Saturday, June 12, 2010

Piper's out! She's in the ICU strapped up to hundreds of tubes, bizarrely conscious and communicative. When I was last in there to check on her, she was waving her hand in the air asking what time it was and trying to spell M-O-M. Through an extremely strange series of charades, she got out that she wanted me to return with my mom-quite likely so that we can go through another game of charades where she asks for my dad, or for Sammy or for other things that she likely won't remember tomorrow.

Though initially worried about minor PGD- a condition in which the lungs, weary from their journey, and hesitant about their new home, rebel, filling with fluids and mis-functioning. Most often, and as it seems with Pip, PGD clears up on it's own. The lungs acclimate to their new environment and resume their work.

She'll remain on the vent until tomorrow-resting up until then.

Continue to share your stories. We're curious about her level of consciousness right now-what might be going through her head in this crazy strapped down, drugged up state of mind!

Thank you for your continued prayers and support!

- Posted using BlogPress from my iPhone


  1. one word, pip - word.

    much love, yo.

  2. Transplanted 10/08 in Chicago @ Loyola.

    She is going to be REALLY thirsty. They allowed me a sponge-swab type thing while on the vent... I remember waking up and the vent being in, but don't "really" remember it. All I know is, I was super thirsty. If they'll allow it, swab her mouth with the wet sponge thing!

    B Rees

  3. I remember coming into consciousness and thinking "I must have made it" and then "I'm going to have a vent in - this'll be unpleasant". And it was - I fought against the flow and felt like I was choking - the nurse told me to relax and breathe with it. Apparently my first moves were to try and pull it out of my mouth. You kind of remember things but it is very sketchy. I remember hearing family talking and saying "do you think he can hear us?" and I could but couldn't really respond. Then I managed to open my eyes and everyone pointed and said 'ooo he's opened his eyes!' and I just laughed inside at the way they stared and pointed, so I kept on trying to open the eyes to get them to do it again. I'm sure she can hear and understand all of what you're saying so my advice would be chat to her, tell her the time, what is going on, what the plan is; even if you don't get much back initially. Good luck!!

  4. First I'm so happy for Piper. To answer your question, they told my family I would not remember seeing and trying to talk to them but I do. I remember being on the vent and being strapped down. My wife says I was answering yes and no questions to everyones surprise. I'm 3 weeks out from transplant now.

  5. Erin thanks so much for the update! I was transplanted at UC San Diego on 3/27/01. I remember VERY little. It was like 4 days in 1...and what I remember from that time is tiny snippets of things. Nothing concrete. I literally remember like 3 little things from those first 4 days. Even up to day 7, memories are very hazy. She probably won't remember any of this later! She'll probably keep asking (via crazy hand movements i'm sure) the same things over and over. I think some of my memories aren't really mine, but stories told to me by my family! LOL! Hopefully she won't remember much...vent sucks! Chest tubes suck! Arterial lines suck! lungs are FAB!

    I had a great deal of back pain...if she has it and tells you she has it, ask for muscle relaxers. They didn't give them to me until about 3 weeks after and it finally helped relieve the pain.

  6. I do remember bits and pieces of the ICU (was in there approx 48 hours), but it's mostly a big blur. I think my first memory is the second day, not the first even though that's when I first woke up and tried to speak. It's possible she might remember today a bit.

    Not sure if you are aware of hallucinations that post-txers can have, but the drug Prograf can cause them at first. I talked to my daughter who wasn't in the room and other funny things that I don't remember.

    I am SO happy that the PGD has cleared on its own. That is such terrific news and is SO like Piper to overcome something like that on her own. :)

  7. I remember being fairly aware of what was going on when people talked to me and putting thoughts together, wanting to respond, but just can't b/c of the vent. I remembered being told everything went great and I had new lungs... so even though she may forget it 5 min later, keep reassuring her that everything is going great and she's doing well!

    I remember thinking and wondering how I was doing, so hearing and being told what was going on, was reassuring.

    I was also VERY thirsty afterwards and couldn't wait for a wet swab for my mouth.

    I didn't feel much pain RIGHT after surgery, that will come once off the vent and more aware. Don't be afraid to try different drugs if one isn't working... you'll know if one isn't working ;)

    Final thought... Even though an hour of pain seems like a day, the body is healing and it heals quicker than you think! I was discharged 10 days after tx!

    Sending love and good thoughts for a speedy recovery!

    Sara (tx on July 8, 2008)

  8. First, congrats!!! And I'm so glad to hear the PGD is clearing on its own. I've had my whole family praying for all of you!
    I was transplanted February 13, 2009. I don't remember the first day at all. My family has told me stories, so I know what happened, but none of them are my own memories. The second day is when they backed me off some of the sedatives and I remember chunks out of that day. Mostly the vent being removed and the EXTREME thirst. The thirst lasted for weeks for me. I kept drinking and could never feel like I could quinch it. That was one of the most frustrating things about recovery for me. My only advice is to get up and walking and keep walking as soon as possible. Loosing muscle in your legs is sooo hard to regain, so the sooner you get moving, the better. Plus, it just feels good with new lungs :)

    Best of luck!!!

  9. Go Piper!

    I was transplanted in August 2006. I was out of theatre around 10 pm (went in around 1pm).

