December 2021, about 6 months after Eva was born, I started having a cough that was more than just the average tickle. It was pretty consistent and noticeable enough for Evan to tell me I needed to look into it. I was also experiencing shortness of breath, but I figured it was a lingering symptom post pregnancy and from not fully being back in shape. Now that I think of it, spin class really became a challenge and I left in the middle of one of my classes. A first after seven years on the bike.
I got an appointment at BetterMed and they did an X-ray of my chest.
“It looks like you have Covid pneumonia,” the doctor said. “But, I’ve never had Covid (to my knowledge),” I said.
That doctor advised me to follow up with my PCP, who I had already scheduled an appointment with a few weeks back. I went to my PCP in January 2022 and she ordered a CT scan. Without much explanation, I was then referred to a pulmonologist to dig a little deeper. I saw the first pulmonologist in March and he said it looked like I had sarcoidosis, based on the lung symptoms I was having. I underwent a procedure to conclude that I had sarcoidosis, but the test was inconclusive. I was prescribed supplemental oxygen since my O2 saturation dipped into the mid-80s during a walking test. A normal, healthy person’s O2 saturation should never drop below 90. I wore it on occasion around the house, but I didn’t really see a need for it at that time. I was also prescribed a steroid, but I didn’t find it that helpful. After three months, I was referred to another pulmonologist for a second opinion before doing an invasive open lung biopsy.
While all this medical stuff was going on, my family and I continued to live a full and abundant life. Eva was nearing her first birthday. I had gotten the role of Director of Exhibitions at a botanical garden, my dream job position. Evan and I had plans to travel and see a couple of bands we both admire. Eva attended her first Phish show. We were living a packed life!
Celebrating “FestEva I,” Eva’s 1st Birthday.
It wasn’t until October 2022, when I tested positive for covid for the first time, that things took a significant turn for the worst. I don’t think I ever recovered from that, and, all the while, my lung disease was continuing to progress in the background. At the end of October, I had another procedure, and the results for sarcoidosis came back inconclusive. A few weeks later, our family traveled to Mississippi for the Ole Miss vs. Alabama football game. Mom went to Ole Miss and I went to Alabama, and this was Evan’s first SEC football game as well as Eva’s first plane ride. A special occasion, but I spent most of the trip in a wheelchair and relied on my portable oxygen concentrator. It was that trip where the reality of my limitations began to sink in.
For Thanksgiving, our whole family went to Nags Head for a week. This trip was incredibly hard on me. Like most beach houses, there were many flights of stairs in the house, and also to the beach. I felt trapped. The ocean is my ultimate place of peace and restoration, and the thought of taking the stairs to the beach felt impossible. I made it a goal to make it to the beach, and with a lot of help and one stair at a time, I made it. It was definitely hard to be so physically capable in other ways, but not having my breath made me unable to do the things I wanted to do. I was prescribed steroids again, but this time at a much higher dose. I now felt physically capable of doing household chores, bathing Eva, and making dinner. I was able to shed the portable oxygen concentrator, my recent accessory, because I didn’t think I needed it. Life seemed pretty manageable and I felt like I could live with my lung disease, especially since I was remaining hopeful for treatment that would prevent me from getting worse. Needless to say, 2022 presented several challenges to accept and work through. My spiritual foundation, loving family, and supportive community gave me the strength to walk through the unfamiliar one day at a time.
Breathing in the beach, after meeting my goal.