Interview with Karen Couture 

Interviewed by Derrick Krout on November 9, 2002

BIOGRAPHICAL SKETCH: 

Karen Couture grew up in Fitchburg, Massachusetts, and had a relatively normal childhood.  Her health was good, and she always stayed active by playing sports and exercising frequently.  At age thirty-one, Karen's life took a drastic turn for the worse when she was diagnosed with a very rare lung disease called Lymphangioleiomyomatosis.  After a difficult and frustrating time waiting for THE CALL, Karen finally ended up at Chance Hospital in Gainesville, Florida, and received a double lung transplant.  Karen is currently thirty-eight years old, and still lives in southern Florida by herself.  She now sees her doctor once a year, and is doing very well.  She has stayed very active by participating in the Transplant Games, and she has also written a book called, "The Lung Transplant Handbook,"  which covers the entire transplant process from beginning to end for both heart and heart-lung transplants.  Karen plans on writing another transplant book over the next couple of years, and she even wants to train her dog to go into hospitals and visit patients. 

 

Excerpts from Transcript

Excerpt 1 | Excerpt 2 | Excerpt 3 | Excerpt 4 | Excerpt 5

Excerpt 1

 

Background: 

Unlike many other people suffering from lung disease, Karenís childhood was not different than any other healthy personís childhood because she contracted her lung disease in adulthood.  She was asked whether it was difficult to go from being healthy all her life to struggling to just grasp a fresh breath of air.

 

Excerpt:

I went back to work, but I went back to work part-time.  I just tried to cope with the fact that at thirty-one I had a rare, and it turns out fatal lung disease. 

 

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Excerpt 2

 

Background: 

It seemed like the Internet support group really helped Karen get through the waiting process before she was going to have her transplant.  The support group was good because Karen was able to just talk and vent her feelings to these people, and they understood the condition she was in. 

 

Excerpt:

It was kind of hard being a younger person seeing and feeling kind of jealous of the healthy people.  It seemed like the only people that understood were people that had been through something like this.  I found an Internet support group for transplant, and it was really for everybody and that was really helpful.

 

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Excerpt 3

 

Background: 

Imagine waking up after having a double lung transplant and taking your first breath of air, and knowing that you have someone elseís lungs in your body, it must be a breath-taking experience.  It is truly remarkable to see the improvement in Karenís lung function capability as a result of her new lungs. 

 

Excerpt:

But then when I had a real waking moment, the first time I had took a breath I realized that my lungs were gone, and these were new healthy lungs.  I was able to exhale for the first time in a long time; it was easy to breathe, so that was pretty amazing.  I think I went in with about 20% lung function.  I was in the hospital for two weeks, and I think they did a breathing test and it was up to 67%.

 

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Excerpt 4

 

Background: 

This quote really gives you a good idea as to what the recovery period was like for Karen.  Taking all these different types of drugs had really taken a huge toll on her health and ability to function normally.  Although she was given a second chance on life, this was the hardest thing she had ever had to go through.

 

Excerpt:

Pretty much my experience with the drugs was that it made it feel like my blood was boiling in my veins, and it was like that for a year (laughing).  I got over the surgical pain, and that lasted about four months, and then after the first year they give you really high doses in the beginning so you donít reject.  So things got better after that (laughing).

 

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Excerpt 5

 

Background: 

It must have been very scary for Karen to find out that she was at the bottom of the wait list.  Her health was declining fast, and there was no way she could have survived the wait list in New England if she had stayed there.  Karen was truly a determined and persistent patient that wasnít going to let anybody step into her way; she was going to survive no matter what she had to do.

 

Excerpt:

So at any rate, I started thinking that I wasnít going to survive the wait in New England.  I had called the New England organ bank, which is the organ procurement organization for that area or that hospital, and I must have talked to an intern because I called as a member of the public; I am not a doctor.  I said that I am on the waiting list for a lung transplant, I am A-positive and I am just wondering how many A-positive people are on the waiting list.  She told me that there were 50, and theyíre not allowed to give out any information to patients so I kept figuring it must have been an intern.  So then I started checking numbers, and statistics kept by the United Network of Organ Sharing to see how many transplants were being done in the region.  I think New England was only doing about 18 or19 lung transplants a year, and at the time there were 4 hospitals doing them.  Here I am at the bottom of 50 just A-positive, and it just seemed like I was going to die in a year and a half (sarcastically laughing).  I didnít feel like I was going to survive the wait.

 

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For more information, contact Dr. Mary Jo Festle, Associate Professor of History at Elon University.

Email: festle@elon.edu

This page last updated 11/24/02