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A Parent, A Nurse, And A Patient Talk About Dealing With Coronavirus

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Illustration by David S. Goodsell, RCSB Protein Data Bank; doi- 10.2210:rcsb_pdb:goodsell-gallery-019
Illustration by David S. Goodsell, RCSB Protein Data Bank; doi- 10.2210:rcsb_pdb:goodsell-gallery-019

TL;DL (Too Long; Didn’t Listen)

Another look at the far-reaching impact of the coronavirus pandemic. In this episode, we hear from a parent who recently had an infant in the NICU, a nurse who fears for his safety, and someone who recently recovered from COVID-19.
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We want to hear from you! Tell us about your experience dealing with the pandemic: How are you coping? What challenges do you face? What are your moments of joy? What advice do you have for others? There are a few ways to reach us:

Full Transcript:

This content was originally created for audio. The transcript has been edited from our original script for clarity. Heads up that some elements (i.e. music, sound effects, tone) are harder to translate to text.
Amory Sivertson: Ben.

Ben Brock Johnson: Amory.

Amory: It’s Week 4 of quarantine.

Ben: Ehhh but I mean who’s counting?

Amory: I am it’s Week 4! How ya doing?

Ben: I’ve moved from bread-making to tortilla-making. And tortilla making is good! I’m putting all the things in tortillas now. How about you?

Amory: So I tweeted a few weeks ago that some little girl wrote in another little girl's driveway on my street. It said, "Hi Sadie, I hope we can play together again soon. From, Emma." And then this week I saw who I believe to be Sadie and Emma going on a walk together across the street from each other. And they were so happy. So that's hopeful, right?

Ben: I think you're hallucinating.

Amory: No no no. It was very comforting to see, and it’s also been comforting to hear from some of you. You’ve offered reminders about the different ways the pandemic is changing all of our lives. Starting, perhaps most importantly, with family life.

Tyler: Hi, my name is Tyler. My Reddit username is "stonecipher" and I'm located in Colorado. I have a two-month-old daughter in the NICU at a hospital that's about 45 minutes away from where my wife and I live. And we are having to venture out of the house to go see her, care for her, and get her breast milk that my wife is producing at home. We're spending a lot of time going back and forth. There's a lot going on there.

Ben: So we originally heard from Tyler in mid-March, which was only a couple of years ago now... OK just kidding it was only a couple weeks ago, but it feels like much longer. So we checked in with him again.

Amory: He told us, “A lot has changed in the time since I left you guys the voice memo. My daughter’s home now, but my wife and I are essentially her full-time nurses, feeding her through a tube, and closely monitoring her vitals.” Tyler won’t know the long-term severity of any of his daughter’s issues until he and his wife are able to meet in-person with specialists.

Tyler: We've not ruled out some scary stuff like cerebral palsy, delayed motor milestones, like the ability to walk, etc, ability to chew and eat or potential full motor disabilities. On the other hand, it might end up all being fine. 

Amory: So for now, Tyler and his wife are just taking things one day… or one HOUR… at a time.

Tyler: I have a mild meltdown about every 72 hours or so, which is an improvement over the 36 to 48 hour meltdown cycle I was on while Adeline was in the hospital.

Amory: Baby steps. Tyler says just staying home has reduced their anxiety levels, and they’re settling into their new routine as a family.

(music plays)

Ben: Tyler is figuring out how to become a nurse for his daughter. Meanwhile, actual nurses are figuring out how to do their jobs despite dangerous circumstances. We came across a comment made a few weeks ago by the Redditor “BigODetroit.”

Matt: I am a nurse at a level one trauma center hospital in Detroit. I swear COVID has been around for weeks. There are several members of my surgical team that have been hit hard with respiratory and fevers. Once our first confirmed case is in-house, all elective non-emergent surgeries are canceled. We can expect to have our first case by tonight.

Amory: In real life, BigODetroit is Matt. He works in an operating room on an open-heart surgery team. And by the time we spoke to him, his hospital had gotten its first confirmed case of COVID-19. And its second. And third.

