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.Attending the Transplant Games of America in Salt Lake City earlier this month was the best gift I’ve ever given myself. As discussed in previous posts, I have met many other recipients in hospital waiting rooms and support groups. It was a unique chance to…
I don’t know how to begin to explain the experience of being at the Donate Life Transplant Games of America. It’s been all I’d dreamed of, and so, so much more. To say that my emotions have overwhelmed me would not do justice…
One thing that I have looked forward to throughout my transplant journey is the Transplant Games. I was fortunate to learn about the Donate Life Transplant Games of America just days after my surgery. The Games were in Cleveland,…
Last week, I reflected on attending the Pulmonary Hypertension Association 2018 International PH Conference and Scientific Sessions for the first time since my heart-lung transplant. Click here to read that post. Attending PHA’s Conference was an intensely emotional experience for me. I think it’s…
At the end of June, I was honored to photograph the Pulmonary Hypertension Association 2018 International PH Conference and Scientific Sessions in Orlando, Florida. This was the ninth PH Conference I’ve attended, but the first without my idiopathic pulmonary arterial hypertension. On…
A heart-lung transplant cured my pulmonary arterial hypertension (PAH) and changed the way I interact with my environment. It affected the activities I perform in every room in my house. Knowing I can get caught up in my own routine, I often…
Third in a series. Read part one and part two. As I wrote last week, transplant is the only treatment for end-stage pulmonary hypertension (PH). You don’t have end-stage PH? I am so glad. No transplant for you. But if…
Second in a series. Read part one. I’ll be the first to admit that I did not want a transplant. Even when I was dying, I didn’t want a transplant. I was scared. But I was dying, and I was 23 years old.
First in a series. Lung transplantation has an image problem. People often refer to transplant as the “last resort” or a “backup plan,” terms that connote failure. I’m no public relations guru, but I’m pretty well-versed in the success that’s possible with a…
As a freelance photographer, I spend most of my working hours at home alone, editing photographs on my computer. Most of my photo shoots are scheduled in the evenings and on weekends. My friends who are not photographers work 9-to-5 jobs (or 10:30 to 4,…
For the first couple months of my recovery from a heart-lung transplant, I had a one-hour radius from the hospital. A woman I met in a waiting room assured me that eventually, I would be able to travel internationally. “They just load you…
April is National Donate Life Month, a chance to celebrate those who have saved lives through organ donation. Not everyone can be an organ donor — most people won’t be — but everyone can inspire organ donor registration. Rebecca Joy Butler’s legacy…
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