Tuesday, June 15, 2010

Ugh...

Not too much new to report.

I think Pip summarized it best:

Today was rough but better. Slept some and was able to interact. Still feeling somewhat shitty to be honest. Mostly hot and out of it.
Love you all!

Although visibly uncomfortable, she is improving. She's sitting up for an hour each day, and scheduled to leave the ICU whenever they can find her a room to herself.




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16 comments:

  1. Juliet PageJune 16, 2010 at 12:06 AM

    Oh Piper! You're such a champ. What a relief to hear that the whole tx thing is behind you now. Glad to hear you're doing so well... even if you describe it as hot and shitty! LOL. I wodner if Apple makes fans? Surely there's an air moving iPod/iPad/iPhone toy to go with your collection.

    It sounds like you'll be jogging out the doors of the hospital soon. Can't wait to hear what your new lungs feel like and all the details use cysters just must have. :) Many {{{hugs}}}.

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  2. Juliet PageJune 16, 2010 at 12:08 AM

    I meant to say... relief to hear that the whole *waiting for* tx thing is behind you. :) Heal fast!

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  3. David BrockJune 16, 2010 at 1:05 AM

    Ugh....hey girl, that's better than some alternatives. Glad to hear you are still kicking-hang in there!

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  4. AnonymousJune 16, 2010 at 1:29 AM

    I'm sorry you are feeling like crap but it sounds like you are on the path to breathing easier.
    May you continue to be surrounded by friends, family and love.
    -Denise

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  5. OceanDesertJune 16, 2010 at 1:43 AM

    Picturing you feeling stronger and more comfortable every day!

    ps. Can't remember if I mentioned this or not.. I also was on the warm side after tx and we were able to bring a fan into the room... brought some relief..

    hugs! You're getting there!!

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  6. AnonymousJune 16, 2010 at 2:35 AM

    still doing great, fantastic :) xxxx

    Wanted to ask about the tshirts, any chance of getting some over here in Australia? Just thought you might need a project while you're laying around in bed doing nothing :D XXX bless you Jo (dasjsmum)

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  7. LeahJune 16, 2010 at 3:39 AM

    i had a fan and cold washcloths! i was super hot! it will go away! (obviously) hang in there!

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  8. AnonymousJune 16, 2010 at 9:46 AM

    sending the love right back to Piper and all of the Beattys!

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  9. AnonymousJune 16, 2010 at 9:47 AM

    from anonymous Laura in Bozeman :)

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  10. AnonymousJune 16, 2010 at 10:51 AM

    Piper, you are doing so great!! My mom and sister keep asking me how you're doing, as I've kept them updated on your progress. They keep telling me stories about my time in ICU post-tx, like when I had no voice and tried to get the nurses attention by flinging a cup of water into the hallway. ;) I remember being soo hot afterwards that someone brought me a small oscillating fan for my hospital room- best gift ever!! It will get better, as will the feeling shitty" part. You'll be running up and down the halls in no time!!
    Thinking of you every day.

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  11. SeansjeepJune 16, 2010 at 10:58 AM

    You are doing great! Think life only gets better from now :) I cant wait till im done TX. I have so much planned!

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  12. TaraJune 16, 2010 at 12:49 PM

    Keep on keepin' on Piper! I heard rumors you are trying to beat Patti's 12 days in the hospital after transplant! I know the pain sucks, and I know I have nothing to compare it to, as I have not had a transplant, but if anyone can get through this with grace, it is you! I'm still giddy with excitement when I think of you breathing with your CF-Free lungs. Wow! Go Piper, Go!

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  13. Princess JessJune 16, 2010 at 1:53 PM

    Just think, you're getting the hard part over with! Pretty soon you'll be out tearing up NYC properly! I can't wait to live vicariously though you.

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  14. AnonymousJune 16, 2010 at 2:49 PM

    Piper, my very first thought this morning was appreciating the breath that filled my lungs as I opened my eyes. I hope that once you get used to your new set, you will feel it, too. Thank you for reminding me to appreciate those things that some of us take for granted. Thank you for sharing your experience along the way, and thank you for being such a shining, happy spirit through such an arduous process. I know you hear it all the time, but you are amazing, and you really have inspired me to be stronger, more patient, more giving and more grateful. You really have no idea just how much you have done to make this world a better place. Wishing you the best in your recovery...
    -Tess

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  15. Lucy's momJune 16, 2010 at 3:00 PM

    GO PIPER GO! Keep it up! You are so strong and brave, and Lucy and I are rooting for you! :)

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  16. UnknownJune 17, 2010 at 2:42 PM

    Keep up the fight, Piper! I'm just getting caught up now and I'm amazed at how much can happen since the CF walk a few short weeks ago. I am so excited and touched to hear that you got off the list!

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