Monday, June 14, 2010

Ouch!

Apparently Piper had a good night, sleeping for most it. When we left her last night, a big smile on her face, eating generic jello, she felt fantastic. The epidural was working. Today is a bit tougher.

She's tired and uncomfortable. Although nothing in particular hurts, she doesn't feel well. She said she felt pin pricks all over her body, a symptom of the drugs and energy she's exerted thus far.

Still, the doctors say Piper's progressing beautifully and speedily. Today they'll put her in a chair, in which she'll be expected to sit for two hours! Sadly, to me it looked more like a lawn chair and less like a lazy boy, making that an uncomfortable task for the day.

Last night, after her blog post, we sat and read all of your comments. Your words of support brought laughter and tears. She wanted to know who posted what, loved the iPad commentary, the burger king orders, your jokes, your prayers, and your stories of healing. She was happy to hear that others had struggled with breathing, learning to use their new lungs; to hear that figuring out the right combinations of pain meds is hard, and hear your enthusiasm and love coming through the screen. If she could, she'd be dancing with each and everyone of you!

Love and peace to you all. We feel so blessed.


- Posted using BlogPress from my iPhone

58 comments:

  1. This is soooo awesome!!! Go, Piper, go!

    Thanks for updating her site for us, and I'm elated that she wants her iPad already. She must be as big of a geek as me that'away.

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  2. hehe loved the rhyme! She is nothing if not determined haha!

    Someone mentioned on CF2chat that she should be the new Apple spokesmodel! Asking for the iPad so soon after a major surgery!!! That's our Piper :)

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  3. Piper, you're a Rock Star! The pain is to be expected, but it still sucks. I want you to know that prayers and positive juju are being sent your way from Ohio!

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  4. Yep, the ouch is normal. It will get better each day. Slowly but surely. It WILL get better. Take one hour at a time!

    Have they tried to make you "cough" yet. It is a totally painful, yet hilarious, venture. It will sound more than pathetic. So, so strange.

    Keep up the good work!

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  5. yeaaaaaah piper! i am sure you are the first person ever to type on an ipad after double lung tx?
    apple should contact you and make you their "apple of the eye" as we say in dutch to describe someone´s dear/favorite/sweetheart etc.

    i am happy for you!
    lizette

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  6. Piper, I have been thinking about you every few hours and wondering how you are doing. So happy you finally got your transplant!! Here's wishing a smooth ride ahead. Whatever comes, I know you can handle it. :)

    laura/catboogie

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  7. Prayers have been answered! I look forward to talking to you soon!

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  8. Piper: Congratulations on your transplant!! You don't know me but I have been following your Blog for some time and have enjoyed your wit and articulate commentary of your journey. I am the Grandfather of 19 month old twin boys born with CF. I have been trying to read as much as possible to learn about the challenges associated with CF and your stories have helped me in that regard. I just wanted you to know that you have prayers being offered up on your behalf from Canada and we will also not forget the donor family who were the "silent partners" in this miracle. Take care and God bless you and your family. Ross.

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  9. Piper, I've just about worn out my laptop hitting the refresh button on this blog! The pain today obviously sucks, but you typing blog updates and generating your famous rhymes two days after transplant completely blows me away. I can't wait to pay you a visit. Lots of love to you and Erin and Kathleen and Mike!

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  10. Let's pretend that those two hours in the chair are spent at some really great restaurant over a fabulous meal and a bottle of wine. We'll be telling Beatty stories and catching up. Soon...really soon, Piper.

    You are doing great and you are being prayed for all over the world. Hang in there and feel the love.

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  11. What an inspiration u are!!!! <3 reading ur blog, been a follower for a while!! So glad u finally got ur lungs!!! Danielle in MO

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  12. Hi Piper ( and family)!

    You out smarted the universe! Making plans, living life and viola! New lungs!! You are a tough cookie and truely an inspiration.

    I am thinking of you and praying for the best recovery possible!!

    XO, Kris

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  13. Hey Piper I am so happy to hear you got your transplant and you are recovering so well. I am Courtney's (spicyone) sister and when I heard your surgery was a go tears started to flow because I remember courtney getting that call and how the whole family was so happy.You sure are kicking butt! Just know that I am praying and sending positive vibes your way and keep up the good work!

    Lindsay in Texas

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  14. Hi Piper-
    I have really enjoyed getting to know you through your blog. I often forgot how sick you were because your blog was so full of life.

