Double-masking, staying at home nearly 24/7 and rarely seeing people beyond his wife are still the way of life for kidney transplant recipient Andrew Linder, even after many in the United States are living like the pandemic has ended.
Health officials are recommending third and even fourth shots to boost Covid-19 resistance for people with certain conditions, but that hasn’t eased the fears of some immunocompromised people.
Linder, 34, received the life-changing gift of a kidney from his wife, Emily, in September 2019. He will be on immunosuppressants for the rest of his life to keep his body from rejecting the organ.
In March 2020, as Covid-19 cases started to shut down workplaces and cities, Emily moved in with her parents for months because she works with the homeless and people in the prison system and did not want to get her husband sick.
The coronavirus vaccines brought some hope for the Linders, who live in Akron, Ohio. Andrew Linder had two doses of the Pfizer vaccine and later an additional dose and a booster. Hope quickly turned to heartbreak.
“I had no antibodies whatsoever. That was shocking and scary and sucky for sure,” Linder told CNN. “I almost feel just as unsafe or if not potentially a little bit more unsafe now than at the beginning of the pandemic, just for the fact that I could get it at this point in time.”
The pandemic isn’t over for many
Linder is one of many moderately to severely immunocompromised people trying to protect themselves as a number of people across the US are going back to some version of their normal lives.
The US Centers for Disease Control and Prevention estimates about 9 million people who live in the US, or about 3% of the population, are moderately to severely immunocompromised. That includes people in active treatment for cancers of the blood or for solid tumors, certain organ transplant and stem cell recipients, people with advanced or untreated HIV, and those who take high-dose corticosteroids or other drugs that may suppress their immune system.
A new study published by the CDC last week suggests people with compromised immune systems may need to receive three doses of a coronavirus vaccine and a booster shot to get as much protection afforded by two doses to those who are not immunocompromised. The effectiveness of the Pfizer and Moderna vaccines against Covid-19 hospitalization was 77% among immunocompromised adults versus 90% among immunocompetent adults.
For transplant recipients like Linder and some other members of the immunocompromised community, the research showed that vaccine effectiveness was lower than that.
Feeling more free to go out
CNN followed up with five immunocompromised people interviewed in March 2020. For some, like Linder, life really hasn’t changed much because of their lack of immunity. Others have gotten a sense of security after getting vaccinations and booster shots.
For Courtney Hodge, a single mom from outside Pittsburgh, living through the pandemic has brought her a new sense of clarity, and she said she’s trying to live with less fear.
Last year “made me reevaluate my entire life because you can die that quickly,” Hodge told CNN.
The 39-year-old has asthma and several autoimmune disorders, such as Graves’ disease, fibromyalgia and chronic fatigue syndrome. Given how suppressed her immune system is, Hodge worries she wouldn’t be able to fight off the damage coronavirus does to someone’s lungs.
“I am fully vaccinated with the booster, (so) I’ve been going out more and talking to more people than I think I have in my entire life,” Hodge said. She said she received a booster in August and would consider a fourth dose if needed.
Being vaccinated and boosted has also given Hodge the confidence to feel safe going to craft and vendor shows to further the candy business she started during the pandemic.
“I’m not as anxious, and I don’t feel impending doom anymore,” she said. “Even if I get sick with the vaccine, my chances of dying are not as high without the vaccine.”
She’s back to grocery shopping
Embracing life and trying to get back out into the world is also what Danielle Grijalva has tried to focus on, despite having a few people around her get sick and losing a friend to Covid-19, she said.
Grijalva received her first and second Covid-19 shots in April and May, respectively, and she said being vaccinated changed her outlook, allowing her to shift from mostly staying at home to feeling safe enough to grocery shop or see friends.
“Now I can I feel comfortable with walking in and shopping, and I keep my distance,” the 45-year-old said. “I just have decided that I am not going to live in fear.”
The mother of two from California was diagnosed in 2018 with a pain condition called fibromyalgia, chronic fatigue syndrome and several strains of echoviruses, which were found in her stomach.
However, her conditions don’t put her among the group of immunocompromised people recommended to get an additional dose, and it hasn’t yet been six months since her primary vaccination.
