Saturday, April 17, 2010

When There Simply Are No Words

Pictures from dry run #4:

Let the waiting begin!

Mom does crossword puzzles to pass the time.

Off to the OR -- I snapped this from the gurney because I still had my phone.

OR Holding Area. Cute couple, huh?

In case you're wondering what you look like when they tell you no go...it's kind of like this.

I made mom wear the hat since the surgery was canceled.

Four. No Explanation needed.

My hospital bracelet, with the patient ID stuff blacked out (not that I don't trust you guys but, you know).

I'm a little bit sad and a lot exhausted at this point. Thank you again for all the support, and please keep the donor family in your prayers tonight as well. Neither of the lungs were good, so both the backup and I were sent home with our old airbags. I just also want to publicly thank the team at Columbia for being so discerning and cautious when it comes to doing transplants. If nothing else, I find it hard to believe that the lungs that are coming for me will be anything less than perfect at this point.

I love you all beyond words. Seriously.

24 comments:

  1. Wow girl. You have been thru so much lately! I pray that you can get rest and that new perfect lungs will find you ASAP!

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  2. Oh man Piper I'm sorry! :/ I heard you got the call and first thing this morning I couldn't wait to see if it was "it." Sorry for the disappointment. However I agree the lungs that will be yours WILL be perfect!! We love you and admire your strength! Xo

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  3. Piper, you don't me from Adam (or Eve), but my long time friend Geoff Parker asked if any of us who love him would hold you in our heart's little hands and send some good stuff your way. So here's my contribution---if it's good enough for GP it's good enough for me. Hang in there--the universe will find the lungs that want to be with you.

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  4. Biggest hug to you piper. Thinking of you. xxx

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  5. I woke up this morning and your blog was the first thing I checked to see if you had your new lungs. Im sorry that you had another dry run. You are an amazingly strong woman..I honestly dont think I would be able to be as positive and pulled together as you are if I was in the same situation. Stay strong cyster! XoxoX

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  6. This was the first thing I checked this morning, thinking of you. ((HUGS))

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  7. ... there really are no words, but sending tons of hugs and love your way... you are right.. only perfection for you!

    God Bless,

    Rocket Man!

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  8. Piper we are all here for you, all of us waiting for lungs can understand the sorrow. I'm really sorry, that is no comfort but all I can offer.

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  9. Um. Wow. At this point, I don't even know what to tell you. I think you've been told everything you can be told...you know...the "stay strong" "have faith" "those lungs are waiting"....

    I think it's fair to say though, that you have paid your dues, and this is the universes way of saying "just one more for the road" when it comes to jokes.

    In all seriousness though, everything happens for a reason.

    We all love you bunches :) Keep your head up, you're now officially a professional dry runner :P

    Lots of love!
    Chelsea

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  10. Oh my. :( That's so not 1 not 2 not 3 not 4 what I was wishing! :( But at least it wasn't a "damp" run this time. Hang in there Cyster! {{{{hugs}}}} ~Juliet

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  11. Oh honey. I send you virtual hugs and very real love. I surround you with it - and with my prayers. Your lungs ARE coming and they WILL be PERFECT. That is what I pray and have faith will happen. Love you, love you, love you...

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  12. Again, I am speechless. ((((Piper))))

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  13. cute gowns at least ;)

    hate that you have gone through this so many times. Love you girl!

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  14. Are. You. Serious?

    I can't believe it. So sorry (again)

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  15. I'm so sorry it didn't work out. Thank you for your honesty and letting us share your experience. You are so strong. Blessings to you and your family.

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  16. I know this is a major drag having another dry run. But we know your docs won't give you anything but the best lungs possible! Sending love and prayers your way.

    Mommy2Zeke on the CF.com board

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  17. Resilience, thy name is Erin....and all the Beatty family and friends.

    Great lungs are so much better than quick lungs and obviously your team has you designated for great, just like you.

    By the way girl, I check in to see how your progress is coming and am taken up, blown away, entranced and entertained by the quality of your writing, humor, wisdom, and originality. Are you sure you studied to be an attorney? And how did they not train all that out of you. All the Martins are pulling for a newly aired up Piper...the sooner the better!! If you can transfer luck like mileage points we officially give ours to you! love, Jere

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  18. Once again, can't believe it...so sorry.

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  19. Piper . . . there is something SO special about CFers. My best friends son is a 35 yr old CFer with a wonderful wife and son! He is one of the neatest people on earth as is Sharlie K and now, reading your blog, I KNOW you are an incredibly special person too. You are in my heart and I am sending you MUCH loving and good energy for your journey. Thank you for being YOU!!!
    Laura Brownwood
    laura@the-beachhouse.com

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  20. So sorry to hear about the disappointment. Hoping the "right" lungs are found soon! When you say Columbia - is it the one in NYC? That's where I go...

    Wishing you all the best!

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  21. Praying that the next set of lungs will be the most perfect lungs JUST FOR YOU ;)
    M
    PS. Thanks for commenting on my question on CL about Streptococcus Pneumonia:) It really helped put my mind at ease:) You're awesome!!

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  22. Hi Piper,
    You have such a beautiful smile. Thanks for your smile and your story.
    "We cannot live for ourselves alone. Our lives are connected by a thousand invisible threads." H Melville
    What a wonderful network you have here. Inspiring!
    Love you, Louise & Dave

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  23. I'm sorry it was another false alarm.

    If it's any consolation, you rock the gown and hat look better than anyone I know. Xx

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  24. Piper,
    I didn't have the luxery of waiting for perfect lungs, and my setbacks have shown that. But, they came when I needed them and saved my life.

    Your lungs, the perfect match ones, wi1l be there when you need them and they will make your recovery as simple as can be. Cuz they were patient and perfecr for you.


    Hugs to you cyster,
    Dewgirl

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