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 in her late 20s, 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.
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.
Get regular updates to your inbox.