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The hardest battle I have ever fought

This is my first post on here and I wish I could have found it sooner for the support.

I was exposed to hepatitis C in a nursing home setting while at work. I was sent for several tests but never got any results back, so I thought no news is good news. Wrong! This occurred around 2003 and my second test came back with a high level of enzymes, which I was never told about. The doctor who found this died and I fell through the cracks. Skip to 2009 and I’m now 24, having to have a full hysterectomy. After the surgery was over, I was waiting in the office and went through my chart. I saw chronic hepatitis C in there and my mind shut down. I am bipolar with an anxiety disorder. So before the doc came into the room I was in a full-blown panic attack, which seemed to annoy him. We found out that I had had hepatitis C since around 2006 or 2007.

Fast forward

It was now 2009 and my condition chronic. We talked to the doctor about treatment options and he sent me to a gastrointestinal doc for further testing, confirming hepatitis C. He provided me a prescription that I don’t remember the name to because my insurance would not pay anything. If I remember correctly, the price came out to $1,200 per pill for one pill daily. That was not an option for us. So the doctor said that we could go the old but effective route of interferon treatments. I was ready to start that day, until he explained the side effects, that they don’t like to give it to someone with a preexisting mental illness, and his exact words were, “think long and hard about this because the side effects are the same as going through chemotherapy.” This left me terrified. He continued to say that I don’t have bad damage just yet and it could go years before I ever have any symptoms, so why not wait until new treatments come out or that my liver would get so badly damaged that then and, only then, would my medicare or medicaid pay for it because of the irreversible damage. I was livid, but there was nothing I could do except go home and live healthily.

Moving forward again…

Skip to 2014 and I begin to start having symptoms like pain in my upper right abdomen, or I was sleeping 16 to 18 hours a day every day. I couldn’t help my son with homework. I had to drop out of college because I could not focus, my depression and isolation became so bad that I didn’t shower or leave my house for months. By the time 2017 rolled around, my fiance had been doing everything–the shopping, cooking, taking care of our kids, all on top of his daily responsibilities. One day my son asked if I was dying. I was stunned and said, “no baby, what makes you think that”? And he explained how badly sick I was in ways that I hadn’t even noticed.

Getting onto treatment

So I went back to my doctor and told him I had to take treatment no matter the consequences. The doctor then explained that my insurance would pay for the new treatment. We tried Harvoni first but they wanted a copay. Then we went to Mayvret. The bad thing with that was I had to quit my mood stabilizer for eight weeks and I had been on it for over ten years. The doctor was very unsympathetic and kept saying it’s only eight weeks. Anyway, I made it thru the eight weeks with a lot of side effects all the while being told that it could not be from the Mayvret, even though I knew it was. But I’ve tested clean from hepatitis C two times now and go for my third and final test next month. They have all came back clean so far and my energy levels, itching, grey stools, and side pains are gone. Not to mention the worst symptoms was the flu-like symptoms.

Can anyone relate to having a doc that seemed to be knowledgeable about what he knows about hepatitis C and treatment, but he was so impersonal and left me alone to make up my own conclusions?

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Comments

  • Rick Nash moderator
    21 hours ago

    @seesa
    I hope the resolution to your story is grand. With hep C gone, your liver can regenerate. My mom went from F3 in 2011, to F0 in 2019. Those long sleepy days will be a thing of the past. It’s good that your fiancé was so supportive during this. You’ve a rare bird, and a strong support network. I hope you’re a dragon slayer now!
    @jdh888
    The old treatments were dreadful, and it take a lot to get through them (I went through three myself, so I feel ya), and unfortunately the NHS wasn’t the only one, same thing happened here in the United States and in Canada. However, the the fact that the U.S. Congress waited three years to act on the data about hep C, is largely a moot fact.
    @sligogirl and everyone above
    In my experience, I reflect your experience of women’s plights being largely muted or fumbled by doctors for one “reason” or another. There is a noticeable and distinct bias which happens on occasion. My mom also had hep C, and the difference in what our same doctor would tell us regarding symptoms was enough to make us both switch away. He had told her that her symptoms were actually from menopause, but when I experienced the same ones, mine naturally were from hep C. The doc was a hepatologist, and our complaints along with others’ helped the clinic decide that his services were better utilized elsewhere.

    It’s great to have peers surround us, to remind us that we’re on the right path, and that we are more than our diagnosis. Thank you all for sharing your stories. They connect us all, and build us up stronger together.

    -Rick Nash (Moderator/Contributor/Dragon Slayer)

