Hep C Treatment

March 19th, 2008 · 5 Comments

Did I ever mention that I’ve basically been kind of sick for the last two years? Not like sick in the head, but regular sick, sick-sick. I never really blogged about it because for whatever reason I thought it would be embarrassing or make me feel worse. Plus I wanted to be all super-woman and what have you. Or at least not a whiner. This morning it occurred to me, hey you ought to write about that. Especially because you’re feeling so great now.

I thought all this while I was driving home at 745A this morning from a 615A Ashtanga yoga class. It was awesome. It felt so good to stretch and sweat and flex. I felt really strong. Suddenly it struck me that 6 months ago I had to stop and rest while trying to walk up a flight of stairs between the first and second floors of our house. I had been undergoing treatment for Hepatitis C. From which I have been cured—or I should say, have had a sustained viral response, meaning 6 months post-treatment, no virus is detectable in my system. I can’t get the capital letters big enough to express the YAY that I feel about this.

I got Hep C when I was in a car accident almost 20 years ago. It was a really bad accident. Dreadful. I’ve never written about it, but a few weeks ago decided to give it a try. I thought I could get the story down in a page or two but after more than 1200 words, I still didn’t really get the story out. Still unfinished, but here is the work in progress. IT CONTAINS A SCARY PICTURE OF A PERSON IN INTENSIVE CARE (me), so don’t look if that kind of thing makes you squeamish. Or I should say I have written about it, but only to record the dream fragments and half thoughts that, to me, are the story. Since I have no memory whatsoever of the accident or the days following. But I did have dreams and experiences nonetheless… These are those fragments. It’s more like a long poem.

I don’t know if you know anyone who has Hep C or has undergone treatment, but there are a lot of us out there.

There are various genotypes of Hep C, but the popular ones in the US are 1A, 1B, 2A, 2B. Genotype 1 is more resistant to cure so the treatment is twelve months. For Genotype 2, treatment is six months. In both cases, the basic treatment is weekly injections of interferon (also used in some chemotherapies, I believe) and daily pills of something called Ribavirin. I had genotype 1A so I was in for the twelve month program.

Here are a list of the potential side effects. The basics: fatigue, depression, weight gain or loss, nausea, brain fog, and the ubiquitous “flu-like symptoms.” The not-so-basic: psychosis, colitis, heart problems, and hair loss. Oh please, don’t clobber me with these chemicals and make me fat and bald. This was my primary thought when beginning treatment. Well neither of those happened. I did get super-skinny though, going from an already not fat weight of 120 lbs (at 5’7”) to a frighteningly skeletal 109 lbs at one point. The biggest side effects by far were fatigue and depression. I didn’t get depression so much, but I definitely was whacked with fatigue, but I think they should say “weakness” instead of fatigue. I wasn’t pooped all the time, but I was so unbelievably weak. Like if I folded the laundry, I had to lie down for awhile. Had to rest while going up stairs, as mentioned. My doctor put me on anti-depressants about a month before treatment cause it’s recommended for those who tend toward depression, as I do and I guess it must have worked. But I totally had brain fog, which is great practice if you ever choose to become demented. I couldn’t retain information. (Although I could write. I wrote a book during this time. Go figure.) I developed all these coping mechanisms for remembering things like why did I come upstairs? What time did you say to pick you up? Do I turn right or left at the intersection? Everyone forgets things like this now and then, but I forgot them I’d say 80% of the time. So I covered myself in post-its. I learned to “put” certain pieces of information in various body parts—for example if I was supposed to pick someone up at 7P, I’d look at my right thumb and go, “7P. Remember that.” So when I looked at my right thumb, I’d get 7P. Don’t ask me why that worked, but it did.

Anyway, I made it through the year virus free. Sadly, I relapsed after 3 months. (The cure rate is 50/50 so it wasn’t a huge shock, although it was a huge bummer.) I decided to try again, this time a treatment specifically for relapsers and non-responders. 35% success rate. I just thought it would work. Whatever the odds are for most people, it usually doesn’t work that way for me, so I figured I had a 65% chance of being cured. Thus began another 12 months of a slightly different form of interferon, this time 3 injections per week and also Ribavirin again. This time it was worse. I had all the same symptoms as before, but worse and with the addition of ridiculous migraines. For the last 6 months of the treatment, I probably had 3-5 migraines a week. Plus anemia. Plus skin rashes. Plus a zillion other things I probably can’t even remember now. This time I did not relapse. I made it past the all-important 6 month mark, at the beginning of this year. My doctor sent me my blood test with a little smiley face draw on it.

