How a double-lung transplant affected my body and self-image

After I had a double-lung transplant six years ago due to cystic fibrosis (CF), it was hard to look at myself in the mirror.

I would stare at my stapled chest, and feelings of disbelief and grief would bubble to the surface like never before. Thoughts raced through my mind: What will people say when they see my scars and disfigured chest? How will I ever feel comfortable in my own body again?

Before my transplant, part of my identity was having a good physique. It’s challenging to gain weight with CF, so I’ve never had to work at being thin. I had minimal body fat and six-pack abs (due to coughing so much). I may have struggled to breathe, but at least I looked good.

While the circumstances determining my health — failing lungs, pain from nonstop coughing, and exhaustion from oxygen deprivation — were out of my hands, I was in control of my appearance. That felt like a gift. So I wasn’t prepared for the aesthetic changes to my body that transplant caused.

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I used to have long, thick hair, but that ended almost immediately after surgery. While I was in the intensive care unit, a hospital worker tried to braid my hair but created a giant knot that couldn’t be untangled. My hairdresser had to chop off my long hair to cut the knot out.

Then my hair started falling out in clumps due to the trauma of surgery and the new medications I was taking. I remember sitting on the floor and sobbing as I combed my hair after a shower. I was distraught, thinking I didn’t sign up for this mess.

During surgery, doctors took a portion of my breast tissue to connect my chest together. They also sawed through my sternum, which altered the bone structure. I’ve had to grieve these changes.

Maintaining a fit physique has been hard since the transplant. I exercise daily, but since my lungs are healthy and I’m not coughing all the time, I can’t build my abs.

I didn’t know all of this would affect how I see myself. I know it sounds superficial, and yes, I’m grateful to be alive to tell the story. But I think we all have parts of us we wish were different.

While my hair eventually grew back, my chest remains the same, but I’m learning to be comfortable in my own skin, no matter what shape I’m in.

In my opinion, human beings weren’t made to be perfect. We come in different shapes, sizes, and abilities. The work lies in seeing ourselves through the creator’s eyes.

During a recent somatic exercise class, the tears began freely falling down my cheeks. As I looked at my scars, I reflected on the hell my body has endured. My perspective began to change from grief to gratitude for the body I have. I’ve survived something that should’ve killed me, after all.

I’m thankful for a body that is resilient, strong, and steadfast. It has carried me through trauma and dances with death. My body has powered through and come out on the winning side. I’m still here, and I’m proud of overcoming all I’ve endured.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.