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Hepatitis C the journey
WARNING Way too long, sorry Hello, in the Fall of 2007 I was horrified to find out I had HCV My platelets had dropped to 65 when I was sent to a hematologist to find out why. He saw the cherry red angiomas on upper body and the iron stains, cryoglobulinemia on my lowers legs. He tested me for lymphoma, leukemia, Hepatitis. I just knew I didn't have Hepatitis C because I had been tested a couple of times when my enzymes were "slightly" elevated, which was 3 times the suggested range.
Back then I thought it was a death sentence. It can be, however that isn't my story. I treated with a polymerase inhibitor, interferon and ribavirin, I was told that with my history and liver cirrhosis only something strong was going to work. I couldn't "just" try the interferon and ribavirin as that was showing to only be about 40% effective at that time. I "think" I was on 7128 but would have to look. It was the worst 45 weeks of my life; at that time. I continued to work as much as I was able. Despite having a note from the doctor that it would take me 4 to 8 weeks to get used to feeling like I had the worst flu in my life; my supervisor forced me back to work in two weeks. Yeah, not the most compassionate person I have ever met. I was very sick, the worst were the muscle rigors, My muscles would freeze up and cause a kind of tearing twisting pain. I went to the hepatologist, begged for help. His answer was to send me to my primary care. Her response? Why are you doing a trial? Why aren't you taking the Standard of Care? Why should I help you through this hell HE has caused? Hysterical in tears she finally gave me some Vicodin and Flexeril. That was my only pain relief 30 Vicodin 45 weeks.. As time went on, another doctor feeling bad for me put me on Neurontin, it didn't do much it allowed me to sleep at night, I was grateful, undetectable for a short while. I had to stop as my blood work was so bad it appeared to be that of an AIDS patient. 6 weeks later HCV was back. I had a raised red rash all over my body, HCV had returned.
I went from 0 to 4 mil in 6 weeks.I was in agony, thought my ankles were broken. That was Jan 2009. I would have to wait til Nov 2011 to treat with Incivek, Interferon, Riba. I treated with that horrible medications for 24 weeks. I was lucky, my doctor said since I had cirrhosis it might not work. He would only allow 24 weeks as he said, it will work or it won't, I am not going to risk damaging your liver. It was worse than the trial had been. Explosive burning diarrhea several times a day. We all, class of 2012, joked about the "shards of glass" the bottle rockets. We were in agony drawn together by our pain, sadness, frustration as others exclaimed. why are you doing this? Why are you putting yourself through this. People didn't understand we were trying to save our lives. Many of us did just that. As harsh as the treatment was on our bodies minds souls it was even harder on the HCV. and one by one we became undetectable. There was much cheering, dancing with our red shoes on.There is even an undetectable list someplace on here, I believe Ann made it.. We did what ever we had to do to get through the God awful 20 grams of fat, 3 times a day, along with the Incivek, the weekly shots. Along the way we lost some great people. We often said we were standing on the shoulders of the Giants who went before us. We were connected by our pain, misery, love for one another.Without Medhelp and all of my friends I would not have made it through the treatment.
I began this to tell/ask people to please treat. Monday 5/28 our best friend died of Hepatitis C. He tried to treat with SOC Interferon and Riba about 8 years ago. After 6 months of hell, he stopped. I know this is too long and if you got to the end, thank you for your time. We are mourning the loss of a friend, brother, Dad, Grandad, Uncle, Nephew, best friend.
Back then I thought it was a death sentence. It can be, however that isn't my story. I treated with a polymerase inhibitor, interferon and ribavirin, I was told that with my history and liver cirrhosis only something strong was going to work. I couldn't "just" try the interferon and ribavirin as that was showing to only be about 40% effective at that time. I "think" I was on 7128 but would have to look. It was the worst 45 weeks of my life; at that time. I continued to work as much as I was able. Despite having a note from the doctor that it would take me 4 to 8 weeks to get used to feeling like I had the worst flu in my life; my supervisor forced me back to work in two weeks. Yeah, not the most compassionate person I have ever met. I was very sick, the worst were the muscle rigors, My muscles would freeze up and cause a kind of tearing twisting pain. I went to the hepatologist, begged for help. His answer was to send me to my primary care. Her response? Why are you doing a trial? Why aren't you taking the Standard of Care? Why should I help you through this hell HE has caused? Hysterical in tears she finally gave me some Vicodin and Flexeril. That was my only pain relief 30 Vicodin 45 weeks.. As time went on, another doctor feeling bad for me put me on Neurontin, it didn't do much it allowed me to sleep at night, I was grateful, undetectable for a short while. I had to stop as my blood work was so bad it appeared to be that of an AIDS patient. 6 weeks later HCV was back. I had a raised red rash all over my body, HCV had returned.
I went from 0 to 4 mil in 6 weeks.I was in agony, thought my ankles were broken. That was Jan 2009. I would have to wait til Nov 2011 to treat with Incivek, Interferon, Riba. I treated with that horrible medications for 24 weeks. I was lucky, my doctor said since I had cirrhosis it might not work. He would only allow 24 weeks as he said, it will work or it won't, I am not going to risk damaging your liver. It was worse than the trial had been. Explosive burning diarrhea several times a day. We all, class of 2012, joked about the "shards of glass" the bottle rockets. We were in agony drawn together by our pain, sadness, frustration as others exclaimed. why are you doing this? Why are you putting yourself through this. People didn't understand we were trying to save our lives. Many of us did just that. As harsh as the treatment was on our bodies minds souls it was even harder on the HCV. and one by one we became undetectable. There was much cheering, dancing with our red shoes on.There is even an undetectable list someplace on here, I believe Ann made it.. We did what ever we had to do to get through the God awful 20 grams of fat, 3 times a day, along with the Incivek, the weekly shots. Along the way we lost some great people. We often said we were standing on the shoulders of the Giants who went before us. We were connected by our pain, misery, love for one another.Without Medhelp and all of my friends I would not have made it through the treatment.
I began this to tell/ask people to please treat. Monday 5/28 our best friend died of Hepatitis C. He tried to treat with SOC Interferon and Riba about 8 years ago. After 6 months of hell, he stopped. I know this is too long and if you got to the end, thank you for your time. We are mourning the loss of a friend, brother, Dad, Grandad, Uncle, Nephew, best friend.
You're very courageous, Dee. And your writing is a very effective narrative, well done.
RIP to your relative.
RIP to your relative.
Hey no problem we are always here to share the tough times
1 Comments
Thank you so much Lynn, I am look back over what I read, I wonder where it came from. We had just lost our family Member Tuesday May 28. I was reeling from the pain. I thought, others have to know, they must treat their HCV. I am grieving so badly. I tried to get our friend to treat when Harvoni came out. I got him the paperwork. shared financial assistance with him. All he could remember was how bad the interferon was. He was right, it was awful, and people asking why I was doing it was even worse. I had been told if I didn't treat I would need a transplant in 5 to 10 years. 10K people die every year waiting for a transplant. This was 2008. I am still alive. My live is actually healing. I have gone from cirrhosis to rough texture to mildly rough texture. My doctor sees no need to do a liver biopsy as he said, my blood work and ultrasound improves every year. Thank you Lynn!
I'm so sorry for your loss, Dee. And I am nearly in tears for what you yourself went through.
Hugs and comfort to you and your family.
Hugs and comfort to you and your family.
1 Comments
Thank you Jade, as I said above, I was upset over losing such a dear friend, my husband is destroyed
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