She said she will be eligible for her booster shot this month. Regardless, she said she is happy to see things reopening in the US and is enjoying seeing good friends and feeling a little bit of normalcy again.
She still caught Covid-19
But not all the immunocompromised people CNN followed up with were able to stay healthy and Covid-19 free.
Brittania Powell, a student at The Ohio State University, barely left her home for two months last fall until her family encouraged her to come work the polls in Ohio on Election Day 2020, she said.
Powell was diagnosed with the autoimmune disease lupus when she was 14. She also has an autoimmune disease called rheumatoid arthritis, anemia and lupus nephritis, which inflames her kidneys. She doesn’t know if she’ll wake up to swollen joints or if she’s going to be able to get around on any given day.
The 22-year-old said she and the other poll workers tried to disinfect common surfaces and keep things clean, but some of the people who came to vote were not wearing masks.
“I was double-masking, although I was wearing gloves, but I still caught (Covid-19),” she said.
Powell felt like she had the flu for a week and only coughed for one day, so she didn’t think she had Covid-19 at the time, she said. The next week she was very nauseous and had stomach issues, which sent her to the emergency room.
The next morning, she said she got a positive test result. The stomach issues stayed with her and she didn’t feel better for a month. Despite feeling sick, Powell said she stayed positive and tried not to stress as she recovered.
She received both doses of the vaccine this spring, and she said she’s not in a rush to get a booster yet. However, she has a message for other people.
“You’re not going to know who is immunocompromised just by looking at them,” Powell said. “I would just be considerate of others around you, even if you don’t want to get the vaccine, wear your mask at least. Follow the safety protocols that we use so that you’re not risking others’ lives.”
She’s still worried about her health
The need to have people watching out for those who may be more susceptible to Covid-19 is real for Eileen Davidson, a Canadian writer for an arthritis website.
The 35-year-old is a single mother with rheumatoid arthritis. She lives with her 8-year-old son, Jacob, in Vancouver, British Columbia.
“Some people kind of think the pandemic may be ending – it doesn’t really end for somebody who’s immunocompromised,” Davidson said.
At first, the lockdown was a good thing, as Davidson said she could relax. But not having access to physical therapy and her gym made it hard to manage her chronic condition.
“I went into a flare and there was a lot of stress,” she said. “Even just the stress around the pandemic can put somebody into higher disease activity.”
After waiting and watching the first Americans get their vaccines, Davidson was able to get her first shot in April and her second in June, as Canadian experts advised extending the time between doses. She also got a booster shot two weeks ago.
But another stressor popped up when demand for the medication she uses to manage her rheumatoid arthritis – a biologic called Actemra, or tocilizumab – escalated.
In June, the US Food and Drug Administration gave Actemra an emergency authorization use to treat hospitalized Covid-19 patients. It’s a monoclonal antibody therapy that helps reduce inflammation that can make patients sicker.
“I’m worried that my medication that I desperately need and have gone through so many to find the right treatment for me, (that there) will be a shortage of it because people are refusing to get their vaccine,” Davidson said.
They just want to go back to normal
Among those who are immunocompromised, a common thread is the yearning to live their lives. For Linder, the thought of not getting to resume some shred of normalcy at some point is overwhelming.
“For me not to be able to live a life that again, I fought so hard to get and that my wife donated a part of her body to me for us to live a life together, it just it hurts,” he said. “It cuts so deep that it’s a pain that I can’t explain.”
Linder said a stranger in a grocery store, where Linder goes when he’s become stir crazy and just needs to get out of the house, once yelled at him that he doesn’t need a mask and the pandemic is over. Note: That stranger is wrong. Neither of those things are true.
He said he feels “a lot of jealousy, a lot of envy because the message that has been clearly pushed into the society right now is that it’s like if I don’t want to risk death, I need to just stay home, and I need to stay in my house forever,” he said.
Linder dreams of finally taking a honeymoon with his wife – their two-year anniversary is approaching in December. That trip is not happening anytime soon, because they know it’s not safe for him to fly.
For now, he hopes he can see his sister, her husband and his nephew for the holidays. They aren’t sure how that would look, but he said it would be nice to spend a holiday with his family for the first time in two years.
CNN’s Jen Christensen and Jacqueline Howard contributed to this report.