I know what I’m about to say will make some of you roll your eyes, but it’s so important. Drink water every day! I’m reminding you because a scary dehydration event recently reminded me. Last Wednesday, my dog woke me at 5:30 in the morning. Standing next to my…
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When I was 8 or 9 years old, the alarm of my IV pump went off in the middle of dance class. When you’re placed on an IV medication for pulmonary hypertension (PH), you are heavily educated on its short half-life and the reality that any pause in medication…
After my bloodwork a few weeks ago, I stopped by a local 7-Eleven to grab an iced coffee. I parked and went in. An older man came in behind me and said, “Do you know you’re parked in handicapped? You’ll get a ticket.” I turned around, oxygen cannula and all,…
My son Cullen is 22, and I’ve been his primary advocate and caregiver for 14 of those years. I’ve seen him through pulmonary hypertension (PH) and heart and double-lung transplant recovery, and I continue to support him as he approaches eight years post-transplant next month. You would think…
“This is humiliating,” I said to the security agent waiting for his colleague to arrive to run a test on my portable oxygen concentrator. The agent asked if I wanted to continue the screening in a private room. Unsure of how many people might be looking in my direction, I…
My son Cullen was 8 when he was diagnosed with severe pulmonary hypertension (PH). His cardiologist in Washington state placed Cullen on Tracleer (bosentan) and Revatio (sildenafil). He also referred us to a PH specialist at Lucile Packard Children’s Hospital at Stanford (LPCH), in California. The PH…
Over the years, I’ve become familiar with it: the discomfort that others feel in the face of the incurable. When sharing my story, the sum of responses consistently averages to something similar: “Will you always need to have a trach?” “When can you get rid…
Last month, I lost a friend within my rare disease community, pulmonary hypertension (PH). PH continuously takes with no regard for anyone or anything. It wasn’t the first time and won’t be the last time I’ve lost, but it hurts. Since my PH diagnosis 17 years ago, I’ve…
Summer is in full swing here in the U.K. Many are jetting off on holiday, and thousands flocked to the recent Glastonbury Festival. I’ve always loved summer, music festivals, heat, and travel. But now that I live with pulmonary hypertension (PH), I have to make certain adjustments.
Before my diagnosis, pulmonary hypertension (PH) was a mystery to me. I’d never met anybody who had the disease. Sometimes finding another person with PH is just as rare as the progressive disease itself. That’s exactly why I went to Atlanta last month to attend the International…
The alarm sounds at an absurd hour on those days of the year when I am always up earliest. No food or coffee. And only enough water to take my morning medications. The commute is usually long and quiet. My mom drives while I rest, my headphones firmly in place…
On this day in 1880, a healthy baby girl named Helen Keller was born. When Helen was 19 months old, a febrile illness with no known cause struck her. Historical biographies speculate she had rubella, scarlet fever, encephalitis, or meningitis. Whatever the illness, it left Helen blind and deaf, and…
