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:…
“When we’re headed toward an outcome that’s too horrible to face, that’s when we go looking for a second opinion. Sometimes, the answer we get just confirms our worst fears. But sometimes, it can shed new light on a problem. Make you…
Lately, I’ve been so busy with my freelance photography business that I haven’t had time to put thought into a new column. I suppose that means it’s time to write about what I do outside of publishing this column and moderating the Pulmonary Hypertension…
According to the National Consortium on Racial and Ethnic Fairness in the Courts, “National Disability Employment Awareness Month (NDEAM) is a national campaign held in October that raises awareness about employment issues for disabled people, and celebrates the many and varied contributions of America’s workers…
I previously defined myself by the things that consumed the majority of my time. In high school, I was a student-athlete. I used most of my energy for ice hockey and the rest for studying. In college, I spent most of my time in classes or…
Last week, I was discharged from the hospital four days after surgery. During my stay, my body had gone through a trauma. I was operated on, intubated, and mechanically ventilated. I was managing pain that felt beyond my control. I was sleep-deprived, medicated, and not in…
Claire Wineland’s death on Sept. 2 set the tone for the month. Great losses in my communities clouded September. Claire suffered a stroke after a double-lung transplant. She was a brilliant young woman with a gift for public speaking, and she had cystic fibrosis. Her story was highly…
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