Ben: Matt doesn’t know what the count is up to now, but they’ve been hit hard enough that they were trying to open another hospital just for people who’ve tested positive for COVID-19.

Matt: But the hospital that's doing that testing is so full right now and they just keep getting newer cases that they really aren't able to transport them quickly enough.

Amory: Have there been any deaths at at either of these hospitals from COVID-19?

Matt: Yes.

Amory: Do you know if the patients were older or had preexisting conditions?

Matt: The rumor that's been going around the hospital is that it was a 22-year-old kid that came in with flu-like symptoms. And they dismissed it as the flu. And by the time he came back in after getting worse, they weren't really able to do anything. They were going to put him on what's called ECMO, which is a system that helps to rest your lungs. He ended up passing away and it wasn't until a little bit later that people were kind of like, "Maybe he did have this and we just didn't even know it?"

(music plays)

Ben: So clearly, this particular patient wasn’t tested for COVID-19. And, Matt says, there are patients now that should be getting tested but can’t.

Matt: We just don't have enough tests for everybody that thinks that they have something. And if their symptoms aren't very serious, I believe they are being told to self-quarantine until either symptoms get worse or they get over it.

Amory: And what about other supplies like masks and gloves and other protective equipment? How are your hospitals doing?

Matt: So in the operating room, our standard of practice is every time you enter one of the operating rooms you need a fresh mask. Every time you leave the operating room, you take that mask off, you throw it away, you wash your hands. And then if you go back in, the process continues. Right now, at this point, we are issued one mask for the entire day. If it does gets soiled, you can replace it. But everything else, that mask is yours and you have to make it last for the day.

Ben: So it's basically like extreme rationing of masks.

Matt: Correct.

Amory: Another resource Matt’s hospital is running low on are nurses trained to work the regular floors of the hospital. As we mentioned, Matt’s an operating room nurse, which means he’s responsible for very different tasks than a nurse that does rounds and “med passes,” administering medications to patients.

Matt: I'm being told that they're taking operating room nurses, some of whom haven't been on a floor for years, or ever, and they're putting them on regular floors to take care handfuls of patients and do med passes, which I mean, can be extremely dangerous and mistakes can be made. The sweet thing about being in an operating room is you do have a set shift. Mine is from 6AM to 4:30PM and I work four 10-hour days a week. But they're telling these people, "Well, your new shift is now 7:00PM to 7:00AM," so people are automatically being placed on night shifts or the long twelve-hour day shifts. If you want to work this is what you're going to have to do.

Ben: It sounds like that's frustrating for you. 

Matt: It is. How do I say this and not make me sound super insensitive about it... I just won't be safe on the floor because I, personally, haven't worked a floor in six years. And so you lose that skill set. I just don't think it would be safe to expect me to pick that up again in a night or two. And that is very frustrating and that's very angering. I just wish there were somebody speaking out on our behalf on that. There isn't.

(music plays)

Ben: What's your ritual when you come home?

Matt: So what I had been doing is I was wearing street clothes in, changing into a pair of scrubs, and at the end of the day I put my clothes back on and I come home. And once this hit, my wife would make me just strip in the garage. And then I'd go straight to the shower and then disinfect the washing machine with bleach.

Amory: Matt doesn’t even bother with street clothes anymore. He goes from his commuting scrubs to his care-taking scrubs, and lets the hospital handle that laundry so there’s no chance of bringing the virus home. It’s one less thing to worry about at a time when he can’t stop worrying.

Matt: You can't help but be afraid of the unknown here. It's really kind of doom and gloom around a department when it's not whether or not I will get infected with this. It's a matter of when, not if. And so , you know, you're just waiting for that axe to fall. And, you know, I'm coming home to young kids and a wife. And I worry about, can I get anybody else around me sick? Even just doing basic things that I've taken for granted, like grocery shopping, has been a huge challenge. You know, just because you're getting off the shift and you want to go to the grocery store and pick something up for dinner and you can't because the shelves are just absolutely bare.

