When we face setbacks from illness, it’s easy to feel like the world is crumbling around us, as if we’ve failed and there’s no point trying anymore. But here’s the thing: We can’t let those thoughts consume us. It’s easier said than done, right? Trust me, I’ve been through…
“To the well-organized mind, death is but the next great adventure.”― J.K. Rowling, in “Harry Potter and the Sorcerer’s Stone“ Working as a hospice nurse before my diagnosis of pulmonary hypertension (PH), I was at the bedside of many people in their final days and hours. It…
Are you looking for the perfect present for a loved one managing a rare or chronic condition? As someone with pulmonary hypertension (PH), I often find myself contemplating what’s on my Christmas wish list. And you know what instantly comes to mind? Comfy pajamas that make me feel at…
I recently joined a rare disease advocacy meeting on Zoom, where the subject of the rising cost of living and the difficulty of affording groceries and prescriptions and medical care sparked a lively discussion. During the call, eight people said they rely on food assistance from their state or county,…
Have you ever considered the surprising similarities between managing pulmonary hypertension (PH) and hosting Thanksgiving dinner? Like hosts who plan and prepare an elaborate holiday feast for their guests, PH patients must plan and coordinate the many aspects of their care. Both require a constant juggling act. Preparing Thanksgiving…
Turning half a century old is a remarkable milestone! When I was diagnosed with pulmonary hypertension (PH) almost 19 years ago, I was told that I had only three to five years left. Each birthday after those first five years feels like a bonus. So far, I’ve had…
“God gave burdens; he also gave shoulders.” — one version of a Yiddish proverb When loved ones become unable to care for themselves, the entire family can go through a heart-wrenching experience. Primary caregivers will witness those health struggles firsthand and thus bear an emotional burden that outsiders…
Shortness of breath is one of the most common symptoms of pulmonary hypertension (PH). It can have many triggers, and if you’re a patient just starting to learn about PH, you might be wondering what they are. Each person is different, of course, so something that might trigger…
If you haven’t heard about the advancements in potential treatments for those of us in the pulmonary hypertension (PH) community, hold on to your seats! I recently spoke with a dedicated, well-known PH specialist from the Houston Methodist Hospital, Dr. Sandeep Sahay, the co-director of the hospital’s…
Since my pulmonary hypertension (PH) diagnosis, I have been labeled a high-risk patient. Because it’s a rare disease, PH can be challenging to diagnose, treat, and manage. And with several other conditions, including chronic kidney disease, I face unique issues that can leave medical professionals…
I settled on the couch, the warmth of my cozy, heated vest wrapped around my aching body. But in that moment, even prescription pain medicine failed to bring relief. The clock on my MacBook taunted me. It was already past 3 a.m., and I found myself wide-eyed, lost in the…
Fall has always been my favorite season. Unfortunately, San Diego doesn’t quite have the enchanting fall foliage that other places do. Instead of a vibrant cascade of leaves, it’s more like a few scattered ones and a whimsical dance of pollen floating through the air. That mix mingles here with…
Get regular updates to your inbox.