Friday, July 16, 2010

Can I Trust Myself?

Hey Colleen -

Sorry it's taken a while to get back. It was a pretty crazy week. I know that you read about my reaction to the Nafcillin in my Confessions blog. That was a huge bummer. It stinks to think that the entire category of Penicillin drugs won't be an option for me. I had a clinic visit on Wednesday and got my PICC pulled. I kinda spouted a bunch of blood. I soaked through a paper towel. I had to hold my arm over my head for about 5 minutes, while the Dr. put pressure on it. The removal itself was completely painless, though!

The thing that bummed me out most about the clinic visit is that my PFT's did not improve, not one little percentage point. UGH! They are not horrible, but I expected that all of that work would have given me some kind of tangible benefit that I could see on paper. Not this time... I do, however, feel good.

Here's my biggest fear right now... I don't know if I can trust my instincts to know when I'm going to need more treatments or medical intervention. When I had the 30% decline in my pulmonary function it completely snuck up on me. I had no major indicators that told me that my health was declining. My body compensated. I am going in to see my Dr. every 9 weeks, so I'm sure we'll catch it pretty quickly. I think having healthier lungs over the years, compared to others with CF, has given me a false sense of security. I've now just completed a tune-up and I can no longer hide in that comfortable state of denial. I have made a decision that I want to be extremely aggressive with my care from this point forward. If I have a choice between orals and IV's, I'm doing IV's. If I have a choice of whether to treat the mycobacterium that I cultured, I will choose to treat. I think the past year has scared me straight. I just need to work on learning how to "read" my body, like others with CF have seemed to master.

I know you wanted to update me about how it's been for you post-IV's. I'm hoping it's all good! Let me know...

Hugs -

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