Kathleen Sheffer,  —

After fighting idiopathic pulmonary arterial hypertension with combined intravenous and oral therapies for 17 years, Kathleen received a heart-lung transplant on July 1, 2016. Now 24, she works as a photographer in San Francisco, California, and writes about the transition from life with PH to life with chronic immunosuppression. See her photography at kathleensheffer.com.

Articles by Kathleen Sheffer

My Mental Health Breaking Point

On Jan. 2, 2014, I stayed in bed for the third day in a row. I cried, slept, researched ways to die, and starved myself. Late that evening, frustrated and hysterical, I disconnected my life-sustaining continuous intravenous medication in front of my exasperated mother,…

Dating with Chronic Illness

My health has always served as an extra filter for my relationships, romantic or otherwise. One man asked me to be his girlfriend on a Friday night and then broke up with me on Sunday, citing his desire for biological children as the sticking point. At…

My Love Affair with Food

Like others in my life, my relationship to food has changed drastically since my heart-lung transplant. Food is so important to me that I once listed it as a main source of happiness in my life (during a rough period in high school). Surprisingly,…

Illness Teaches Gratitude

My friend Rachael got married last month, something neither of us believed she would live to do when we first met at a summer camp for kids with heart disease. At Rachael and Jake’s rehearsal dinner, there was a lot of talk of what…

On the Importance of Being Transparent

Cackling, my classmates point at my face. “You look like a ghost!” one sneers. Confused, with no access to a mirror, I ignore their taunting and turn back to my work. When I feel the nausea creeping through me, I know something is wrong. Instinctively, I…

Bringing Discussions of Illness Into the Open

I bought into the whole, “invisible illness/disability” thing until my condition became visible, but even less recognizable. Outside the clinical environment, few people guess that I am wearing a mask because I recently had a transplant. More common assumptions are that I have allergies,…

Testing … 1, 2, 3

Knowing my capacity for adaptation, I always struggle to answer when doctors ask, “How do you feel today, compared to how you felt a year ago?” My answer tends to be, well, “Pretty much the same,” every time. As irritating and painful as they can…


A Conversation With Rare Disease Advocates