In His Own Words

Luke wanted to talk about his imminent surgery and tell you what it's like to be in his shoes. We sat down and talked with him earlier this week, & this is what he had to say.

“At first I wanted the surgery for my looks, but now I want it because it feels like I am closing up, like I’m breathing through a tube that’s shrinking. I watch everyone run around and I see how they last longer with their breathing. I have to stop before them and catch up with my breathing. I feel frustrated and less than I can be. I have more energy but I can’t go further, I have limits because I have to catch up with my breathing. I don’t like having limits.”

When asked what his sunken chest feels like, Luke responded, “It hurts! I thought at first that it hurt everyone to run. When people finish running they can take a deep breath. I can’t. It’s like I can’t take enough of a deep breath, but instead I cough it out. Every time I try to take a deep breath, after I’m running, I go to breathe air into my lungs but my lungs are tightening. It blows air out really quickly, and I have to sit down to catch up. Now even when I do little things my breathing feels like my chest is closing in and my lungs are being stopped by my chest.

It’s like my lungs are being pushed, like you put a balloon in a jar and when you blow it up to a certain point you can not blow it up any more until you let the air out and blow again. My chest is the jar and my lungs are the balloon. Sometimes I’m not able to take a deep breath. It feels like I am slowly dying, something slowly is happening and I am getting worse and worse. I know I am not going to die, but that’s what it feels like sometimes.

I can do more, but my chest is holding me back. I feel like I’m less of being myself - that I can go further. I try to make my breathing not noticeable. I try to hide it. I don’t want people to think of me as weak.

I wish people could feel like I do so they would understand. I have so much energy inside of me but my breathing is holding me back. I am never able to go as far as I know I can – my breathing stops me, and I feel like I will bust.”

In his own words.


  1. We are praying for you, Luke. My husband and daughter have Marfan syndrome. My husband does not have pectus excavatum, but he has had his valve replaced. My daughter is 8, and she does have the pectus excavatum. May Christ grant you peace during this surgery and during the recovery.

  2. Thank you for your prayers, M. They are truly appreciated. And thank you for sharing about your daughter and husband.

  3. I have made a donation to your foundation as a memorial gift for Noah who is truly a hero. I hope this gift helps Luke and all of your family. May God bless and comfort all of you.
    Sandy & Harry Johnson
    6827 Rosemary Lane
    Charlotte, NC 28210-7018

  4. Thank you, Johnson family. As you said, Noah is a hero, and we appreciate you taking the time to honor his memory.


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