Sunday, May 9, 2010

You need to be your own advocate ......Jean Poe

I started my hep c journey one year ago next week. I wasn't feeling well one afternoon and lay down for a nap. I woke up and ran for the bathroom vomiting blood all the way. Nearly passed out then. We live only 6 blocks from a small local hospital but I was so weak I couldn't get up so my husband called for an ambulance. The EMTs immediately scheduled a life flight to Spokane which has large medical centers. I spent 3 days there but only remember the last one when I was discharged. I was diagnosed with bleeding ulcers and they also found hep c. I had been a drinker ever since my 20s and I am 60 now. I had no insurance so when I got home and got to feeling better--and that was several months later--I started the process to get on Medicaid. Bills were piling up--$15,000 for life flight, $45,000 for the big hospital and another $13,000 for the smaller hospital just to list a few.

Medicaid required me to go to a specialist for the hep c and the best I found was a 100 mile round trip from my home. He is an excellent Doc and has been through treatment 3 times for hep c. He really knows what the treatment is about. My biopsy results showed cirrhosis and grade 3 inflammation which isn't too good but I was ready to start and go for it. Not so fast--the biopsy also showed a hereditary disorder called Hemochromatosis. This causes the liver to hold on to too much iron and mine was sky high. The Doc wanted to maximize my chances for success on treatment so decided to get the iron down first because it interferes with the treatment meds. That involved weekly phlebotomies for almost 4 months. The procedure is like donating blood, only they dispose of it instead of using it. So finally my iron came down and I was able to start treatment on Peg-interferon/Ribavirin. It has been 4 weeks now and I am one of the lucky ones that have hardly any side effects. I will have to do this for 48 weeks but I am willing to do whatever it takes to get rid of the virus and give my liver a break--this will give me many more years I hope! I have never been able to pin down how or when I got the virus but that part really isn't important. The important part is getting the word out about this virus and how serious it is. Most people don't even know they have it and routine blood tests for it are not done. You need to be your own advocate and demand a test. There are so many ways to get it--of course the stereotype is IV drug use--but any medical or dental procedure done before 1992 is suspect because they did not test blood then as they do now. Body piercings and tattoos are another big one, along with our vets that received vaccinations with the injection 'guns'.

Having hep c has changed my life. Now I want to help other people get through the treatment as much as I am able. I also take any opportunity to talk about it with people and some just don't want to know. Most will 'indulge' me.
That's my story so far and it isn't over yet--my first check to see if I am responding to treatment is coming up so that is a big day for me.

Thanks for letting me tell this story--it's one of many, many, many!!

Jean Poe

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