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New year. New lungs.

I’ve had asthma and chronic lung disease since I was very young. I had to use everything — from my head to my toes — to help me breathe. I remember being able to hear myself wheezing, to feel my lungs rattling. I had marks all over my face from my oxygen mask. I thought I would never be clear of mucus and never be able to walk without being out of breath. All I ever wanted was to breathe. I spent so much energy trying to breathe that I didn’t have much left for eating, so I was really skinny. I spent a lot of time in a wheelchair. When I was able to walk, it would be for short distances and my shoulders would slouch downward. People would stare and point at me. I wanted to tell them, “It’s not my fault! I’m sick.” It was so frustrating. It was helpful to keep a journal with quotes that inspire me, like, “The tongue has no bones, but it’s strong enough to break a heart.” Once you say something, you can’t take it back, so if you see someone with a disability, be nice or just don’t say anything. My friends at school were also nice and supportive. They would ask questions and I would try to explain. If they didn’t understand, I’d give them a list of words — COPD, hypoxia, bronchiectasis — to look up. I’ve always loved school, probably because I know what it’s like to be too sick to go. Whenever I had to miss school, I’d do worksheets at home and email them to m...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & Conditions Our Patients’ Stories chronic lung disease double lung transplant Francis Fynn-Thompson Gary Visner Lung Transplant Program Pediatric Transplant Center (PTC) Source Type: news

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