collapsed and then
suffering the subsequent depression of failing to get well. Not my fault I am ill, but it is a pride and dignity thing which has been distorted in the politics off ill health and the denial of HCV symptoms and treatment side
effects. I am hopeful and at the same time detached in some ways from my future. This could take a while and there is no point making myself more ill by pushing. It has been suggested that stress somehow allows the virus to grow and multiply. I must consolidate any gain I have made over it by
taking care of myself and remembering others. My mental health is variable and the toasting it has had during treatment will take careful managing. In other words the focus on treatment has given way to the focus on recovery.
The bit that is not talked about."
Thanks for that, John. Great news on clearing the virus. Thanks for hanging around and giving a post treatment picture. I know you have had adrenal burnout in the past (as I have) and understand that feeling of wanting to get on with life but finding it impossible.
What’s worse is the occasional good days when you do feel good and falsely think “That`s it. Its all over”.
I really thought my nurse was being negative when, about 8 weeks into treatment, she said “You won`t feel better straight away, Paul. It’s a long road back to recovery. It generally takes at least six months”. I thought that was a stupid thing to say and that she should be encouraging me, not giving me facts. But she has never been guilty of bulling me.
One of the 12 step slogans is “Easy does it”. Sounds like good advice for Tx.
Paul.
OK John what do you mean it hasn't been talked about, all these months of my whining about treatment recovery were for nothing? I guess you were still in the tunnel and not paying much attention. But yeah to everything that you said. Especially the minimizing all around about Hepatitis and treatment.
I also felt left high and dry after treatment, I wasn't given any clue at all about how to recover or what to expect. I was told to come back in three months for a PCR and then call for results. I continued to see my GP who is relatively clueless, although a nice guy etc. He told me, "you should feel back to normal in 6-8 weeks." This was almost 3 months post when I had not recovered much. So that didn't do it for me.
We do need the post treatment counseling.
Paul thanks for the wonderful post and I thought it was funny and so very true. The thing about the end of the tunnel, well it does come the only thing is that you have to keep changing trains. I'll let you know when I reach my destination.
Luv,
Nadine
Hi Paul,
It may not be immediate, but like Jane, I feel pretty good since ending treatment. This is progressive - am feeling way better now at three months post treatment than I did at one week. I think this is pretty normal. It takes a while for these meds to leave our bodies, plus we've been so psychologically centred on treatment for so long, it's an adjustment to have it not the focal point of our universe.
Not long to go for you now, Paul. Hope it passes quickly.
Sue
Hi Paul
As you know you and I are about at the same stage. I've just read Lu's blog posted a few week after finishing 48 weeks and it lifted my spirits. As did the comments above from other tx winners. I originally wrote 'survivors' but I think winners is better.
We won't be 21 again, no point kidding ourselves about that, but it DOES get better and we will feel more human, and hopefully be wiser once this haul is over. I certainly view my life and priorities quite differently than I did a year ago. I used to think talk about personal growth from tx was crap, but for me I have got a clearer perspective on who I am and what I intend to do with the rest of my life.
Good luck for the next few weeks, it's not that long now.
Maggie
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