“Live in the moment.” This saying is such a cliché in the chronic illness realm, yet I force myself to reply with some version of this daily when I am asked how I’m doing. My response usually is something along the lines of,…
A large part of pulmonary hypertension management is taking the necessary medications to help ease symptoms and delay progression. Because pulmonary hypertension impacts more than just the lungs, many with this disease have a list of at least a dozen different medications to treat various…
I love the desert. No, this is not a timely column post about Burning Man. Sorry to disappoint. I’ve really only been to the desert twice. The general inconvenience of traveling with pulmonary hypertension (PH) limited me before, and my doctor advised me to avoid high…
“Auntie B, come catch me!” My nephew yelled this, already off to a quick head start. Luckily, my sister was there to chase after him and take my place. I started thinking about how badly I wish I could run after him and…
Attending the Transplant Games of America in Salt Lake City earlier this month was the best gift I’ve ever given myself. As discussed in previous posts, I have met many other recipients in hospital waiting rooms and support groups. It was a unique chance to…
Growing up with more than one genetic condition, I never gave much thought to the long-term effects they would have on my body. It wasn’t until I became an adult and started taking control of my health needs that I realized how these genetic conditions contributed…
*** “Pain comes in all forms. The small twinge, a bit of soreness, the random pain. The normal pains we live with every day. Then there’s the kind of pain you can’t ignore. A level of pain so great that it blocks…
I don’t know how to begin to explain the experience of being at the Donate Life Transplant Games of America. It’s been all I’d dreamed of, and so, so much more. To say that my emotions have overwhelmed me would not do justice…
Just the thought of surgery sends my anxiety into overdrive. After having over a dozen surgeries in my 27 years of life, some would assume I am a pro at it. Most people don’t realize the kind of anxiety that goes along with the word…
One thing that I have looked forward to throughout my transplant journey is the Transplant Games. I was fortunate to learn about the Donate Life Transplant Games of America just days after my surgery. The Games were in Cleveland,…
Mayo Clinic defines post-traumatic stress disorder (PTSD) as “a mental health condition that’s triggered by a terrifying event — either experiencing it or witnessing it.” Living with pulmonary hypertension and other cardiac and neurological conditions has caused my body to endure…
In June, I attended my first Pulmonary Hypertension Association Conference in Orlando, Florida. Sitting in a packed ballroom full of strangers, I had never felt more seen. Many of the faces around me were fellow PHighters, and we were all there for the same reason. I left…
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