My repeated hospitalization cycle since November has tested my physical and mental strength. When pain, fatigue, depression, and anxiety fill my thoughts, it is hard to see the positive. While in the hospital, a transition to a double-occupancy room restored my strength.
My support systems provide me with courage, sympathy, and compassion and help me to persevere in difficult moments. A large part of my support comes from an online community called the Pulmonary Hypertension News Forums. The PH News Forums have allowed me to…
The night before my heart-lung transplant, I was in my high school art studio working on an oil painting. I had started painting to pass the time while waiting for the call, and I returned to the comfort of Mr. Miller’s…
“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…
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…
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