“I wish I could help you. I know how tough pulmonary hypertension is and what you’re going through — there just isn’t enough supply of the antibodies treatment.” That was the gist of what a doctor told me while I was isolating in a California hotel room in January. I…
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Most people realize that living with a serious health condition can make it difficult to develop romantic relationships. The difficulty of forming new friendships doesn’t seem to be talked about as often. Making friends as an adult is hard enough without the added complication of a chronic illness…
The emotions of an 11-year-old girl named Riley take on a life of their own in the 2015 Pixar movie “Inside Out.” In the animated film, the control center of Riley’s brain is headquarters for five emotions portrayed as the characters Joy, Fear, Anger, Disgust, and Sadness. They control…
While I cringe a bit at the term, I would definitely consider myself a foodie. Food Network often plays in the background while I work. I was gifted a pasta-maker for Christmas, which I now use weekly, and I’m currently experimenting with sourdough bread recipes. I’ve loved food and everything…
“The courage it takes to share your story might be the very thing someone else needs to open their heart to hope.” — Unknown My hands were clammy and my heart was racing as I waited to meet a prospective new primary care provider (PCP). I sat in the…
A woman driving home from work becomes severely short of breath and dizzy. She pulls over into a “No Parking” area, which draws the attention of a parking enforcement officer. He calls for help, and she is rushed to the hospital. Five days and many tests later, doctors diagnose the…
When I checked into urgent care in 2016, I was supposed to be preparing a member of Congress for a summit at the White House. But instead of going to work the next day, I sat in the hospital for nearly two weeks and left with a pulmonary hypertension diagnosis.
Pulmonary hypertension (PH) might look and sound like asthma, croup, chronic obstructive pulmonary disease, or a panic attack — but it’s not. It’s a rare, incurable, and life-threatening condition. The color of the PH awareness ribbon might look purple, lavender, violet, or blue — but it’s not. It’s a delicate…
The day you get called in for a transplant is a strange one, filled with all sorts of extreme experiences. Something most people might not know is that, in an attempt to execute the transplant procedure efficiently, patients are taken to the operating room before the donor organs even arrive…
The words I wasn’t prepared to hear went something like this: “Mrs. Cueva, it seems that you have a rare and life-threatening illness.” My mind immediately flashed back to months earlier, when a local doctor had told me that if I had pulmonary hypertension (PH), it would be “a death…
I enjoy hot peppermint mochas year-round. Going through the Starbucks drive-thru is my favorite daily routine and the only line I don’t mind waiting in. I use it as an opportunity to relax, pray, listen to music, scroll through my phone, read, or gaze out the window. The…
The pandemic has been especially hard on people with disabilities, chronic illness, and rare diseases. Our community has faced ongoing ableist attitudes toward safety measures and protocols meant to keep disabled, immunocompromised, and other high-risk individuals protected from a pandemic with a death toll in the United States…
