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On Your Mark…

“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.

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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)

·      Meditate

·      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!

I just heard from a reader asking how I was doing so it felt like a good time to write a new post. My life has just marched on and from what I can tell, I don’t have any major long term side effects from the treatment. One thing I have not done is turn my energy towards consciously reversing the fibrosis, mostly because I’m not sure how to do that. I need to become a research-aholic again and find out what’s out there and make that my new mission. When I do I will let you know what I find. 

You know, once you get through something like this, the habit is to not think about it all that much. In fact, it seems like a far off dream until i get a message from a reader. I think not harping on the hard things we’re been through and just focusing on the stuff that feels good is coping mechanism we have as humans. (That’s why we have more than one kid ;). Nothing wrong with that I suppose, but that shouldn’t mean I stop working on healing my body. 

I still work out most days and continue to watch what I eat, I will have a glass or two of wine from time to time, or a dessert occasionally. None of that seems too detrimental, but one thing I do feel is harmful to my body, my mind and my liver, is stress. In my life, that is the final frontier. Reducing my stress. I know there are clues in my Hep-Free blog that perhaps I should re-read and pay attention to. I got through treatment as well as I did because of what I focused on and how I chose to think about things. One thing I truly believe is that stress can be controlled. If you think about it it doesn’t really exist. Only stressful thoughts do. That sounds like it might be a good thing to start a new blog about, eh? 
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Anyway, here are new treatments being introduced that have lighter side effects than the triple therapy, but they’re not all right for everyone. Do some research, find a good, knowledgable doctor, but don’t delay starting on whatever treatment your doctor recommends. Why wait to get healthy? 

Two Years After

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I finished treatment 16 months ago, but my virus was undetectable 31 months ago. That’s over two years of living Hep-Free, so I thought I’d give an update.

My liver has been functioning perfectly. It’s so wonderful to feel good, even if I have a glass of wine or some sugar, although I’m very conscious of not overdoing anything too harsh.

My mission now is to reverse my fibrosis, and there have been a lot of studies saying that it’s absolutely possible.

At first I heard there was a Chinese herb being studied by some Pharma companies, so of course I went on a sleuthing mission to find what it was…but no luck. I asked my doctor, and he admitted they were indeed doing studies, but wouldn’t tell me the name. He thinks I’d go find it on my own, self-diagnose and self-treat…and he’d be right. However, there have been quite a few studies that say by just treating your liver kindly, it will repair the scarring all by itself in like five years, so I’m just using common sense.

I’ve continued exercising pretty much every day, going to the gym, walking on the beach, riding my bike or practicing yoga. I kept my meditation practice going and really feel that’s been a huge help before, during and after treatment.

I haven’t had any lasting physical issues that I know of. No noticeable weight gain or anything like that. My hair has thinned but my dad was pretty much bald so I don’t think I can blame triple therapy on that one😦

What I do know is that not having to host that virus anymore has taken a huge weight off my shoulders. There were some mental adjustments I needed to make at first, not having that constant battle simmering under my psyche, but after a while I realized that focusing on being healthy is just a lot more fun.

I’ll keep my hunt going for fibrosis reversing herbs and will post anything I find here, but in the mean time, I wish you Hep-Free luck, love, and a smooth road back to health.

The Circle Completes

It was exactly one year ago today that I was getting ready to begin my treatment, and it was just yesterday that I got my final post-treatment viral load test results. I am happy to announce that now officially Hep-Free!

It seems fitting that on a day that’s all about gratitude, I’m feeling so massively grateful for everything this past year has offered. It was a year of letting go of the past and starting a new chapter. This year was a wake up call to do things differently than I have in the past. I want to live this next half of my life being the best possible version of me that I can be. For instance, I’ve learned to meditate in a way that is deeper than I had before and actually shift my attitude, my perception, my health and alleviate stress and anxiety in a few deep breaths. I’ve used that skill a LOT lately. Just one positive “side effect” from treatment that I didn’t expect

Another is that I’ve realized that life is too short so I’m not wasting time with people that are negative or who drain my energy. I want people in my life who ADD not subtract from my life experience. I’m going to try to re-apply for life insurance now, since I’ve been paying a ridiculous amount per year ($21,000!!!). Wish me luck on that.

I’m saying “no” to clients I don’t want to work with and saying “yes” to opportunities to do the kind of projects I really want to do, jobs I’m proud of, work that can help people and even make a difference. It’s already happening in so many cool ways that I really think the best is yet to come.

But another thing I’m extremely grateful for is YOU. Knowing that there were other people out there who were starting this same treatment, and feeling just as frightened as I did, is what drove me to create this blog and keep it going. Trust me, there were a lot of times I had to make myself write when I didn’t feel like it. What made me get off my ass and do it was knowing that there was a chance it might help even one person out there who was feeling alone and scared. Reading your comments and hearing about the challenges you were experiencing made my heart go out to you. And there’s no better way to stop focusing on yourself than to focus on someone else. So thank you for being there, for sharing your thoughts and your fears, and for inadvertently being my muse.

