For the Immunosuppressed, Life Still Isn’t Back to ‘Normal’

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by Jennifer Lynne |

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In addition to having hemophilia B and von Willebrand disease, I also am a caregiver to my 79-year-old mother, whom I live with in Florida. Avoiding COVID-19 has been difficult for us, as she was diagnosed with a severe immune deficiency at the height of the pandemic.

Lately, when it comes to COVID-19, it feels as if the world has decided to move on. That leaves us with a strong sense of being left behind as people around us return to “normal.”

According to the Immune Deficiency Foundation, primary immunodeficiencies (PI) are chronic conditions in which part of the body’s immune system is missing or not functioning properly. People with PI commonly experience increased susceptibility to infection, including COVID-19. My mom’s immunologist remarked, “It’s not just COVID-19 she is susceptible to; it’s everything.”

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My mom receives monthly infusions of an immunoglobulin replacement medicine called Gammagard, and she wears a KN95 mask in public places to protect her from COVID-19 and other viruses and infections. I wear a mask, too, and take precautions to avoid becoming sick myself and transmitting disease to her.

Life in a bubble

The year 2020 was hard, and last year was even more challenging. We followed all of the rules, even when most people here were not. My mom’s immunologist told us not to travel, even for the holidays. She said to live like we were in a bubble. We didn’t allow visitors for over a year. We relied heavily on delivery services for groceries and meals. This also meant no movie theaters, no bingo, and no socialization in general, including visits from family and friends.

According to the Immune Deficiency Foundation, being around other people always carries more risk for contracting COVID-19 than when isolating at home. But isolation has mental health risks and may affect physical health if people delay medical care or decrease physical activity. The mental health toll of isolation became apparent immediately as my mom’s depression and anxiety worsened.

“I know I am greatly affected by the lack of socialization,” she told me. “I don’t know how many years I have left, and I desperately want to spend time with my family and friends.”

My mom also has chronic obstructive pulmonary disease, or COPD, which causes obstructed airflow from the lungs. She stopped attending her beloved pulmonary rehab classes for COPD, because, oddly, the medical facility that runs the program doesn’t require masks.

Moving on

As the world moves on, we, too, are taking more risks. My mom misses hugging her grandchildren and other family members and friends. Quality of life has become our goal while doing our best to stay safe. So we started welcoming fully vaccinated visitors earlier this year. Some graciously took a COVID-19 test upon arrival and wore masks around us.

Movie theaters and bingo are back on our schedule. Somewhat reluctantly, I agreed to take her to Milwaukee and Chicago to visit family in July. A daily card game called “Oh Hell,” which she plays on Zoom with her sisters and brother-in-law in California and Illinois, has become the highlight of her days.

As a caregiver, I question every decision I make. Are the movies safe? What about the grocery store? Airplane travel? Will this be the day I bring home COVID-19 or a different type of infectious disease?

The world may have moved on, but we still wear masks, even in Florida, where masking is unpopular and has become a political issue. People look at us like we live in fear. But even without COVID-19, my mom would still need to wear a mask. For us, masks will not be going away anytime soon.

Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.


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