I Love My Post-Transplant Life

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.

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