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For family caregivers month, recognize the toll as well as the help

“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…

My top 5 truths about the surgery recovery process

With a history of eight major cardiovascular surgeries, I’m often assumed to be a pro at recovering from an operation. Maybe so, but no matter how many surgeries or procedures I endure, it never gets easier. I’m now healing after a successful bypass revision of two of my…

Understanding the power of love without fear

Loving someone with a poor prognosis is something I found myself unprepared for. With years of marriage comes history to draw upon, an established love and hard times under your belt. Time spent together through different seasons of life gives you a level of comfort and attachment. When newly married,…

I love to cook, so how do I keep my sodium intake low?

While I take a fair amount of medication to manage my pulmonary hypertension (PH), sometimes the hardest pill to swallow is admitting when I fall short with my treatment plan. Earlier this month, I was at a restaurant sharing a meal with an old friend I hadn’t seen…

Living long enough to see progress in PAH treatment

Years ago, when my husband, Tim, transitioned from intravenous Flolan (epoprostenol GM) to the oral medicine Uptravi (selexipag), it was a major milestone. The weeks-long process came about through careful planning between Tim and the physician who manages his pulmonary arterial hypertension (PAH). The daily lowering of…

Behind every new treatment for PH are dedicated professionals

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…


A Conversation With Rare Disease Advocates