Ben: It's interesting because the the grocery store run is the most dangerous thing that I would do, or one of them, because I'm working from home at this point all the time. But for you, the day job is the most dangerous part of your life. And so going to the grocery store after your day job is almost like no big deal except for the fact that there's nothing on the shelves.

Matt: Right. And I still have to be careful when going there, too. I mean, the greatest irony of it all would be just being very careful at work and then I get infected because I went to Kroger.

Amory: What are you doing to take care of yourself? Do you have any new rituals?

Matt: It sounds super nerdy but I've got a train set in the basement.

Amory: That's great. I love the mental image of you working a 10-hour shift at the hospital and then coming home. And once you're all showered and changed, playin’ with your train set.

Matt: Yeah. I mean, I'm 37-years-old and I'm downstairs with a Lionel train set. It's the only world I have control over.

Matt, known as u/BigODetroit on Reddit, with his Lionel train set. (Courtesy u/BigODetroit)
Matt, known as u/BigODetroit on Reddit, with his Lionel train set. (Courtesy u/BigODetroit)

Amory: Well, Matt, thank you so much for the work that you're doing and for making time to talk to us on your day off. We really, really appreciate it.

Matt: Thank you. It's been a pleasure. 

(music plays)

Ben: More, in a minute.

[Sponsor Break]

Ben: We all have different skill sets to offer during this trying time. Take Jason Kirin from Pittsburgh...

Jason Kirin: I'm primarily a juggler, but have you ever seen the movie Labyrinth with David Bowie?

Amory: Of course. Are you going to tell me that you do Michael Moschen things?

Jason: Oh, my God, listen…

Amory: Ben, do you know what Jason’s talking about here? Michael Moschen’s literal handiwork in the Labyrinth?

Ben: I mean, yes I know the Labyrinth and yes I’ve been to enough music festivals to understand what is happening, yes.

Amory: Ok so this the part where David Bowie’s doing single-handed, gravity-defying tricks with a crystal ball.

Ben: Yes, David Bowie, the most interesting muppet in that movie.

Amory: He’s not a muppet! He’s the goblin king!

(A clip from Labyrinth plays: “It’s a crystal. Nothing more. But if you turn it this way and look into it, it will show you your dreams.”)

Amory: So that’s Jason's specialty. He’s also the artistic director of the Pittsburgh Circus Arts Collaborative, so he’s pretty well known in the circus sphere. And when the pandemic hit, he made a video PSA about the importance of cleaning your, um, juggling equipment.

Jason (in his PSA): So it’s best to set aside at least one day during this quarantine to give your balls a nice hot bath. If you’re feeling extra cautious, you can wipe your balls down with 90% isopropyl alcohol.

Ben: But then, 4 days after Jason posted that video, he started to feel achy.

Jason: It was a heaviness to my joints. It was a heaviness to my whole body. It was a pain in the ass to carry myself around. And then I started to cough and I started to get discomfort in my throat.

Amory: Jason didn’t know it yet, but he had the coronavirus. And he turned to Reddit, specifically, the newly-formed “COVID-19positive” community, to share his experience. It's almost like a diary.

Jason:

  • Day 1: I started to get aches that I wasn't used to. Joints mostly.
  • Day 3: At 7:21 a dry cough started and continued for about 72 hours. Fever, tremors began.
  • Day 4: The absolute worst day of all of them. I would fall asleep for two hours, only to be woken up to rush to the bathroom with diarrhea. And do not confuse the word diarrhea with something you may consider familiar. This is the type of diarrhea that people in history books die from.
  • Day 5: I called my primary care provider and he scheduled us tests at noon on Thursday.
  • Day 6: My sense of smell and taste has entirely disappeared. They're just gone. I mean, gone.
  • Day 7: The test is a cotton swab up your nose where the swab goes all the way back to the inside of your head wall.
  • Day 8: My breath is labored. I can't make it up the stairs without my breath getting short.
  • Day 9: The breathlessness of steps is still happening, but I do not feel like I am near death's door anymore.
  • Day 11: Today is my birthday. And what a day. I feel like I am done with COVID-19. No fever, no cough, no breathlessness. Hilarious to have all of this clear up today.

