I’m still healing from trauma 7 years after a double-lung transplant
Lung transplants aren't like a light switch you can just turn on
It feels surreal that I had a double-lung transplant seven years ago. The season of life leading up to my transplant is still present in my mind as I reflect on what I went through physically and emotionally.
Going through the transplant process was traumatic. Today, I continue to experience residual effects that I must work through in order to heal.
For 30 years while living with cystic fibrosis (CF), I had to constantly think about my breathing. I had to continuously clear my lungs of thick, sticky mucus. I faced breathlessness, daily airway clearance maintenance, and frequent respiratory infections. My short and shallow breaths were a result of my struggle to get air.
Contrary to popular belief, having a double-lung transplant isn’t like flipping a switch and then everything is fine. After the surgery, it required hard work for me to learn how to breathe normally. Even today I sometimes have difficulty taking long, slow, and deep breaths.
Before I fall into bed at night, I still occasionally reach for supplemental oxygen that isn’t there anymore. It takes me a minute to realize that I can breathe freely without it. I’m unlearning deeply rooted thought patterns that stem from my past need for hypervigilance.
My new lungs didn’t come with an owner’s manual. Trusting that they won’t fail is uncharted territory for me. My mind still alerts my nervous system to be cognizant of dangers.
Rewiring my brain to believe that I have healthy lungs is challenging. I’ve worked hard to do this with somatic practices, which focus on addressing both mental and physical challenges, as well as more typical therapy to train my body and mind. I also exercise, pushing past my previous limits without a threat to my life.
Honesty about my feelings
A significant piece of the healing puzzle is being honest about how I felt throughout the transplant process. I’m learning how to articulate what my soul felt like while I was literally dying. I never told anyone how scary it was to live in my body, knowing that my lungs were failing. I never expressed the deep sadness I felt because I couldn’t do anything about it. I felt so alone. It was an isolating period of my life.
For years I never talked about how hard my life is, because I didn’t want to invite a pity party or prompt sympathy from others. I didn’t want to be treated differently than others. Plus, I wanted to protect my loved ones’ feelings. But I wonder now what being like that cost me back then.
The tension between struggle and gratitude
Transplant caused me significant trauma, yet I’m grateful for new lungs. Both of these things can be true.
Suffering through medical trauma and emotional distress are heavy on every level. The aftermath of the trauma continues to impact my life. The more healing I do, the more I realize there are new layers of traumatic memories to heal from.
Breathing strongly has dramatically changed my life in the best of ways. I live to the fullest extent I ever have, and I get to enjoy things like physical activity, traveling, and a life without fear. I’m incredibly blessed to have new lungs.
I also recognize that there’s a part of me that will never be the same. I find that Proverbs 14:10 rings true for me: “Each heart knows its own bitterness, and no one else can fully share its joy.”
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.
About the Author
Juliet Styles
You are awesome. Thank you for showing your vulnerability during your battle with CF.
It’s good to know… as my son doesn’t vocalize anything…
Never wants to talk about his disease or anything.
This gives me a possible idea