23 November 2010

A Follow Up To "A New Set of Lungs" Post

This morning, we received a really nice comment from a man, who has CF and is living with a new set of lungs, on Bennett's blog regarding yesterday's post.  I have posted his original comment below in bold.

I found this man's story even more compelling when I read why his website is called "Climbing for Kari."  To find out yourself (it will give you chill bumps), go to and scroll down to the picture of the cute girl smiling. 

Bennett's Cystic Fibrosis has not only focused our attention on the importance of living in the present and appreciating the gift of good health...but it has also given us a greater appreciation for organ donation.

Brian and I hope to both be donors when we die.  And we hope that should Bennett, when he is older, need the chance for a new set of organs, someone will give that gift to him.

"Hi Breck!
Thank you for telling us about your friend and his new lungs -- I will keep him in my thoughts and prayers...

It is a truly amazing thing -- after living your whole life with crappy, cystic fibrosis lungs -- to be given the chance to breathe, "normally", freely and easily -- it's mind-blowing...

The first breath is not usually exhiliarating - the lungs we're given have undergone incredible trauma, and they're being put into a chest that has been opened and has gone under incredible trauma -- it can take months before we breathe deeply -- but for most of us, it is amazing from the very start... I remember when I regained consciousness and I was breathing without the vent -- I was on room air before the next day -- but breathing is often in short breaths, panting almost... But I remember looking up at my monitor, on room air, and seeing my O2 sat at 95 and I started to cry. I start to cry when I think about it now... That was 10 years ago for me.

I hope your friend's journey is like mine -- I hope his recovery and his life after transplant is as amazing as mine has been... He's in for an incredible ride... I learned about the beautiful girl who saved my life a few years after I received her lungs. After struggling almost 40 years with cystic fibrosis -- this breathin' stuff with "real" lungs blows my freaking mind. I think about it constantly - and I think about her throughout the day, every day. I can see her smile when I close my eyes... I have some of our story at  I hope after struggling with his lungs for so long - that your friend's journey is like mine...

And I hope that your precious little one benefits from those of us who have gone before him... I've been hearing about a cure or treatment for CF being "just around the corner" for the better part of 40 years now... It won't serve any purpose for me now -- but I've never been more excited for people like Bennett than I am at this time... I hope we find something that will allow you to cuddle his grandchildren...

Love, Steve

Steve Ferkau
Chicago, IL" 


  1. Thank you, Breck... You have no idea how special it is to me that you posted this...

    I don't know what it's like to have a CF child - though my Mom & Dad know... I have to imagine the fear and the hope strike a precarious balance. I know my Mom never imagined I'd live 50 years, nor did I - but I have... I hope your Bennett has twice as many years as I've had...

    I tell everyone I can about Kari - it's my way of keeping her smile and spirit alive. In my heart, that is my purpose in life now - and it has a little side effect... It also helps people understand the pure goodness in organ donation and donor's like Kari, and families like Kari's family - and I make sure people understand that so that if someone like Bennett ever needs a gift like I've been given, he will hopefully get it...

    You take care... Thank you so much.

    Love, Steve

  2. Crying [no, sobbing] after reading this heartwarming story. My goodness, it just breaks [no, shatters] my heart to think about people who struggle to breathe and rely on organ donors/a lung transplant to save their life. This was a deeply touching story about two heroes: Kari and Steve. Kari for giving Steve her lungs, and Steve for honoring Kari's memory, raising money and encouraging others to consider doing what she did. Steve seems like a man of such depth and compassion. I have planned on donating my organs since I received my first driver's license -- and this story serves as a powerful reminder why. Thank you for sharing this; it's certainly appropriate for Thanksgiving.


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