Ben: Jason’s 38th birthday gift? His health. But he doesn’t know who unknowingly gifted him the virus in the first place.

Jason: I can pinpoint it to six possibilities.

Amory: There was the cashier at the grocery store who was licking her fingers to separate bags.

Ben: The colleague who flew in from Seattle for an event, just as the coronavirus was starting to spread there. The woman in line at the coffee shop who was coughing.

Amory: It’s impossible to say for sure, so, instead, Jason has focused his efforts on figuring out who he has come into contact with.

Jason: Every single person got a personal call or email or message in any way that I possibly could. I got a hold of everybody that I had been around for at least a month before I was diagnosed.

Ben: But what about Jason’s wife, Amanda? She got tested with Jason, and her results came back negative even though they hadn’t been isolating from each other leading up to it. That’s changed now.

Jason: You know, I get to have the attic. She's got the second floor. And we can walk around and not spend too much time in proximity to each other. We haven't slept in the same bed in... it's been about, I think, a week now and it's becoming a real drag.

Amory: Amanda has a different take.

Amanda: The sleeping arrangement I think has been maybe good for both of us because we don't really sleep well together. So it's been this kind of funny thing, like, yes, it's awful, we haven’t kissed in over a week. But I think that he's sleeping better and I'm sleeping better by ourselves. So that’s been a funny thing that we have learned.

Ben: Another lesson, how carefree normal life was.

Amanda: You don't normally think about the way your body moves throughout your own home so comfortably, you know. So I just was hyper aware of, where am I sitting? What am I touching? What am I wearing? How am I preparing this food. And there was definitely a balance between being a caretaker and a wife. And there would be times when he would just start to walk into the kitchen and I would say, "What are you doing? Please don't. Did you wash your hands? Please do not touch the refrigerator." So there was a lot of reminders.

Amory: A lot of reminders, and a lot of adjustments. Amanda says their roles at home were suddenly reversed.

Amanda: He typically cooks and he typically cleans. And I was doing it. And I don't like cooking. So I was cooking every night, you know, and cleaning the kitchen every day. But now I did it so much that it's like, that's fine, whatever.

Ben: The roles may very well get reserved back because Amanda has started to develop mild symptoms. She hasn’t gotten tested again, but she thinks it would come back positive this time. So she and Jason are continuing to quarantine, and trying to find ways to create moments of joy.

Amory: Aside from feeling better, finally, was there anything else you were able to do to celebrate your birthday?

Jason: The first thing that happened was whenever I woke up and I started to cook a little bit of breakfast and my wife comes in and she goes, "Hey." I said, "Yes." She said, "I need some help with something." I said, "What's that?" "Something on the computer." So I went over and I brought my coffee, my breakfast. I sat down and she pulls open her computer and it's Zoom. And on Zoom, I think she got twelve of my friends and all sorts of different states, all to sing me happy birthday. And I got to have breakfast with twelve of my friends over Zoom and six of them had babies on there. And it was just adorable.

(music plays)

Amory: How are YOU celebrating birthdays right now? Or just… how are you getting through REGULAR days? How is the pandemic affecting your family, your job, your perspective on things? Make a voice memo on your phone and email it to endlessthread@wbur.org, or leave us a good ol’ fashioned voicemail. Call 857-244-0338.

Ben: Thanks to producer Josh Swartz, engineer and sound designer Paul Vaitkus, executive producer Iris Adler, and the whole WBUR podcast team. High five to you guys. And thank you for washing your hands, for staying home, and for listening to Endless Thread. Stay healthy, and talk to you soon.

Headshot of Josh Crane

Josh Crane Producer, Podcasts & New Programs
Josh is a producer for podcasts and new programs at WBUR.

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