Sept. 1, 2021 -- Jessica Gosnell, MD, of Portland, OR, lives daily with the knowledge that her rare disease — a form of hereditary angioedema — could cause a sudden, severe swelling in her throat that could require quick intubation and land her in an intensive care unit (ICU) for days.
"I've been hospitalized for throat swells three times in the last year," Gosnell, 41, says.
Gosnell no longer practices medicine because of a combination of illnesses, but lives with her husband, Andrew, and two young children, and said they are all "terrified" she will have to go to the hospital amid a COVID-19 surge that had shrunk the number of available ICU beds in Oregon to152 from 780 as of Monday. Thirty-percent of the beds are in use for patients with COVID-19.
She said her life depends on being near hospitals that have ICUs and having access to highly specialized medications, including a rescue dose of one drug that can cost up to $50,000.
Her fear has her "literally living bedbound." In addition to hereditary angioedema, she has Ehlers-Danlos syndrome, which weakens connective tissue. She wears a cervical collar 24/7 to keep from tearing tissues, as any tissue injury can trigger a swell.
Patients Worry There Won't Be Room
As ICU beds in most states are filling with COVID-19 patients as the Delta variant spreads, fears are rising among people like Gosnell, who have chronic conditions and diseases with unpredictable emergency visits, who worry that if they need emergency care there won't be room.
As of Monday, in the United States, 79% of ICU beds nationally were in use, 30% of them for COVID-19 patients, according to the Department of Health and Human Services.
In individual states, the picture is dire. Alabama has fewer than 10% of its ICU beds open across the entire state. In Florida, 93% of ICU beds are filled, 53% of them with COVID patients. In Louisiana, 87% of beds were already in use, 45% of them with COVID patients, just as category 4 hurricane Ida smashed into the coastline on Sunday.
News reports have told of people transported and airlifted as hospitals reach capacity.
Wilkinson's house was three doors from Bellville Hospital, but the hospital was not equipped to treat the condition. Calls to other hospitals found the same answer: no empty ICU beds. After a 7-hour wait on a stretcher, he was airlifted to a Veterans Affairs hospital in Houston, but it was too late. He died on Aug. 22 at age 46.
Kakli said, "I've never lost a patient with this diagnosis. Ever. I'm scared that the next patient I see is someone that I can't get to where they need to get to. We are playing musical chairs with 100 people and 10 chairs. When the music stops, what happens?"
Also in Texas earlier this month, Joe Valdez, a bystander shot six times as an unlucky bystander in a domestic dispute, waited for more than a week for surgery at Ben Taub Hospital in Houston, which was over capacity with COVID patients, the Washington Post reported.
Others with chronic diseases fear needing emergency services or even entering a hospital for regular care with the COVID surge.
Nicole Seefeldt, 44, from Easton, PA, who had a double-lung transplant in 2016, says in an interview that she hasn't been able to see her lung transplant specialists in Philadelphia — an hour-and-a-half drive — for almost 2 years because of fear of contracting COVID. Before the pandemic, she made the trip almost weekly.
"I protect my lungs like they're children," she said.
She relies on her local hospital for care, but has put off some needed treatment, such as a colonoscopy, and has relied on telemedicine because she wants to limit her hospital exposure.
Seefeldt now faces an eventual kidney transplant, as her kidney function has been reduced to 20%. In the meantime, she worries she will need emergency care for either her lungs or kidneys.
"For those of us who are chronically ill or disabled, what if we have an emergency that is not COVID-related? Are we going to be able to get a bed? Are we going to be able to get treatment? It's not just COVID patients who come to the [emergency room]," she said.
A Pandemic Problem
Paul E. Casey, MD, chief medical officer at Rush University Medical Center in Chicago, says high vaccination rates in Chicago have helped Rush continue to accommodate both non-COVID and COVID patients in the emergency room.
Though the hospital treated a large volume of COVID patients, "The vast majority of people we see and did see through the pandemic were non-COVID patents," he said.
Casey said that in the first wave the hospital noticed a concerning drop in patients coming in for strokes and heart attacks — "things we knew hadn't gone away."
And the data backs it up. Over the course of the pandemic, the CDC’s National Health Interview Survey found that the percentage of Americans who reported seeing a doctor or health professional fell from 85% at the end of 2019 to about 80% in the first three months of 2021. The survey did not differentiate between in-person visits and telehealth appointments.
Medical practices and patients themselves postponed elective procedures and delayed routine visits during the early months of the crisis.
Patients also reported staying away from hospital' emergency rooms throughout the pandemic. At the end of 2019, 22% of respondents reported visiting an emergency room in the past year. That dropped to 17% by the end of 2020, and was at 17.7% in the first 3 months of 2021.
Casey said in his hospital's case, clear messaging became very important to assure patients it was safe to come back. And the message is still critical.
"We want to be loud and clear that patients should continue to seek care for those conditions," Casey said.
Plea for Vaccinations
Gosnell made a plea posted on her neighborhood news forum for people to get COVID vaccinations.
"It seems to me it's easy for other people who are not in bodies like mine to take health for granted," she said. "But there are a lot of us who live in very fragile bodies and our entire life is at the intersection of us and getting health care treatment. Small complications to getting treatment can be life altering."