Its amazing how you can be sick and not even know it!
I had clinic today and we knew going in I would need a clean out. My numbers were down slightly last clinic and Cipro really didn't do much for me. I am more SOB and my energy level is low. I cough all the time, as usual but I mean really cough. I have an admission scheduled for next Wednesday, the 12th.
Seems I am on a somewhat downward trend. I get back up but my lows are pretty low!
Today I blew an FEV1 of .93L or 32%. Last clinic I was 1.10L or 38%. And the healthy clinic after IVs were stopped I was 1.28L or 44%. And last time I needed IVs (May) I was at .95L or 33%. Before that I was 1.08L or 37%. See where I am going with this?
I go up and then come back down. I go up and then I come back down.
Oh well....that is the nature of CF correct?
Today though I was completely overwhelmed. I am working hard to get everything scheduled to be presented in November for transplant and to get things ready for the wedding and starting back to school tomorrow. I just had a "I want to hide all day in a cave and not come out" kind of moment on the way home from clinic. I felt overwhelmed by the never ending appointments for CF and LS. Bu constantly having to do this test and that test and go here and go there. And all so I don't get cancer and I can stay healthy.
Then I started thinking about transplant again and if I really want it and will it be that bad to not get it and how long might I live without it. I am not dying so I could potentially have another 10 years with these lungs no matter how crappy. Or I might only have 2 years. I dunno. Maybe once I hit the "dying" phase I will be more sure of things? Maybe I will be more confused? I dunno. All I know is that I try to abide by my dad's company name - ODAT construction (One Day At A Time).
And furthermore, as I was leaving clinic I was just so bummed about my old doctor and not seeing him. I really miss my old clinic. I don't like going to a children's hospital. I don't like having to wait downstairs for 1/2 hour because there isn't a room ready for me (appointment was at 11 I didn't get in till 11:30 which is rare, usually they are on top of it and I don't wait). I don't like the traffic and the parking garage and the parking fee and well you get my point. It was just one of those days ya know....