By Kathleen Sheffer
Against a fair amount of unfavorable odds, I will be photographing PHA’s 13th International PH Conference and Scientific Sessions. This will be the ninth Conference I’ve attended, and the first I’ll attend without pulmonary arterial hypertension (PAH).
Despite multiple training sessions involved in the extensive evaluation process, I didn’t know what to expect after my heart-lung transplant. My family and I assumed that a transplant would make me feel better than I felt living with end-stage PAH. We couldn’t fathom just how transformative the surgery would be. As soon as I emerged from the operating room (still intubated), my family was delighted to see my lips and fingernails were pink, completely void of the blue tinge they’d grown used to seeing. That was just the beginning of innumerable changes in my life.
Initially, I worried I would lose my connection to the PH community along with my lungs that carried the disease. Instead, my new healthy organs give me energy to participate in events like PHA’s O2 Breathe Walk in San Francisco. I wake up feeling rested after a night’s sleep. In a single day I’m able to complete freelance photography and writing work, perform household chores, and still have energy to spend time with friends. If this all sounds anything less than miraculous, you don’t know life with PH.
I had to put my freelance photography business on hold when my health rapidly declined. Now I’ve returned to photography with more stamina and muscle to carry heavy equipment. My immune system is compromised to prevent organ rejection so I’ve developed strategies to avoid illness in high-risk environments. My camera bag holds antibacterial wipes, protein bars, antifungal solution, and pill cases, along with my camera bodies, lenses and speedlights.
I would be thrilled if you would check out my portfolio to see my professional work. Even better, follow me on Instagram! You can read more about my process and fine art photography on the Disability Arts: Bay Area blog, where I’m a featured disabled artist. For the sake of sharing some of my photos that don’t require model releases, I thought I’d write about my recent trip to Europe.
In March and April, my sister and I visited the Cliffs of Moher, the German Alps and narrow passageways in Prague. We checked items off the bucket list I never dared to make.
My sister, Monica, and I are very close. Born 23 months apart, we never lived more than an hour away from each other – until last year, when she moved to Greifswald, Germany, to pursue her Ph.D. in zoology. Our family is still adjusting to the distance, but we are fortunate to be able to visit her occasionally. I was so excited to see her new home for myself.
We traveled through Europe together three years ago when I had end-stage PH. On maximum doses of intravenous treprostinil and oral sildenafil, I carted a portable oxygen concentrator and relied on Monica to carry all our bags. Jet-lag took an enormous toll on me and I caught a cold. I spent full days of the trip sleeping.
Our trip this spring was markedly different, thanks to my organ donor. Through 10 cities in five countries I carried my suitcase, backpack, and two cameras. The trip challenged me to adjust to different languages, time zones, currencies and transportation systems. My independence and confidence in my own strength and adaptability soared.
Fortunately, I didn’t get sick and my pulmonary function remained stable. My labs looked good the week I returned, so I didn’t need to adjust any medications. I am looking forward to more travel, starting with my trip to Orlando for Conference!