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When it comes to sleep and energy, which bird are you?

Hospital rounds are usually morning visits from a patient’s healthcare team to review their condition, treatment plan, and progress. The patient is examined, vitals are checked, and additional tests are ordered if needed. Tests can range from blood work or imaging to more invasive procedures such as cardiac catheterization. Depending…

How I use modern technology to manage my health

Following my heart and lung transplant in 2018, I really wanted a smartwatch. Admittedly, the dream was that I’d be using this piece of tech to track ambitious hikes and long walks. Maybe even runs. I had a very athletic vision of myself following recovery, which, of course, ended up…

In loving memory of a good neighbor

Cornered. That is how my son Cullen, 25, and our family felt when he was diagnosed with pulmonary arterial hypertension in 2008. But being cornered isn’t as scary when you look around and see who’s in the corner with you. Compassionate and knowledgeable doctors, nurses, and social workers were…

Can caregiver burnout be eased with a new shade of fingernail?

I’m the almost-pour-milk-onto-my-mom’s-plate-instead-of-in-her-cup kind of tired. The dump-potato-chips-instead-of-cat-food-into-my-cat’s-bowl kind of distracted. The place-things-on-my-parents’-stairlift-instead-of-carrying-them-up-or-down-the-steps kind of exhausted. My name is Colleen Steele, and I have caregiver burnout! It’s not the first time I’ve burned the candle at both ends. I cared for my son Cullen, 25, many times through this level…

Now, more than ever, we must unite for our future

Recent news headlines have sparked significant concern among those of us in the pulmonary hypertension (PH) and other rare disease communities. The massive budget and staff cuts across multiple federal agencies are particularly troubling, prompting a flurry of conversations both online and in private. As we navigate these challenging…

When PH causes me conflicting emotions, acceptance is key

In addition to physical challenges, living with a complex condition like pulmonary hypertension (PH) also means fighting mental and emotional battles. I constantly feel a push and pull between frustration and gratitude. But these are moments that can teach me a lot about myself and the people I love.