Tuesday, April 13, 2010

Brenda - Her Own Patient Advocate - Congrats!!!!!!!!

My finding out I had HCV took place in the summer of 2008. I had labs done prior to hernia repair surgery and when hospital called to tell me, I received a referral to Gastro Dr. for "tummy problems". When I asked what sort of "tummy problems" the nurse said you have Hepatitis C. Want to talk about being floored? Okay. So went to see this Gastro Doc and right away did not much care for the bedside manner, yet being a charity care patient, I pretty much had to go with the flow. He wasn't going to do a biopsy until after TX, but got it done before TX and it showed I was fairly damaged...just this side of cirrhosis which meant that I had it for about 30+ years which would be about the time I had blood transfusions for major surgery. Then, had 3 rogam shots, one after each childbirth, and it to is blood product. However, how I got it doesn't matter, having it did. So anyway...for all the labs I had done in all the years in between, no one caught it...until now, and at age 58 was about to embark on the worst roller coaster ride of my life, even though at the time I thought it would be a snap.

I began TX Nov 14th 2008 with 180ml a week of Interferon Alpha 2a and daily doses of 1200mg Ribavirin. My body reacted immediately with viral load undetected by time I had PCR Quant done at 12 weeks. Also by the time I hit 12 weeks, was anemic, bumping into walls, consistent headache and indigestion, etc. I asked Gastro Doc for Procrit but wouldn't give it..cutting my dose down to 600mg a day instead...wellllll, I was not in the mood to play iffy games and knew enough about the virus to know the deletion of it lays in the TX, so unknown to Gastro Doc, I went down only 200mg and continued taking 800mg a day. ***Heads up people..don't follow my lead in stubbornness!!!! During this time I was not seeing Gastro Doc, he preferring to give orders through office staff via telephone. By the time the New Year hit I begged, pleaded and threatened to get the Procrit, and began to go to hospital oncology weekly for the shot. My RBC finally hit 10 and Gastro Doc decided no more Procrit. With next monthly lab I get a call to stop TX, and considering the shape I was in, I did. I called Gastro Doc's office and demanded to be seen which I was nearly a week later. Told Gastro Doc that I am stepping in as peer in my Health Care Team and this is what I want...a complete CBC to determine if I can go back on TX...a standing order for Procrit through out balance of TX on as needed basis. I hoped and hollered and was surprised when he went with it instead of against it. Had my CBC and began TX again missing only a couple of weeks. My numbers plummeted again and began weekly Procrit TX and barely hung on numbers wise. I was pulled off TX a couple weeks early, down to 600mg of Ribavirin a day, and Procrit no longer was working for me. It has taken as much work to get back to as normal as possible as it did to get through TX, but for me, I did the right thing. Five days ago I turned 60, and knowing how my body reacted badly to the meds, I would not be able to go through it again. Achieving SVR is my miracle. What really stands out to me though is not only the many that are battling Hep C, but those walking around without knowledge they are infected. The only way to truly overcome this horrible virus is to shout it out loud and clear. Encourage your friends and family to get tested and be vaccinated for Hep A and Hep B, and have them encourage their friends and families. Oh yeah...that Gastro Doc? Told me he wouldn't be the one to retreat me if I came out of remission lol. You HAVE to be your own best advocate and knowledge IS your weapon in the fight against Hepatitis.