Saturday, April 3, 2010

Stranger than Fiction

hi everyone.

i'm awake and at home - discharged directly from the ICU around 10 am this morning after coming in from the OR around 2:15 am. i will try and explain what happened (although it's hard for me to wrap my own head around, i fully admit!), but please keep in mind that much of this is what lawyers call "hearsay" -- meaning i heard it from someone who heard it from someone else, and possibly the line goes back even further. suffice it to say that it went more or less kind of sort of like this:

the harvest team had already examined the lungs and was ready for the operation, and the lungs were very close by to columbia so i had to be put out before transport so i could be ready by the time they arrived. donor hospital made a last minute decision to allow the liver harvest team to resection the liver FIRST (contrary to most every hospital which allows lungs and heart to come out first). somehow i still got put under b/c the liver operation was supposed to take less than an hour. liver operation took 4 hours during which time the lungs (and i believe the heart) were lost due to no O2/blood, or possibly b/c of debris or a clot from the liver.

they don't know all of what happened. after it all the lungs never even made it to columbia. one doctor said he believed that it was the first time in 15 years someone at col pres has been put out only to NOT receive their lungs. almost everyone who treated me was crying. i awoke and asked if i got new lungs and they very gently told me no -- after that i was so confused i don't really remember much. i know i asked for my family and was told they were on their way. i know i felt a very weird sense of disbelief and numbness. i think i was just so focused on breathing at that point too that nothing else even really registered.

i'm still confused. i trust god and know that this must have been right, but how? and at the same time, i have NO FEAR about this surgery anymore. is that weird? it's also true. i've done my part. i've made it all the way to the OR and i've endured it all and i've felt that moment of being put under ready to give up my lungs and receive new life. true, it didn't work out as planned, but i also know that i did it. the parts that were in my control, at least. and that's all i can ask of myself, so i know i can do it again.

** NOTE: PLEASE understand that this experience is crazy out of the ordinary -- even bordering on the absurd. although i recognize transplant for the deeply personal and individual decision that it is, please think long and hard before allowing a fluke like this one to put you off of the concept. if i had to go through all of this twice over to get new lungs, i would. i am happy to correspond with anyone who wants to talk about this, and contact info is to the left.**

so here's what i know:
1) i still have my CF lungs -- and NEVER, EVER let ANYONE tell you that CF lungs aren't amazing. because mine survived intubation and general anesthesia at a time when their work should have been over, and they RECOVERED enough to let me come off the vent (apparently without any incident) and make it home. thank you, lungs. i will miss you when our time together is over!

2) i have a transplant team willing to refuse bad lungs even at the last moment, and to face me and look me in the eye to tell me their decision. they are compassionate, caring, competent, and -- above all -- discriminating when it comes to PERFECT lungs. i am so grateful that the first (cognizant) words that i said to my surgeon were "thank you for not giving me bad lungs." he laughed and shook my hand. i was serious.

3) i have a CF doctor with enough insight to get me on the list and to make all this happen when i am still strong enough to endure all these dry runs and even this -- the ultimate in "damp runs" as i am calling it. again, forever grateful. i will always, always be an advocate of working hard to delay transplant, however i will also always shout from the rooftops the importance of going into this process STRONG and not too sick or emotionally fragile to function. this is without a doubt the biggest challenge of my life, and to be able to continue to live through it, and live with it, is a blessing beyond words.

4) i have tiffany christensen's book sick girl speaks, which is the ONLY point of reference i have found to date of a similar experience. i am so grateful to her for putting her experience out there for others. i thought about it and told my mom her story as i recovered in the ICU this morning.

5) i have faith. god is in control of when i get lungs. the universe is unfolding exactly as it should.

6) i have so much light from all of you. i love you all. thank you.


  1. You have an amazing spirit; it's very admirable.

    Congratulations on not having bad lungs!

  2. You just "get it". The best thing about you, Piper, this is not a setback for you. This is a frustrating and emotional journey that you are taking in stride and looking for the good in every moment. Kudos to you, my distant friend.

    Peaceful Things.

  3. Ugh Piper I have no words. You have such a great attitude and you are such an amazing example for us all.

    Hugs to you - you are so strong mentally and physically.

    Tomorrow is Easter, and as I have every week in church, I will pray for your continued strength, and for lungs to give you decades of wonderful life.

    FIGHT ON, Piper. Hugs!

