Life After PH – a Column by Kathleen Sheffer

The cover of New York magazine’s Nov. 27-Dec. 10, 2017 issue features a child with cystic fibrosis (CF), whose mother, Jen Gann, is filing a wrongful-birth lawsuit. Her midwife failed to deliver the results of genetic testing that revealed…

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,…

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…

My transplant team told me to avoid any upper body exercises for the first 12 weeks. I waited a full three months and one day, and then I went rock climbing. My arms hurt for days, but I was hooked. Rock climbing is…

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…

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,…

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…

Last year, I wore a black face mask every day during the month of October. People stopped me on the street to guess my costume. I wasn’t posing as Hannibal Lecter, Batman’s Bane, or Darth Vader, though passing strangers delighted in rasping,…

For months, I agonized over how to offer my condolences to people I’d never met for a loss about which I had no details. I imagined different situations. How different it might be for a parent to receive the letter, compared to a child or a…

I was spending time with a friend, another long-term PH survivor, at a cafe last week, when she picked up a phone call. A few responses in, I gathered she was having the same conversation I’d had immediately after going active on the transplant…

The best product of my teenage angst was a series of abstract paintings titled “Attached to a Machine I through IV.” During my junior year of high school, I was particularly upset that my doctors had switched me from a tiny pump that fit into my…

My sweet friend Teresa has stopped asking me if I have enough spoons to hang out with her. With my health stabilizing, appointments fewer and farther between, and my oxygen saturation at a steady 100 percent, I have a lot more spoons to work with.