John's Story

John's Story Here is my story. I hope that some of this can be helpful…. How, what, why, where, when I contracted Hepatitis C, I have no idea, it is not important. Some stats: diagnosed in 2005, viral load 15 million per whatever (high), liver damage 3 out of 4 (4 being full blown cirrhosis), cirrhosis onset definitely present. I weighed in at 224 lbs (yes! Fat boy jeans required, not optional! Talk about sag…). 4 weeks into the treatment the virus was undetectable and remains so to this day. I am a 50 year old male and have another 5 weeks of treatment (out of 48) left. I haven’t felt this good or this aware since my 20’s. Has it been a breeze? No way. Has it been manageable? Absolutely. Would I do it again? I’d much rather not, thank you. Making yourself ill in order to treat a disease where you don’t feel sick does not always make emotional sense. (A quick aside--dealing with the medical and insurance structure is a nightmare, and I have good coverage. The structure is wrong on so many levels that it defies comprehension. It is truly geared towards getting people to give up. Anybody reading this, don’t buy into their BS, keep at it). 1^st reaction after diagnosis? Denial. This is crap, I feel ok, I’ll deal later. A few good friends of mine (plus my physician’s assistant—not my doctor, my PA!!) set me straight on the disease and the consequences of non treatment. They were ugly, to say the least. Transplants, full blown cirrhosis, cancer, all that fun stuff. I figure that my liver had already used about 8.5 of the mythical 9 lives, so, somewhere, somehow, I decided to start the treatment process. Next up was fear and depression. Reading some of the “support” materials provided by the drug companies was enough to make one want to do a Granddad-in-the-barn swing act with a rope. There is talk of nausea, constant severe flu-like symptoms, potential serious depression (why not, right?), fever, suicidal urges, you name it. Sounds like a real party, should be a blast. There is also advice on how to tell the family, just to add icing to the cake. “By the way, honey, for the next year I’m going to be sick, suicidal, unemployed and we are going to be broke. How does that sound to you?” Should go over really well… By the time I got that first injection of interferon I was very afraid and more than a little worried about the future. The fear and trepidation was obsessive and not funny. Here is the real scoop, and looking back, the best way to describe it is to quote a nurse’s tech that advised me on the injection procedure. She also said the following: “Look, this is not that big a deal. Most people sail through it, you will be fine. Don’t worry about it. We treat professional athletes, pilots, all kinds of folks. You will be fine.”. Despite those words of wisdom, I did the 1^st shot and waited for my world to come crashing down. That was on a Saturday night. Sunday I felt minor chills and muscle aches. Monday I was fine. I repeat—Monday, I was fine… Talk about a last minute reprieve from the gallows. All that fear and anxiety was for nothing. It’s amazing how we human beings have the talent to project the worst possible outcome upon ourselves and absolutely decide that that is the way it is going to be. “I’m going to suffer and no one is going to stop me…” The real deal is as follows (as told to me by my specialist, a very good guy): “One out of ten will have absolutely no symptoms. One out of ten will have severe side effects that may necessitate halting the treatment. 8 out of ten will have varying degrees of side effects.” Despite my preconceived notions of being special I fell somewhere in the middle. My reaction was mild to average. Not terrible, but definitely there. I felt like I had a minor flu after the injection. My routine was to administer the interferon on Saturday night. Sunday evening was pretty much TV time. That is when the mild temperature and muscle aches peaked. 9 weeks out of 10 I was fine by Monday. If not a couple of aspirins fixed the problem. The most serious effect that I experienced was periodic fatigue. I definitely added an hour or 2 to my sleep patterns. It makes sense as the body works hard to rid itself of the virus. Just to put things in perspective, I have not missed any of my normal activities all year. I’ve skied at least one weekend out of 2 and worked the whole time. I exercise 6 days a week (started doing that before the treatment). Either I am truly fortunate or I lucked into a correct mindset to deal with this thing. The truth is probably a combination of the 2. Believe me, I have an enormous amount of gratitude for the way this has worked out. I am also very humble because, at the basis of this all, I had zero control over how any of this was going to go. Talk about powerless. I am very fortunate indeed. The start of this was the decision—am I going to deal with this or not? That decision being made, it is a question of putting it together. Perseverance is key. “Just do it” applies here. Also, a treatment regimen of 24 to 48 weeks does get old, but that, in my opinion, is purely mental instead of physical. I have absolutely no regrets about starting treatment. The bottom line is that the virus, for today, is gone and all forward progression of the liver disease has been stopped. The alternatives truly are not good. Can you imagine the “what if” that I would have experienced had I not started treatment and the condition of my liver progressed to a point where seriously ugly intervention would have been required? Talk about regret… Worth mentioning are the side benefits of healthy living, awareness of body, all that stuff. Being ill, whether I felt sick or not, made me conscious of the need to take care of myself. You at least become aware if you don’t. I have a supplement regimen, exercise routines and sane eating habits that will continue well after treatment. By the way, the fat boy jeans are gone. I weigh in today at 181 lbs and feel profoundly good. Seriously, though, if you want perspective and need to separate what is important from what is not, this will do it. Thank you for letting me share a little bit of my experience. Again, this permits me to give back some of what I have received. Hopefully someone will find it to be of use… John W. (PS—As of today, March 17^th, 2008, I am over 6 months out of treatment, all is good, the virus is undetectable)

John's Story

Here is my story. I hope that some of this can be helpful….

