Answering the call: What emergency responders do, Part 2
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…
Life as a Caregiver — Colleen Steele
Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At 14, he received a heart and double-lung transplant. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forum moderator for Pulmonary Hypertension News in 2019. In her column, “Life as a Caregiver,” Colleen is open and honest about caring for her son, his PH experiences, and life post-transplant. Her ambition is to educate and inspire others facing similar challenges and encourage them to share their journey. If you are a caregiver and would like to be interviewed, contact Colleen at [email protected].
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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…
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Answering the call: What emergency responders do, Part 1
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…
On Rare Disease Day, let’s raise awareness about caregivers, too
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.
Why you should focus on patient and caregiver self-care today
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…
Put your heart, or other organs, into National Donor Day
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…
A CTEPH patient discusses love, marriage, and lots of romance
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.
My Son Would Like to See Everyone Get Over His PH
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…
Words of Comfort Upon Losing an Emotional Support Dog
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…
What Matters Most Is the Glue That Holds Us All Together
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…
PH and Zebras Have a Lot More in Common Than Their Rarity
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,…
My Son Is Enjoying the Thrill of Freedom This Holiday Season
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…
The Colorful Mosaic of a Thankful Caregiver
Selecting a coloring book wasn’t something I rushed as a child. Testing my parents’ patience, I would carefully page through many books until I found the perfect one with the most appealing pictures. I…