    I started waking up around 6 the next morning. I don't really remember anything from that morning but do remember everything from that afternoon and onwards. I was on the vent and the more I started breathing along with it the more it started to annoy me. The vent was taken out that following morning so you could say around 36 hours post surgery.

    I remember wanting to know absolutely everything. At first it was still a little hard to move my arms around as I didn't have much control over them. I would write letters in the air. When I got more control over them they got me a letter card so I could make whole words and sentences. I loved that and remember I drove my nurse nuts that night. As I was very awake and he had trouble following how fast I would 'type', he had to remember the letters and words :-)

    I asked everything, from my sats and other vital signs to the meds I was on, how the surgery had gone. I asked things about my friends, how they were.

    My sister updated my blog every day. It's in English

  10. I had my double lung transplant a month tomorrow and I wrote my daily experiences down here might help a little to know whats coming.

    In ICU I had really visual dreams but her mind will be thinking straight. I was woke up a few times but when they woke me up for the final time I was fully aware and can remember everything that happened :) Hope everything continues to go well xx

  11. Praise God, praying for you Piper.

  12. I am so happy that this was THE call for you Piper!!! I knew that you would amaze everyone...but sadly, you might now remember it. I remember that people were in and out of my room for the first two days but I couldn't remember who or when they were in. I do remember wanting to communicate, but because of the vent, I couldn't. So, I motioned for something to write with and just started writing my questions down.

    I hope that you don't experience too much pain...that was the worst part for me.

    I wish you a very speedy recovery and I'm thinking of you, your family, the donor, and their family too. Because of them, I still have you as an amazing friend!! Much love to you!!

  13. AMAZING!!! WOW WOW WOW!! Thank you so much for these updates!! I am absolutely blown away right now by our bodies and our ability to heal. I have not been through transplant yet, so this is all so interesting to me. Piper will remain in my prayers!! =)

  14. I am so happy for Piperr. It is about time and I guess Friday is a magical day for you. Piper, you will continue to be in my thoughts and prayers during this time of recovery. Love you girl!

  15. I am so thrilled, so, so, so, thrilled..


  16. Awesome!! I'll continue to prayer for you. May your gyrotonics class give you strength to get up and out of bed sooner than later.

  17. She's probably thinking OMG OMG OMG OMG....and im thirsty! Many thoughts coming your way tonight!

  18. Piper-I don't know you personally but I have been following your story for a while. I found your blog through Mark Hossler whose wife Nicole knows you. I'm connected to the CF world in that I lost a good friend to the disease a year and a half ago and he forever changed my life. I just wanted to say congrats on finally getting your transplant and I hope your recovery is quick and as painless as can be. Sending prayers your way.
    ~Rachel Keyt

  19. I'm sooo happy for Piper!!! :-)

    I received my heart/double lung transplant on 6/14/96. I was VERY heavily sedated during the first 48-72 hours but on June 16th (a Sunday which was also Father's Day) my parents said that my voice was so raspy that I had to finger spell my first words: "I-M-H-U-N-G-R-Y."

    At first the nurses said "no Kim, you can't have anything until Tuesday" but apparently I nagged them one too many times so they gave me a pancake expecting me to throw it up. I didn't. They gave me a 2nd one again expecting another negative outcome. Again, I proved them wrong. By Sunday night I was having regular meals.

    The 2nd thing I "said"? "I-M-T-H-I-R-S-T-Y" hahaha!

    I don't remember the above (bummer!) or being on the vent but I remember that "lovely" sponge bath! I also remember asking for my teddy bear. :-)

  20. I look forward to talking to you! I am so happy you finally got the call!!! Many prayers coming from TN

  21. Oh Piper! I'm soooooo happy that you finally got that perfect set of new lungs. Many thanks to your donor and lots of thoughts and prayers to the donor's family. I'm sure they're comforted knowing how the gift of life has been passed on to you.

    What perfect timing with the shirts! You should have done that months ago. LOL. :-) I'm sure all your strength and working out and keeping in shape will serve you well. I'm looking forward to seeing you post soon yourself!

    In the meantime, many {{{hugs}}} to you Piper and some extra {{{hugs}}} to your family too!! Please keep us posted on Piper's progress. We're all pulling for her to make a super speedy recovery! ~Juliet

  22. Hi Piper,

    This is fabulous news! Many good thoughts coming your way from so many people. I hope this means that you might make it to Celebrity Ski next year. It's been a while since I was able to make it there; Thayer took over the full responsibility of shooting the event, and he faithfully keeps me up to date on your situation. Much love from Maine to you and your whole wonderful family.

    And BTW, I love your writing. Both style and content. You certainly have grown into your potential.

    Geoff Parker

  23. Piper,
    I'm an RT at Barnes-St. Louis. Thank you for making my day, reminding me why I do what I do. May it be smooth sailing for you.

  24. I can't even tell you how excited I am to hear the great news. I pray that God gives her the strength to recover quickly, the patience to let her body heal, and the peace of mind to know everything is going to turn out great.

    Hugs to you Piper - I am SO very happy for you.

  25. Dear Piper,

    We are thinking of you and sending our VERY best wishes your way!!

    The Goren Family

  26. So glad to hear you finally got a new set of lungs. We'll be keeping you in our thoughts and prayers as you start take those first beautiful, deep, CF free breaths.