RACHEL MARTIN, HOST:
At least 46.5 million Americans have been diagnosed with COVID-19 since the beginning of the pandemic. The vast majority of them went through it and then came out on the other side just fine. But for others, there is no other side. COVID has left them with long-term side effects. Today, we're going to tell you the story of one of those people. And if you're out there thinking, I just cannot listen to another sad story about COVID, you're in luck. Because this is a love story. And for Bryan Mason and Jeanine Hays, it started at an airport.
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JEANINE HAYS: We met in high school.
MARTIN: Come on.
HAYS: (Laughter) Yes, on a college tour to Florida A&M University. We met on the tour. We basically started talking the very first day that we met at the airport in Philadelphia.
BRYAN MASON: You know, I was fortunate on the plane that she happened to have empty seats next to her. So I got up and went and sat next to her.
MARTIN: Whoa, bold.
HAYS: He was, definitely.
MASON: I was like, you know what? I'm not in school. Nobody here knows me. You know, let's just do what I would never, ever, ever do. You know, it worked out.
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MARTIN: Like a lot of good love stories, a problem can take shape, testing the couple with something that seems insurmountable. For Jeanine and Bryan, it was the coronavirus.
HAYS: Wanting to stay here - wanting to stay alive - was so important for me because I thought more about my husband. I kept thinking, like, I can't leave him.
MARTIN: That's how bad things got. But let's back up. Jeanine and Bryan have been together now for 25 years. They started their own design company, so they work together, they live together, and they can read each other better than anyone else can. So in early 2021, when Bryan woke up and wasn't feeling well, Jeanine knew it was serious.
HAYS: By the end of the day, he could hardly move. He was, like, the most sick I had ever seen him in all the years that we've been together.
MARTIN: So you guys aren't even thinking that this is COVID. Your doctors aren't talking about it.
MASON: You know, once they saw that I had the double pneumonia, and then once the lockdown happened, they were like, well, you should get a COVID test just to make sure. And we went in. I did the nasal swab. And it actually came back negative. They told me that I didn't have it. So the whole time I was sick, I thought that I didn't have COVID.
MARTIN: Then in June, they were both able to take an antibodies test...
HAYS: ...Which then confirmed that we both had had COVID.
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MARTIN: It felt good to have clarity. The test validated what they and their doctors had suspected, and they thought it was then over, until Jeanine started experiencing other symptoms.
HAYS: One day I was in the bathroom. I had my bare feet on the floor. And my feet felt like they were on fire. Like, I felt like my body was on fire. And I was screaming. My feet were completely red, and they had broken out in these hives and this rash. And things started to just get weirder after that. I would eat certain foods that I would eat all the time, and I would start getting swelling in my throat. And the swelling condition just started to worsen over the summer of 2020. And it was in August. We sat down to eat lunch. I'd never experienced anaphylaxis before. But then it was like, I can't breathe. I can't really speak. I screamed as much as I could for Bryan to give me a shot of an EpiPen. I was blacking out. And you know, I felt terrible for Bryan because, you know, he had never even had to use it before. But he had to administer two EpiPen shots.
MARTIN: What had you eaten?
HAYS: I had eaten a hot dog (laughter).
MARTIN: It was a hot dog?
HAYS: I had. I just loved hot dogs at the time. I don't eat them much anymore. But I did eat a hot dog that day, and that was what ended up causing the anaphylaxis.
MARTIN: Jeanine's doctors told her to go to an allergy specialist. She did, but she didn't get answers. At this point, we should acknowledge that Jeanine and Bryan are Black. This matters because health care in this country is also affected by structural racism. Black people have a harder time getting doctors to take their symptoms seriously. Last June, the American Medical Association adopted a new set of guidelines to address discrimination, bias, abuse and microaggressions in health care. Jeanine's conversation with the specialist went like this.
HAYS: I was like, you know, I think that there might be something going on with COVID. It got slightly sick. I had antibodies. And she was just like, no, there's no evidence of that. I think she was doing a study around Black women and herpes, and so she kept saying, are you sure you don't have herpes? And I was like, no, like, this is - I don't have herpes. At that point, it was just clear that we were not talking to the right specialist. She wasn't really open to this being post-COVID. But I know that there's something really wrong going on.
MARTIN: Their most trusted point of contact through all of this was a nurse practitioner named Carrie Wynn.
MASON: Carrie was the one that I could always talk to. When I was really scared, I would be able to put a message into her through Oscar's messaging app. And if Jeanine was in a place mentally where I couldn't calm her down, Carrie would call, talk to us, listen to what was going on, give us her opinion on - you know, a realistic assessment of where we were at.
