Sunday, June 13, 2010

Live from New York...It's Sunday night!

Hi everyone! It's me!

Good God! She typed that all on her own. Just stumbled in on her eating her first post-transplant smart-gel!

Here's what she has to say for herself (this time I'll type!):

Not much to say.
I did my vest.
I got some rest.
I passed the test!

Well folks there you have it! She she got a transplant and came out rhyming! It's a good day!

Much love. As requested, by her, I'm reading Piper all of your recent posts right now!



- Posted using BlogPress from my iPhone

50 comments:

  1. WOW that's so cool, Piper. You're some species of Super Cyster. I hope you can teach us all your tips and tricks - I, for one, want to be like you!

    I'm dying to know what the smart-gel is? I'm guessing it's some sort of special tx food? Idk.... I'm out of the loop I suppose.

    I'm also excited to see a picture of you with your fresh new color now post-tx. I bet you look wonderful!

    Take care, Piper. I'm so overjoyed you are doing so well.

    FIGHT ON

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  2. Your sense of humor never ceases to amaze me. I would expect nothing less even after major major surgery. :)

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  3. This is a blessing... I am beyond words.. Piper, you have been an amazing example to me of what it means to live. You were tied to your concentrator, on IV Abx so much of the time, the port debacle, and you continued to live happily and entertain us with your quips and quirks... I have truly and honestly, through knowing you on this blog, come to understand what a woman looks like when she lives...I hope i can make half the impact you have...

    Dare to continue to live, smart gel, chest tubes and all...We all need you.
    Tara

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  4. Piper, LOVE YOU!! When you are feeling up to it (you let me know) I'm going to fly out to NY and hug you for real. For now, long distance cyber hugs from MN. And, Erin - hugs to you and your parents, too.

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  5. Piper: Your doing AWESOME...keep up the good work. Max wants to come to NYC to visit you, Sammy, and the Statue of Liberty. Tell Mike, Kathleen, and Erin hello. (...I realize Erin is reading this but we will play along...)

    Allen, Mary Anne, and Max McDaniel

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  6. Darling Piper,
    I've laughed, cried, gritted my teeth, and prayed that you would sail through this "procedure" with the grace and determination that you have always shown (well, somethimes not so much grace). Ann Marie are sending you our best hugs and kisses and thinking of your exhaused family as they watch your remarkable recovery. I love you so much; I can't wait to see you.
    Mother Unit 2
    Judy

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  7. You go girl!! All of you new friends in Southbury, CT are rooting for you. You are an inspiration to me. Lorie from the Sby Women's Club...and ps..thanks to Lauren for sharing this joyful news.

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  8. Miss Piper has new lungs,
    this time not a false rung.
    No more dry run ballads,
    to be sung.

    With her trusty iPad,
    she types, it's rad.
    And with these updates,
    who could be sad.

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  9. You know what the first thought was that went through my mind when I heard you got your transplant? I thought, "Yay! I'm going to get to meet Piper in person someday and you won't have to be afraid of catching my lung butter cooties!!!"

    I was taking to Bitty last night and I was saying you are one of the people that I feel like I've already met. I "know" you so well because of chat, because of cf2 boards and because of your blog. So when is your trip to sunny California??? I bet you already have it booked.

    I've missed you these last two days and you can congratulate Erin for doing such a stellar job keeping us up to date on your awesome progress. Every post leaves me wanting more!

    Much love Piper!

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  10. Thinking of you Piper. I'm so glad the right set of lungs found it's way into your chest :) Rest easy now so you can work those babies later!!

    --wander

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  11. Wow! Left on Friday for Max's CF appointment in Minneapolis and returned to hear the WONDERFUL news. You and your family are in my thoughts and prayers. So excited with the news!

    Ratatosk mom to max age 7 wcf

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  12. So happy Piper!!!! Gess and I are cheering for a speedy recovery and can't wait to see what you do with those new lungs!

    Much love!!!

    Lisa & Gess

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  13. Piper, We are so happy for you and so happy you're doing so well.
    You're simply the BEST, better than all the rest!!! Add that to your rhyme...

    Jerry, Jennifer and Aidan

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  14. Piper,

    I feel like I know you well enough from your blogs to start rattling off inside jokes and recounting all of our good times together and the bumps on your road to get here... and then I remember that I am a creeper and I know you in that "I know Will Ferrel or I know Jennifer Aniston" sort of way- you are a CF celeb to me and for all of the right reasons. You have dared to keep your sense of humor, faith, and wisdom in tact despite circumstances that most could never dream of. I often thank God for CF because it gives us all an opportunity to give him glory and proclaim his goodness despite our circumstances. The past year or so of your wait has made this moment so much more sweet... and if it weren't for that wait and for your courageous decision to let us all "in" during that time- we wouldn't have had the chance to hear all of your nuggets of wisdom and get to know alot (okay- sometimes too much) about your journey.

    Sending love to you (and pregnancy-induced tearful prayers:)

    Jackie

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  15. Piper, you are AMAZING! Not that I would expect anything less!

