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Valcyte 2013- Week 21

Hello Gang;

Sorry I haven’t posted any updates lately. I think I was waiting to see if there would be more change in my improvement, I also wanted to wait to receive all my lab results. I am still doing really good on the Valcyte with no side-effects whatsoever. I went from being bed ridden 90% of the time before Valcyte to being out of bed and dressed most of the day with a 2-3 hour nap in the afternoon. That in itself is incredible!!!

I have been able to make some meals, light housecleaning, I even painted some moulding for our bedroom yesterday!!

Last week wasn't as good with too familiar feelings of weakness and heaviness and probably just my body reminding me that I am still sick and to take it easy.

Now I am to the point that I feel I am getting greedy. I want to be somewhat normal again and I know that is a lot to ask. I seriously have to pace myself but I can get around my two story house. I am still very much housebound as any outings are still very difficult with sensory overload. I would so much get well enough to be completely independent. I have my fingers crossed that I will be able to drive again and walk enough to get into a store and get some groceries. I haven’t been able to go for any walks or anything yet because I need that energy to get around in the house. Even though my family and I have maintained our sense of humour through the tough past 3.5 years they are even happier now seeing me out of bed and on the main floor. Being able to make supper after 2.5 years is amazing!!

I received my (3 month on Valcyte) viral testing back. The EBV barely decreased at all, the HHV6 stayed the same at 1:160 and my Natural Killer cells went up from 6 to 9 (tested Aug 2011). My doctor wants me at 60. I should have my phone follow up with him hopefully next week at which point I will ask if I can go on Immunovir.

So much is different now especially dealing with people which I was sheltered from for so long. As soon as some friends heard I was doing better, I was asked right away when I was joining the ball team again and when I was going back to work. People don’t realize I haven’t been able to use my body, my mind for over 2.5 years but I can just jump back on the ball field! LOL.

I was at a store with my family this week and of course still need my wheelchair. The cashier right away asked me what kind of adventure got me in the wheelchair and how I got hurt, I told her it was a long story and she wouldn’t drop the subject. She then leaned right over the counter and asked me if I had arthritis!!! Needless to say we laughed all the way home, we just couldn’t believe how nosy she was LOL. Everytime we travel to get to medical appointments I always get approached by airport staff, at security for example and get asked, “ok what did you do?” in a teasing manner or “partied too much?”. Just because I don’t physically look sick people assume it’s just an injury and not an actual condition or illness which got me in the chair. I never would have guessed that people come right out and assume why a person is in a wheelchair. I do have to admit that even on my sickest days I managed to throw on some makeup which makes me look quite normal. I am so bad that if I ever got into an accident I would probably manage to put on some lipstick before the ambulance arrived! LOL:lol: I am francophone what can I say ;)

Well that’s it for now guys, enjoying the new quality of life I’ve been given and am extremely grateful and happy!!!:thumbsup:


thats sounding promising. if u have improved now then at the 12 month mark u should be doing better, hopefully. its abit scary when starting valcyte as one doesnt really know if they are going to be a responder or not or how bad a ride its going to be on valcyte etc. it looks like your on the right track.

good luck,
I am so happy for you! I am also seeing some improvement. I have been diligently taking SOC's advice to take it easy and not push myself. It's hard some times. Thank you for keeping us updated. I'm crossing my fingers we will be back to our old life soon!
How fabulous is that! I'm sure rooting for you RU. And had some laughs reading your post especially about makeup. Enjoy but please be careful! xo
So glad to hear of your recent improvement. After 10 years of illness, I am on my way (literally, I am writing this on the bus!) to see doctors who may actually try to help me. Knowing that there are doctors who really do care and are competent has helped to give me the courage to arrange this trip - the furthest I've been from home in over five years.

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