It's me and my new, shorter 'do to camouflage my thinning hair. |
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:
- chronic diarrhea requiring major changes to my diet to manage it
- a very sore bottom from #1
- higher blood sugar numbers and a switch to using insulin
- loss of appetite and a 10 pound weight loss (that's OK with me)
- dry mouth and mouth sores
- a chronic cough causing by lots of post-nasal drip
- the worst fatigue ever (hello recliner)
- lots shortness of breath and more tachycardia
- more problems with insomnia
- major dizziness, complete with ringing in my ears
- severe sun sensitivity (I have to sit in the back seat of the car now)
- a couple of near fainting episodes when I pushed myself too hard (my bad)
- 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?
4 comments
Glad to see an update! :)
I went to your facebook page, but looked all the way back to the beginning of June and don't see what I am supposed to see.. I mean, I see all your posts but I don't know which ones are supposed to stand out as important things that you didn't put in this entry... so I gave up on that!
Thanks for heading over to Facebook for a look. I know it's kind of a jumbled mess over there though because of the way Facebook organizes the posts (I have no control over it.)I'll be posting again later in the week and promise to share those details with you in a way that makes much more sense.
I've gone through 4 months of treatment that didn't work, and then 48 weeks with Incivek added, that did work. Hooray! However, (and why must there be a however?), its been just about a year since ending treatment and my bone/joint pain is still awful. My exhaustion has improved, but no matter how much, or little that I do by about 3:00 in the afternoon I'm hurting! Resting does not help. If I sit for awhile then walk, wow!, my ankles feel like I have heavy braces on them preventing me from walking. My hips make me want to cry out just lifting my legs into the car. If I keep moving I don't get the 'frozen' effect, but then I'm exhausted! I know I'm not alone in this from reading other people's posts, but my doctors have pretty much washed my hands odf it since they've finished their job. Oh, and the weight that I gained eating the required 20grams 3 times a day has not come off! Arguh!
I've gone through 4 months of treatment that didn't work, and then 48 weeks with Incivek added, that did work. Hooray! However, (and why must there be a however?), its been just about a year since ending treatment and my bone/joint pain is still awful. My exhaustion has improved, but no matter how much, or little that I do by about 3:00 in the afternoon I'm hurting! Resting does not help. If I sit for awhile then walk, wow!, my ankles feel like I have heavy braces on them preventing me from walking. My hips make me want to cry out just lifting my legs into the car. If I keep moving I don't get the 'frozen' effect, but then I'm exhausted! I know I'm not alone in this from reading other people's posts, but my doctors have pretty much washed my hands odf it since they've finished their job. Oh, and the weight that I gained eating the required 20grams 3 times a day has not come off! Arguh!
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