The siblings of medically frail children grow up fast because they witness harsh realities at an early age. They experience emergencies, hospital stays, medical equipment, and scary treatments, and have no choice but to comply with a long list of limitations, sacrifices, and challenges. Pulmonary hypertension (PH) turned the…
Living with chronic illness has made me more aware of the complexity of emotions that go along with health management. There are parts of me that I am not afraid to show and parts that I keep hidden. The side that most people know is optimistic and…
“Good morning, Mrs. Cueva,” said the young lady on the phone. During our call, she informed me of a change in my medication coverage that would take effect in the following weeks. “Your copay will now be $830 per month instead of the usual $200,” she said. I’m not sure…
When my son was diagnosed with pulmonary hypertension (PH), I noticed a change in how people interacted with me. They hesitated before sharing personal problems, and if they did share, they would often apologize: “I shouldn’t complain because it’s nothing like what you are going through.” What I sincerely…
Since my previous column was heart-wrenching and vulnerable, I decided to make this one fun. At the end of April, my husband smashed his first MS 150 ride. He started in Houston, Texas, and crossed the finish line in Austin. Though I do not have multiple sclerosis,…
Two positives came out of my son’s pulmonary hypertension (PH) diagnosis: It strengthened my belief in the power of prayer and rekindled my faith in people. My family has personally witnessed the kindness and generosity of both family and friends and complete strangers. People wanted to know how they could…
Survivor’s guilt is something that I’ve struggled with over the past 14 years. Living with the rare and life-threatening disease that is PH, I continuously lose people I care for. Lately, it seems that every time I look at my social media, at least two or three PH patients have…
Clinician notes from my recent doctor’s visits have included comments such as “patient was tearful,” and “patient was in distress.” My initial reaction to reading these remarks was, “Oh, no. They are going to think I’m crazy and will blame my symptoms on anxiety or…
Christie and I were walking through the Haight-Ashbury neighborhood in San Francisco when I heard someone call my name. Dhaya Lakshminarayanan waved me over. I first met Dhaya at a Moth StorySLAM where I told the story of getting the call…
Almost 10 years ago, my husband and I were sitting in a pediatric cardiologist’s office with our son awaiting the results of an echocardiogram. The doctor described in simple terms a disease called pulmonary hypertension (PH). We had never heard of it but were relieved to be…
Chronic illness often leaves me feeling frustrated with my physical and mental health. When I am feeling overwhelmed by my body’s symptoms or experiencing emotional distress, I am not the best person to be around. When my internal organs seem out of my control,…
Summer is here, and perhaps a road trip is in your plans for the season. I’ve always looked forward to this time of year. However, living with pulmonary hypertension (PH), summer can take a toll on my body. Dealing with the unpredictable ”variety pack” of PH symptoms, it…
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