I won’t lie. The first two months after my double-lung transplant were rough. I wasn’t in much pain, but my body was struggling to adjust to the cornucopia of transplant drugs, and I experienced the torment of withdrawal from the powerful painkillers I was on. After those two months, though, I really lived.
The old adage is, “Ya can’t miss what ya never had.” I breathed fine in my childhood, but until after my transplant, I couldn’t vividly remember what that felt like. I do remember being the fastest runner in my third-grade class — I loved a good game of tag. By middle school, I was last in the pack of a gym class runs. Now that I’ve breathed and felt air explore caverns deep in the bottom of my “new lungs” — areas caved-in by repeat infections and cement-like mucus in my “old lungs”— I never want to go back to that life.
One of the concerns regarding lung transplantation is that it’s a life of “restriction”: no sushi, rare alcohol, no grapefruit or pomegranate, wear a mask, be careful around children, etc. Well, I’ve avoided dreaming of the future because I expected to die early. I’ve avoided air travel because my lungs couldn’t handle high altitudes, and carrying feeding tube and IV supplies was a major hassle. I’ve avoided theaters and libraries because my cough annoyed others. I’ve kept my CF secret because I didn’t want friends to google it and discover it’s a disease of thick mucus and stinky crap. CF is restrictive. I very gladly gave up rare steak and runny eggs to rid myself of CF. For the first time in memory, I feel free.
This past August, 226 days after transplantation, I took a road trip through the Southwest United States. I ventured deep into the canyons of Arizona in scorching heat and beheld the ethereal Antelope Canyon. I stayed for a week in Glorieta, New Mexico, at 7,431 feet above sea level — my companions all had altitude sickness while my perfect, pink lungs proudly and easily maintained steady oxygen levels. I hiked a couple hundred stairs to 14,000-foot altitude in the Colorado Rocky Mountains and was bombarded by hail and intense wind. There, above the tree line, I breathed deeply. I breathed where not even the most ancient of trees could, when just seven months ago I could barely breathe at sea level while leashed to an oxygen tank.
I told my transplant social worker during the evaluation that one of my post-transplant goals was to run — run as fast as I did in third grade. I gave that a go and found that hurt my steroid-thinned shins too much to continue. And that’s fine with me. Because I have a million and one other goals to reach for now that I have my second chance at life.
When I nearly died, I found gratitude for the simple things in life and shifted my priority list. I once viewed success as doing something so legendary that I would be remembered in history books and newspapers even after I’ve passed. I was so afraid of being forgotten once I died. I now view success as having a loving heart and helping others. It’s what brings me the most joy. And that is why I write to you. So many helped me in my journey to and from transplant, and I fully recognize I wouldn’t be here without that.
Transplantation isn’t always as smooth as mine has been. Even if it is smooth, many still don’t find it as great as I do. Major painful and life-threatening complications can occur. But I think if a person is at a crossroads of either dying or having a chance at living what I have lived, it’s worth the shot. For me, my care is maybe a quarter of the typical CF burden. Clinic appointments are increasingly rare, I haven’t had any hospitalizations, I don’t need nebulized medications or physiotherapy, and I no longer need my feeding tube.
My friend jokes that I drink happy juice. Maybe she’s right. My happy juice is the awe I feel every time I find myself captivated by the world’s beauty. It’s the realization I can’t remember the last time I coughed. It’s the euphoria I feel when I climb to the peak of a mountain and recover my breath in seconds. It’s the laugh I had this morning when I realized I was stressed about choosing which coffee shop to write this column in, rather than stressing about medical problems for once. It’s the smile on my face when I dream of the future with a fraction of the fear felt when I had CF. It’s the satisfaction of knowing my extreme gamble with accepting a lung transplant has paid off in ways I hadn’t even imagined.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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