The power of community support during the transplant journey
Peer support groups became an unexpected lifeline for me
Living with cystic fibrosis (CF) means navigating a complex medical journey that can feel isolating, even when the clinical care is excellent. When I faced the life-altering decision to pursue a double-lung transplant, I discovered the power of community support. Through both national resources and local connections, support groups became like a lighthouse guiding me through one of the most challenging times of my life.
Enlisting for a double-lung transplant means acknowledging that your disease has progressed beyond what medications and other treatments can manage, while simultaneously hoping for a future with better breathing. It’s a challenging and scary process, and time is generally not on your side.
Community makes all the difference
When I reached this crossroads, the CF Foundation‘s virtual transplant conference became an unexpected lifeline. The meeting connected me with others who had walked this path before and who understood the fear, uncertainty, and hope that come with considering a transplant.
Hearing firsthand accounts from CF patients who had successfully navigated the process helped me separate fact from fear. They shared practical insights about what to expect, how to prepare mentally and physically, and what life could look like on the other side. Their honesty about both the challenges and the rewards provided me with the clarity I needed to move forward with greater confidence.
Once I made my decision, I joined my hospital’s lung transplant support group on Facebook. This group became a daily resource as I waited for the call about new lungs, prepared for surgery, and navigated the center-specific guidelines and processes that would shape my journey.
Most group members didn’t have CF and were decades older than me. Yet we were all fighting for breath, hoping for new lungs, and learning to live with the reality of transplant, both mentally and physically. This group also included people committed to serving as our caregivers. Members shared their personal journeys and posted emergency numbers and helpful tips.
Five years after my transplant, I’m still an active member of this support group. If anything, it has become more valuable over time. Post-transplant life brings its own set of complications, including medication side effects, rejection episodes, lifestyle adjustments, and the emotional work of integrating this profound change into your identity. Having a community that understands makes all the difference when questions and concerns arise.
CF Lung Transplantees is another Facebook group available to join. Although this group is international and may not necessarily reflect your own care center’s guidelines, it is CF-specific, which addresses many situations that other transplant groups may not experience. Additionally, witnessing others with CF celebrate a “lungaversary” — whether it’s their first or their 10th — can give you hope for your own future.
No matter how skilled and compassionate our clinical teams are, they can’t match what support groups offer: peer experience. When someone who has lived through transplant rejection tells you what to watch for or shares how they managed a particular medication side effect, or when someone celebrates climbing stairs without stopping, these moments carry a different weight than medical advice alone.
If you are facing a transplant decision or navigating post-transplant life, I cannot overstate the value of connecting with others on this journey. Whether it’s through CF Foundation programs like BreatheCon and CF Peer Connect, your transplant center’s support groups, or online communities, these connections can transform isolation into shared strength.
Please know that you and your caregiver don’t have to face this alone. The CF community is waiting to welcome you, share with you, and help carry you through the difficult days. Five years after my transplant, I’m grateful every day for all the support I have received.
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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