My son Cullen was 8 when he was diagnosed with pulmonary hypertension (PH). During his pediatric PH years, I had the pleasure of meeting other children just like him. Kids who liked to have fun, learn new things, and express themselves through talents they were just discovering. Young people who…
What is the main thing that patients and caregivers have in common? I believe the answer is stress. Therefore, one of the best gifts you can give them is something to help them relax. Gift cards are a way of doing that. During endless days of clinic appointments or hospital…
Online support groups for rare diseases like pulmonary hypertension (PH) are essential spaces that offer people comfort. Patient forums and social media groups also can be places of support. I am involved with the PH News Forums as a…
Being human makes everyone susceptible to embarrassing moments. Some have learned to deal with them by laughing at themselves. Facepalm-worthy fumbles happen, even when dealing with something as serious as a rare disease. Medical faux pas might sound like no laughing matter, but in my experience, they can offer comic…
Whenever I go through an emotionally difficult or physically painful period in my life, I always take time for reflection. After the crying is done, the tantrum is thrown, and I have cursed, yelled, and convinced myself I can’t keep doing it anymore, I pause and allow myself to breathe.
Christmas has come and gone. Didn’t it seem a bit surreal? For me, and I’m sure for many of you, too, last year was unique in more ways than one could imagine. But we made it through, despite the challenges and disappointments that 2020 brought…
When I look at my Christmas tree, I appreciate its Christian symbolism as much as I do its beauty. There are many meanings passed down throughout history, but I have my favorites. The triangular shape represents the Holy Trinity and the upward-pointing branches are symbolic of my praise…
My sons are 13 months apart and affectionately referred to as “Irish twins.” Cullen is 21, and Aidan just turned 20. My husband and I hoped that having them close in age would foster a close friendship for life. But different personalities and a rare disease placed a gap…
“Success is the sum of small efforts, repeated day in and day out.” My son Cullen could have been the poster child for this famous quote by Robert Collier. The 20th century American author of self-help books believed that “when it comes to finding true success, one needs to…
Not too long ago, I met someone and opened up to them about my pulmonary hypertension diagnosis. They listened and thanked me for sharing my experience. Later that week, they sent me a message saying they had researched my condition and wondered if I…
It’s been a long, difficult year, so let’s make up for it with over-the-top Christmas cheer. We should decorate our homes from floor to ceiling, and ground to rooftop. Bake, cook, watch holiday movies, listen to carols, buy lots of gifts, wrap them up, display them under the tree, open…
I’m no stranger to the “high-risk” label. While living with congenital heart disease and pulmonary hypertension, I hear these words often. In the past few years, the members of my medical team have mentioned my risk while deciding on the best surgical or treatment plan, weighing the pros and…
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