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

This afternoon, I accepted KU's offer to work from home until there's more of an understanding of this new version of the coronavirus (COVID-19).  Last year, I was diagnosed with having an already known version of the coronavirus, so I'm hoping that having had an already existing version might lend me some immunity to this novelty strain.

I do think remaining positive, as well as reasonable, is always a good goal when facing adversity.  I have been told that there is already a shortage of the fluids provided during the most basic of treatments, and that these shortages will be affecting whether patients are able to receive treatments.  Right now, my current treatments do not require these fluids (including basic saline to provide hydration to someone who is ill), but if I were to develop an infection, I most certainly would be in need.  But at this moment my thoughts are focused on those people who do need these medical supplies in order to heal, in hopes that this shortage will end soon.

I hope you are well, and that you stay well.  We'll get through this.
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