Monday, July 30, 2012

Update: Where I Am at in My Hepatitis C Treatment

It's me and my new, shorter 'do
to camouflage my thinning hair.
Thanks to all of you for your recent inquiries here on my blog asking how I am doing with my Hepatitis C treatment.

My huge lack of energy explains my absence from Oh My Aches and Pains! Since April I've been publishing shorter updates to Twitter and the Oh My Aches and Pains Facebook page out of necessity. Both are public and don't require you to join to view what I share there.

I am currently in week 23 of treatment and I am scheduled to end my treatment on August 9, 2012. Since week 7 of treatment my viral load has been undetectable, so it does appear that I am responding to this triple antiviral treatment. Yippee for me!

Now I won't know for sure if this treatment has been a success until 6 months after I complete it, which will be in February 2013. The first step is a viral load which I will have drawn at week 24 on August 10th. Post-treatment, a good predictor of success will be the viral load I will have drawn at 3 months post-treatment, which will be in November 2012.

 I plan to keep you posted by continuing to share my lab results over on the Oh My Aches and Pains! Facebook page.

As you might recall when I began this journey back in February, my goal was to get rid of my chronic Hep C infection, the only chronic condition that I could potentially "cure." I was 100% committed to taking all my medications on time and as prescribed and was ready to endure up to 48 weeks of this treatment if needed. I got mentally prepared to go all out and hardcore for this and I've had my "Fight Like a Girl" face on this whole time!

I went into this treatment knowing that I might have to deal with lots of side-effects. And as it turns out, women tend to have more side-effect on Hepatitis C treatment. Women also have better treatment success, so for me this was an acceptable trade-off.

To date, my most serious side effect has been anemia. I have been anemic since week 2 of treatment. My hemoglobin dropped from 13.6 to 7.8 at week 4 of treatment, which almost caused me to be taken off treatment. I required a ribavirin dose reduction and a blood transfusion to get past that bump in the road. Since about week 6, hemoglobin bounced back up into the 9.0 range and is currently at 10.1.

It is this anemia that has stolen away a lot of my energy and made it difficult to keep up with my blogging.

As predicted by my neurologist at the Mayo Clinic, the anemia has also made my dysautonomia symptoms worse as well. Those include tachycardia, dizziness, heat intolerance and post-exertional fatigue. He added the drug Florinef to the mix at the beginning of my treatment to help pump up my blood volume to counteract the decrease in red blood cells.  It has made a difference. I can still move around the house and get out to doctor's appointments; I'm not bed-ridden like the last time I tried treatment.

Another concerning side effect was the mild retinopathy aka eye damage I developed by the time I got to week 8. This side effect is not uncommon during Hepatitis C treatment and is related to the use of pegylated interferon as part of my treatment cocktail. The absolutely good news is that this side effect almost completely resolved at my last eye exam at week 20.

For the last eleven weeks I've also been dealing with and managing:

  1. chronic diarrhea requiring major changes to my diet to manage it
  2. a very sore bottom from #1
  3. higher blood sugar numbers and a switch to using insulin
  4. loss of appetite and a 10 pound weight loss (that's OK with me)
  5. dry mouth and mouth sores
  6. a chronic cough causing by lots of post-nasal drip
  7. the worst fatigue ever (hello recliner)
  8. lots shortness of breath and more tachycardia
  9. more problems with insomnia
  10. major dizziness, complete with ringing in my ears
  11. severe sun sensitivity (I have to sit in the back seat of the car now)
  12. a couple of near fainting episodes when I pushed myself too hard (my bad)
  13. hair thinning (I know, just cosmetic and it should grow back...)

During treatment I have been completely reliant upon my wonderful husband Robert to do just about everything for me. It has been tough on him, but he is a real trooper and has reluctantly risen to the challenge. My treatment has been a huge stress on our marriage too, but I am happy to report that we have found a way to get through this together and our marriage will be stronger when my treatment is over.

He really deserves a treat and I'd love to hear your ideas on what kind of gift I should get Robert to show my appreciation when this ordeal is over...

Now my treatment has not been without some controversy.  I'd love to continue writing and tell you about  the mistake I uncovered two weeks ago, but I have run out of gas and need to stop here for today. If you have been following my updates on Facebook and Twitter, you already know bits and pieces of what has been happening. I do promise to post again later this week to fill you in on what happened over the last two weeks and how I got my treatment back on track.

Until then, be as well as possible--as my friend Jenni, the ChronicBabe, is fond of saying.

Wow!  I'm in the home stretch!
I've got 11 days of Hepatitis C treatment left.
Can you cheer me on to the finish line?

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