It's official! Pip's off the vent! Actually, she's been off for nearly six hours now, but insistent on keeping her I-pad in the ICU, where updating her blog solicits the risk of a severe reprimand from one of her highly skilled, but also intense nurses...
She's doing amazing. She has more color than we've seen in years, she's attempting text messages (she managed 'hi' early this morning, while still on the vent! Totally impressive considering she could hardly see the screen), remembering said text message attempts, and is even managing jokes!
Her breathing is belabored right now, which her doctor said is normal. According to the respiratory therapist the new lungs are slightly larger than her old lungs, and therefore take some getting used to. She's in some pain, but has an epidural now, so that should improve. And, of course, she's super tired. That said, her doctor told us she's progressing remarkably well!
Whenever we go in there she wants me to read comments from her blog out loud! Please keep sending your love and support and hilarious commentary. She loves hearing your stories and your jokes! Many of you have made her laugh out loud, which is pretty impressive considering the effort that can take!
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About Me
- Piper
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
Want to Contact Me?
Please email me suggestions, thoughts, comments, or criticism. Seriously, I love hearing from you guys!
Send all emails to:
matteroflifeandbreath@gmail.com
matteroflifeandbreath@gmail.com
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Go Piper! Really and truly, when I met you at Sanborn Western Camps soooo many years ago, I thought you were one of the bravest and coolest girls ever. I am so excited for you and your new lungs! My fiance and I were marveling today about the miracle of medicine and the generosity of others. Keep being strong! I'm rooting for you, despite not having seen you in 20 years!
ReplyDeleteWay to go Piper, I was so happy to read you are off the vent, awesome job girl. You just keep improving and taking things one minute at a time. Sending you lots of love, hugs and prayers.
ReplyDeletexoxo- Jenny
Piper, Piper, Piper.....YAHOO!!!!!!
ReplyDeleteWe are all so thrilled that this part of your journey has gone so well. I'm happy dancing, crying, clapping, and saying many prayers of thanksgiving. Know that I'm holding your hand (yes, across the miles) as you walk into the next stage of your recovery. I'm also sending you so much love. I hope you can feel it wrap around you like a warm blanket. Much love also to Erin, Mike and Kathleen!!!
From Sammy: Congrats! Take your medicine says the big bad monster!
From Lola: Congratulations. I know you are going to get well soon!
So so so pleased for you! mucho love :) Xx
ReplyDeleteGo Piper Go! I hope you feel all of the LOVE AND LIGHT heading your way now. You, your family, medical team and donor's family are on the pray list at my church. I had the biggest smile on my face as we prayed for all of you this a.m. I am so proud to call you my Cyster. Rock on!
ReplyDeleteAre you FREAKIN' kidding me with trying to text while still on the vent. Why does this not surprise me!?! You are doing great! Off the vent and kicking butt. Not that I wouldn't expect you to be "top of your class!" Love you Cyster! Continuing to pray for you and your family, along with the donor's family.
ReplyDeleteAnd, don't worry...it will feel WEIRD. Like you can't breathe that well...like you want a treatment...like you want your o2. But, I bet your pulse ox is above 97!
And...I love that Erin said you have color! My dad SWORE that the nurses put makeup on me about two days post. I had so much color in my cheeks and lips! I also had no more blue nails! Good times!
Hang in there!
Piper! I am so extremely happy for you, your whole team stretches across the nation, we are all rooting for you! So happy to hear you are doing great! We are all so happy to hear that you are keeping everyone on their toes, in the best possible way ;) Love that you don't wanna let go of the iPad! I love you girl!
ReplyDeletexo
Alyssa (From CALI!)
Great Job Piper!!!! I am so thrilled for you.. Keep being a sassy pants, it will get you far in life... I can't wait till you post your own update!!!
ReplyDeleteJennifersHope
I love hearing how well your doing!! YAY to you for finally getting your lungs!!!
ReplyDeleteLaura McPeak
Hey Piper, Your Celebrity Ski family is amazed at your stamina. Hang in there. We are all in your corner.
ReplyDeleteWe are looking forward to your posts and the day you walk out of the hospital.
Let us know if we can do anything for you.
Bernie
Congratulations Piper! Keep taking leaps and bounds in hitting every milestone you have ahead.
ReplyDeleteWe're sending love and prayers to your family and you.
Emily
PS Don't let anyone take your iPad! Oh, and don't let your family blackmail you with stories of when you were in the ICU and were acting all crazy. Like my personal favorite: the time when I was ordering breakfast off the Burger King menu, despite the vent, and insisting to everyone who came in my room that it truly was real.
