Thursday, January 5, 2012

Me and Hep C:
Am I Getting Cold Feet?

Even when you know that you are making the right decision, you can still get cold feet while you are waiting for the consequences of said decision to kick in.

That's where I am at right this moment.

There are five days until my next doctor's visit with my hepatologist and I am freaking out because this is THE big visit where we talk turkey about starting Hepatitis C treatment with the triple cocktail of interferon, ribavirin and one of the new direct-acting antiviral medications.  At the end of this visit, I expect to be walking away with a game plan, a timetable and prescriptions in hand--pretty overwhelming stuff!

This is the turning point where I go from thinking about Hep C treatment to actually do it.

I keep telling myself this is a normal and expected reaction.  After all, everyone feels some ambivalence about their decisions, even if they are completely committed to them.  There is always that nagging "what if I'm making the wrong choice" factor that quite frankly won't get answered until after you take the plunge. 

I think my ambivalence comes from knowing that this is not going to be easy.  This is 24 to 26 weeks of chemotherapy administered by me in the comfort of my own home.  Treatment is a weekly injection of interferon and two different pills, ribavirin taken twice a day every 12 hours and an antiviral taken three times a day every 7 to 9 hours.  Oh, and the antiviral has to be taken with 20 gram of fat.  (I'm currently trying to wrap my head around how exactly I am going to do that.)

Most of all, this is a commitment to taking those pills on time, not missing one single dose or taking a dose late, because if I falter it opens a window of opportunity for that darn virus to mutate and become immune to the treatment.  Talk about pressure!

God, I hope I can do this because one thing I am NOT is perfect!

Then there are the side-effects.  It makes no sense to list all of them because who knows which ones I will get. There are two however that I am concerned about the most:
  1. Anemia and the adverse effect it will have on my dysautonomia symptoms.  When I attempted Hep C treatment back in 2007, it was a heart rate of 120 and shortness of breath brought on by anemia that landed me in the hospital and convinced me to stop treatment.  I think I might feel better if I could connect with a really good cardiologist in the next few weeks that could manage this side effect appropriately.
  2. Some people experience depression from interferon treatment.  (In fact, this is not specific to Hep C treatment alone--patients with MS on interferon are also at risk for this complication.)  The good news is that I will speak up if I start to feel depressed and get treatment.  The bad news is that it can take several weeks before antidepressant medications "kick in," so I might be a grumpy camper for a while.

I am also preparing myself for a lower level of functioning.  Currently, I would say I am about a 35/100.  When I crashed and burned from treatment in 2007 I found myself at a 10/100 and it took three months to get back to 25.  With support from my husband and the generous use of energy savers like prepared meals, online shopping and help from others I am confident I can scrape through if this indeed happens again.


Finally, there are three other things that are bothering me:
  1. I won't be able to keep up with my blogging as much as I would like because of treatment side effects.  (I'm considering video blogging or podcasts as alternatives.)
  2. My container garden will suffer this year because I won't have the energy for it. (Which might mean my new blog, The Seated Gardener, is going from temporary to indefinite hiatus.) 
  3. I'm afraid I might lose the attention of readers like you who come here for posts on fibromyalgia, chronic pain and chronic illness in general if I write about Hep C too much.  (My need to be an advocate for people living with Hep C might override this concern.)
So yeah, I have cold feet.  (Apparently going through with treatment might give me cold feet too!)  But this will pass once I go to my doctor's appointment and start moving forward instead of sitting here waiting.  It's like they say (sing it along with me...) The waiting is the hardest part!

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WinnyNinny PooPoo said...

Hoping the treatment reduces the Hep C burden on your body.

Try using a product like Ensure if you can, or pump up milk with milkfat or drink a shake to get the number of fat grams you need, it might help also with some of the dietery problems you will have.

Take care!! I will look forward to reading your posts as you are able to post them!

abcsofra said...

You need to do what you need to do to get yourself better. And we will be here regardless of whether you post or not or you post about hep c or not. Just know that all of us reading your blog are cheering you on and hoping that this will all work out in your favor.

Shannon said...

I am so glad you won't be alone through this ordeal. At home I mean. Your #spoonie friends are always a tweet away :)

I can't imagine how frightened you must feel but it sounds like you want to do it. So if that's true, just do it! Don't think, just do it. When we stew about things and think too much we create a self fulfilling prophecy of more and more worry. You worry about worrying and then you really DO it.

Living with a professional Worry Wart hubby, I know how vicious a cycle that can be. Stress does horrible thing to the body as we both well know.

So I'm very relieved to know your hubby will be with you during this trying time. You are NOT alone and you do have a support system. You'll do great!!

Emily Cullen said...

I too am in a similar position. In the next month I will try the newest drug for Lupus, Benlysta. It is given in a hospital. I am really worried about how I will cope from the side effects as I am not coping so well right now. I am glad I read your blog today. Nice to know I am not alone, even though we are going through very different treatments. I'll be thinking of you.

Felicia Fibro said...

Good luck with everything, for some reason I have a good feeling about this.

Don't be afraid to share your Hep C stories with us - we're here to hear about your life too, not just fibromyalgia. If you're still worried, maybe just try to infuse how the Hep C stuff is effecting your fibro in your posts.