Bridging the Gap Between the CF and Transplant Communities

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by Lara Govendo |

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PTSD, mental health, communities, stress, grateful, work, trauma, rare disease day, transplant, CF community, National Blood Donor Month, birthdays, holidays

I knew life would be different after my double-lung transplant three years ago, but I didn’t expect it to feel like a completely new life. The change has been intense. I feel like I barely have cystic fibrosis anymore. Feeling disconnected from the CF world has been an interesting experience. It’s a constant balancing act to have one foot in the CF world and one foot in the transplant world.

With May being Cystic Fibrosis Awareness Month, I hope that bringing this topic to light will help open people’s eyes to this struggle and bring our shared community together. There’s a tension between the CF and transplant communities that needs to be addressed. Although those of us with double-lung transplants still have CF, we don’t have the disease in our lungs. And that’s a big difference.

After my transplant, life as I knew it turned upside down. All my medications, treatments, and regimens changed overnight.

I no longer spend hours doing breathing treatments and airway clearance. I don’t have to wonder when the infections in my lungs will overpower me, soliciting a hospitalization for a two-week tuneup. Breathing is no longer something I think about every single moment of every day. I am not desperately searching for natural remedies to clear a (now nonexistent) copious amount of mucus from my lungs. Having all of this stripped from me after 30 years hasn’t been an easy transition.

Transplant life has been a sea breeze comparatively. Essentially, I pop some pills and call it a day. (I take my anti-rejection medications twice daily.) Routine bloodwork is vital because I don’t always experience symptoms when one of my levels is off, indicating an organ is angry. Keeping up with regular pulmonary function tests is also pertinent. My sinuses still carry thick, sticky mucus, and I still need enzymes for digestion due to CF. Otherwise, my condition is pretty low maintenance.

Relating to my friends with CF who aren’t post-transplant can therefore be challenging. Yes, life is difficult in some ways. I can’t exercise at the intensity I would like, and some of my physical symptoms are limiting. Although I’m experiencing non-lung-related complications, nothing compares to breathing with CF lungs.

I remember what life was like prior to my transplant, and I know that my friends that struggle with CF lungs have it way harder than I do. It’s so difficult to breathe while dealing with excessive mucus production on a 24/7 basis. I didn’t realize how hard it was until I had new lungs and started breathing in a whole new way.

I carry this unspoken guilt that my friends still suffer with CF lungs. It feels like I’ve left them behind somehow. Although I know I would have died without new lungs, it doesn’t erase the heaviness I feel when my friends struggle to breathe. On this side of transplant, it’s hard to imagine being in that space of gasping for breath, coughing up loads of mucus, and tailoring my lifestyle to my health.

But maybe that last part hasn’t changed so much. I still have to make accommodations — they’re just different now.

Maybe these communities are more alike than different.

I relate to my CF friends’ current challenges only through distant memory because that’s not my life anymore. Maybe writing this is a way to release the weight of the guilt I carry for being unable to fix their situations. Or maybe this writing is a reminder that I loved my old life, even though it was so hard. And maybe it’s an opportunity to let go of my incessant need to help, and lend an ear instead. Because we all just want to be heard — not fixed.

Making room to sit with my friends in their discomfort is all that I can do. It feels like nothing, but it’s still something. I remember how I felt, and I still feel seen and understood when friends who have gone through (or are currently going through) the same situation show up for me. Perhaps that’s enough.

Approaching our now very different lives with love and compassion is essential. Even after transplant, we are still connected to the CF community for life. We may face different battles, but we are all in this together. Cliché or not, it’s true.

To all my friends that are still on the other side of transplant, my heart is with you always. If I could take that struggle away, I would in a heartbeat. Please know that through every season, I’m here for you.

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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.

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