Monday, March 15, 2010

Lisa's Story

Hi all. My name is Lisa. I am a white 52-year-old female genotype 1b grade 1 stage 0. I was diagnosed about 7 years ago and almost lost it. I couldn't believe it. My gastro said wait for a better treatment to come out since my biopsy revealed little damage. For several years I had symptoms of hep c exhibiting as rollout. it was very painful, interfered with work and personal life, and no Dr. knew what I had. I was misdiagnosed for 2 years, got fed up, and diagnosed myself with the help of the Internet. That kick started my treatment Sept. 11 2009. Good Lord, talk about being hit by a train!!!! I consider myself a tough cookie and have been through a lot of trauma in my life. but I was not at all prepared for the fatigue, malaise, pain, nausea, loss of appetite, etc. etc. that followed. I was already on anti-depressants when I started treatment and thought that was sufficient. Two months of crying and suicidal thoughts took me back to my Dr. who prescribed extra anti-depressants. they saved my life. truly.

It's been the battle of a lifetime. As bad as my two divorces, but isolating. I was thinking about it today....a friend I know broke her fingers and required surgery. She is able to talk about it to anyone and share and they can see and understand her pain. Our pain is hidden. No one sees it or can feel it. they don't understand the brain fog, the digestive problems, persistent fatigue, insomnia, etc., and we are really isolated. Personally I don't talk about it to anyone for fear of being judged. I am single and that has a lot to do with it. I protect myself from whatever makes me unhappy or scared and people just plain don't understand hep c or the debilitating effects of the treatment like they do chemo.

I started to feel better around week 10. The first 10 weeks all I could do was work and sleep. I had to sleep 12 hours a day and on my days off I would sleep 16 hours or more. I went over to my mom's house for dinner because I was too tired to cook or shop. Thank goodness I got better, but very gradually. I work at it like crazy. I read uplifting things, try to do things that make me happy, don't do anything outside of work that requires energy I don't have. sometimes I get tired of not having a life, but then I try to remember that this treatment is working for me and how blessed I am that it does. there are so many hep c folks that treatment doesn't work for. I don't read depressing articles about hep c even though everyone says you should be informed. I am informed more about nutrition and exercise and what I can do to make my body healthy. I try to put my energy into things I have control over and not worry about what I don't or can't control.

This is not to say it's a cakewalk now. I've been so tired this past month I haven't performed well at work and I have too many days where I just have a complete breakdown--physically, emotionally, spiritually--you name it. Then I have to rebuild. I let myself cry if I need it, but not too long. I see a therapist. I get a massage. I hug dogs. I remember that one day I will live again and actually have a life. That will be amazing. I try to be grateful for what I have.

The journey isn't just an assault on your body. your spirit, your soul, your thoughts, your brain--they all change as well. It is such a cataclysmic shift it's hard to adjust.

I have become a kinder, more compassionate person through this. I have learned to forgive myself. I have learned to set limits and say 'no.' I have learned that life isn't perfect or fair and that's just the way it is. I have learned every person with hep c is different and what works for me won't necessarily work for you. Find your path. I even write down what works for me because my brain forgets stuff all the time.

Slough off the stuff that doesn't matter. I finally stopped shaving my legs because I don't have the energy and who the hell will see anyway? I let go of being perfect and desirable all the time. My skin is like a snake's and I am pretty pale. When I get tired, really tired, I just cannot function. I must go to bed. take care of myself.

I have one good friend I bitch to a little, but everyone has their limits. mostly there is no one who wants to hear every freakin' detail of what aggravates you and the downfalls of the treatment, so I write poems about how I feel and that helps. I try not to abuse my friends and family with complaints. it isn't their job to carry me and they won't anyway, they can't. it's my journey.

well, I have certainly rambled a lot here. if this helps just one person, I feel the treatment will have all been worth it. I found a great friend on Janis & Friends who was so compassionate he made me cry. the websites are invaluable. Great resources and always someone to listen.

My Hepatitis C Story

I am a 55 year old female. I had recently moved and went to get hooked up with a new family doctor. As part of his blood panel he ordered liver enzymes and mine were elevated. ALT was in the 90's. 6 months later he checked again and they were still elevated even more. ALT at 190. HE did the screening test for Hep C and I had it. I have never had any symptoms.

It was of course quite a shock.

I was diagnosed 2/10. Biopsied 3/10- stage 0 to 1, grade 3 . I had been a frequent wine drinker. My doctor thinks I have been infected for a long time but had little progression.

I began treatment 5/10 at a local teaching hospital with a hepatology department.

Before deciding to treat, I had all the concerns everyone has. Will the meds do lasting damage? How bad will the side effects be? Can I still work?
I made it a point to learn all I could. I researched based on my personal odds of clearing the virus and decided to treat now as I have great medical coverage and want to retire soon.

I am genotype 3a so I treated for 6 months. Used Pegasus and RIbiviran 1000 mg ( at my request as this was weight based and the research I have read indicated this would give me the best odds to clear the virus)

I had minimal side effects during treatment. Anemia and fatigue were the most notable. Procrit was used to deal with the anemia. I did not takes any meds for anxiety or depression. I never experienced any of the psychological issues associated with the treatment meds. Most other side effects were annoyances. I just didn't like that the meds made me feel edgy and hyper. I missed only 2 days of work in the 6 months.

So far my treatment appears to be successful. During treatment the virus was undetectable at week 4 so I had rapid viral response and it has remain undetected. I was still clear on my 3 month post treatment tests.

I would do it again if I had to.