I hope this blog has been comforting and helpful when you needed it most. I wish you the best of luck and the best of life. You deserve it and you will have it.

To your health!

Eye, Eye, Cotton

Just got my last green light on my final eye exam. I had some cotton balls or cotton wools (?) in my eye (Retinopathy is the medical name). It’s a side effect that can happen from treatment, and the doctor had seen a couple last time he checked, but they’ve since disappeared. I’m glad because almost no one wants cotton balls in their eye, except maybe this guy …

SO, no heart issues, no eye issues, and I’m on my last month of post treatment before I get the green light from the medical community saying i am officially Hep-Free. I haven’t made any entries lately because I thought they would be boring. Just life as usual, but without the virus. I still think about all of you who are currently going through treatment often, and hope you’re flying through it as unscathed as you can. Remember, attitude counts for a lot. Try to stay positive. The light at the end of the tunnel is so worth it. All the best. C

It’s been four months since I ended treatment and I thought I’d check in to report on life in The Zone.

Physically: Overall, I feel great. I have a lot of energy, have been exercising everyday, and sleeping better than I have in ages. I’m surprised that the virus may have affected my sleep but it seems like that may indeed be the case.

I have moved out of my militant eating phase and have had a few client dinners or parties I’ve gone to where I’ve gone wild and had a few glasses of wine and/or a desert. Although those are still worth avoiding, my liver handles both of those MUCH better than it has in years. I realize that the challenge now is to reverse the fibrosis and both sugar and alcohol do not help. Best not to drink anything but it is nice to know that when you do, it won’t make you feel shitty and hung over after one glass like it used to. It’s so great to have a body that’s functioning the way it should, finally. THAT is a miracle.

Mentally I have noticed something: after putting that intense focus, energy, and concern on my health for so long, I think I’ve somehow trained my brain to think like that. Now I have to retrain it NOT to worry about my health. The trouble is, part of me thinks “Well, now that this Hep-C is gone, what’s going to replace it? Cancer? High blood pressure? Heart problems?”. I know it’s irrational, but emotions usually are. It’s just a habit of thinking and I need to re-program my brain to get used to having nothing wrong.

And for once in my life, I can say that I indeed have NOTHING WRONG! (I wrote that for my brain. I hope it paid attention)

SO, life on this side of treatment? So far, is so good. I still say it was 100% worth every minute of discomfort. From this perspective, it feels like a blip in time, but I know all too well that when you’re in it, it feels like a lifetime. Stick it out, my friend. This is one time the grass actually IS greener…in the Hep-Free Zone.

12 weeks post treatment. I just got my latest viral load and it’s still gone! That means I’m something like 99.6 percent in the clear. Those are good odds, but I’ve known it was gone almost from the beginning. There was actually one night I had a very vivid dream.  It was around week six, my ‘virus’ in the form of an old friend of mine, came to say good-bye. I woke up absolutely sure that it was not coming back. Of course that’s hardly scientific, but it was clear as day when I woke up and I would have been shocked if it had actually come back.

That being said, if it HAD come back, I was mentally ready for that too (expect the best but plan for the worst). I would have just gone back on my herbs that had kept my viral load so low (between undetected and 20,000 for almost twenty years) and waited for a new treatment that would have been effective. Hep-C is such an epidemic that the pharmaceutical companies are pouring billions into research and, now that they found a way to cure it, there will be many new options coming out. I’m just glad I lived long enough for them create a cure. You should be glad too😉

I have been enjoying being Hep-Free every day. My body/liver continues to function noticeably better and better every week. My eyes look clearer, my brain is working better, my skin looks healthy, the dark skin under my eyes is almost gone, and I’ve been sleeping much better since I stopped taking Ambien. Before my treatment began I went in for an ultrasound and they found a fairly large gallstone. My doctor said to just wait and see how it went. I was a little worried from all the fat I had to eat, but it never became a problem. I did, however, get an herb for it that supposedly breaks it down into a type of sludge over a few months, so we’ll see how that goes.

I started a juice cleanse today just to give me body a break. I do that occasionally just to change my ‘oil’ and it’s only going to be three days this time. Juice cleanses make you feel great, once you get past the initial panicky feeling that you’ll be really hungry. Your energy goes up and your brain gets very active from day one. And most importantly, my poor battered liver is finally getting a break from everything it has had to deal with these past 8 months. Phew. I can almost hear a muffled sigh of relief from just below my right rib cage.

And the picture of the two Hippos trying to French kiss? Another kind of Good Odds

http://holisticonline.com/Remedies/weight/weight_table-fat-content-of-foods2.htm

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