    You've been such an inspiration with your honesty, and I'm so happy to see you get the lungs you so deserve. I can't wait until you are back blogging and on cf2!!

    xoxo,
    Kris

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  16. Wonderful Wonderful Wonderful
    all hearts on Piper

    Laura MT

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  17. Piper,
    Your tenacity,
    your wisdom,
    your wit,
    and your grit
    along this journey
    have given us hope
    that heart and soul can prevail
    through the greatest of hurdles.
    Your prose
    has carved out the space
    for us to laugh,
    cry,
    and feel joined in our experience.
    So, thank YOU, Piper,
    for the love and light,
    the support,
    and the honesty
    that you have so graciously given us.
    I am ecstatic beyond belief
    for you to begin this next phase of life
    and for you finally to take that first deep breath.
    As Erin famously said
    after your first transplant evaluation,
    I, too, anxiously await
    the parts of your e-personality that will now emerge post transplant.
    With fond admiration
    and prayers for a fast and smooth recovery,
    Emily Kramer-Golinkoff

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  18. Yay Piper!! You're doing sooo well!!! Can't wait till you're writing to us, in full post, again!!! Lots & Lots of love coming your way!!!!

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  19. Much removed from you and your family, Piper, I am in awe of you and your wonderful sister and mom and dad. Since my Sara clued me in I have read every one of your blogs - you have a future as a writer, you know! And know here you are with NEW LUNGS and beginning a brand new phase of life. Well done, heal well, and keep us laughing!

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  20. We are all so pleased for you. Hugs for you and your beautiful family. This blessing is long overdue! We have been talking about you even more than we normally do and have had an age appropriate discussion about organ donation with Addison. We love hearing about your progress. Love to all of you from Hilary, Billy, Mary, Paul and Addison

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  21. Golly, Piper, if you laugh out loud, I am going to really be mad...please do nothing to hurt those lovely, pink new lungs!

    Marcia and I have followed your blogs and thoughts for a number of months and cannot tell you how overjoyed we are with this weekend's medical news. In our Sunday school class this morning, I must confess I reported your excellent news to the delight of everyone there.

    Your story is that of a miracle, and we are so pleased it is happening for you now.

    Ed Livermore

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  22. Piper, we are happy and grateful beyond words that your new lungs are giving you the power to be running down the road to recovery so quickly!! Much love, prayers and hugs from the Enochs!!

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  23. Thank You, Thank You, I'm 27 and have CF. My girlfriend and I have been checking the site non stop and, reading Your blog and appreciat Your insite, and strength. I have a joke for You,

    Did You hear about the fire at the circus?

    It was intense....

    Much love

    Colin and Robyn

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  24. Thank You, Thank You, I'm 27 and have CF. My girlfriend and I have been checking the site non stop and, reading Your blog and appreciat Your insite, and strength. I have a joke for You,

    Did You hear about the fire at the circus?

    It was intense....

    Much love

    Colin and Robyn

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  25. Congrats, Piper! I am so thrilled for you and your new lungs. I've been keeping track of your progress through your blog. Needless to say it's been a long, tough road, but you have endured it all with such grace and impeccable wit. I am so excited for you! I adore the Beatty clan and you are all in my prayers during this challenging recovery time. Hang in there in the . . . "concrete jungle where dreams are made of!" Ha! xoxo - Kate

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  26. You're amazing Piper! Are you trying to race yourself in this recovery phase or what? What a dynamo you are.

    I am SO ecstatic that you finally got them and they "fit perfectly"! I can see there's no holding you back now.

    kelly, mooo

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  27. Gorgeous words. Just gorgeous. :-) Lots of positive energy from Joshland.

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  28. Piper, I'm really happy to hear that everything is going so well! Nice rhymes too.

    Brett J

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  29. I honestly couldn't believe it was true when I read it. Wow wow wow. And yay. Sorry I'm not quite eloquent when I'm so happy, I just really can't believe that you not only got a shiny new pair of extra tall lungs, but you're doing great and awake to boot.

    Keep it up, pretty soon you'll be out running circles around NY, as it should be.

    <3 Stay strong, you have hundreds (thousands?) of people thinking of you and wishing you good health.

    Sevenstars/Sandy

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  30. Yay! So now that you have that under your belt, what's the plan? Climbing a 14er? Maybe even Mt Renier? :)

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  31. SQUEEEE!!! Way to go Pip! You are so awesome. I knew you'd do great, you worked so hard to be ready! Keep it up!

    XOXOXO!

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  32. It's about time girl! I guess those other bazillion attempts just weren't right for you..congrats on your new lungs..keep them happy and loved.

    M :)

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  33. You dont know me yet Piper, but i have been reading your blog for a while.. Im a fellow CFer... DBL trx, 13 months ago. Lady, you keep breathing deep and Ill talk to you when You get outta that place. I cant begin to describe how excited I am for you.. Life is going to be hassle free soon, dear, soon. Just take your recovery slow.. dont try and run hills or jump out of planes just yet.. :) I talked your to your friend Jessi tonight. Need any quick answers Ldmulic@yahoo.com
    i look forward to talking with you when you are recovering :)
    Breathe Deep
    Lindsay-CA.