    I hope to see a lot less posts from you in the near future as you get out and enjoy your new lungs!
    Love to you and your family,
    Sarah - Lilismom

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  15. Every time I read a new post on an update my heart literally swells for you. I have been waiting eagerly to hear of your new lungs and reading along as each dry run came and went. These posts are so inspirational for me. I plan on printing them off to keep in a notebook so when the day comes for me to finally go on the list, I can read over your experiences once again and it will bring some comfort knowing someone else out there has went through the same thing!! Keep up the recovery!! My husband and I both are praying for you!!! =) =)

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  16. Hey piper you are in my thoughts and prayers..... keep fighting to the end. Us Cfers NEVER give up! Keep us posted on your progress and keep your chin up. Denise ;) x

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  17. Hey Piper, I think I've had this blog up so much people are going to start wondering what "A Matter of Life and Breath" is all about at work!

    I am so happy to hear you are doing so well! THinking of you :-)

    Nicole (Mom2lillian)

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  18. Hey Piper!! I'm sorry that I haven't commented in the past couple of days but I was in NJ haning out with Joni, her sister, Graves, Stacey, and a few others. Did you get the video I sent to your phone?? You are doing amazing and I'm so happy that things are going well!! Love you, Cyster!

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  19. Hi Piper! So excited for your new lungs and so happy to hear that you are doing well....love and prayers from southeast louisiana! You inspire us daily!

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  20. Keep Up the Good Work !!

    I am very happy for you and your new Lungs !!!! Use them Well and Often : ) .. I am sure this must be a major adjustment breathing through Healthy Lungs after those ole Cf lungs.
    I would love to Hear how it Feels to
    take a Real Deep Breath with healthy lungs.I have always wondered. Ha like ever Cfer in the world hasn't wondered .
    So I see a TX has turned into a Rapper.
    Oh yeah, Steve Jobs says thanks for the endorsement. jk

    I know you will be dancing The New Year in..Long before that I am sure.But you won't be falling asleep before midnight, like me.

    Ever Forward, Baby steps..
    Brad

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  21. I can't wait to see Piper with rozey cheeks and laughing like she did as a little kid. I have been doing a little internal tap dance since getting the news of the successful transplant.

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  22. I am so glad that this has finally happened. Hi to Mike and Kathleen (they'll know who I am). Mary Frances Edwards

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  23. We love you, love you, love you. We are so proud of you. Thank you for showing me grace, and patience. And where the hell is my t-shirt?

    Just kidding.

    Love, CysticGal Beth Peters

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  24. FORGOT TO LEAVE YOU A RHYME:

    Blood is red,
    and lips were blue,
    now Jess can breath,
    and so can you!

    You are strong,
    and you are kind,
    we're rallying for you,
    through this rough time!

    Soon you'll be running,
    and swimming,
    and hugging,
    or dancing the whole night through.

    While those who are waiting,
    and hoping,
    and praying,
    send all of our thanks to you!

    Love, CysticGal Beth Peters

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  25. Piper!
    Things sound like they are looking up. Keep up the great work.. only a few more day and you will be release to real life :) it feels intense but keep on trucking :) I am so proud of you, brings back my days. And thanks for keeping her blog up to date for all of us!

    Lindsay in CA

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  26. Piper,

    You're up in the chair already!?!? No rest for the weary eh? I think they've must have had enough of you with all those dry (and damp) runs, that they're preparing to throw you out soon! LOL. :D

    Seriously, you're one amazing tough cookie... Those Gyrotronics must really be paying off now.

    Sending many {{{hugs}}}. ~Juliet

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  27. You are doing great!!! In no time at all you will be able to climb those Rocky Mts again. Keep up the good work and thanks so much for keeping us updated w/ your progress.

    Go Piper!!!!

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  28. Go Piper! You are amazing! Praying for you all.
    Julie

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  29. I was soooo happy to read you got your new lungs Piper. . .how wonderful. It is tough because it seems to get worse before it gets better, but once it gets better it is all worth it!! I promise :) I remember the 'chair' and you're right it's no lazy boy :) but you'll conquer that quickly. I am praying you will continue your speedy recovery. You are incredible!

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  30. Piper! Yay! I went camping for a week and when I came home, checked your page, and found out you got new lungs I was so excited!!!! Woo hoo! You've already been extubated! Awesome! I can't wait till you are able to post.... I know you'll have great things to say and will be helping out the people who are still waiting for their lungs! Again, YAY!!!!!!! God bless!

