During the first round of treatment I felt no different for the first six weeks. Weeks 7-12 were terrible and bedridden the whole time until I blossomed into a new flower on week 13. It was uphill from there until the carbon monoxide issue...
I was only off the Valcyte for 2.5 months and it seems I have to restart the whole process all over again. I'm starting week 10 tomorrow and the past three weeks were the absolute pits.
I was up all night last night with bowel spasms. Sure enough I check my journal from last year and I had bowel spasms for a week during week 7 so I still have a few weeks to go before I blossom into a flower or crimple up like a dried up old seed lol. My only hope is that I bounce out of this and not made myself worse by going back on the drug. I'm resting plenty though (no choice).
The good part is that although Im in crash mode, mostly housebound, feeling absolutely awful and spending a lot of time in bed, I am still in better shape than Pre-Valcyte, round one when I was completely bedridden and unable to look after myself at all.
If I had known I was restarting the whole process again, I would have pushed to not come off the Valcyte after the 15 months.
Like a lot of us I am taking way more steps back than forward with this horrible illness but what counts is that I keep taking the steps