In the wake of a recent hospitalization, my life has quickly become dominated by new medications and treatment regimens. In addition to my physical recovery, which includes a focus on eating, hydration, and movement, I’m now filling the rest of my time with additional therapies, including vest and nebulizer…
Columns
A recent article by Pulmonary Hypertension News reports on a questionnaire-based study in the U.K. indicating that anxiety and depression are likely linked to less self-compassion by pulmonary hypertension (PH) patients and their caregivers. Studies have also shown that depression and anxiety are alarmingly high…
A cold or the flu comes with challenges, especially for pulmonary hypertension (PH) patients. Because we cannot take decongestants, which cause the pulmonary arteries to narrow, we must largely rely on our body’s natural defense mechanisms. But this can be difficult, as we may already be dealing with…
When I was 6 years old, I was entered into a clinical trial for Tracleer (bosentan). At the time, the pulmonary hypertension (PH) community was pushing to have this drug approved for pediatric use, which made me an ideal candidate. Twenty years later, this drug is a…
“Your future is created by what you do today, not tomorrow.” — author Robert T. Kiyosaki Life with pulmonary hypertension (PH) is messy and unpredictable most days. Because there’s no cure yet, we in the PH community must learn to live in the now. Tomorrow isn’t promised…
Some people might describe me as the type of person who regularly says no to something before coming around to a yes. This might apply to support groups, as I usually don’t join them. Don’t get me wrong, I’m glad they exist for people with rare diseases like…
“I have to shower immediately. I’ll get all of these EKG lead stickers off of me and erase the hospital.” That was the first thought that came to my mind after a hypoxic, or low-oxygen, episode sent me to the hospital the other weekend. Showering after a hospitalization…
The world is full of opinions, personalities, and attitudes. On my first day of nursing school, our dean told us to treat others as we’d treat our family or loved ones. How would we want nurses to treat them? This stuck with me, as I’ve tried to deal with others…
It’s officially spring! Flowers bloom, rain falls, and allergies flare as we begin to emerge from our collective hibernation. Before formally springing forward, I took a vacation to Florida where I spent a week visiting different amusement parks, and my comfort level with asking for and using disability accommodations reached…
Second in a series. Read part one. According to the Online Etymology Dictionary, “emergency” is derived from the Latin word “emergere,” which means to come forth, to rise up and out. That is what our brave emergency responders do. They rise up, emerge, and help patients and caregivers…
A rare disease like pulmonary hypertension (PH) is challenging enough to manage. Add other coexisting conditions and it gets even more complicated. I have several coexisting conditions, but my stage 3 chronic kidney disease (CKD) is the most difficult to manage alongside my PH. I must be organized…
First in a series. The rare disease community has an abundance of compliant patients and proficient caregivers. We do our best to avoid serious medical emergencies but are wise enough to know that we must also prepare for them. Important healthcare information and prescription lists are diligently maintained…
