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.A therapist once asked me what makes me happy, and I said “food” right away. Thankfully, I’ve matured since high school, and food is no longer at the top of my mental list of reasons to live. Now coffee ranks above it. I’m joking!…
Christie and I were walking through the Haight-Ashbury neighborhood in San Francisco when I heard someone call my name. Dhaya Lakshminarayanan waved me over. I first met Dhaya at a Moth StorySLAM where I told the story of getting the call…
My anxiety skyrocketed last month without any medical triggers. I celebrate my 26th birthday this weekend, and my third transplant anniversary is a couple of months away. I’m doing great physically, but I don’t feel like…
President’s Day weekend was supposed to be monumental. I intended to write a feel-good column about coming full circle. It was my first time skiing post-transplant in the mountains around Lake Tahoe. Nineteen years ago, my family planned to go to our good friends’…
The night before my heart-lung transplant, I was in my high school art studio working on an oil painting. I had started painting to pass the time while waiting for the call, and I returned to the comfort of Mr. Miller’s…
I am particularly sensitive to feeling left out of activities with friends. This started when I was a young, sick kid. I walked at the very end of the group while a day camp counselor scolded me for not keeping pace. After my pulmonary hypertension (PH)…
2018 was triumphant. I accomplished several of my long-term goals. I had zero organ rejection, so I remained on my lowest dose of prednisone all year, and that meant less brain fog, more stable moods, and fewer panic attacks. Though I frequently worried about my…
Last week I went in for a cardiac ultrasound (I call this exam an echo). I’ve probably had hundreds of them in my life, but since my heart-lung transplant, echoes are more emotional than ever. It’s not because I’m afraid of the results.
For 16 years I slept with supplemental oxygen delivered through a nasal cannula. Prone to desaturation at night, I blasted two liters of concentrated oxygen through my nose every minute in an attempt to keep my bloodstream’s amount of oxygen at a safe level. When…
Lately, I’ve been so busy with my freelance photography business that I haven’t had time to put thought into a new column. I suppose that means it’s time to write about what I do outside of publishing this column and moderating the Pulmonary Hypertension…
Claire Wineland’s death on Sept. 2 set the tone for the month. Great losses in my communities clouded September. Claire suffered a stroke after a double-lung transplant. She was a brilliant young woman with a gift for public speaking, and she had cystic fibrosis. Her story was highly…
I love the desert. No, this is not a timely column post about Burning Man. Sorry to disappoint. I’ve really only been to the desert twice. The general inconvenience of traveling with pulmonary hypertension (PH) limited me before, and my doctor advised me to avoid high…
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