As Grief Lingers Following Lung Transplant, I’m Learning to Be Present
Complex emotions from a life with cystic fibrosis don't entirely fade after transplant
Grief doesn’t respect timing or social etiquette. It typically hits me at the worst times, when it’s inconvenient to have sweat trickling from my eyes.
As I reflect on the complex changes that happened during my serious sick days before my double-lung transplant, and now five years later, I acknowledge that my life has been different than most. It’s taken time to dig deep and figure out that grief is at the root of many of the heavy emotions I still experience.
I spent so many years being sick. It was all I knew. My cystic fibrosis was aggressive, so I was constantly congested. I had to protect my health at the cost of being unable to do most of the things my peers could do. While others were thinking about their futures, I was wondering if I’d live to see 30.
For several years, my sole focus was my health. I didn’t have the privilege of thinking about where I wanted to move, what my dream job would be, or whether I’d get married and have children like most my age. I had to concentrate on simply surviving. My thoughts were constantly focused on making sure my breathing was in check, my symptoms were being managed, and potential risks were being assessed.
Adjusting to a radical shift
In some ways, I feel like I’m playing catch-up for lost time. Post-transplant, I’ve been able to travel without worrying if I’ll get sick and have to be hospitalized. I can now pack lightly for trips without worrying about oxygen tanks and other breathing equipment. I don’t need electricity for my medical equipment, so I can go camping with little inhibition. And I’ve been able to be present for loves ones in a new, profound way.
In other ways, it’s as if I’m learning skills that I didn’t get to develop before my transplant. I’m learning how to make plans without the fear of needing to cancel because I’m sick. Dreaming about the future and long-term goals happens more naturally now, and with less anxiety. I’m learning what stable health feels like with my new lungs, which is a huge adjustment.
With this radical shift post-transplant, I’m noticing additional layers of grief coming to the surface. It’s insightful to recognize that I’ve been holding onto sadness from the time I spent being sick, from a life that didn’t go according to plans, and from a journey that was very different before transplant. It highlights the next layer of healing that is needed.
Processing these complicated emotional matters takes time. I’ve learned that grieving these parts of my story need acknowledgment and space to work through.
As we approach National Grief Awareness Day on Aug. 30, it’s a good reminder that grief is complex. It doesn’t ever dissipate completely, but there are ways to alleviate the weight and walk alongside it with grace.
Grieving doesn’t mean I wish I had a different life. This type of grief means that each season has brought radical changes. With any transition, there’s a level of grief, regardless of whether those changes are good or bad. Since my life has been filled with several atypical life changes, my grieving process looks different than most. Now that I’m healthier, I have a greater capacity to do the internal work to process these emotions, which I’ve been carrying for so long.
Grace comes because I feel abundantly blessed for the life I’ve been granted, with all of its opportunities, connections, and miracles. I wouldn’t be who I am without these unique life experiences.
I choose to celebrate the life I’ve been granted (twice). It’s worth all the pain, suffering, and grief that comes along with it. My life has given me perspective on the preciousness of each day, and I’ve formed stronger connections and feel every emotion deeply. And because of this, I wouldn’t change a thing.
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.
About the Author
Gisele F Lapointe
So happy for you. Five years, that's a miracle. Enjoy every minute.
I wish my daughter had had that opportunity. She had to content herself with a 2-lobe transplant generously
given by her brother and husband. She survived two years before passing away at age 43, leaving three young children.
Still I am thankful for the time she graced this earth.