Living with pulmonary hypertension (PH) involves much more than managing symptoms, taking medications, and attending medical appointments. There is also an emotional side to chronic illness that can be difficult to explain, even to the people closest to us. I know how much energy it takes to manage a…
Columns
If you’re in the United States, you probably know there’s an election happening on Nov. 3. Local, state, and federal candidates are all vying for elected office with big ideas on why they should serve and represent their constituents next term. You might even be annoyed by all the candidate…
I used to have a favorite pen. Now I have a favorite pulse oximeter. Things that once would have seemed intimidating, complicated, or downright bizarre have become part of everyday life. Living with pulmonary hypertension (PH) means noticing details most people can afford to ignore. I pay attention…
After quite a bit of bittersweet contemplation, I’ve made the difficult decision to retire my column, “Blooming Hope.” Over the past five years, I’ve submitted 110 pieces reflecting on life with pulmonary hypertension (PH) and the aftermath of being a heart and lung transplant recipient. I will…
“When the world is so complicated, the simple gift of friendship is within all of our hands.” — Maria Shriver If you or someone you love manages a rare disease like pulmonary hypertension (PH), you already know how deeply it touches every part of life. From everyday tasks to…
When it comes to scheduling appointments, I say the earlier the better. I love first-thing-in-the-morning physical therapy sessions. The commute is quieter, as my neighborhood and city are still waking up, and the late-summer heat hasn’t yet turned the concrete into hot stones. There’s a sense of accomplishment in finishing…
Pulmonary hypertension (PH) is a complicated disease, which makes it especially fascinating how many of its problems can apparently be solved by someone who learned about it 45 seconds ago. Those of us living with PH spend an extraordinary amount of time managing our own bodies. We…
Through every up and down of my 19 years living with pulmonary hypertension (PH), one thing I could always rely on was my mom’s little black notebook. Without fail, she would pull it out of her bag at the beginning of every doctor appointment, pen in hand. The notebook…
Pulmonary hypertension (PH) has changed what I consider an accomplishment — and maybe that isn’t such a bad thing. Living with PH has taught me that progress does not have to be dramatic to be worth celebrating. Walking a little farther, recovering a little faster, adjusting to a…
After a difficult winter and spring dealing with several health setbacks, I’m slowly dipping my toes back into my day-to-day interests. This includes things like knitting, cooking, and reading, but mostly, it means digging back into my art practice. As I ride this recent wave of creative rejuvenation,…
When did you last speak to somebody on the phone? I don’t mean communication via email, text messages, Slack, Signal, Instagram, or other digital platforms. People today tend to opt for the more casual text- or chat-based connections. I imagine, though, that if you have pulmonary hypertension (PH) or…
When I was diagnosed with pulmonary hypertension (PH) more than 20 years ago, so much of the conversation was about what might be taken away from me: my health, my independence, my plans for the future, and most likely, even my time. What no one could tell me then…
