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.
As soon as the first words were out of his mouth, I knew the man on the phone was calling to offer me organs. I had imagined this phone call several times a day for the past month. He rushed through the script, stumbling over some parts.
Knowing that transplant was my plan when all else failed, I lacked the curiosity to gather information before making a decision. I focused on survival: More information only increased my anxiety. During my training class, I scribbled in a sketchbook and relied…
The hard part I’ve heard that waiting for the transplant is the hardest part. Every day after my transplant, I heard, “This is the hardest part,” leaving me a firm believer in relativism and forever poised for future “hardest parts.” When I went on the heart-lung transplant list,…
When my alarm goes off at 9 a.m. in the clinic and I pull out my bright green pill organizer, others around me start to do the same. “I’m glad she did that because it reminded me,” I hear one woman say as I leave the…
“What’s with the nail file?” my sister asked, her eyes failing to conceal her amusement. Still grinding my nails down, and with two backup emery boards in my purse, I explained my new habit, one of many recent changes she bore witness to. Nail files My nurses gave me a…
The changes were gradual enough not to alarm me. I went from a steady 110 to 118 pounds in less than a year, but always celebrated weight gain. The blue coloring in my lips and fingernails was more pronounced, but I figured I was just paying more attention. Determined…
When I tell someone I had a heart-lung transplant, I’m usually greeted with “congratulations,” unless they are particularly clueless and say, “Get well soon.” When I was dealing with intense postoperative pain and brain fog, it upset me to be congratulated on my “new life.” With multiple blood draws, tests,…
Get regular updates to your inbox.