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  31. Hi Piper

    Good luck with your lounging today. Hope you're coping okay....thinking of you :) really glad you are still doing so well, so happy for you all...does it all feel abit surreal? Probably not...probably feels very real today!!xxxxxxxx Joanna (dasjsmum)

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  32. Merry Christmas, Piper!!! I talk about you at work a lot and everyone was so excited to hear that you received a wonderful gift!

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  33. Oh, one more thing:
    I'm soooooooooo happy we won't be getting our shirts this week!!! ;)

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  34. Go Piper! So glad to read about your progress. I hope you are more comfortable this evening and that each day you feel better and stronger.

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  35. I know that some people talk about feeling so wonderful with their new lungs right away because they could breathe, but I didn't feel like that. It took awhile. I have talked to many others who are like I am. Recovery is tough, and tougher on some than others. The great thing is in a couple of months she's going to be as good as new and feel awesome. I can't wait for that day. Just tell her to hang in there and keep her eye on the goal. Unfortunately, no pain medication is going to take away her pain completely. :( Dilaudid did work best for me though. My prayers continue!!!

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  36. Sorry to hear that you had a rough day, but happy that the doctors are happy with your progress. I had a pretty good clinic visit today. My PFTs are actually down a bit but I had to work really hard to get up a stubborn plug the other day and now I've got some inflamation. Good old prednisone time. I've also had some nausea that is a mystery. We're going to try a perscription reflux med to see if that helps. I'm also going to be trying cayston. So that's it from me today! (((HUGS)))

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  37. you could rule the world from a lawn chair.

    pepster got some pepsi swag, maybe you could get some apple swag. i think an apple pen would be sweet. so long as it's not just a bic with the apple logo. although that'd be alright - the ibic.

    much love, yo. keep on keepin' on and all that.

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  38. Thinking about you and wishing you a speedy recovery..hopefully someone can sneak Sammy in to the hospital for a visit, I bet he misses you like crazy!! Sending lots of positive energy and good vibes your way. Keep smiling, you are blessed!

    M :)

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  39. Sending a warm get well wish from Israel. You don't know me, but I've been following your blog ... and I solute your bravery and fortitude. I'm sure this stage is painful and difficult, but soon you'll be enjoying your new lungs to their fullest.

    All the best,
    SuperBronch

    http://super-bronch.blogspot.com/

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  40. Hi Piper,

    Get well wishes from Israel. You don't know me, but I've been following your blog and take off my hat to your bravery and fortitude. I'm sure that this part is difficult and painful, but hang in there and you'll be enjoying your new lungs to their fullest before you know it.

    Warmest Wishes,
    SuperBronch

    http://super-bronch.blogspot.com/

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  41. Christy is dead on. It will hurt. It won't feel like you can take this huge breath... but soon... you'll realize at the best times... I just walked down the hall, and I'm not tired...? What? I took a shower, and I didn't have to rest afterwards... What? I am not coughing... WHAT!?!?!

    Keep on trucking! :-)

    Really ecstatic for you.

    Brandon in Chicago

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  42. Oh Piper....
    I've been "offline" for a few days trying to spend time with my precious family, and I turn the computer on today and saw your dreams have come true!!! I am in tears for you my dear! I am so glad that you've gotten the opportunity to breathe...really breathe...of course it doesn't surprise me one bit that you're sailing thru your recovery...and you have the rest of many many years of life to continue to do so...i'm so thrilled for you. i can't wait to hear the whole story of how it all happened for you and not the other gal, etc...and i will hold you and your family close in prayer tonight and the donor family as well for the greatest gift that they will never know. God bless them. Connermans sleeping next to me here with his bipap on...so I'm going to go enjoy snuggling with him. i'm just so happy for you!

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  43. I have no idea what to say really except a big WAAAAHOOOOOO!!!!...with a gurgle and a cough afterwords lol.

    Wait i do know what to say. Piper you are extraordinary. You have been through so much....but at the same time you have shown nothing but grace. You let the true light shine through. Even when you have a really bad day and need to get it all out...you come back later and have something to smile about or be thankful for. True inspiration and a true joyful heart.

    I know you will use all of that grace and strength to get you through the good and the bad times in your recovery. Hopefully there are little to no bad times of course...maybe just hard times?

