Heidi’s Story

Site created on December 6, 2007

Hey! My name is Heidi. On December 6, 2007, I packed up and moved to St. Louis to wait for a double-lung transplant. Less than a month later, on January 4, 2008, I got the call for my transplant. Everything has gone well and I arrived back home in Lawrence on March 27, 2008! 

A bit more info: I was diagnosed with Cystic Fibrosis when I was 18 mo. old. My parents took the responsibility of caring for my lungs until I was old enough to care for myself. Before my double-lung transplant, I tried every form of chest physio-therapy that I know of (CPT-clapping, vibrating massage, FLUTTER, The Vest, PEP, Autogenic Drainage - there's probably more. . .), but my PFTs (pulmonary function tests) were such that it became very hard to breathe.  I gave lung transplantation a lot of thought - we visited Barnes-Jewish Hospital for the first time in July of 2007 and learned a lot about the process. Within the next six months, it got a little harder to breathe and a lot easier to make the decision to be listed for new lungs.

My mother, Tracie, and my husband, Brad, took turns every two weeks staying with me while I went through the rehabilitation process.  It still remains a challenge to keep the rest of my body up to pace with the great new capacity of my donor lungs, but it's a challenge for which I'm very grateful.

Newest Update

Journal entry by Heidi Karn Barker

I sit here in my room at KU Med during a photopheresis treatment in wonder that we're now in the year 2020.  How magnificent to achieve another year of life! 

I realized today that I hadn't posted on caringbridge since last May (!) and I'm sorry about that.  I started posting updates on facebook last year, and thus neglected to keep this site updated as well.  The second part of 2019 was mostly boring, health-wise, because my health was pretty stable.  I still haven't caught the flu virus yet this season and I'm hoping to keep it that way!

Tomorrow is my father's birthday, and because of my transplant twelve years ago on January 4, I feel like there's double the reason to celebrate the start of each new year - it's a new year of life for the both of us!  

I'm extremely grateful for my husband - he continues to demonstrate patience and grace when we face difficulties, which helps give me the strength needed to face another day.  For all of us, there's the personal strength pulled from within, but that extra bump we get from others, that encouragement, gives us just what we need when we need it most.

I hope the new year brings each of us happiness and joy.  There's joy to be found in even the most difficult of days; we might just have to look for it, but it's there.  

Happy new year.  Thank you for your love!
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