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.During my senior year of high school, a teacher assigned the task of creating a “bucket list.” I was furious. A term popularized by the 2007 movie of the same name, a bucket list is a list of things one wants to do before dying —…
On Sunday, one of my longest friends with pulmonary hypertension received a heart-lung transplant. I met Camille at the first PH Conference I attended in 2000. I was 6 and she was 10, so it was a big deal that she even talked to me, let alone befriended…
My sister and I fell asleep in our flannel nightgowns as my mom drove our minivan the 14 winding miles home. Dad was on a work trip, and we’d spent a full day enjoying the treasures of our adoptive grandmother Verna’s home. Not wanting to disturb…
When asked to help launch the Pulmonary Hypertension News Forums, I was honored, excited … and I felt like a fraud. “I don’t even have PH, anymore!” I reasoned. Surgeons wiped a 16-year-old diagnosis from my record…
I’ve written before about the importance of community while battling chronic illness, especially rare diseases. The advice and support I’ve received from other patients through online groups and in-person PH conferences have been invaluable to my…
Receiving a transplant is more than the gift of life; it’s the gift of a rich life. Living with a transplant is not easy. Though I have fully functioning lungs, they are quite stressful to maintain. My transplant was the single most transformative event in my…
It didn’t get old. I was still very much amused the third time I deposited a stack of postcards emblazoned with an illustration of the heart pulled from my chest seven months prior. Last February, I mailed 75 graphic Valentine’s Day cards to friends…
Days We counted time in days after my surgery. The first few were a blur. “How many days was I asleep?” I wondered. I was lucky. Thursday night, I went into the operating room. Friday night, I got off the ventilator. (Courtesy of Kathleen Sheffer)…
Brad and I met because he commented on my blog, wherefore I visited his blog and read this piece in which he laments not connecting with a deaf classmate before he lost his own hearing.
On early morning drives to Stanford Medical Center, I blast upbeat songs and belt out inaccurate lyrics, my shih tzu giving confused looks from the passenger seat. I’m waking my lungs up in preparation for a 7:30 a.m. pulmonary function test (PFT).
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,…
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…
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