8 life lessons since having my double-lung transplant

My life with chronic illness has been a tumultuous ride on multiple levels, but I’m also grateful for the life I’ve been granted, especially since my cystic fibrosis (CF) spurred my double-lung transplant in 2017. I thought it’d be fun to share eight lessons of life and health that I’ve learned to commemorate these past eight years!

First, joy and grief can coexist. I carried immense guilt for being sad and grieving the life I had before my transplant. I felt external pressure to be happy and grateful all the time because I was alive. While I was filled with joy for the gift of new lungs, I also held grief in my hands. Turns out, both can exist — and that’s OK.

Second, life with CF is different from transplant life. Of course, I still have CF, as evidenced by my pancreatic insufficiency, digestion issues, and continued sinusitis. But my transplanted lungs are healthy, clear, and strong. While that’s the major difference, my transplant has brought on other health issues I’d never experienced and didn’t expect: kidney disease, steroid-induced diabetes, and a suppressed immune system.

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Third, I don’t have to be as attached to my care team post-transplant. I went to a CF clinic weekly before my surgery. After it, my situation changed dramatically; in fact, it felt unnatural not to need my regular check-ins with doctors. Now I see the team that treats my CF and monitors my transplant every three months, and I only check in between my appointments if I’m sick.

Fourth, medical trauma affects me every day. As I continue working through the physiological effects of my trauma from years of surgeries, hospitalizations, and daily health struggles, I recognize how present the trauma and its side effects are in my body. It’s a continual process to retrain my brain to accept my physical safety after several near-death experiences.

Stressing the positives

Fifth, I’m no longer in survival mode. That’s taken significant retraining of the brain, too. After living for 30 years in a state of hypervigilance, I find it challenging to trust my body to work. I’m learning to lean into this discomfort so that I can actually enjoy thriving after my transplant.

Sixth, because of my transplant, I’m capable of more than I believed was possible. The more I function outside my old comfort zone, the more I get to discover what I can do — which is beyond what my capacity had been for 30 years with CF lungs. This wider zone of capability has transformed my career, travels, and confidence on every level.

Seventh, I don’t have to prove myself to anyone. For years I attempted to keep up with the able-bodied community because I felt external pressure to be “normal.” That resulted in my working myself nearly to death. While my health has been transformed for the better, I still struggle and regularly don’t feel awesome. Not everyone understands that. But I no longer overexplain myself to meet people’s expectations when it comes to what I participate in. “No” is a complete sentence.

Eighth, I see my value on a whole new level. I wish I’d learned this earlier in life, when I was so sick before my transplant. I relied on society’s standards in attributing my worth to my productivity, which had a detrimental impact on my mental and physical health. I’ve since learned that my value is tied simply to who I am — period, end of story.

I owe it to myself, God, my donor, and loved ones to be unapologetically myself. That’s the greatest gift I can give the world in return for my gift of new life.

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.