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 100 percent, I have a lot more spoons to work with.
I do not have pulmonary hypertension (PH). I do not know what it’s like to live my day-to-day life with the symptoms that may come with the disease. However, I do have cystic fibrosis (CF) — another crippling respiratory disease that shares some similar symptoms. We…
We all have played “the waiting game” at some point in our lives. Those of us with pulmonary hypertension or other chronic illnesses sometimes feel as though we are just pieces in this game. Our pieces are moved around to different surgeries, tests, and…
When we’re growing up, I imagine many of us are not thinking about the costs of healthcare. For many kids, healthcare means a Band-Aid with disinfectant and a kiss on the knee, and a few trips to the doctor’s office for dreaded shots. A child’s focus never wanders beyond the…
This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it…
As soon as the first words were out of his mouth, I knew the man on the phone was calling to offer me organs. I had imagined this phone call several times a day for the past month. He rushed through the script, stumbling over some parts.
Last week, I had a follow-up with my pulmonary hypertension specialist. I find it hard to mentally prepare for these appointments. In the days and weeks leading up to my appointment, I start to panic, worrying about whether I seem more short of breath or if…
I have experienced what it’s like having a visible illness for two years. For 24 years, it was invisible. I find myself asking, is it more troubling to receive awkward glances, strange remarks, and have people think I am critically ill when I use…
This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it…
This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it via…
Sometimes when I think about the symptoms of pulmonary hypertension — dizziness, shortness of breath, dry cough, and chest pain — I wonder if my diagnosis had just been waiting a decade to hear its name. When I was in my teens and early 20s, I loved the rush of…
Knowing that transplant was my plan when all else failed, I lacked the curiosity to gather information before making a decision. I focused on survival: More information only increased my anxiety. During my training class, I scribbled in a sketchbook and relied…
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