The fever finally broke last night and I got a good night's sleep and have been up most of the day today. In my chair or on the couch, but awake.
I went to the clinic this morning and saw Dr. McGuirk. He took me off the daily antibiotic ramped up the prednizone again. He says what is going on in my gut is definitely graft vs. host and it's too soon to let go of the steroids. So instead of taking the last half a prednizone this morning, I took 6 of those babies today. Since I'm not sure how I feel now, I don't have any idea how I'll feel when this all kicks in.
So this changes the game plan a little bit. We're happy to have some graft vs. host, but internal gvh is the toughest to deal with. It takes some GVH to make a transplant stick and last time around I didn't have enough. So the protocol this time called for several changes designed to incite GVH. One was to wean me off the immune suppressant drugs earlier which we won't be doing. I'll be taking those drugs for the entire 100 days. They are the primary reason I must continue to be isolated.
I walked on the treadmill today til my body said I was finished. When I walk for only 2 minutes that is less walking than a turn around the hallway at the hospital. It makes me want more. I also need to get the Wii Fit into action again to work on my balance. Dr. McGuirk said the prednizone weakens your thighs quickly so it's important to keep up the working out.
I have eaten tons today, I swear. Constant eating. When I consider that nothing tastes like it should, this is a real accomplishment. But I must gain weight. Protein, protein, protein. Thank goodness I like beans.
Life is dull but comfortable. I don't have much energy but I'm not bored. I cannot remember if I have been here before--perhaps you guys can remind me. I just trust that as I gain more energy I will regain interests.
Cathi
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4 comments:
Hi Cathi
You're incredible! Only just released from a really tough stint in the hospital, and already you're pushing yourself to do more!
So pleased there's graft vs host tussles, and food may taste weird but at least its going down and staying down.
Keep focused, surround yourself with positivity and allow yourself a big grin at how well you're doing.
Been thinking about Rogaine - perhaps an alternative could be a herbal/homeopathic remedy? Then you're not adding more to the present drug cocktail. Cranial massage might be a nice treat?
lots of love #2 GOT
ps: got up REALLY early for pole position
wv: imenb. how about i-woman-b
Good morning!
I'm not sure if you wrote how often you have to go back to the clinic right now, but I guess that you are making good use of all the time you DON'T have to be there.
This is very exciting Cathi. I don't think you were here before - especially since you didn't have gvh disease to this extent. The fact that you're on email and keeping us all informed is huge.
Sending you lots of love & hugs & energy!!
love, gail
Cathi,
You are quite a fighter! I am right behind you, thinking of you all the way to your certain success over this.
I miss seeing you, would you like a visit? I promise I will make it short.
I wish I had an idea for your hair, I have been lucky in that department although it is as gray as it gets. I loved the way your hair looked last time I saw you.
xoxo Skip
So glad to hear it's graft vs host although I know it's a very tough situation for you! Remember that prednizone can do crazy things to you and that's okay right now because you need it to get better!
You have always been a fighter and always looked on the positive side of things. You have always continued to move forward even when people didn't think it was possible. You will continue to do that and your post day continues to show that. So keep on marching forward and enjoy getting the marbles in the holes on the wii!!
Love-
Margaret
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