  4. Beatiful. Your writing. Your spirit. Your faith. They are all beatiful. You, my cousin, are beatiful and I love you.

  5. Sending love your way, always

  6. as cliche as it sounds, everything really does happen for a reason. As disappointed as I am that I woke up and heard no lungs for you, I was grateful your team was smart enough to not tx with those not so perfect lungs. And even more thankful they didn't get as fas as to cut you open. Your time will come, and I am sure you are sick of hearing that :)

    Love you Cyster!

  7. There just doesn’t seem to be adequate words. But prayers are more than adequate and that is what I have for you. May God’s perfect peace be with you. May you find comfort in Him as he unfolds his perfect plan for you.

    I just found your blog a few weeks ago. I have been so blessed through your words. You have a special gift – thank you for sharing it with me. I have found strength and courage here. No, I don’t have CF but my 26 year old son does. He just had his transplant evaluation. It is difficult on a parent as your mom so eloquently portrayed in her post. My son is severely learning disabled because he almost starved to death shortly after birth – each journey is so unique. This (tx) is all new and finding your blog has been such a big help.

    I don’t know you personally but I picture you in the palm of God’s hand being held up and protected by Him as you continue to show strength of character I’ve not seen before. I have a friend and her daughter went through her tx in 2001 (CF also). It wasn’t a great fit. She rejected in 2004. Thankfully, after being told she only had about 2 days to live her surgeon found her pair of “perfect” lungs. She now works 12 hour shifts as a nurse with pediatric Cancer patients – her dream. She is doing awesome.
    I know it is hard to wait but I know God is working this out for your good. YOUR new lungs are going to be perfect for you. First time around! Keep believing that!! So thankful your team is being super picky. So thankful you are so strong. Thank you for sharing your journey. Thank you for sharing you! God bless you and keep you!!


    Psalm 46:10 “Be still and know that I am God.” Lean on Him as you continue to wait for His timing

    Romans 8:28 “And we know that in all things God works for the good of those who love him.”
    Remember, faith doesn’t make it easy . . . it makes it possible!

  8. As always you are an inspiration to me! I am so very thankful you are home tonight and doing well and get to spend Easter with your family. I have had you in my thoughts all weekend and I am glad you are doing good. XoxoX~~Jen

  9. You are amazing Piper! Lots of love to you!


  10. The Universe is absolutely unfolding as it should! :)

    I can't think of a person more prepared for the real deal than you! I actually think it's pretty amazing that you've had so many dry and now 'damp' (ha!) runs... that means that people are being donors and the Universe is just being so selective for you... how wonderful!!!.. that's how I see it anyways!

    When I was walking around NYC, I thought of you several times and could literally feel you bustling around your home town as a high powered attorney with more energy and zest than you've EVER felt and I got sooo excited for you... SO, that is how I keep picturing you!!!

    Soon, Cyster, soon... xoxoox

  11. You have such a wonderful attitude about it all. I can't imagine how hard this has been for you to go through. As I commented last night when your sister posted, God has the perfect lungs for you out there and you'll get them soon. <3

    Jen (Mommy2Zeke on the CF board)

  12. Keep up that spirit. I admire your spunk through all these "damp runs". Please rest up because your time has to be around the bend.

    Two questions...what is your blood type? Does Columbia do compatibility transplant or must the blood type be an exact match? I am only asking because you have has do many offers for lungs. I am B+ and Brigham only transplants actual blood type matches. I had a 7% population pool to pull from.

    I hope you have a restfull weekend.

    Big hugs,

  13. Piper you are amazing, without a doubt. I don't know what else to say. Stay strong & you already know everything that most people need to be reminded of (fate, faith..etc). I pray that you'll have new lungs sooner then you dream :)

    Lots of love & hugs <3

  14. i'm glad your not down your outlook on life amazes me and i'm happy even though u didn't get the lungs that your ok! keep strong and keep breathin! your lungs will come!

  15. As everyone has said, you are amazing. Through all of this, you comfort us. After all you have been through, I know YOUR new lungs will be amazing.

  16. Way to go Piper! Thank you for this amazing Easter morning story. We are praying for you. Judy (Jack Williams sister) and Douglas Atwater. God Bless You.

  17. You are so amazingly inspirational! I hope good things come your way, and that you do get the best of the best, with lungs and everything else!!

  18. God bless you, sister! We (Leah and I) have been in disbelief over and have been praying for you over here in Santa Cruz.

  19. I live in NC and Tiffany (Sick Girl Speaks) spoke at our CF Family Day this past year in Chapel Hill. She is AMAZING!!! Check out her web page and send her an e-mail! (