When patients arrive at a medical facility, they often expect to be greeted with a helpful smile and comforting voice, not met by an inanimate object that could add to the complications illness can perpetuate. According to the Kiosk Information Systems website, “the demand for patient self-check-in and virtual…
Life as a Caregiver - a Column by Colleen Steele
Music is a universal gift given and received by people of all ages, ethnicities, and cultures. Its versatile melodies, rhythms, harmonies, lyrics, and instruments adapt to any person, place, situation, mood, and event. Music is the keeper of memories, the creator of dreams, and the healer of mind, body, and…
My 25-year-old son Cullen has been trying to deal with trying situations since he was a child. For years he explained to both his parents and medical professionals that something more than asthma or anxiety was making it difficult for him to physically keep up with his friends. A correct…
It’s been a while. Do you remember me? I fell silent in June 2023 after sharing a column titled “How I am coping since my husband passed away.” I’m an only child to aging parents, Mom, 86, and Dad, 94. When my husband, Brian Steele, died, I moved to…
I thought I knew how I grieve. I’ve lost many loved ones over the years, including those in the pulmonary hypertension (PH) and transplant communities. Each death hit my heart with varying degrees of force, but the grieving process was always familiar. I found comfort in being…
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…
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…
If you can do the following things simultaneously then you are rare! Speak up and listen. Learn while you teach. Trust but also question. Be empathetic and persuasive, serious and lighthearted, gentle and strong. Also be organized and spontaneous. Take care of yourself and put others first. Give in but…
Physical, emotional, and mental exhaustion are common symptoms of pulmonary hypertension (PH) and caregiver burnout. Many of us will keep packing on the fatigue until that snowball gets harder and harder to push. All too often, we’ll stop only when the weight of it rolls back and crushes…
Most people are good. I truly believe we’re better than what we ingest daily from the local, national, or world news. But what often keeps us from proving it is a lack of inspiration and information. Allow me to offer you a bit of both. Today is Valentine’s Day, also…
True love isn’t just found in fairy tales. Terese Tuohey met her Prince Charming, Timothy (Tim) Tuohey, at a dance. They fell in love, married, and will celebrate their 15th wedding anniversary in October. In an email interview, I asked if they view their marriage as rare. They agreed they…
As babies, our first steps were probably acknowledged with exaggerated praise. Since then, however, not every step forward has been applauded. Wouldn’t it feel awkward if they were? My son Cullen received a heart and double-lung transplant in 2014 after pulmonary hypertension (PH) caused a critical decline in…
