Judgement Day

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!

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13 thoughts on “Judgement Day

  1. Good luck today! It can be hard to keep up with meds, but maybe the docs (or social workers!) could help you figure out a more convenient way of taking them or remembering to.

  2. I hope it’s good news! And if your lung function isn’t where it needs to be, I hope your doctor can be helpful and give you positive guidance.

  3. Wishing you lots of luck today. I’m sure these appointments are overwhelming – but you’re doing great with getting back on schedule with your treatments. Keep it up!

    You mentioned that you can’t be around someone else who has CF – how does the doctor’s office handle this issue? Just curious.

  4. All you can do is roll with what happens, including your fears. And then you can let us know how it goes. We’re here to support you.

  5. My fingers are crossed for good news for you!! Good for you doing so much better on your treatments–whether it reflects in the number or not, you know it’s been helping if you’re breathing easier. Don’t be too nervous! 🙂

  6. Oh wow, thank you for this post. I know the appointment is now over, but I will keep you in my thoughts. What a great blog idea. I’m glad you commented on mine so that I could find you!

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