This is my first attempt at a post in weeks. I wish I'd had the creative energy to write more and keep you all up to date. Who knows, the way things are going this could be the last update I do for quite some time. Let me illuminate.
Since leaving the hospital 9 days ago I've had one major problem to combat, on top of everything else that goes along with just having had a bone marrow transplant. Weight loss, due to steroids, especially muscle loss is my current plague. I entered the hospital at 163 pounds and a resting heart rate of 65 beats per minute, I'm now just under 140 pounds with a resting heart rate of 90 - 105 beats per minute. Starting three days ago the vascular issues have caused me to feel constantly dizzy; I white out when I sit, I white out when I stand, I even white out when I go from standing to laying. It is very unpleasant and has substantially lowered my quality of life.
To fight the problems mentioned I do three things: cardio exercise on my recumbent bike, eat ~3000 calories a day, and lightly exercise any muscle I can every day. All three of these tasks are very taxing, considering my present condition.
I believe I'm still losing at least .25-.5 pounds a day, hopefully not. The steroids aren't set to taper off until the beginning of September. I won't make it that long. Hopefully I can work out a faster taper with the physicians. I've seen myself at 130 last year, I really don't want a repeat. I don't have the strength to rise from the floor at 130.
So, other than those serious issues, life is great here at home. Well, Emily has a cold. So I'm dodging that too. For me it'd be guaranteed hospitalization with pneumonia if she shared the cold. Having a non-functioning immune system is nothing but kicks and giggles.
The GVHD is going well. I'm able to eat most things with no problem. Milk is an enemy still, spices don't play nice always, and I still haven't played with tomatoes or legumes. I will conquer all eventually. Lactaid pills work to get me past heavy cheese. Animal fats don't bother me. Bacon is my friend.
My world is a bit small today. I can't seem to bring my mind to the 50000 foot view. Being fatigued and hurt probably has everything to do with that. I would like to write about more pleasant realities but I don't think that's about to happen. And, since my back hurts I'm really incentivized to call it quits here. All of you wonderful people out there cheering and pulling for Emily and me, thank you. We're still in the thick of this thing, hopefully that changes over the course of the next two months. I'm looking forward to being on the mend.
The picture of the day is from earlier this year, Max and I were both hairier than we normally are:
Sorry you're not feeling so hot right now! That sucks :( but it's great that you're home & eating & attempting exercise. Let us know anything we can do to cheer you up, ease your pain, or fatten you up ;) stay strong! Love you guys!
ReplyDeleteRyan!! I still can't believe u r home??! That trumps all. So sorry for the crappy times- I can relate a tinY bit there feeling like total Shiz all the time.
ReplyDeleteI hope the time passes quickly and soon the good things will be so overwhelming and worth it all!! Loves
So glad you're home, can't wait for you to get off those nasty steroids. Jake and I want to come play a new game with you when you're up to it. It was great seeing you last week, take care :)
ReplyDeleteim so glad your all back together at home again. I hope Ryan can rest better there
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