Life After PH – a Column by Kathleen Sheffer

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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 Bucket List I Refuse to Make

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 —…

I Am a PH Patient Without PH

  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…

Three Ways Transplant Enriches My Life

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…

Marking Time After Transplant

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)…

Prepared for the Worst

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).

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…


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