Friday, March 26, 2010

A Story of Courage - David's Story

I really don’t know where to start here. Some of my journey has been a nightmare and other parts have been a blessing.

I guess I’ll start with my diagnosis of hepatitis c. Life history? I don’t think really matters so much except for the fact that I didn’t know disease’s such as aids or hepatitis existed. We’re young and do things. I lived with an out of the way crowd and I expect this is how I contracted hepatitis c. See, we were sitting around a table one night, drinking and decided we were going to tattoo each other, which we did. You have to realize, I’m now a 55 year old male and at the time I think I was maybe early 20’s First tattoo at 16. Anyway, 30 some years later…..I always worked hard to provide for my family and found myself getting seriously tired all the time, didn’t feel like eating and my concentration levels were wavering. Well, I had been throwing up in the mornings before work for months. Went to work, did my job, and things kept getting worse. Forgetting things, falling asleep at work at my desk (I never did that in my life). It got to the point where I couldn’t handle the throwing up every day. I was getting bloated, my stomach kept swelling. I would drive home on the highway for a distance of maybe 30 miles and started getting lost. A trip I’d done a million times. Something just wasn’t right. I think the big one for me was talking to my son one night in and I honestly couldn’t remember his name and I was jaundiced. My son and I talked all the time. How could I forget his name? Off to the doctors. I was sent for an endoscopy for the throwing up issue at first, (well I think my doc had other things on her mind also). After my procedure Mr. Doc comes out stating..”David” you’re a very sick boy…diagnosis..severe pylori infection and hepatitis c. I know enough about anatomy that I can say I was having liver pain but thought it was from beer…NOT…Gastroenterologist sent me to a hepatologist at the Cleveland Clinic where they did a multitude of tests. Long story short. My results came back with active hepatitis c and with the upper quadrant pain I was having they wanted to evict my gallbladder. I said do it and they did. At the same time they did a wedge biopsy of my liver which I’m glad for as it takes a bigger sample of the liver for Mr. Pathologist to look at. My results came back with genotype 1b with advanced cirrhosis and I need to start treatment as soon as possible. GREAT…..I seriously educated myself in a hurry about hepatitis c and the treatments. Oh Joy…Funny thing about all this is that I never got mad or really scared..Just..Let’s fix it. I also had cryoglobulinemia with my diagnosis which explained a lot about why my hands were freezing up outside in cooler weather an going back to normal when they warmed. God, this has been a while and I’m forgetting so much.

Starting Treatment:
Sticking needles in my stomach??? Okay, I did it and got used to it, I guess? First two months I had to have blood drawn every week because of the state my liver was in. Funny, Doctor told me to keep something close by me to drink all the time so I elected to drink pop…big, big mistake. It would have been nice if he had told me water. Anyway, I got sick…ended up with wooly cottonballs for my eyes…anemic . Depression? WOW……I’ve never had an issue with this in my life. Two months into treatment I was balling my eyes out barbecuing and I love to barbecue. Sleep? Forget it. It wasn’t happening. I was up for so many days and nights I was honestly hallucinating. My wife at the time told me I was having a conversation with my kid brother in the living room. She asked who I was talking to and I told her to go….herself. I don’t talk like that. Thing was, my brother I was conversing with in front of my face lives over 1000 miles away. Back to the doctors I go. There comes a time when you just have to realize you need help, no matter how stubborn you are. Had to see psychiatrist and gave me meds for depression..celexa, which I must say worked very well for me. I could cook again..yipppeee….my next issue was the sleeping. The doctors always said I was kind of a unique patient because they tried so many things on me that just didn’t work and were strong enough to knock out a horse. They tried everything, believe me. Toward the end I ended up taking 20mgs of ambien combined with 600mgs of neurontin just to get to sleep. That’s a lot of meds. Needless to say my life was, well I was, a walking or sitting zombie.

At this point I need to mention and feel this was a life saver for me. Doing my research on this disease, I came across support forums for people like myself so looked into it. I was an outdoor guy, knew nothing about computers let alone type? Got to be kidding me. My wife at the time was actually a good support system in the beginning and typed for me when I went into chat rooms at Janis and Friends. I am going to say this. If it wasn’t for Janis and Friends Hepatitis C support forum I would likely be taking a dirt nap now. Not a plug but a fact. God, this could be a long story.

Okay, I’m sleeping now, depression’s under control, now I become anemic. I dropped from a hemoglobin level of 17+ to below 10 in real short order. PROCRIT…another weekly injection. No big deal really because it kept me where I needed to be. Pegasys in my tummy and procrit in my thigh, for 44 weeks.

I know I’m leaving a lot out of this story as I have just forgotten. I used to have a journal but it left home. The whole emotional aspects of this disease and what it’s done to me personally? Hard for me (treatment story isn’t over yet) to really say. In a lot of ways I’m glad I got sick as it woke me up, changed me. Gave me the desire to help people, love and care. I wish I could convey to people what this has really done to me and for me. I use to care just about Dave. Now Dave doesn’t care about him but about the people he can help. Funny story here and I might as well share as I seem to be on a mission?. God, my Grandmother was from and always use to tell me (with my hand in hers) David…some day you’ll be of help to people and find who you are. I never believed this but find that I now want nothing more than to help people. Did having hepatitis c change me? OH YES!!!

I devote my time to helping people when I can. Cleveland Clinic had me do a television interview about hepatitis c hosted by Regis Philbins wife Joy. I’ve talked at schools yet I will never be able to do enough and now find I just don’t have the energy or funds to do so.

Back to my treatment journey…Half way through treatment my throat started acting up. I got hoarse and was at first diagnosed with oral thrush. Fixed that and it came back. Still was talking like a mafia dude after that was cured. Okay Dave, you have a cold. Six months into this nonsense they diagnosed me with cancer in my larynx. Fun never ends. Had surgery for this and never missed one shot of my interferon treatment. Someone had to be watching over me. I had also acquired hypothyroidism during this escapade. 56 weeks of interferon, diagnosed with genotype 1b with advanced cirrhosis I’m still alive and doing quite well. Yes, I have issues with ascities, other things, but…I do not have hepatitis c:-)

Another short story…Dang, I could go on all night. I had a gastro once that asked me to teach him about hepatitis c. He is now the head of diabetes for the clinic. He didn’t know enough about hep c? Please educate yourself about this disease and teach others. Doesn’t matter who they or you are. You can never stop learning.

How am I today???? I’m going to be truly honest here. I no longer have hepatits c but I didn’t listen to my body. Well, I guess I did and was just too naive or stubborn to deal with it. I now deal with issues like, insomnia ,have dealt with cancer again ..I live in chronic pain and there are a lot of nights I wish I could just go to sleep and never wake up again. Thing is…what I deal with now has nothing to do with my having hepatitis c, (well the emotional caring part does), or the treatment I took to rid myself of hepatitis c. I get comfort out of doing research about hepatitis and helping those that are so lost coming into this. I feel so bad and wish in my heart I could take everyone’s pain away.

I could add so much more to this but it’s already getting lengthy. More than welcome to email me at stepfinder@hotmail.com

David

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