A Crohn’s patient shares her very real fears, anxieties, and sadness around being immunocompromised while grappling with the coronavirus pandemic in New York City.
*Originally published on April 27th, 2020 by Everyday Health: https://www.everydayhealth.com/columns/my-health-story/immunocompromised-in-the-age-of-coronavirus/
It was one of those winters full of never-ending health complications. Before Thanksgiving I ruptured a ligament in my ankle, which compounded my difficulties in managing life with Crohn’s disease. And if that wasn’t hard enough, many of my other conditions — gastroparesis, arthritis, pelvic pain — flared up due to immobility from the ankle injury. More recently, I had a couple of ER visits because of a herniated disc in my neck. In March, I caught myself (wearing a neck brace) staring out of my physical therapist’s office window at the empty vastness of Midtown Manhattan’s streets, now left lonely from the coronavirus pandemic.
In that moment, it dawned on me that the coronavirus would probably take my spring and summer away, too. I felt sad and angry, and I wrestled with anxiety and sleepless nights for the next few days as the news sank in.
The day after the physical therapy appointment, my gastroenterologist emailed to say, “Hunker down, Tina. Don’t come in, but take your meds on time. We will chat over telehealth and discuss your labs.” To me, it felt like game over. I couldn’t believe in my heart of hearts that this was actually happening, but I knew compliance was key.
The following morning, March 11, the World Health Organization declared the coronavirus outbreak a pandemic. My heart skipped a beat as President Trump announced a federal state of emergency and cities and states jumped to declare their own shutdowns. Over the next couple of days, my mind was relentlessly spinning. I thought back to all the doctor’s appointments and subway rides I had taken over the previous 14 days, along with recent travel to a conference. And I wondered if at any point I could have been exposed to COVID-19. Even though I have always been rigorous about washing my hands and wiping down any surface I touch, I was concerned.
You see, I am considered high risk for COVID-19 (trending hashtag #HighRiskCOVID19) because my immune system is compromised from immune-modifying medications for Crohn’s disease: Stelara (ustekinumab), a biological agent, and mercaptopurine, a cancer medication used to suppress the immune system. The combination of these medications had saved my life after multiple colorectal surgeries, ostomies, and fistulas.
In addition, I also suffer from asthma, which can increase my risk of COVID-19, and I was hospitalized with the flu a few years ago.
Having lived through a life-threatening form of the flu, the thought of contracting COVID-19 was crippling. I self-quarantined in New York City two weeks before the shelter-in-place orders went into effect, and was full of fear. I couldn’t think straight. I couldn’t concentrate on anything. All I could think about was, “Did I catch this? Did my husband get exposed? What will we do if one of us did? How can we isolate in a tiny Manhattan apartment? What will we do if one of us needs to be hospitalized or needs a ventilator?”
To finish reading about my experience as an immunocompromised patient living in New York City, the epicenter of the COVID-19 outbreak, please visit the Everyday Health website: https://www.everydayhealth.com/columns/my-health-story/immunocompromised-in-the-age-of-coronavirus/
During this time while the situation around the world is so uncertain, please take a moment out to think about taking precautions to protect yourselves and to protect others. Stay home, be well and stay safe!
