Thursday, April 9, 2009

Breathe for Me, Baby

Update: Day 3
  • Number of IV antibiotics currently prescribed: 3
  • Number of IVs discontinued today: 1 (bye bye, solumedrol!)
  • Number of unfortunate talks with my doctor about abhorent feeding tube suggestion: 1
  • Number of "Boost Plus" drinks subsequently consumed after said conversation: 6 (!!!)
  • Number of hours sleep possible to obtain at a hospital: one of life's mysteries, but low
  • Number of stupid questions (e.g., "how long have you had CF?"): 3 and counting
  • Number of snarky answers (e.g., "27 years, 4 months, 13 days"): 3 and counting
  • Number of blood draws: don't ask
and finally . . .
  • Number (percentage) of O2 saturation on ROOM AIR tonight: 92% (!!!!!!)
My doctor made it very clear to me today that the only thing holding me here in lock up (and away from my puppy!) is my unstable O2 situation. She's going to be off tomorrow and Saturday but back on Sunday, so she tenatively wrote discharge orders for Saturday, BUT she put in the orders that if my O2 is consistently above 90 on room air by tomorrow afternoon, I can leave. And likewise if it is not by Saturday afternoon, I have to stay. Sounds like a reasonable compromise.

I am SO psyched about the possibility of early jailbreak. Sammy! Showers! My own bed! Sammy! Good food! Easter! Sammy! And yes, I admit I'm obsessed with my puppy. So sue me. No, really, please try it ;)

My friends have been awesome - I've had visitors constantly and a steady stream of non-crappy outside world food. Which is good because, as I mentioned above, my weight is about to become my new battlefield. I have to have a BMI of over 19 by the end of summer/early fall to avoid the dreaded tube. And considering I'm currently 18-18.5 on a really good day, that might be an interesting challenge. Although honestly, I respond really well to ridiculous goals, so here's hoping.

The other update is that I'm officially going to take some short term disability from work, but only for a few weeks, just to sort out this current infection and hopefully get things in a more stable position. And then I'm going to work out how I can stay on and be a productive member of the firm on terms that actually work with my health. I'm not worried at all about my law firm's role in this - they've proven themselves more than understanding and very wonderful in the face of a crappy situation - but the challenge is just going to be me. I need to set boundaries, I need to stick to them, and I need to start realizing that slowing down is not giving in to CF; it's another way of fighting it and NOT letting it take control completely. So I know I'm a bit thick-headed that it's taken me 27 years (and counting) to figure that out, but I swear I'm almost there. Almost.

I am hoping that if I'm not completely focused on work and health that I'll have more time/energy for the rest of my life and won't have to kill myself trying to pack that all into the weekends. So maybe this will be a way for me to take back part of my life, rather losing any more. Maybe.

But for tonight: 92% saturations on room air! Come on baby, breathe for me ;)


  1. I'll try to go from 19.0 BMI to 19.5 just for you :D

  2. YAY!!!!!!!!!!!!!!!!!!!!!!!!!!

    I so hope you can go home tomorrow!!!!!!


  3. If you ever need a swift kick in the butt you know where to get it... HAHAHAHA.

    I'm crossing your fingers that you can go home. Hospital = hell

    Take care :)

  4. I know Sammy really wants you home!!! I'm really hoping you get home tomorrow evening!

    "Number of stupid questions (e.g., "how long have you had CF?"): 3 and counting" ... I've seriously never had anyone say this to me at a hospital before. Unbelievable!

  5. I hope you gte to go home tomorrow and stuff stuff stuff your face!!!

  6. Awesome!! Ill keep my fingers crossed its a early get out of jail free card for you...

    There is nothing wrong with being obsessed with your pup ;)

    I love your answer to the dumb ? we all get "How long have you had CF?"

    I always say when the sperm met the egg :)

  7. Praying your o2 will stay above 90%so you can break lose!! YAY!!

    I'm glad your firm is so understanding...that always helps! I'm praying that you can fight this infection for good!

    Also praying you can keep a BMI of 19 or more! I know that's hard to do. I had a feeding tube placed a the age of 10, but only kept it until i was 13 or 14, due to the amazing results from Megace. Have you tried appetite stimulants??

    and like the other commenters..i love your "stupid" questions bit!

  8. Great 02 sat!!! I'll cross my fingers for an early jail break.

    I love the "number of boost drinks consumed". That was one of my major battles prior to tx. I would put stuff in my pockets when I was younger so I would weigh more! No joke. I always hated the "treat" of the j-tube. I would always do really well with the Ensure after the "talk". LOL!
    The day of my transplant, the surgeon was not happy with me, I was 86 pounds. She was afraid it would affect my recovery. It didn't...but she gave me a pretty good lecture.

    Sometimes I think i wanted the j-tube so I didn't have to make such an effort all the time. But, I didn't want another TUBE!

    Hang in there!

  9. Well done Piper!
    Great o2 sats!
    I hope you'll be home by tomorrow evening