Avoiding COVID-19 as an immunocompromised patient
A columnist recalls the difficulties of regular trips to the infusion center
Living through a pandemic was certainly not on my bucket list, especially given my rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH). Learning immunocompromised people are at a high risk for the COVID-19 virus was extremely nerve-wracking. Even though I looked healthy, I knew I was in that category.
During the lockdown, I had left my home every two weeks to receive Soliris (eculizumab) infusions. I took as many precautions as possible by wearing a mask and gloves. I brought a box of gloves with me and changed them after touching anything. I also styled my hair in a tight bun, thinking I’d have less exposure with my hair up. I stopped bringing a blanket and snacks. And I showered the second I got home.
Wearing a mask
Another problem I faced was that I drank apple juice while getting my IV placed, to avoid passing out from vasovagal syncope, caused by a sudden drop in blood pressure. Since I had passed out before, drinking apple juice for the added sugar became my routine to help keep my blood pressure stable and ease my anxiety.
During the pandemic, I struggled over whether I should lower my mask to drink. I ended up maneuvering the straw under the mask so that I could still drink without lowering my mask. When the pandemic restrictions began to ease, I’d ask my nurses if they were comfortable if I lowered my mask. They said yes, which made it a lot easier, but still scary.
Responsibility to others
When I wasn’t at the infusion center, I felt a burden in everyday life over whether I might expose people at the infusion center during my appointments. Every decision I made to protect myself against COVID-19 affected the entire center. I assumed that other patients were also immunocompromised. I wouldn’t be able to forgive myself had I not been careful and exposed other patients I came in contact with. I felt I had a responsibility not to catch COVID-19 not only for myself but also for them.
For nearly a year of treatment before the pandemic hit, someone always accompanied me to my infusions. It was mostly my mother, but other family members occasionally did, too. I loved having a companion to talk to, hold my hand while the IV was inserted, and help wheel the IV pole if I had to use the bathroom.
When the pandemic started, I wasn’t allowed to have visitors. The thought of being alone was overwhelming.
Other patients were alone, too, and it was upsetting to see. My nurse said it was hard to see new patients come in for their first treatment. My first time at the infusion center was scary and upsetting, and I can’t imagine doing it alone. I offered as much support as I could to the other patients, with friendly chitchat from a distance.
Space between patients
The setup at the infusion center also changed. Staff tried to space our appointment times to avoid having too many patients at once. They blocked off every other chair to create space and set up temporary walls between chairs for more protection. I appreciated all the steps they took to keep us safe. I felt like I was in good hands.
All the emotions, fears, and helplessness I felt during the COVID-19 pandemic affected me greatly, which I’m sure many of you can relate to. I’d like to genuinely thank all the healthcare heroes who stepped up to the plate. With my nurses, I witnessed how much of an impact they had on my safety. I thank you all from the bottom of my heart.
Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.