Tomorrow is my first appointment at Hopkins in about four months. (I usually see them every three, but it’s been a little longer due to some rescheduling because of work/the holidays.)
Last time I was there my lung function had gone down about 9% – from 75% to around 66%. Needless to say I was not pleased. BUT, it was my own doing – as usual, I’d been slacking on my meds.
Thanks to this here blog, and my readers’ wonderful support, I’ve been keeping up with my regular treatments about 90% of the time. (I knew this thing would motivate me!) I’m feeling better – can breathe easier, get winded less often, etc. – so I’m hoping my report from the docs will be a good one.
I’m always cautious about being too optimistic. Disappointment hits me hard. In the meantime I’m crossing my fingers, doing my treatments and trying to stay positive.
And to give those of you that aren’t familiar with cystic fibrosis an insight into what I’m feeling on the eve of an important doctor’s visit, I thought I’d share:
– Nervous. What if my lung function has remained the same? What if I do my medication and STILL can’t get it up to where I want/need it to be? What if my doctors nag on me because I’ve lost a few pounds? (More on this in another post.) What if they find a nasty bacteria? And the what ifs could go on forever.
– Scared. Of the unknown, the possibilities, and the realities of the disease. On the one hand, it’s one of the few places I can cough up mucus without feeling self-conscious. On the other, having CF is hard to ignore during these appointments – cystic fibrosis and my health are the focus for two hours. I see other patients with the disease and wonder how they’re doing… and if that will be me one day. Some are on ventilators; some have IVs. And I always leave feeling a little (or a lot) overwhelmed.
– Hopeful. I’m feeling good, sounding good, and on top of things – and I’m praying that it shows.
I’ll be sure to let you all know how it goes!