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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 hep 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 doc that found this had 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 hep 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 hep c since around 2006 or 2007.

Fast forward

It was now 2009 and chronic. We talked to the doc about treatment options and he sent me to a gastrointestinal doc for further testing, which confirmed hep c. He had me set up to take a pill that I don’t remember the name to because my insurance would not pay anything for it. This would have been 1,200 per pill at one pill per day, for 12 weeks if I remember correctly. That was not an option for us. So the doc 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”. I was 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/Medicaid (because I have both) would pay for it then 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, plus his daily chores like mowing. One day my son asked if I was dying. I was stunned and said, “no baby, what makes u think that”? And he explained how bad sick I really was in ways that I hadn’t even noticed.

Getting onto treatment

So I went back to my doc and told him I had to take treatment no matter the consequences. The doc than 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 8 weeks and I had been on it for over 10 years. The doc was very unsympathetic and kept saying it’s only 8 weeks. Anyway, I made it thru the 8 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 hep c 2 times now and go for my 3rd 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 hep c and treatment, but he was so impersonal and left me alone to make up my own conclusions?

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Comments

  • Curt
    3 months ago

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

  • Sligogirl
    3 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
    4 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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