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

Hello!  Thankfully, it’s been a quiet few weeks.  I got approval last week to quit wearing the walking boot; the doctor said there was a good bit of calcium built up around the break in my foot and that as long as I took it relatively easy for a while when I walked for exercise, I should be fine.  I have started walking again, but my progress is a little slow since it’s been a while.  But progress is still progress!

I will have my third port placed in mid-June, this time on the left side of my chest.  I don’t think it matters how many times I’ve had one of these put in my body, it’s always a little nerve-wracking and scary.  However, I know how much I like having the port after the initial surgery – it’s such a great help with photopheresis treatments, so I’m focusing on these positives as we near the surgery date.

In the meantime, I have two photopheresis dates coming up where we will have to use a peripheral IV line, meaning just a regular IV, but because the photopheresis process requires a larger needle size, it is a bit more painful (one reason a port is so helpful; it eliminates much of that pain).  So on June 6 and 7, I’d appreciate all of that good stuff you usually send me.  Then the port placement will be the following Tuesday, June 11, in the afternoon.

June will be a busy month.  On Monday, June 17, Brad and I will be in St. Louis for a check-up.  As always, I am nervous about this appointment because we will see what my PFT numbers are, and I’m hoping there will be no decline, but rather a nice, steady bit of maintenance of the same numbers as those in my tests last month.  I am feeling okay and am only occasionally short of breath, and I can still sing, which is usually my own personal measurement of how well my lung function is managing.  Also, speaking of personal goals, I’ve lost some of the weight I had gained earlier this year due to the amount of steroids the doctors had prescribed.  This has definitely helped in terms of how I feel; it’s so nice to not have that extra weight bogging down my body.

We’ve received a lot of help from family these past few months and I’m constantly thankful for my and Brad’s families’ closeness and dependency on each other.  We are so very lucky and blessed by our families, and sometimes I feel they don’t get the credit they deserve for helping keep us on our feet.  This applies to our extended family as well.  Aunts, uncles, cousins – these people check on us and remind us we are loved.  So, my wish for you today as you read this post is to reach out to someone who is family to you, whether biological family or chosen family, and just tell them you love them.  Love is the thing, you know.

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