  • jdh888
    2 days ago

    Hi there
    I live in the UK.Im 61 years old now.
    My horror story began in 1988 during a difficult childbirth where I was given life saving blood transfusions for which I’m grateful that my daughter and I survivdd.The anger and frustration I feel is not aimed at the Staff or in the NHS but to the system snd those who made the decision to purchase and administer contaminated whole blood and blood products and whether or not the blood was screened for Hepatitis etc etc. It is a big debate and in effort to find the truth and justice there is now a complete UK ongoing inquiry about NHS Infected Blood .
    My health began to change after that delivery in 1988 firstly the tiredness and headaches but I accepted that as after birth usual adjustments. Breast feeding became impossible with cracked bleeding nipples. The menstrual cycle was severe and incapacitating. I was offered no medication or treatment other than iron tablets. It continued until menopause.My gums were bleeding and receeding i lost teeth my Dentist said my bone strength was far to low for my age group. There was unexplaind constant bruising .In my notes it was just regarded as anaemia problems. One doctor told me ‘ your a woman. What do you expect?
    Life continued months turned into years but still this ‘tiredness and headaches’ continued. Next I had two miscarriages of 14-16 weeks a year apart. Neither time was I allowed to see the babies nor given any information. After that I had myself sterilized. Out of the blue I was admitted to hospital with acute Jaundice. After a week and many tests I was diagnosed with non a non b Hepatitis .
    No explanation was given or and instructions but was told ‘ it just like a flu virus. No need to worry
    So life went on although the ‘tiredness and headaches there also the sensation of confusion and concentration in adfition. Work became a problem I existed from shift to bed . I needed to be in total dark and silence that was all I could manage. ‘Sleep’ did not help .I shut everything and everyone out. I became very moody and unpredictable .
    It seemed I’d become someone else….maybe I’m going insane.
    Next the pains in my swollen abdomen increased with excruciating pain feeling like a sword thrust into my right side. Dizziness / fainting panick atta cks brain fogginess and the unbearable migraines and neck pain.
    My gall bladder was removed but there were no sones.
    My symptoms remained.I could not work my Life was falling apart.
    In 2003 a blood test revealed HCV positive.Contracted from contaminated blood in 1988 traced in my medical notes even down to the blood bag numbers.
    A liver biopsy showed my liver at stage three necrosis with portal damage and fibrosis.
    When I was ‘well enough’ meaning my kidney/liver function etc were at an acceptable level my treatment of Rabivirin/Interferon began. It was hellish. My hair fell out. It was regarded akin to ‘chemo therapy’. Luckily I was cured by 2005. It’s now 2020 still unemployable the tiredness remains. I was diagnosed with CFS/ME. My GP says ‘ probably triggered by HCV/Treatment.At last everything makes sense. There is no cure as such one just learns to listen to their body read the signs and live around this illness as best as possible. Lucky to have survived to HCV. Thousands of people have died from HCV. S It’s estimated 1 dies every 4 days. How many people are undiagnosed?.
    There are now new drugs to treat the HCV which seem to have far less long term after effects and im happy to read many testimonies to support this which is very encouraging. Things are improving and being positive is a big boost to recovery. We are hoping everyone will be diagnosed and tested for HCV to be removed by 2030. So for those of you struggling with HCV pre or in treatment. Cured or not or just driving remember you are not alone.Stay strong and don’t give up. Blessings to you all.

  • Valerie Madill
    1 week ago

    Oh my heart ❤ goes out to you!
    I never felt so all alone in my life, the truth was many of us were left to figure it out for ourselves!
    I had to switch my gp before getting one who helped me.
    We had to be our own avacates before! So thankful for all the groups and places one can go to for support!
    Lots of support groups on fb too!
    Good luck in the future and God bless

  • Curt
    4 months ago

    Congrats on powering through all those setbacks! You’re cured and it’s all worth it. Enjoy your new life!

  • Sligogirl
    4 months ago

    I am with you on bad behavior from drs. They act like its no big deal and that we know everything they know. I got co.pletely aggravated with two different drs and just started to ask God for help. Well supposedly ( according to blood tests) i was all good with no high results. That was 2015. Last Jan i just felt like death. Im getting older, 66, ok but i didnt want to get out of bed all winter and could not get rid of a continuous sinus infection in my whole face. One night i had excruciating pain in right side, i thought i was having an appendicitis. But im one you have to literally drag to a hospital and in a couple days i was all better. In April 2019 i find out my counts are WAY HIGH!! So obviously i have been in danger at least since Jan. I received a blood transfusion in 1994, and im sure thats how i got it. 22 yrs ago. OMG RIGHT??? Anyways im finally seeing a hepatologist Sept 25th. The fatigue is horrible right? Nobody that doesnt experiene thinks we have to be exaggerating or just lazy. And the skin?? Lord, im so tired of dry skin and i get red bumps that break out and start to itch. I always swear it feels like parasites crawling on me. Yuk!! I am so bloated i look like i am 8 mths pregnant, i weigh 170lbs and im only 4’11” . Im a basketball!!! And sweating is out of control. I sweat like a100 people rolled in one. I wash up at least 4-5 times in a day. Change clothes the whole deal. And speaking of clothes…none fit me. My bra is ripping, my underwear roll under my huge stomach. So much fun right? Im sorry you went thru such pain and agony for so long without help. Luckily you must have a very wonderful husband. Im doing this all alone. My mom and brother live in CO. My two sons??? Dont even get calls from them. Oh well thankfully i have Jesus on my side. You make me feel like there can be a normal feeling when treatment is over. Take care and educate others!!

  • Lauren Tucker moderator
    5 months ago

    @Seesa, thanks for sharing your story with us and being so open about your journey. Congrats on getting onto treatment and getting cured! I am glad all of those symptoms have gone away and you are living! The battle as you call it to treatment can be scary and hard and I am sure your story will resonate with many on our site. We hope you continue to post and share your story with us. Reach out anytime. Warmly, Lauren (HepatitisC.net Team)

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