Wednesday, March 31, 2010

This is Hard

I'm not quite sure how to even sit down and write this post. Emotional roller coaster doesn't even begin to describe the events of last night, but I guess when in doubt, go with the cliche. And I guess in some ways, a roller coaster image is fitting: the highs and lows, the feeling of racing along a track over which you have no control, the slow motion of the moment contrasted with the whirlwind feeling you get when the ride is finally over, that whole "did that even just happen?" feeling of stepping out of the car.

This is hard.

Yes, this is Piper writing again. No, I'm not the world's most amazing recovery artist. Yes, that means I didn't get the lungs. The right lung, once again, wasn't perfect, and in this game you don't settle for any maybes. I'm so grateful to Columbia for being discriminating, for searching for lungs that are absolutely right for me, and for having the courage to pull the plug, even after 9 hours of build up, when the right lung just doesn't look...right.

Still, this is hard.

My right wrist is bruised beyond recognition from the arterial line -- a yellowish purple battle scar to remind me of the physical pain that is just a part of this process. My heart is bruised too, in a way that it wasn't after last week's dry run -- an invisible yet poignant scar to remind me of the emotional pain, the loss, and the tragedy that is also a part of this process. And, after two calls in less than two weeks, my hope is higher than ever that MY lungs are close behind all these rehearsals -- a beautiful light to hold onto to remind me of the beauty that is, of course, just a part of this process. It is all just a part of transplant -- such a miraculous, cruel, amazing, delicate, unpredictable science.

And it is hard.

So today I remind myself that hard doesn't always mean not worth it, and that for every "dry run" I've had someone else has been given a gift beyond measure. I remind myself that people are donating, that calls are coming, and that human kindness is flourishing and that strangers are constantly changing each others' lives through the simple choice to give not only of their money or time, but of themselves. I remind myself that it is not just my desire for new breath that controls this process, but a much wiser, more loving plan. I remind myself of all of this, and I promise to hold it all in my heart, to remember.

But, truth be told, it is hard.


  1. Hey Piper...Lex aka Tim here....very touching blog today. I had 2 dry runs in 10 days, too. The third time was a charm. But Dr. Wilt told me after the second dry run that if I knew it would take 10 dry runs, I would gladly go through the first nine. Well, it only took 3 shots.

    I know it's hard. But believe that it WILL happen very soon. From the sound of it, I'd guess you'll have another crack within days.

    I know it's hard. The second "no" was the toughest.

  2. You are so strong. Your words are inspirational on so many levels. I can only imagine how hard it is. You have a lot of people praying for the right lungs to come along~ Thanks for sharing your feelings. There are others in your same situation who are strengthened by you.

  3. I'm so sorry that they haven't found the perfect ones yet. It is so hard! It'll be soon! We'll probably all get ours at the same time and be freaking out because we won't know about each other's recoveries!

  4. Although I never went through a dry run, I know that it's hard. I cried when I read your blog because I can feel the pain that you are going through. As for the arterial line, that fricken thing is the hardest thing to go through. They tried mine on my upper arm, in the bend of it, and after like 4 tries, they finally gave up and just put it in in the OR.

    The calls are coming in, which means there are lungs out there for you. Be as patient as you can, stay strong, and know that I am here for you if you need me.

    Much love to you today and always.

  5. Oh Piper...when I heard you were in the OR the first thing I said to Jim was "I hope this is IT"! Then he sent me a text at work this morning saying "dry run". Man, my heart just sank when I read that! I am deep down inside hurting for you and everyone else that is affected by this. The time will come, I just know it! Unfortunately, none of us know when it will be. Hang tough Piper. Jim and I are always reading your blog. Thank you for sharing your story!

  6. Oh Piper - I"m sure "hard" doesn't even begin to convey everything you are feeling. For whatever it's worth, know that you are held up in prayer and in love. I envision God/the universe/light surrounding you in love and care. This is what I'm sending out for you.

  7. I can't imagine how hard this is for you Piper. Know that you are in my thoughts and the right lungs WILL come! And boy are they going to be perfect!

  8. There are lungs out there, and I'm sure they will be coming your way soon. The battle scars will just make the final victory that much greater. I'm praying that day comes soon! :D

  9. No words can convey what I would like to. All I can say is we are all going to get through this and come out on the other side better for it. All the pain and suffering will be worth it. I take the word of Tim and Jamie to heart, both people who are right where we are. None of this rambling helps, but know we care.

  10. Piper, I have heard of so many that have had "dry runs". I can only imagine the anticipation you are feeling. I know the perfect lungs are out there for you right now and in God's time they will be yours to keep forever. Thinking of you now and praying for your chance. Keep strong.


  11. Oh so sorry. I thought of you all night/day hoping that this was your call. But your right in this waiting game that we have we can't settle for anything less than perfect and yours, mine and anyone out there who is waiting's "perfect pair" is out there and we WILL get the calls! Keep being your positive fabulous self and you will do great. We love you Cyster! XoxoX

  12. Piper this breaks my heart. Please keep your focus, and know that it will come when it's right, and not a moment sooner.

    I know you follow Leah's should go read some of her back posts. She's given me so much inspiration, and I'm not even walking the transplant path!

    You're such a strong, beautiful woman. Keep your head high, and know that those lungs are on their way.

    Love always

  13. oh, i am so sorry. i can't imagine how hard that must be... i can't believe you are able to post a blog!

    you are very strong... the arterial line is the hardest part, so sad you have to do it more than once!

    hang in there piper, i know you will!

  14. i feel for you, piper. i know the roller coaster of dry runs and, even in knowing that they mean you are so close, it can also make it feels just so far away. i admire your dedication to looking at the bright side and honor your bravery to admit it hurts too.
    just as a side note, i learned to tell them i didn't want my lines inserted until i was in the OR and we knew it was a go. so much pain from the arterial line in particular. they can do that after you go to sleep.
    much love.

  15. Hugs to you! I was so bummed when I heard it was a no go. I cannot even imagine how disappointed you must be. I trust that you are in good hands with your mom and your doctors. You always say that you are working with a great team so I trust that they are waiting for absolutely spectacular lungs for you.

  16. I'm so sorry that it wasn't a-go this time. I was really hoping and praying it would be. I really admire you're willingness to blog about this expirience and to share it with so many others...

    I'll be thinking of you!


  17. I'm sorry you had another dry run, but I am also glad Columbia is so discerning. I hope and pray you get your new lungs very soon!