How My Parents Raised Me to Be a Survivor, Not a Victim
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…
Life After PH — Kathleen Sheffer
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.
Featured Post
Cooking Is Great in Life with PH
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.
Read more
My Love Affair with Food
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…
Illness Teaches Gratitude
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…
Rock Climbing and My Second Chance at Childhood
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…
On the Importance of Being Transparent
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…
Bringing Discussions of Illness Into the Open
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…
Testing … 1, 2, 3
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…
It’s Not a Costume: Wearing Masks After Transplant
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…
Offering Written Thanks to My Donor’s Family
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…
The Big Unveil: Gaining Closure After My Transplant
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…
Redefining Self-Image with Pulmonary Hypertension
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…
Life with More Spoons
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…
