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…
When my son Cullen experienced a fast and critical decline in health after six years of battling pulmonary hypertension (PH), he received a heart and double-lung transplant. Recovery from the surgery was difficult, and the past eight years following transplant have brought various challenges. But Cullen’s dog, Mellow,…
It’s beginning to feel a lot like the day after Christmas. Hopefully, that feeling is joy, but if it isn’t, what’s bothering you? Were symptoms of pulmonary hypertension making you too ill to go anywhere or do anything? Did the holiday not go according to plan? Maybe…
Imagine you’re walking through an open field. It’s quiet except for the faint trickle of a nearby stream and a rumble that sounds like thunder in the distance. The thunder seems to get closer, and soon you realize it’s the sound of galloping hooves. Expecting to see wild horses run…
Slowly, you begin to ascend. At first, you can’t even see the apex of your destination, so already you’re feeling anxious. As the climb steepens, you feel ambivalent, wanting to brave it out but also wondering if it’s too late to get off this ride. At the top, your stomach…
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