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Don's Story

Don Lyons

Well, I have been on this site a few years and never did the member story. I guess it is time.

My name is Don Lyons. I will be 48 years old September 2002. Born in NY, lived in LA, been in Oregon for 30 years. You are most likely to find me in tie dye.

I was diagnosed with HEP C in 1991. Participated in the trials of Intron A.
Had my first biopsy done around 1991. They found significant cirrhosis. I made them give me a time frame. They said I had five to ten years. I decided to live my life as though I did not have HCV and did not know how long I had. I figured that would be the most normal for my family.

I have been through TX five or six times. From daily doses (by far the worst) to combo and the last two and a half years or so on Infergen and Peg maintenance. I have taken 100s and 100s of shots. I have managed to work through all of this. My job is one thing I refuse to give up to the HCV. Not that I like my job, I just don't like giving up.

I have had my ups and downs from wanting to end it all (combo is very depressing) to being glad to still be here 11 years later. The Doc's were wrong, last biopsy in 1999 showed no progression of the cirrhosis.
All that nasty Interferon I have put in my body has at least allowed me to
see my first grand child born and my youngest start college. I no longer live with long term plans. Just glad for every birthday.

I am pretty active, although always tired. Active is a relative word. I finally gave in a little to the HCV and bought a sports car. I don't have the energy for any of my old hobbies like white water rafting. Or it could just be a mid life crisis thing. Driving with the top down makes me feel soooo good, it does not matter how bad things are. Anyway, I figure I am going to go down fighting every inch. I do consider myself lucky, there are many who are much worse off than I. In the end, if I get to where I am bed ridden and there is no hope. Oregon has legal suicide. I always have that ace in my pocket and can if I want, choose my end. That believe it or not is comforting to me.

In December 2002, I am considering starting my seventh TX if you count the maintenance. I should still have ten more years of fight left in me. If I
can do it twice, that is a normal life span. I couldn't ask for more than
that.

So bring on the dragon, for I am a slayer and I shall not be taken
quietly!

Email Me!!

UPDATE!!

4-12-04 Update. I did try Pegysis Ribaviran combo in January 2003. I could only take it for two months. I guess all the treatment finally wore me down some. I experienced my most severe side effects to date. Since it only had a very small chance of success, I decided to stop. I have been free of all medication since then.

My last two liver function tests have been normal. It looks like the dragon ( HCV) and my body have a truce going on. I am just enjoying living as normal a life as I can with cirrhosis and HCV. Life is good. I will go back on maintenance Interferon if my LFTs get too high. I will also try the next new treatment that comes along if it shows promise.

I still don't plan on going quietly!

 

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    Page last updated: April 21, 2004


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