About 3 months ago, I think I basically came back to normal although still kind of weak from 2.5 years of very little exercise and very low calorie intake. Now I’m about up to my normal weight and can once again do warrior poses, handstands, and a zillion chataranga dandasanas. Thank you, my body. You rule.

Tags: real life

5 responses so far ↓

  • 1 Lee // Mar 21, 2008 at 9:00 pm

    Hi,

    You might want to check out HEPV-L … the internet’s oldest information and support source for those with HCV:

    http://catalist.lsoft.com/scripts/wl.exe?SL1=HEPV-L&H=LISTSERV.ICORS.ORG

    If that web address is messed up just google

    HEPV-L icors

    This is not spam. I’m a real person, a fellow meditator, and a former Interferon warrior.

    With Metta,

    Lee

  • 2 Ann // Mar 24, 2008 at 10:34 am

    Hi Susan,
    I am really glad that you shared about your healing journey. As you probably figured out, it doesn’t make you look weak to share…….it makes you look human…..and it awakens compassion in those who read, especially if they have gone through a similar physical struggle.
    Last summer, after months of being so exhausted that I could hardly get out of bed, (and joining a Master’s Swim Team that practiced at 6am thinking I just needed more regular exercise) I was told by a great endocrinologist that I had hypothyroidism. Wow - an explanation for the fatigue, brain fog, weight gain, depression, etc)! After beginning to take Synthroid among other things, I began to feel better day by day. Still not yet back to yoga classes like I want to be, but I have discovered the ability to be still and accept my limitations - no more Superwoman.
    I now share the story with anyone who has similar symptoms, because thyroid disorders often go undiagnosed or misdiagnosed in women.
    May you continue to heal and share your stories!
    Ann

  • 3 susan // Mar 24, 2008 at 10:51 am

    Ann, thanks for the encouraging comments.

    It’s so weird when your body just starts doing nutty things. And it’s reassuring to find a name for it, isn’t it? So glad the medication is helping.

    May you continue to heal & share your stories, as well!
    xoxo Susan

  • 4 susan // Mar 24, 2008 at 1:00 pm

    Lee, thanks for the link, fellow interferon warrior. All best to you.

  • 5 Maria // Mar 31, 2008 at 3:48 pm

    I find it very interesting that I decided to check out your blog today. Just yesterday I was talking to a friend about whether I should blog about what is going on me with right now or if it was too personal. So, I guess I will break the ice of sharing on your site!
    A year ago I was diagnosed with Mastocytosis. The doc that diagnosed me had never seen a case before and literally read to me from a book. She then sent me home saying that I was ok and not to worry.
    Mastocytosis only affects .01% of the pop (20,000 people in the US) so I figured the doc might not know what she was talking about. She didn’t.
    One week ago I went to see a specialist. Thank god! I finally found out that all the other weird things going on with my body were all related and that I am actually a fairly sick woman.
    Until my meds kick in (they are currently making me nauseous) I shall continue to have: flushing, uncontrollable sweating, temperature change sensitivity, unexplained muscle weakness, bone/joint pain, headaches and migraines, brain fog (I totally understand what you were going through. I loose my thoughts mid-sentence), acid reflux, random bouts of nausea, and I’m sure there are others that I’m blanking on right now (darn brain fog).
    So, I’m a very scared 23 year old. In my head I know that this illness won’t kill me, but my kneejerk reaction is still activated.
    Did I mention that there is no cure? And that I have to take medicine 4x day for possibly the rest of my life? I hate medicine. I never take it.
    Sorry if I just dumped a whole lot on your blog Susan, but it feels like a safe space and I think I needed it considering how the words are pouring out of me.
    So, thank you for creating this space. I hope you continue to heal and remain healthy.
    xoxo Maria

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