How my life after lung transplant differs from my life with CF

Five and a half years ago, I received the gift of a lifetime: a double-lung transplant that gave me back my breath and, in many ways, my life. After decades of fighting cystic fibrosis (CF), I finally felt free.

And then reality set in.

Nobody tells you that a transplant isn’t a finish line. It’s more like a beautiful, necessary, lifesaving detour that leads you onto a completely different road, with its own set of potholes. I traded CF for a new set of challenges, and more than five years in, I’m still learning how to navigate them.

I want to talk about this because I think too many of us suffer in silence, feeling guilty for struggling when we’ve been given something so precious.

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Post-transplant struggles

One of the things that has surprised me most is brain fog. Some days, my thoughts feel like they’re moving through wet concrete. I’ll lose words mid-sentence, forget what I walked into a room for, and struggle to focus on tasks that used to come easily. This isn’t laziness or aging; it’s a real side effect of the immunosuppressant tacrolimus, which keeps my body from rejecting my donor lungs.

This has been a difficult one for me. Between my previous nursing career and raising a child, I felt I was a master of multitasking. It’s a punch to the gut when I can’t remember a common word mid-sentence. If you’re experiencing this, too, please know you are not imagining it, and you are not alone.

Post-transplant life means a new vocabulary of things to monitor. One of mine is Epstein-Barr virus (EBV). Because immunosuppression intentionally dials down the immune system, viruses like EBV can reactivate and, in some cases, lead to a serious condition called post-transplant lymphoproliferative disorder. Regular blood work and staying on top of these levels isn’t optional; it’s part of my new normal.

Here’s one that caught me off guard, especially as someone who loves the sun: Transplant recipients have a dramatically higher risk of skin cancer. The Skin Cancer Foundation notes that the risk of squamous cell carcinoma is 100 times higher in transplant recipients than in the general population, largely because of immunosuppression. I now see a dermatologist regularly, wear sunscreen daily, and have become that person who wears a hat during the summer. It’s a small adjustment with potentially lifesaving consequences.

Many of us with CF spent our entire lives fighting to gain weight — high-calorie diets, enzyme adjustments, and the constant battle with the scale. Post-transplant, between chronic steroid use and actually absorbing nutrition properly, the script flips. I’ve had to make peace with a body that looks and feels different from how it did before. I now experience “moon face,” osteoporosis, thin skin and easy bruising, muscle weakness, and mood changes, to name a few. These side effects cause a unique kind of grief that doesn’t get talked about enough.

Living beyond

Here’s what I want you to hear in all of this: I would make this choice again in a heartbeat. My donor gave me years I wouldn’t have had. I’ve made more memories than CF was slowly stealing from me. The trade is real, and some days it’s hard, but so is the beauty on the other side of it. Despite all of the above, I am grateful for every single minute of this life after transplant.

The truth is, post-transplant life is complicated. Some days it’s messy and exhausting and nothing like the triumphant “after” story you might have imagined. It’s just as complex as living with CF was. There’s a new set of things to learn, and a new way of living to figure out. The learning curve doesn’t end; it just changes. There are new medications to understand, new risks to watch for, and new limitations to accept, alongside new freedoms to celebrate.

Facing a transplant is scary, no doubt. One line of thinking is that we have already proved we could learn to live with CF. We have already shown up, day after day, for treatments and clinic visits, hospitalizations and procedures, hard conversations and harder days. We know how to do this. We know how to adapt. Post-transplant life is the next chapter of that same strong resilience, written in a different language we’re all still learning to speak.

Living beyond doesn’t mean living without struggle. It means choosing to keep going anyway, brain fog and all, armed with knowledge, community, and the hope that got us this far. I know I wouldn’t have gotten here without the support of others who have gone through it before me, and I am beyond grateful to those who shared their journeys. I hope mine can help someone else as well.

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.