“I’m sorry you have to take these days out of work.” “I’m sorry for not being able to spend a lot of time with you.” “I’m sorry this has been so hard for me.” “I’m sorry for…
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I am particularly sensitive to feeling left out of activities with friends. This started when I was a young, sick kid. I walked at the very end of the group while a day camp counselor scolded me for not keeping pace. After my pulmonary hypertension (PH)…
Pulmonary hypertension is unpredictable in countless ways. I experience noticeable health changes throughout each day, from one hour to the next. Pulmonary hypertension has impacted the way I breathe and the amount of daily exertion for the things I love doing. Recently, it has harmed my weight…
2018 was triumphant. I accomplished several of my long-term goals. I had zero organ rejection, so I remained on my lowest dose of prednisone all year, and that meant less brain fog, more stable moods, and fewer panic attacks. Though I frequently worried about my…
When I was younger, the holiday season was all about happiness and excitement. But each year, as I got older, it seemed as if the “magic” of the holiday season started to fade. For those with a chronic illness such as pulmonary hypertension…
“Hopefully we won’t see you back here any time soon!” “Let’s hope not!” This was the conversation between my nurse and me as I walked out of the hospital after a nine-day stay. The nurse and hospital staff saw me walking…
Last week I went in for a cardiac ultrasound (I call this exam an echo). I’ve probably had hundreds of them in my life, but since my heart-lung transplant, echoes are more emotional than ever. It’s not because I’m afraid of the results.
Some days, I feel well enough to make the most out of each day. On these days, I find the energy to clean the house, make food, do laundry, get shopping done, and work a part-time job as a nanny. Although all of this…
Wonder Woman has an invisible jet. Harry Potter has an invisibility cloak. I have an invisible illness. The people I sit next to on the metro cannot see it. Members of my family cannot always see it. Every day I work with and walk among healthy…
One of the most challenging realities I face with chronic lung disease is that my only option to feel better is to continue with treatments. There is no cure to make it all go away. Instead, I must choose to say “yes” to treatments, taking medications,…
For 16 years I slept with supplemental oxygen delivered through a nasal cannula. Prone to desaturation at night, I blasted two liters of concentrated oxygen through my nose every minute in an attempt to keep my bloodstream’s amount of oxygen at a safe level. When…
People say that bad things happen in threes. I think that saying is a bunch of baloney. Lately, it has felt like bad things are flooding my life. Some days I ask myself, “What else can go wrong?” The universe takes that as a challenge:…
