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Valcyte - 4 Months, 2 Days

Blog entry posted by ArgyrosfeniX, May 15, 2012.

Hello Everyone,

Can't believe it has been so long already! :aghhh:

As noted in some of my last blog entries, I was having problems with my employer and trying to hold onto a job that was relatively easy for an ME/CFSer. Everything came crashing down when my boss pushed me too hard and I crashed. Hard. Attempted to take medical leave and was denied. Thankfully, they were willing to pay out my vacation and sick leave before we came to an agreement for me to leave. All in all, it was 6 weeks of hell (hence the lateness of this update).

I spent most of that 6 weeks recovering and taking out a loan to cover medical expenses for the time being. Most of that was to cover the $1,100.00 a month for COBRA to cover the $3,800 a month that the Valcyte costs. Eek!!

Since March 15th, I started working for a company that does agency work for RNs and was able to work in the Emergency Department at a few of them (this was after I was feeling mostly better). I've been increasing the amount of work I do (I went agency as they pay more so I could work less) for the agency as I've been getting better and slowly increasing my stamina. I'm now able to work almost full time in a busy ER again! Whee!!

This past weekend, I did something stupid though - I ended up being really busy and ended up staying awake for 36 hours straight. Was just fine until the next 2 days (yesterday and the day before)... Felt like I had crashed and had to work during that time. Felt miserable after the first 10 minutes, but was able to pull it all off. Whew!!

Taking today off even though they offered me a shift tonight - felt like I needed the rest to catch up. Rest and sleep - good!

Saw the doctor a few weeks ago and had my blood tested again. Had been taking folate and B-12 supplements to try and detox my liver due to the last set of lab results and some friendly suggestions by readers of my blog (Thanks Guys!!). They worked really well and my LFTs are back within the normal range. W00T!!

I'll do my best to not take so long for my next update. Hopefully, life has settled down for a while and I can get back to the things that really matter. ;)


=== BY THE NUMBERS: ===
Weight: 260.1 lbs

Activity Level: 8-9

Current Dosing: 900mg Daily in AM.

Lab values of note:
  • AST = 32 -> previously 44 (norm 10-40 U/L)
  • ALT = 48 -> previously 66 (norm 9-60 U/L)
ArgyrosfeniX

About the Author

Living with ME/CFS since the age of 16 (1989). Was persistent enough to get three Associates Degrees and get married through it all. Working hard to keep going for as long as I can before becoming bedridden. Current treatment plan is to use Valcyte for 2 years starting January 13th, 2012, then possibly switch to Valtrex for an indefinite period. "Here I am trying to live, or rather, I am trying to teach the death within me how to live." ~ Jean Cocteau
  1. ArgyrosfeniX
    You're correct, of course, justy. 8-9 is good, but that's on the days that I'm well rested. Seems that I drop off some after a few days of work - I keep soldiering on though. Just got through a rough spot and am using the 6 days off right now to recharge. I'll do my best to keep things under control. Thanks for the well wishes justy!

    I heard from one of my other readers that there is a noticable improvement stage at about the one year mark when on Valcyte. That would be awesome if it's true! I feel that my gains this time on the Valcyte are not as dramatic as last time. Not sure why that is... Could be the disease has a deeper foothold on me this time, or the 1,800mg initial dosing for 3 weeks last time killed off more of the bugs faster. Hence a quicker recovery. Good luck with your recovery heapsreal!
  2. justy
    Hi, ive been wondering how you are doing! Wow! up to an 8/9 - thats a very good increase. Sounds like you are pushing yourself hard though. Take care, wont you. You dont want to lose the gains you have made.
    All the best.
  3. heapsreal
    good on ya, keep the improvement going. Im watching your blog with interest as i am also on valcyte the last 3 weeks with famvir. Im having an inkling of feeling better from it too.

    cheers!!!
    ArgyrosfeniX likes this.