One of the hardest things for me to talk about is the loneliness of chronic illness. The topic can quickly become uncomfortable for me and the person I’m speaking with. Still, it’s been a near constant in my life with pulmonary hypertension (PH), and ignoring it often only amplifies…
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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…
Leading up to my heart and lung transplant in 2018, a friend asked if there were any specific activities I was looking forward to doing post-transplant. The hope was that my health would improve following the procedure. One of my very confident answers was that I was excited to…
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…
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…
We can be tempted to push ourselves when we’re feeling OK and having a not-so-bad day with pulmonary hypertension (PH). Plans with family, weekends packed with activities, or even the excitement of feeling better than usual can make us want to do it all. But those of us with…
As a born and bred Minnesotan, the thrill of the winter season lives in my blood. We’re a four-season state, but the reality is that the northern Midwest freezes over into a landscape of immovable ice and snow for six months of the year. My childhood memories are stacked with…
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…
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…
I think it is more effective to watch for good advice instead of asking for it. An Inc. article titled “25 Excellent Pieces of Advice That Most People Ignore” covers words of wisdom that often go in one ear and out the other. “It’s easy to find someone to…
During my senior year of high school, mornings were always stressful. I attended a massive school of about 3,000 students. My driving partner and I lived on the edge of our district, so arriving on time was a constant struggle. In an attempt to be in class by 8 a.m.,…
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.
