Saturday, March 20, 2010

My Personal Hepatitis C Story

I live in South Florida between Miami and Ft. Lauderdale. Had been going to a primary care doctor and having annual physicals with all the blood work. It got so I was waiting 2 hours to see my primary care physician when my mom told me she had found a doctor she liked so I said why not and went to see him. He did my annual physical and when I went back for the results of the blood work he said “your liver enzymes are elevated and you have hepatitis c”. I guess if I had not changed primary care physicians I would have not found out until my liver failed! He referred me to a gastro and sent me home.
I went on the internet and started searching for what was hepatitis c and found all these horror stories of the treatment and the effects of the disease. I called my mom and my husband and said “I’m dying!”. My good old mom called the doctor’s office and screamed at him and said how could you send her home with no information?
The gastroenterologist I had been referred to could not see me for over a month and I was not waiting, I wanted answers now. I found another gastro and made an appointment. When I went into see her she stared with conversation like “the statistics are 50/50, you cannot eat shellfish and now you must go down and get a liver biopsy”. I left there in shock.
I had not cancelled my appointment with the gastro I was referred to and went to see him. What a difference in that appointment from the first gastro I went to see. He explained to me the treatment and said he was doing a study and he could provide my meds for free but that I would have to agree to let him follow me for 5 years. He said I needed a liver biopsy to see where my liver was and some blood tests to see my viral load and how my liver was functioning at this point. I said oh no, I’m not letting you do a liver biopsy. Well, he walked out of the room and said well I won’t treat you. I went running down the hall after him going wait wait LOL
I did all the tests and had the liver biopsy. I’m phobic with needles and blood and made myself a wreck before that liver biopsy. That was the worst part of my liver biopsy, me making myself a wreck. They gave me something before hand to settle my nerves and I did get a punch in the shoulder feeling but besides the fact that I had to lay on my side for hours in boredom it was a pretty uneventful procedure.
The result of those tests was that my liver was grade 3/stage 2 - half way to cirrhosis. Blood work revealed that I was genotype 1A, alt and ast was in the high 50s and my viral load was 1 million. I decided I was going to try and kill this virus if I could; figured if I could not take the treatment I would stop but I was going to at least try.
My doctor’s study nurse brought me to the office and showed me how to mix up the pegalated interferon alpha 2B, it came in 2 bottles with 2 syringes. She demonstrated on an orange and handed me a video and a card with the steps. I also was to take 5 ribavarin daily. That was that.
I got home, wiped off the counter with alcohol and couldn’t get the cap off the syringe, jabbed it into my thumb and was bleeding all over the place before I even started. I found a forum I had been going into for support and went online and they talked me through the process. Don’t know what I would have done without those people!
After the shot I took some alleve and went to bed. The next day I had a slight fever and felt pretty wiped out and just slept most of the day.
I did complete all 48 weeks of shots and continued working except the last 6 weeks where I had to take a leave because I became very anemic. First 6 months was not so bad as I did my shot late Friday night and was off the weekends so I rested. After the first 6 months my blood counts just plummeted. The doctor did start me on procrit to raise my counts but it did not do much I was so far gone and almost done with the 48 weeks. Towards the end of treatment I did not do much except lay on the couch. I did clear the virus at 12 weeks.
I was diagnosed the end of 2001 and started treatment in early 2002 and finished Friday, December 13th, 2002….I have been clear ever since.
Treatment was not a walk in the park, it was hard not just for me but for my whole family. I was depressed, lost a lot of my hair and was miserable most of the time, but it was doable. I kept telling myself that it was not forever, it was just a year…I told myself this over and over again LOL
I ran a Delphi support forum for about 5 years but have since stopped that. Figured I had given back what I had gotten and wanted to move on and start living again. I also participated actively in the March on DC for about 4 years, which was a wonderful event and great to meet others going through the same thing. I have organized several Hep C Festivals here in South Florida and in the middle of Florida.
I continue to support others one on one or by email. I also spread the word by telling people I have this disease and that everybody should be tested. I had no clue about this disease when I was diagnosed, knowledge is power. The best part of helping a newly diagnosed person is letting them know that it is ok, nothing to be ashamed of and they will be shocked to know how many actually have this disease…if they just ask or mention they have it. More die with HCV than of it.

2 comments:

  1. There is that light at the end of the toughest and the most darkest tunnel. Sometimes when you feel like giving up and others give up on you, you should never go in that direction. You yourself is your one cure.

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