Dear Piper,
ReplyDeleteI don't even know you yet feel connected via Columbia/Barnard alum status and CF (my 11 yr old son has CF). Yesterday night his little league team was in the playoffs for the top spot. Trevor got to pitch. He pitched really good last night. I could hear the other team's parents mumbling about trivial things and all I could think in my head was 1. do they even realize he has CF and is throwing that hard? and 2. do they even realize Piper got new lungs today? It really puts life in perspective when you live with CF. You are a shining model for CF and as Trevor grows older with this disease, I can only hope he shows an inkling of your tenacity and humor in the face of something so pervasive.
I hope you are enjoying your new lungs. It is truly miraculous.
Love from Kittery, ME,
Christie
Wow I am SO glad you are doing so well. You have been on my mind all weekend wondering how you were doing! Keep proving to everyone just how awesome you are. Sending lots of thoughts and hugs to you from Fl!! :)
ReplyDeleteJen
XoxoX
What a wonderful way to end such a crazy week! I'd have thought that you'd be nauseous from such an emotional roller coaster these past few days, even if it weren't from the meds. We are so glad to hear that the surgery went well and that you are already able to communicate via your i-pad. What an incredible network of friends and support you have. You are such an inspiration for so many of us. Please give our love to your mom, dad, and erin. Bryant and Nancy
ReplyDeletePiper you are a rock star!! So so happy to hear how well you're doing. Pretty soon you'll be up and about, testing out the new windbags.
ReplyDeleteI think you, Kelley and I should plan to meet up in clinic this summer and have a coffee clotch- oh, and Gary from PFT's can come too, just for our own entertainment. ;)
Always thinking of you, if you ever need anything, I'm here.
Goooooooooo Piper!!! Soooooo excited for you! Getting off the vent and pain management is half the battle so, to me, you already have one foot out the door! :)
ReplyDeleteCan't wait to hear when you're up and moving!!! SOON!!!!!!!!!
Hugs!
I'm literally doing a happy dance right now - you are a rock star cyster!!
ReplyDeleteAs for the breathing, I didn't notice how awesome my new set was until I went for my first walk and watched my sats stay 98-100. It was amazing and made me cry. Speaking of which, don't be surprised if your emotions are all over the place. The drugs will do that to you until you get use to them. Besides, you kind of went through a life changing event, expect laughter, giddyness and tears :). Much love and light your way - still have my whole family praying for your AWESOME recovery <3
Oh Piper! You are so incredibly amazing. :) And Apple really should get wind of your blog and demands to have your iPad... just a few hours out of lung transplant surgery! They should be sending you a new one free every year for life! LOL.
ReplyDeleteRest up, breathe deeply and recover well. We want to hear all the itty bitty details about everything once you're up to it. :)
Many {{{hugs}}} ~Juliet
I am so glad to hear that you got new lungs! Prayers to you and the donor family. Get Well Soon!
ReplyDeletePiper, I've been one of those silent blog readers, keeping tabs on your transplant journey. When I got home last night and saw that you had gotten your lungs, I couldn't wipe the silly grin off my face the rest of the night. You've been in my prayers and I will continue to lift you up and into His hands. May you feel His peace and grace as you start this new journey with your new lungs!!! (so excited for you)
ReplyDeleteHey Piper so so happy for you :)Best news to wake up to over here in Australia. Joanna (dasjsmum)xxxxx
ReplyDeletePiper,
ReplyDeleteI've been following your blog for a couple of months now, but this is my first time commenting. I'm so, so very happy for this wonderful gift you have received. You have inspired so many by honestly and generously sharing your journey. You have a legion of cheerleaders all around not only the country but the world, rooting you on as you begin this next chapter. Love and light to you, Piper.
girl all I can think of is you in the ROC arguing with the people in the restaurant to let us sit down and talk. So that is what I am imagining you are like right now, only not talking and just using your hands haha!!!!
ReplyDeleteI'm also waiting for the blog about you up and walking the halls. I can't imagine what kind of havoc you are going to wreck on those halls there! You are an exercise machine and look what that did for you! Off the vent in 24 hours :)
((((((((((((HUGS)))))))))))!
ReplyDeleteFrom one Cyster on the west coast with her appendix just removed, to another Cyster on the east coast with her brand new lungs just received, congratulations!
ReplyDeleteThese organs are like Lego parts to us CFers, right? Put in the good organ, take out the bad one....
I'm just being silly. I so very happy and excites that you are progressing so well! I can't wait to hear you describe how amazing these new lungs feel....
FIGHT ON PIPER!!!!!
Keep the good reports coming!!! Praying for your continued positive progress.