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  34. Cindy C (TinyGreenTurtles)June 14, 2010 at 2:40 AM

    I'm not even joking, I had a huge, goofy-ass smile on my face from the first word of this post. You are awesome, Piper!! Much, much love to you!! <3

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  35. So So glad you are doing well! And glad you're off the vent! Can't wait to hear more from you when you're feeling better, and Congrats on your new lungs! :-)

    Jen
    Mommy2Zeke on CF boards

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  36. wow! that's deep man :) xxxx(joanna)

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  37. Is it possible to be so happy for someone you've never actually spoken to, let alone met?! Some people have idols who are musicians or sports stars. You're my Madonna!!! Can't wait for your post, Piper, but take it a liiiitle bit easy to begin with!
    Kaila, Australia :)

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  38. WOAH!!! Well done Piper!! I've been reading your blog for a while now and on several occasions it's made me laugh out loud! I'm so happy that you finally got your new lungs!! :) Keep doing amazingly and enjoy being able the BREATHE!!! :) Gem xx

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  39. You amaze me Piper, cant wait to see your new color post transplant and unlike my new color yours will look fab!! (you'll find later I accidentally died my hair orange).

    You, my cyster, are totally amazing and awe inspiring. I cant wait to hear how today goes.

    I cant seem to come up with a rhyme for you!


    Nicole (mom2lillian)

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  40. Piper,
    I made my coffee and ran up here this morning to catch up on your blog and hear the latest. The first thought I had was how amazingly full your life will be with these new lungs. with all your obstacles pre-surgery you still managed to do more and accomplish more and bring more joy than most people I know. Now, I know you'll be unstoppable and I'm so excited to be along for the ride and watch you live life post surgery.
    Love you! Kerith
    ps - hi Erin - so excited for your whole family!
    Kerith

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  41. Dear Piper,
    Glad to see you posting! It is wonderful to hear you are moving in the right direction. Keep up the great work.
    Shelly

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  42. Heather (mommafirst)June 14, 2010 at 9:25 AM

    You are amazing, Piper. Keep up all the hard work at recovery and I hope the rest goes as smoothly!!! Congrats on the new lungs!!!

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  43. I remember trying to spell in the air, too! And my husband Brad remembers hearing me down the hall once I had been taken to ICU saying, "oh shit." I'm not much of a curser (you're apt to hear 'dadgumit, etc." coming from me), but apparently the pain warranted a legitimate cuss.

    One of the first things my mom noticed was that my toenails were pink - it's one of the small things, but I was pretty tired of blue-tinged nails.

    I'm so excited for you! I'm disappointed I won't received my t-shirt, but you know what, I'll get over it. Breathe happy!

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  44. Piper, I can't wait to see you! Good luck getting out of the ICU soon. You'll have to start thinking of special requests that we can bring up to the hospital when you're able to have visitors--take-out, trashy mags, etc. LOVE LOVE LOVE!!! xoxo, Erin and Russell (and Montgomery and Kirby, though they probably won't make it to visitors hours...)

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  45. What an inspiration you are! I have been keeping up with your blog thru my daughter's friend, Jessica L. in Charlotte.
    You girls are amazing!
    It's such a pleasure to read about the love and support you receive from such a wonderful family!
    Thank you for sharing your journey!

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  46. Piper!!!
    Holy cow!!! I am so happy for you. I was checking the forum while out of town and saw the aMazing news!!!! I have been praying for you for so long and it is so wonderful your whole life is about the change!!! Color in you face???? What is that like:))) the perfect lungs found you in His perfect timing... Praying without ceasing for you, your family and the donor family!

    Love and hugs-
    Dramamama / mandy

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  47. Piper, I am thrilled for you and your family. You do not know me but I am a friend of your father. He has lovingly talked about you for the entire 25 years I have known him, and I can not imagine his joy today. You are his little girl, and fathers (I have a daughter) and their little girls last forever even for 28 year old little girls. I pray for your continued recovery and for your family.

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  48. I am new to your blogs Piper, but I kept seeing that Piper had just received her new lungs, and being a mom of a daughter with 11 years post-transplanted lungs I knew this was big news and wanted to say "Congratulations on your new pair!" Your life journey from here forward is going to be awesome! I bet the color pink suits you just fine!!! :-)

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  49. YAY!! Congrats on the new lungs Piper! You are an amazing example of determination, strength and love! Your blogs inspire us CF Mommas beyond words! You have been and will continue to be in my thoughts! Fight on girl!!! Sending lots of love and sunshine from California (and an extra "huggle" from my little Cfer Tom - 13 months)! Natalie xx

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  50. Great news on the new lungs Piper. You sound as if you are doing well already. It is only up from here.

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