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Off to NIH next week

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Hey groupies, giggle, I'm sorry I'm so out of the loop and really behind. It's been a really long week. Next week I'm going to NIH for my one year follow up visit for the HPS Pirfenidone trial. As always, I'm nervous. We'll do all the PFTs , CT scans, Dexa scans etc. so, after a year of being on either the drug or placebo (I don't know which) I'll sort of have an idea of where I'm at. I'm also nervous because I've been having some other HPS-related health issues and I'm afraid if they get worse, they'll kick me out of the trial.

I've been AWOL because I've had to prepare to miss a week of work. My boss is on maternity leave so there's no one to cover while I'm gone. One of my dear friends was also diagnosed with leukemia last week, so that's been another blow. I've been trying to help out with her family, child care etc. I am so tired!

Usually I about kill myself trying to get ready to go to NIH, and then I get there and fall apart during the week, sleep etc. I won't be able to do that this time.

I'm really stressed about my boss being gone for three weeks. I get so tired that there are times I'm struggling to do my job, let alone take on her stuff too.

Hermansky-Pudlak Syndrome/PF 06

www.heatherkirkwood.blogspot.com

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