Waiting for a CF lung transplant? Here’s what you need to know

Six years ago, I had a double-lung transplant because of severe cystic fibrosis (CF). I found the process traumatic, mostly because I didn’t feel prepared. I wish someone had taught me all the things I learned during that season of my life.

To help others on a transplant waiting list avoid feeling that way, too, I’ll share some of what I gained as an insider during my transplant journey.

First, it’s essential that you guard your mind. Be careful what you’re listening to, reading, and watching. Everything will have an effect, in both good and bad ways. Your mental health needs to be strong to endure the transplant process.

Set firm, healthy boundaries for your time and energy. Your body is working overtime just to survive. You don’t need to apologize or justify to anyone how you spend your time. Take naps and protect your energy; you’ll need it for breathing.

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Decide what you will and won’t talk about. It’s important to focus on the best outcome possible. Surrounding yourself with people who agree with your belief in that result is critical. I had to tell folks they couldn’t talk to me about their feelings, especially if they were afraid of me dying. It hit too close to home. That conversation belongs in their personal therapy sessions, in my view — not in conversations with me or anyone going through transplant.

Be intentional with your time. Spend it how you want by doing things that feed your mind, body, and soul. Don’t waste time doing things out of obligation. I filled my time reading, journaling, listening to music and podcasts, watching funny movies, and sitting in the fresh air. These activities kept me sane and grounded.

Don’t waste your breath. I had to be supercautious about what and whom I spent my breath on. That’s a real thing! Some people are just committed to misunderstanding you — so let them. Every moment is precious, so minimize activities that don’t bring you joy. Protect your peace.

Carrying a heavy burden

Find a therapist who can walk through this process with you. You need the perspective of a nonbiased third party to process this challenging season. Trust me, it’s a lifesaver.

Find something outside of yourself to cling to for hope. It’s too heavy a burden to carry by yourself. For me, that’s God. It might be different for you, but it’s helped me when things feel out of my control.

Find your people. I’m talking about those who can sit with you without trying to fix your situation or sugarcoat it. You need people at your side who’ll weather any storm.

Advocate for yourself. Nobody will care more about your life than you do. You know your body the best, and advocating for its specific needs is a good thing. When you can’t do it, find people who know your needs and wishes so they can advocate on your behalf.

Know your limits. I had to take a break during the transplant evaluation process after meeting with the surgeon because of the startling facts that were flung at me. Once I took a break, I came back stronger than ever and was able to handle what I had to endure.

Stay connected. The CF and transplant communities are powerful places where you can lean on people who get it. And you’ll make the best of friends in the process.

Above all else, embrace this season. I know it’s hard to sit still when you feel like your life is on hold while the world moves on. But if you learn all you can during this slow-paced time, it’ll be rich and rewarding later on.

And get ready, because once you get your transplant, you ‘ll want to hit the ground running, literally! Trust me.

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.