ReplyDeleteLinda in Louisiana
Mother of Mandy (with the angels) Kyle, Hunter and Brady wo/cf and Jamie 24 yom w/cf 2X Delta F 508
You go girl! SO excited for you and those new lungs! I was wheeling my IV pole through the hospital when I got a text from a friend who also reads your blog, telling me the good news. The nurses were wondering why I was so excited! Sending lots of love your way. :)
ReplyDeleteNo more blue fingernails!!!!!!
ReplyDeleteNo painting them, must show them off. Proceed to boast about pulse ox.
Hello Piper,
ReplyDeleteI'm so excited to hear that your time of waiting has come to an end. May this next stage of your journey be filled with healing and the sound of all of us lurkers cheering you on.
Prayers of health, strength and thankgiving being sent your way.
Jane, in Canada
Atta boy, girl! Sounds like things are coming along just fine. All the best. See you in Vail in March.
ReplyDeleteCarl in NH
Hi Piper. I am so glad to hear you are off the vent. You are in the thoughts of me and all my friend and family. The road ahead is long and can be frustrating but so worth it. Sending lots of love your way.
ReplyDeleteThis is awesome news!! I knew you'd do well Piper. Whenever I get to thinking about you I tear up a little because I'm so freakin' happy for you!
ReplyDeleteLove and stuff!!!
Hey Piper, just think; soon you'll be able to laugh without coughing. I'm SO jealous!!! :-) I'm so very happy for you. :-)
ReplyDeleteMatt says you can thank him later for calling it that this was the real deal. :)
ReplyDeleteMuch love to you cyster!
Of course you're insisting on your iPad...that's just YOU! :) I am so excited and thrilled and happy beyond belief. Remember my aunt Val? She sends her love and my horse trainer, Cathy, said she had tears of joy and also sends her love. And my parents are thrilled and want me to send their love, too. See how much LOVE you have? It's amazing 'cuz you're amazing. Keep on keepin' on, my fellow Horsie Girl. Love you a million times over...LOVE should be the word of the day. And a shout out to Erin, Kathleen, Mike, and Joan. The Colorado crew are with you all in your celebration! Many hugs...and love, of course. :)
ReplyDeleteHi there - I am Stephanie Watson and I am the one who put together Bernie Willett's book for the 25th Anniv of Celebrity Ski! I feel like I know you already, oddly. I met with Mike Campbell on Saturday to talk about the 2nd book.... and God has a way of wiggling his way into things! In between our conversations about the book, the event, etc, I asked about you and how things were going. Little did we know that that very day was THE day for you. It kinda makes my heart skip a beat! Wow and congratulations! Very powerful for me and a reminder that God does indeed work in mysterious ways. I am not sure exactly "what" brought Mike and I together for this project, all I know is that my life is richer because of it. You are an inspiration and are in my prayers!
ReplyDeleteI am now following your blog, by the way! And thanks for your strength and insight.
Sincerely - Stephanie
I think that it is a riot that you have a death grip on that i-pad LOL! You are amazing..trying to text while on a vent, you are something else! But then again, should we expect any different from you? I suspect that you will be roaming the halls in no time, totally surpassing any expectations that doctors give. They will say x, you will do that and y as well while you are at it hehe. You keep up the good work, great spirits and that tenacity that is so you Piper and you will be out of there in record time. Enjoy those new breathers! Gentle hugs,
ReplyDeleteJenn (JustDucky)
Piper - I have been following your story for a little less than a year and I was jumping for joy when I read what happened over the weekend. You are truly an inspiration. Thank you..and I am so happy for you and your entire family. My son is 15 months and has CF...you are our hero!! Keep up your positive attitude.
ReplyDeleteGigantic lungs for a gigantic cfer :-) How appropriate! So I guess that means your new lungs are beautiful too because you are dear.
ReplyDeleteThis was suppposed to be funny. Of course, I don't think you are gigantic...just very tall.
Purely Positively Progressing Precious Precocious Phenomenal (starts with the right letter but not the right sound! oops) Persevering Powerful Piper,
ReplyDeleteRemember the time we went to Europe and you were the self-proclaimed master of beating jetlag? With midnight cold showers and random chess games? Well I do, and it is that "get 'er done!" attitude that I know is getting you through these first few days with new lungs! Keep being a rockstar (and a total inspiration) and show this whole transplant business who is boss--just like you showed jetlag who was boss so many years ago! :) You are amazing--purely positively preciously amazing!
I'm thrilled for you Piper! I love to hear your diligence about the iPad. You rock! I'm glad you have so much support.
ReplyDeleteYou have been an encouragement on this journey so far. While I hope to have new lungs soon too, I look forward to hearing about all of your milestones while I continue to wait.
Hugs,
Kerry