Sunday, September 16, 2012
It's kind of hard to wrap the head around being back in the hospital after being out nearly five months. I am a much better patient now then I was before my transplant and time on the vent. Much more relaxed, but I think that has to do with how I feel. Meaning, with my cf lungs I went in to the hospital not feeling well and never feeling better when I left, just more drugged. I also always worried my port would get neglected and clot off, that no longer exists. Now i try not to get bent out of shape when my meds aren't on time, I try to give more leeway. I draw the line at my transplant drugs, 45 minutes late I start getting a little edgy, for the most part they are on time.
The frustrating part is I had felt so good until that first bronch just over two weeks ago and then it all went haywire. I am glad the bronch revealed the ugly fungus that is in there but not happy with how the bronch left me feeling short of breath. I am trying to keep my frustration contained and in perspective, this is the land of transplant. The ground at times is firm but sometimes shaky and you never know when you will return to the solid ground you were happy to be on.
There is no one path that transplant takes, and you never ever forget you are living on borrowed time. You can go about your day, plan your life, dream those dreams of things to do but always in the back of your mind is the fear that it will all slip away. You try not to dwell on it but it's like getting a song in your head out of nowhere. You sing the song for awhile then get annoyed and it goes away for some hours or days then boom, it comes back. The mind is the worst trap and the one thing you can't run away from.
I don't think I will ever know a normal life, which is nothing new since it was far from normal before. I just have to figure out how to define my life. Right now I am so scheduled with meds my day is full and they make me feel sluggish also. I hope someday this pseudo and fungus will remove itself from my lungs. I won't hold my breath but I will hope.
I have had nearly eleven great months, grueling and hard at times but I wouldn't give them back for nothing. Life is not guaranteed perfect nor is it ever defined as smooth. Life is ever changing and undefined. If you are lucky enough to do something you love every so often then life is good. Eleven months ago I had no future plans because I wasn't sure I would survive another week or month, but here I am. The only plan I have now is the one to take this day and enjoy it. It is the only one any of us is guaranteed.