In 2008, I was in my final weeks of graduate school at the University of Michigan when my right lung collapsed for the second time in three years. Within an hour of being admitted to the hospital, they did a CT scan of my chest, and I first heard the word “lymphangioleiomyomatosis.”
When I was released from the hospital a week later, I had a scary prognosis and the name of a pulmonologist, Dr. MeiLan Han, who saw other LAM patients. I tried to bury myself in schoolwork, but kept circling back to the limited information I could find online about LAM. When I finally scheduled (and kept) my first appointment with Dr. Han, I had two big questions: how soon could I travel for job interviews out-of-state, and could I ever get pregnant?
Within 18 months, I was settled into my first post-graduate job as an academic librarian in North Carolina, and I was pregnant with my first (and only) child. This April was the tenth anniversary of my diagnosis, and some things I have learned in the past decade about balancing LAM, parenthood, and work are:
- Seek regular care from a pulmonologist who understands LAM, ideally at a LAM clinic where care can be coordinated with other medical professionals. I was fortunate to begin my LAM journey with Dr. Han at the Ann Arbor clinic, and now see Dr. Srihari Veeraraghavan with the Emory Clinic in Atlanta. I have regular check-ins with Dr. V and pulmonary function tests (PFTs) every six months, and see a urologist annually to check my kidney angiomyolipomas (AMLs).
- Make time for exercise. Walking and swimming were my preferred activities before my diagnosis, and I’ve tried to keep doing both, while listening to my body to decide how long and how far I can go. It might be a brisk lunchtime walk at work, a stroll to dinner in our neighborhood, or a strenuous weekend hike up a mountain (with a LOT of rest breaks). Whenever I can combine physical activity with time spent with loved ones, especially my kid, it brings me extra joy.
- Be honest with family, friends, and colleagues about your limitations. In my personal life, I talk with my family and close friends about the limits LAM can place on me, such as being outside on poor air quality days. In my professional life, I discussed reasonable amounts of work travel with my supervisor. I plan on one annual conference that requires air travel, and look for local and regional professional development opportunities that I can take transit or drive to instead of several plane trips.
There are many days when I feel overwhelmed by the delicate juggling act required to manage my work, my family, and my lung disease. But I believe living with LAM has made me better at accepting my own vulnerability, asking others for help, and tapping that inner core of resiliency that can make any of us stronger than we ever knew.
Jennifer was born in 1976 in upstate New York, grew up in Southern California, and has lived in Arizona, Texas, Michigan, North Carolina, Georgia, and the United Kingdom. She had her first pneumothorax (lung collapse) in 2005 while living in Liverpool, and was diagnosed with LAM in 2008. She’s been married to her husband, Chris, since 1998, and they have one daughter, Ryan, born in 2009. They’ve lived in Atlanta since 2011, where Jennifer works as a librarian at Emory University.