Sitting in a hospital room for the past few days has given me a lot of time to think. When my mind wanders, it could be good, leading to self-reflection, or it can heighten my anxiety and worsen my depression. Over the past 24 hours,…
I can’t recall a time in my life when I didn’t have scars to show. Growing up with congenital heart disease left me with scars from drainage tubes and open-heart surgery, and cutdown scars from catheters and IV placements. I was always told to “love my scars”…
Surviving day in and day out with a life-threatening illness like pulmonary hypertension (PH), well, simply sucks. My struggles with numerous symptoms and medication side effects weigh me down and rapidly deplete me. Uptravi (selexipag) and Revatio (sildenafil) can cause horrific side effects, and these are my two primary…
Pulmonary hypertension (PH) has a ripple effect on family life. A diagnosis is like a pebble tossed into water, its weight disrupting the calm with waves of change. My advice is to wade through those ripples and rescue some normalcy. It might take time to calm the waters, but…
“Advocacy August” is here. Because pulmonary hypertension (PH) is a rare disease and has no cure, it is necessary that we promote awareness among those who can make a difference in our lives. When it comes to government decisions, advocacy means helping people who might otherwise be overlooked to…
Last Sunday, I thudded up the stairs to my apartment, making as much noise as possible, unlocked the door forcefully, and slammed it behind me. As soon as I entered, I rummaged through my cupboard, frantically looking for a medicine cup. I raised my voice at my boyfriend,…
A therapist once asked me what makes me happy, and I said “food” right away. Thankfully, I’ve matured since high school, and food is no longer at the top of my mental list of reasons to live. Now coffee ranks above it. I’m joking!…
My son is celebrating a big transplant anniversary! Five years ago, on Aug. 7, 2014, he received a heart and double-lung transplant. This very rare surgery was completed within seven hours, and from what I was told, he was surviving on borrowed time. The gift of organ donation…
My schedule was hectic this week. I had several days of bloodwork and doctors’ appointments scheduled. The heat here in Texas with its suffocating humidity is not ideal weather for someone with pulmonary hypertension (PH). My energy levels were quickly depleted, and I became mentally and physically drained. When…
I don’t have control over a lot when it comes to my health. I can’t choose the surgeries I will have, and I can’t predict what my physical symptoms will be like day to day. Although so much seems out of my control, there are certain things…
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…
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