MARTIN: How does that make you feel to hear that clip and know the difference you made?
CARRIE WYNN: Wow. It's humbling. It actually brings tears to my eyes.
MARTIN: Carrie works at Oscar Medical Group in New York. Long-COVID can show up through a lot of different symptoms, not just allergies, like an Jeanine's case. We know that now. But a year ago, Carrie Wynn didn't have a lot of other colleagues talking about patients suffering from COVID for months after their diagnoses.
WYNN: At times, I did feel out on the limb, and I had to try to get creative and reach out to, for instance, an immunologist that I knew from a prior role and see if she would be willing to help consult or curbside or see the patient. And I think I was working with a rheumatologist at Hospital for Special Surgery, just trying to have telephone calls to coordinate care.
MARTIN: All the while, Jeanine's allergic reactions were getting worse. She ended up with a painful infection in her mouth called thrush...
HAYS: ...To the point where I couldn't actually eat anymore because everything hurt. I didn't want to talk anymore, and I'm a talker. And so Bryan would make me, like, applesauce. He would make, like, some smoothies, and I'd get down a little bit of nutrients. But I was losing weight, and I felt like I was dying. And Bryan took care of me, really just saving my life.
MASON: You know, she was saying, you know, it felt like she was dying to her. It felt like that to me. I could feel that she was slipping away.
MARTIN: They researched hospitals or clinics that could offer more help, but there wasn't a lot of help out there. Mount Sinai's Center for Post-COVID Care in New York City is one of only dozens of these kinds of institutions. Many of the patients there are relatively young. They've been healthy before contracting COVID, and they ended up with mild cases. Most were never hospitalized. Dr. Zijian Chen is the center's director.
ZIJIAN CHEN: Sometimes what happens when we're looking for patients is, we want to hear a sensational story that will wow and turn heads. And it's not that they can no longer breathe or they're in a coma or they had a stroke, but it's more the type of patient that will tell us, I used to be active. I have a job. I took care of my kids - you know, any of these normal, kind of mundane, day-to-day things. And then they report that now, after having COVID and after so many months, I still can't do what I used to do. I still can't run that mile or can't finish projects, or I can't keep up with my kids. And in the end, they seem mundane. But if you're looking at hundreds of thousands of people who no longer can do what they did before COVID, that's very traumatic.
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MARTIN: It took six months for Jeanine to get an appointment at the center. But in that time, doctors were collecting more data. They were learning more about Long-COVID, which ended up working to their advantage.
MASON: They were able to look at Jeanine and say, OK, first, you're not the worst case we've seen. 2, everyone that we've seen has gotten better.
MARTIN: But the getting better can be a long process.
CHEN: We're making incremental steps. We're not making leaps and bounds in change. I wish I can tell everyone that, you know, in two months, we're going to find the magic pill or wand or solution or drink, whatever, what have you, and we'll take care of everybody and make everybody back to normal. And every day I wish I had something like that. But we don't.
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MARTIN: Jeanine is getting better. Her doctors have figured out the right balance of medications, nutrition and physical therapy, and she and her caregivers have to take the wins where they see them. Here's nurse practitioner Carrie Wynn again.
WYNN: The rewards of seeing a patient being able to gradually improve, even if it's just a little bit, or be able to reassure them and calm their anxiety and speak truth to them about - you know, that this is one hour at a time sometimes, a day at a time. But you know, I'm here with you in it. I'm your partner in this journey. That I'm not abandoning you, even if I can't fix it for you right now, sometimes is enough to get a patient through to the next day.
HAYS: I don't know if this might be my life - the fact that we have EpiPens in every room in our house - we have, even, one in our car - the fact that just the other week, we went down to the Brooklyn Museum. This was our first time going out on an outing for fun. But we packed an extra pair of clothes for me because we were like, you know what? What if I have an outbreak? What if the clothes I'm wearing start to get itchy or something happens? And knowing that that's OK, and it's going to be a long healing process, and we're all learning about this together.
MASON: I think the advice that's in there for people who are caretaking is, there's a lot of things that you're going to have to do. There are a lot of adjustments that have to be made. But the person that you're adjusting for is worth it.
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MARTIN: Bryan Mason and his wife, Jeanine Hays, of Napanoch N.Y., talking about managing COVID over the long haul.
(SOUNDBITE OF B. FLEISCHMANN'S "COMPOSURE") Transcript provided by NPR, Copyright NPR.