How, what, why, where, when I contracted Hepatitis C, I have no idea, it is not important.

Some stats: diagnosed in 2005, viral load 15 million per whatever (high), liver damage 3 out of 4 (4 being full blown cirrhosis), cirrhosis onset definitely present. I weighed in at 224 lbs (yes! Fat boy jeans required, not optional! Talk about sag…). 4 weeks into the treatment the virus was undetectable and remains so to this day. I am a 50 year old male and have another 5 weeks of treatment (out of 48) left. I haven’t felt this good or this aware since my 20’s.

Has it been a breeze? No way. Has it been manageable? Absolutely. Would I do it again? I’d much rather not, thank you. Making yourself ill in order to treat a disease where you don’t feel sick does not always make emotional sense. (A quick aside--dealing with the medical and insurance structure is a nightmare, and I have good coverage. The structure is wrong on so many levels that it defies comprehension. It is truly geared towards getting people to give up. Anybody reading this, don’t buy into their BS, keep at it).

1^st reaction after diagnosis? Denial. This is crap, I feel ok, I’ll deal later. A few good friends of mine (plus my physician’s assistant—not my doctor, my PA!!) set me straight on the disease and the consequences of non treatment. They were ugly, to say the least. Transplants, full blown cirrhosis, cancer, all that fun stuff. I figure that my liver had already used about 8.5 of the mythical 9 lives, so, somewhere, somehow, I decided to start the treatment process.

Next up was fear and depression. Reading some of the “support” materials provided by the drug companies was enough to make one want to do a Granddad-in-the-barn swing act with a rope. There is talk of nausea, constant severe flu-like symptoms, potential serious depression (why not, right?), fever, suicidal urges, you name it. Sounds like a real party, should be a blast. There is also advice on how to tell the family, just to add icing to the cake. “By the way, honey, for the next year I’m going to be sick, suicidal, unemployed and we are going to be broke. How does that sound to you?” Should go over really well…

By the time I got that first injection of interferon I was very afraid and more than a little worried about the future. The fear and trepidation was obsessive and not funny.

Here is the real scoop, and looking back, the best way to describe it is to quote a nurse’s tech that advised me on the injection procedure. She also said the following: “Look, this is not that big a deal. Most people sail through it, you will be fine. Don’t worry about it. We treat professional athletes, pilots, all kinds of folks. You will be fine.”.

Despite those words of wisdom, I did the 1^st shot and waited for my world to come crashing down. That was on a Saturday night. Sunday I felt minor chills and muscle aches. Monday I was fine. I repeat—Monday, I was fine…

Talk about a last minute reprieve from the gallows. All that fear and anxiety was for nothing. It’s amazing how we human beings have the talent to project the worst possible outcome upon ourselves and absolutely decide that that is the way it is going to be. “I’m going to suffer and no one is going to stop me…”

The real deal is as follows (as told to me by my specialist, a very good guy): “One out of ten will have absolutely no symptoms. One out of ten will have severe side effects that may necessitate halting the treatment. 8 out of ten will have varying degrees of side effects.”

Despite my preconceived notions of being special I fell somewhere in the middle. My reaction was mild to average. Not terrible, but definitely there. I felt like I had a minor flu after the injection. My routine was to administer the interferon on Saturday night. Sunday evening was pretty much TV time. That is when the mild temperature and muscle aches peaked. 9 weeks out of 10 I was fine by Monday. If not a couple of aspirins fixed the problem.

The most serious effect that I experienced was periodic fatigue. I definitely added an hour or 2 to my sleep patterns. It makes sense as the body works hard to rid itself of the virus.

Just to put things in perspective, I have not missed any of my normal activities all year. I’ve skied at least one weekend out of 2 and worked the whole time. I exercise 6 days a week (started doing that before the treatment). Either I am truly fortunate or I lucked into a correct mindset to deal with this thing. The truth is probably a combination of the 2. Believe me, I have an enormous amount of gratitude for the way this has worked out. I am also very humble because, at the basis of this all, I had zero control over how any of this was going to go. Talk about powerless. I am very fortunate indeed.

The start of this was the decision—am I going to deal with this or not? That decision being made, it is a question of putting it together. Perseverance is key. “Just do it” applies here. Also, a treatment regimen of 24 to 48 weeks does get old, but that, in my opinion, is purely mental instead of physical.

I have absolutely no regrets about starting treatment. The bottom line is that the virus, for today, is gone and all forward progression of the liver disease has been stopped. The alternatives truly are not good.

Can you imagine the “what if” that I would have experienced had I not started treatment and the condition of my liver progressed to a point where seriously ugly intervention would have been required? Talk about regret…

Worth mentioning are the side benefits of healthy living, awareness of body, all that stuff. Being ill, whether I felt sick or not, made me conscious of the need to take care of myself. You at least become aware if you don’t. I have a supplement regimen, exercise routines and sane eating habits that will continue well after treatment.

By the way, the fat boy jeans are gone. I weigh in today at 181 lbs and feel profoundly good.

Seriously, though, if you want perspective and need to separate what is important from what is not, this will do it.

Thank you for letting me share a little bit of my experience. Again, this permits me to give back some of what I have received. Hopefully someone will find it to be of use…

John W.

(PS—As of today, March 17^th, 2008, I am over 6 months out of treatment, all is good, the virus is undetectable)