    We all can't wait to "see" you when you are feeling well and strong!

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  44. Wow...I'm surprised you can get away with having your iPad in ICU! (would never happen in our ICU that patients go to right after surgery for a few days).

    Awesome news! Sorry I am just now posting! I am so happy for you and impressed at your quick progress. You are responding "above normal" compared to many others. Hang in there...the pain is tough, but worth it with those beautiful new lungs. And yes, the chair they made me sit in was more like a lawn chair...not at all that comfortable. The breathing is hard to get used to. I was so dependent on my O2 prior to transplant, that I felt like I had to have it afterwards, even though my O2 saturations were ok. They had to trick me to actually come off of it :) Your body just takes awhile to get used to everything....you can now breathe, which you haven't been able to do (fully) for a LONG time! Sending lots of prayers and happy thoughts your way!! Congrats!

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  45. Can't wait till you're breathing perfectly!! We all miss you tons! Keep up the great healing & stay strong!!

    Lots of love, & Quick healing vibes being sent your way!!!

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  46. Piper,

    I've been off the computer taking care of another daughter at another hospital since last Saturday morning. Before I turned in tonight - I thought, "I wonder what Piper is up to?" What a glorious surprise!!! Congratulations and peace and comfort to the donor family. In 7 hours we have Jocelyn's first f/up appointment at UoWash Med Ctr since her dbl tx on 5/14. I'll be thinking of you as we walk into this hospital for the first time in her life!! Enjoy your gifts of breath and life.
    David (& Jocelyn) Chehalis & Seattle

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  47. Dear Piper,
    I am so excited that you finally have your new lungs. Sending prayers to you and the donor family. You are really a trooper! Go Piper Go!
    Shelly

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  48. I'm amazed and humbled by you. I'm so glad you finally got your lungs, I'll be praying for you and the donor family.

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  49. I'm stoked! I'm so excited that you will soon know what I was talking about. My lungs feel HUGE! I can BREATHE! Piper, try not to worry about the crazy side effects from the drugs. They go away soon enough. Just remember all those coughing fits and breathing treatments....the side effects will seem like a minor inconvenience. Ok, so I have to ask....WHO WAS THE SURGEON??? Of course I'm biased toward Dr. Sonett...but they're all great.

    I am soooooo happy for you and this second chance. You deserve it. You deserve all these blessings. Have I mentioned how stinkin' happy I am for you???

    Recovery isn't easy. It wasn't for me. But now I'm running 6 miles and can't be stopped. Keep the faith, no matter how bad it gets.

    Lex aka Tim

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  50. Way to go Piper!!! Prayers being sent from Arkansas. I've been following your post for a while now. Glad you got your new lungs! It's been a long time coming I know. I have a 3 year old with CF! She's AMAZING!! I also have a sister named Piper. We don't have too many Piper's in the world! :) Take care of yourself and get some rest!

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  51. Love Love Love Ya!!!! So proud of your strength courage and fabulousness!!! Keep up the amazing job you are healing beautifully it sounds! You and the donor family are in my prayers! I was just in the big apple... Next time would love to meet up!

    Erin thank you for keeping us updated!

    Xo

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  52. We are so grateful for your successful surgery Piper! My church has been praying for you and when I told them on Sunday about your new lungs there was literally a collective "gasp".

    We are continuing to pray for complete healing. Our best to you and your beautiful family. You are all a tremendous inspirational voice.

    Judy & Douglas Atwater
    (Jack Williams' sister and brother-in-law)

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  53. Happy Tuesday PIPER!!!!

    I bet you are so busy sitting in your chair and learning to breathe with your new lungs today. I'm so proud of you. I can't wait to see you blog again. I miss my Piper stories!

    Hang in there chickie. Much love. Miss you!

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  54. Congratulations, Piper! Thanks for sharing with us. You are truly fantastic! Love and Light to you!

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  55. Piper, we love you Cyster!!!! I think of you all day long, and am so glad to hear that you are progressing nicely. You inspire us all! xo

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  56. Hello Piper,
    We heard you had an allergic reaction of some kind. So sorry to hear this. We will continue to pray for your speedy recovery. Thanks for keeping us updated when you feel up to it. We love to hear how you are doing. Lots of hugs to you and your family. Such strength of character and wonderful example of love you all are to all of us. Keep the faith. peace, peace, peace
    xxoo
    Gina and Mike

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  57. Dying for more updates!

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