- As the COVID-19 outbreak grows in the United States, people who are immunocompromised are put in great danger simply living their lives.
- People who already take steps to avoid illness are taking drastic measures to protect their health.
- More than 180,000 Americans have developed COVID-19.
An estimated 60 percent of all Americans live with at least one chronic health condition that puts them seriously at risk for complications from the novel coronavirus.
As the COVID-19 outbreak grows in the United States, people who are immunocompromised are put in great danger simply living their lives. As the majority of Americans are now under some sort of shelter-in-place order, we talked to two people who are immunocompromised about their lives amid the pandemic.
Carole Zoom lives up to her last name. As a residential and commercial Realtor and new Portland resident (she recently left Hawaii due to its lack of accessibility), she uses public transport regularly, and during non-pandemic times, can be seen zooming around town in her power wheelchair.
Zoom has collagen-related congenital muscular dystrophy and has used a wheelchair since the age of 13 and a ventilator full-time since 2001. Zoom is as high risk as they come. “I arrived in Portland, Oregon (earlier in March), a few days before the world collectively realized that to slow the spread of COVID-19 we all need to practice social distancing.
“The irony of protocols we are currently exercising during the COVID-19 outbreak is that I moved in order to get around solo on public transportation, and now I’m not allowed to do so. Because I use a ventilator, I would not survive an infection — even a common cold could be my end. So I haven’t been outside my new home and won’t be able to get outside or on transport until there’s an effective vaccine, which is months from now.”
Zoom requires help daily to get in and out of bed, showered, dressed, and to do all her errands. She can’t distance herself from the essential daily help she needs.
Since arriving, she has put together a care team who do her intimate care and are willing to restrict their socialization so that she’s not exposed to the virus as much as she would be if they didn’t restrict their movement and contact. “That feels like tremendous commitment to me,” she said.
Zoom’s concerned about supplies. She planned ahead enough to order groceries and other necessities a few weeks before she arrived, so her new home is stocked with about 2 weeks of food. But the local stores are out of medical supplies such as rubbing alcohol and sanitizer.
Even more concerning, she said, is her apartment building is restricting deliveries.
“We are not talking here about simple pizza delivery that others may crave, (but) the sterilized respiratory supplies that I need weekly (which) are not available in any store and have to be delivered,” she said. She leaves any deliveries that do arrive alone for a few hours, then sprays them down with disinfectant before bringing them inside.
Another complication is access to routine medical care. Zoom can’t get in to see a doctor until at least mid-June because of the pandemic and because she’s considered a new patient.
“The specialized respiratory supplies I use require an Rx from my not-yet-existent doc. I brought 2 months’ worth of supplies but need another month’s worth, so I’m going to keep trying to get to see a doctor by calling daily and may have to go to ER to get any doctor to sign off for supplies. The ER seems an awful idea and the nexus of germs I’m trying to avoid… it’s all exhausting because failure is not an option,” she said.
If people want to help, Zoom advises healthy people to check on their neighbors, distant family members, co-workers, “and even that homeless person on the corner you’ve ignored up to now.”
She added, “Keep in touch in meaningful virtual ways, as the isolation can be triggering for some folks. A caring phone call can make a ton of difference in times like these.”
Courtney Lynn has several diseases, including autoimmune disorders such as Graves’ disease, fibromyalgia, and chronic fatigue syndrome. She also has asthma.
Adding COVID-19 into the mix is like “the hay bale that broke the camel’s back,” she said. “For someone like me, if I contract COVID-19, it will likely kill me. It won’t be just ‘flu-like’ conditions, and I won’t be asymptomatic. I will, at the very least, be hospitalized and may never fully recover from it.”
Lynn is self-quarantining at home along with her college-age son. “As a mom, it breaks my heart that (he) cannot go out with friends or have them over… he has to make sure I’m protected,” she said. “I do not want to be a burden on him. So, that just adds to the stress of this entire situation.”
Lynn has had to cancel multiple medical appointments this week, as well as therapy. Her insurance doesn’t cover therapy telehealth appointments.
She already has anxiety on a daily basis and had been working with her therapist to heal childhood trauma. “This crisis has made things so much worse… while I have never suffered from depression before, I can feel myself becoming more and more hopeless as time goes on. All I can do right now is make sure I am doing my part to stay away from people.”
Lynn’s message to healthy people is this: “Just be extra cautious. Slow down a bit. If you can cook at home instead of going out, do that. Watch streaming services instead of going to the movies. Just for a bit. Let this disease slow down so immunocompromised people do not have to isolate indefinitely.”