PH parents are busy people. Making time for each other isn’t easy, and neither is trusting someone to care for their medically frail child when they do. My husband, Brian, and I have been married for 27 years, and we raised two sons, Aidan, 21, and Cullen, 22. Cullen was…
For all of you Ms. and Mr. Hospital Corners out there, I see you! No, I don’t see or care how you made your bed today, but I do care about how you’re holding up as caregivers. Due to rapid decline from pulmonary hypertension (PH), my son Cullen…
I know what I’m about to say will make some of you roll your eyes, but it’s so important. Drink water every day! I’m reminding you because a scary dehydration event recently reminded me. Last Wednesday, my dog woke me at 5:30 in the morning. Standing next to my…
My son Cullen is 22, and I’ve been his primary advocate and caregiver for 14 of those years. I’ve seen him through pulmonary hypertension (PH) and heart and double-lung transplant recovery, and I continue to support him as he approaches eight years post-transplant next month. You would think…
My son Cullen was 8 when he was diagnosed with severe pulmonary hypertension (PH). His cardiologist in Washington state placed Cullen on Tracleer (bosentan) and Revatio (sildenafil). He also referred us to a PH specialist at Lucile Packard Children’s Hospital at Stanford (LPCH), in California. The PH…
On this day in 1880, a healthy baby girl named Helen Keller was born. When Helen was 19 months old, a febrile illness with no known cause struck her. Historical biographies speculate she had rubella, scarlet fever, encephalitis, or meningitis. Whatever the illness, it left Helen blind and deaf, and…
Experience has taught my husband, Brian, and me that life is what you make it, but you don’t always get to choose the ingredients. We have put a lot of love and other wonderful things into raising our sons Cullen, 22, and Aidan, 21. Pulmonary hypertension (PH) wasn’t…
As a co-moderator for the Pulmonary Hypertension News Forums, I’ve encouraged and taken part in many hot topics over the past three years. During that time, I’ve noticed one topic resurfaces often, and it always triggers great responses. Mental health and wellness spur a conversation that pulmonary…
A friend recently emailed me an old list of winners of “The Washington Post Mensa Invitational” that has been circulating the web. According to the rules, participants must take any word from the dictionary, alter it by adding, subtracting, or changing one letter, and then supply a new definition.
What is baggage? According to Merriam-Webster, it’s one of three things: suitcases, transportable equipment, or intangible things such as feelings and circumstances that get in the way. What kind of baggage do people living with pulmonary hypertension (PH) often take everywhere they go? The answer: all of it! In…
They say pictures are worth a thousand words, but sometimes they can be a one-sided conversation. Some photographers tell better stories, but it’s usually up to the observer to gather hints from the picture to understand what’s going on. Smiling people must be happy. Crying people must be sad.
I’m an avid reader who, at 50, still considers “The Little Engine That Could” to be one of my favorite books. This timeless, inspirational story and its catchphrase, “I think I can,” date back to a Swedish version in 1902. As an adult, I had the pleasure of reading…
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