“All great changes are preceded by chaos” – Deepak Chopra
This is a log of my experiences as I embark on my triple therapy for HCV. I wanted to share this for two reasons:
To help anyone else going through, or about to go through, this treatment and…
To get stuff off my chest.
I avoided treating my Hep C for decades because the side effects sounded like such a nightmare, and the success rates were so low for my genotype (1b). But then this new therapy came out specifically targeting that genotype and I decided to move ahead. Scary stuff, but the alternative (cirrhosis) is much scarier.
I hope some of what I discover and share along the way will help you as you decided whether or not to do this, and how to deal with some of the side effects if you do. Please let me know what is helpful, what isn’t, and what other solutions or perspectives you have. We all need to carry on the conversation, especially since this is such a new protocol. We are kind of the lead scouts in this and need to share our stories from the front lines.
My first entry called “On Your Mark” is, to me, most important as how you prepare for this treatment has a lot to do with how it will go. In fact, I think I’ll make it part of this ‘sticky’ opening. Then, after that, will be the posts in chronological order. I’ll try to not over post, but again, part of this is therapeutic to me. You can always just not read it😉
To your health.
OK, before I start this treatment, I’m going to get myself in the right mindset. I’ve read all the nightmare stories and have gotten myself sufficiently freaked out, so I have to change that. There is no reason to believe I’ll have every side effect, and every side effect must have a solution.
I’m 57, treatment naïve, have had Hep C genotype 1b for probably 30 to 40 years, depending on whether I contracted it from tainted blood in the 80s or early 70s. I’ve been using herbal therapies for the past 21 years since I was first diagnosed. My herbal therapies have been managed the whole time by a naturopathic doctor who is trained in oriental medicine and is a molecular biologist. He has kept my viral load very, very low for decades. I recently had a blood test to check fibrosis (Fibrosure?) and it said I was almost scarred to the point of cirrhosis. I freaked! Had a biopsy and found out the blood test was way off (I was stage 3 out of 6 – which is an F2 according to my doctor), but it got me talking to western doctors and I heard there was the new triple therapy coming out the following year. I waited, and now is the time.
I use acupuncture regularly, and have an amazing acupuncturist named Niseema who I’m going to see throughout this treatment. I will include some information and even a few entries from her at some point as well. I had read a book called the Hep C Handbook by Misha Cohen and Dr. Robert Gish, which talks about the latest western medicine combined with eastern therapies to manage side effects. I spoke to Misha in San Francisco and it turned out that her writing partner, Dr. Gish, was moving to San Diego where I live to run the Hepatology Department of UCSD, which happens to be in my insurance network. I called and got an appointment, so figured the planets were aligning for me to follow through with this. There was a new triple therapy coming out soon comprised of Interferon, Ribaviran and Incivek, which sounds like a small town in Iceland but is actually the rock star in this power trio. Misha has a great protocol for getting through the triple therapy, well worth checking out.
First, the physical side effects: I asked my doctor to prescribe an anti-depressant (Wellbutrin) as that’s a prevalent side effect, got a prescription for an anti-nausea medication (Prochlorperazine), stocked up on Ibuprofen (the only thing you can take), Ambien (to sleep), a big ass water bottle, an iPhone app to remind me to drink more water every hour, Nupercainal (Dibucaine) hemorrhoid cream, Avenoc homeopathic suppositories, and Aloe cream, and a fragrance free skin cream from Whole Foods and Alba Botanic cream. I figured the fewer the chemicals the better, with all the drugs I’ll be taking.
For the mental symptoms I want to write a list of “Notes in a Bottle” to remind me of why I’m doing this when I’m perhaps lost in the throes of the treatment. I know that if I start panicking, I’ll need a reminder or two to bring me back to normal again. Here’s my list that I posted on my mirror in the bathroom, so I’d see it every time I brush my teeth:
Notes in a Bottle
· There is a purpose: to make you better
· You’re finally getting rid of this virus
· You’re doing this to live a long, healthy life
· You’ll see your kids grow up and meet our grandkids
· What you think is not reality – just momentary perception
· Your body is extremely adaptive and recuperates very quickly
· You can now start to reverse your fibrosis
· You can do ANYTHING for 24 weeks
· Thousands of people have done this and many are VERY unhealthy. If anyone can handle this, you can.
· One day at a time
· If you feel horrible, remember it will pass – tomorrow will most likely be better than today
· No matter what is happening, say “Next” and look ahead
· It’s better than being in a war
· It’s (much) better than fighting cancer
· Take this time to focus on helping other people – volunteer, write your book, focus outward
· REST a lot. This is time for you. Take it
· EXERCISE: Keep moving, even if you don’t feel like it
· Think of this as a vacation of sorts: take walks on the beach, go to the meditation gardens, hang at home and play music
· Love yourself now more than ever
· You have an amazing support team: (my wife, kids, chiropractor, acupuncturist, hepatologist)
· Don’t focus on how you feel, focus on what good this is doing for you and your family
· If you feel badly, don’t complain – Man up
· Don’t take your anxious feelings out on the people that love you
· Be a strong example for your kids
Emotionally and Spiritually I feel prepared, but one thing I decided to do is to shift the way I think about these meds. I hate pharmaceutical companies, don’t trust them at all, don’t take any drugs and am worried that these meds are going to somehow screw up my body permanently and they’ll have another mindless drug dependent sheep in their grasps. That’s maybe a bit negative😉 To shift that thinking, I’m going to look at these meds as a blessing. In fact, I’m going to literally bless them before I take them each time and thank them for helping to make me healthy. It’s got to be better than cursing them and seeing them as poisoning my body.
Here we go!