PH parents are busy people. Making time for each other isn’t easy, and neither is trusting someone to care for their medically frail child when they do. My husband, Brian, and I have been married for 27 years, and we raised two sons, Aidan, 21, and Cullen, 22. Cullen was…
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It happens often — probably more than I’d like to admit. In a moment of daydreaming, I’ll picture myself doing something both ordinary and unimaginable. On a crisp morning, perhaps, I awake and throw a sweater over my pajamas. I meander downstairs, stopping in the kitchen only long enough to…
Last month I struggled with my mental health more than usual. My anxiety was out of control. I recognized that I needed more help and went to see a psychiatrist my primary care physician had suggested a few times. She ordered a few medications at a low dose. But…
For all of you Ms. and Mr. Hospital Corners out there, I see you! No, I don’t see or care how you made your bed today, but I do care about how you’re holding up as caregivers. Due to rapid decline from pulmonary hypertension (PH), my son Cullen…
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…
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…
