Iowan’s struggle with long COVID enters third year

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Photo courtesy of Gabe Sturdevant

Darcy Havel-Sturdevant of Iowa City has been struggling with COVID and post-COVID health issues since early 2020.

Darcy Havel-Sturdevant thought she’d be working by now, two years after being diagnosed with COVID-19. Likewise, she thought she would have been there completely for her daughter, age 3 when Havel-Sturdevant was first diagnosed but now 5.

“Throughout the last two years, she’s been really great with helping me if I need help,” Havel-Sturdevant, 35, of Iowa City said about her daughter, Rayne.

“If I get really sad or frustrated she’ll start singing ‘Rockabye Baby’ to me and ‘Twinkle, Twinkle Little Star.’ So that shows like the level of empathy and compassion that children have, you know, at that young age, especially, at least in my case, during the pandemic.”

Havel-Sturdevant said she tried to be optimistic that COVID-19 will end for her but more likely must accept what she called a new baseline for normal living.

IowaWatch has been following Havel-Sturdevant’s bout with COVID-19 this past year because of her extraordinary problems with the infection. She has long COVID, meaning health issues tied to COVID-19 linger long after the infection leaves a person. More than one-half of people surviving COVID-19 suffer effects six months after the infection, an October Penn State University College of Medicine study showed.

Havel-Sturdevant was diagnosed with COVID-19 in April 2020, after first having pneumonia. She had another COVID-19 infection in December 2021. She, and her husband, Gabe, have been vaccinated but Havel-Sturdevant continues to suffer from migraines, memory loss and other medical problems. Moreover, she is caring for her 76-year-old mother, who has cancer and is living with her family.

We caught up with Havel-Sturdevant in mid-March for an update. The report from that interview has been edited for brevity.

IowaWatch: It’s been two years since you’ve been dealing with this. What I’m wondering is: can you put into perspective just what those two years have been like, in general?

Darcy Havel-Sturdevant: It’s been hell. It’s been a lot of pain and suffering and uncertainty; not knowing if I was going to get better, get worse; if this was my new normal; what my future was going to be like; would I have a normal life when I come out of this; would I be able to be a good mom.

I mean, I’m sure there’s a lot of disabled mothers out there but, you know, when you go into something with, like, cognitive disabilities, abrupt cognitive disabilities, it’s kind of, I don’t know, it kind of wears on you over time. Because you kind of think like, am I, am I doing everything that I should be, that I can be? Because you don’t get that time back with your child.

You know, as you talk to other parents that say, ‘oh, you know, cherish these younger years.’ And then it’s like, well, you can only cherish so much because you can’t really remember a lot of it because of the memory and processing deficits that you’re left with. And focusing on health and all the doctor’s appointments. And just trying to get through day by day.

Like, I think I told you before, like even reading children’s books was really taxing and (I was) getting winded easily, and barely being able to make it through a Dr. Seuss book was hard. Or, like trying to play school and work on things with the child at home, and you know, getting distracted or losing a sense of time. Or, falling asleep from the memory or processing or the sleep disorder and all that stuff. The list goes on and on.

IowaWatch: Your daughter now is how old?

Havel-Sturdevant: She just turned 5.

IowaWatch: And so, she’s been going through this since the age of 3. Those are pretty formative years for a child. How is she doing with this?

Havel-Sturdevant: … I was symptomatic in mid-March of 2020 and then I was formally diagnosed on April 20 of 2020. And so, I was going through my quarantine over Mother’s Day, and that was pretty devastating because my daughter didn’t understand why I was wearing a mask, why I couldn’t be near her. Why couldn’t I hug her? Why couldn’t I kiss her? And so, I mean, that was really heartbreaking itself.

And then, adding in that I didn’t know if I was going to live or die because, you know, I had survived that severe pneumonia a few months earlier in November 2019. To get thrown into COVID and going through that on Mother’s Day was terrifying. But throughout the last two years, she’s been really great with helping me if I need help. If I get really sad or frustrated she’ll start singing ‘Rockabye Baby’ to me and ‘Twinkle, Twinkle Little Star. So that shows like the level of empathy and compassion that children have, you know, at that young age, especially, at least in my case, during the pandemic.

We’re kind of getting to that age where she’s wanting to be more independent and she’s being her own self and testing us. So that’s, I think, just like the normal 5-year-old thing. But, all-in-all throughout the two years, she’s been pretty good. She’s been really helpful and great.

IowaWatch: So, when we’ve talked in the past, you talked about the headaches that you suffer. Have they gone away or do you still deal with those on a daily basis?

Havel-Sturdevant: Oh, yeah. So, I still have to get monthly migraine injections. Thankfully, my husband helps me with that because I could never inject myself. Even with my tattoos I have horrible needle phobias. … And then I have to supplement with a medication called Nurtec, which is an acute medication for when headaches still break through, migraines break through.

And then, I’ve started getting these things called ice pick headaches recently, in the last few months since my second COVID infection. And, those are these stabbing pains that go through the pupil of your eye. And, it is just what they are titled. It feels like someone is taking an ice pick or a very sharp instrument and just going straight through your pupil to the back of your head. And, there are these shrill pains that last for maybe 30 seconds to a minute and then they can go away. Or, it can be consecutive, of like a few of these in a row. But because they just come on so abruptly, there’s no medication that really helps with them. At least that’s what my neurologist told me. So, you just kind of have to deal with it.

IowaWatch: You mentioned your second COVID diagnosis and that happened up right after we talked the last time. Was it as rough as the rest of what you’ve been dealing with? How did you cope with it?

Havel-Sturdevant: So, it was really weird because the first COVID infection was like GI and headaches and sore throat and shortness of breath and cough, and like all the typical symptoms. And then this last time it came on, it was, it felt like a really, really bad flu. It was like a flu on steroids. Really, really, really, really bad headaches, and nausea and vomiting and upset stomach like you would have thought it was the flu. My daughter came down with it first. We had my mother-in-law over and she’s adamant that it didn’t come from her. My daughter came down with it first and she woke up vomiting and upset stomach, like, right in my face. And then that lasted all day. And a few hours after I had been splattered to the face, I started getting sick. I did a saliva test for Test Iowa, sent it off and, my luck, it came back positive.

But anyway, the second go-around, it was more of like a really bad flu for the first week and a half and then by the second week all of the headache and stuff dissipated. The flu stuff dissipated and it all went into my lungs. And it was all shortness of breath and cough. It was just a very weird transition because it didn’t start out in the lungs.

IowaWatch: How are you doing now, compared with that?

Havel-Sturdevant: Compared to the second infection, I’m better. I suppose I’m more at my baseline. I can breathe. I still use my nebulizer and my inhaler pretty regularly and I’m still, you know, taking all of my medications, like my migraine medication and injections. And, I just came off an Alzheimer’s medication that I was on for almost a year for the cognitive memory and processing deficits. …

IowaWatch: Have you been doing some exercises as well for memory loss?

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Havel-Sturdevant: My neurologist had suggested getting cognitive rehab at the hospital, but with my mom’s cancer diagnosis and, with my luck, whenever I go out in public, I always happened to get sick. I was too fearful to go to the hospital and actually do that. So, I started trying to do workbooks at home. And I got to thinking, well, I could be doing these workbooks or maybe I should just take one or two classes at Kirkwood and just take stuff slow, do, like, an anytime, anywhere online sort of class that I can, you know, just do a, you know, an hour or so a day if even, and just try and get my brain back to like reading things and processing things. And so that’s kind of how I’ve been coping. That’s been my rehab is just kind of dabbling with that. …

IowaWatch: Are you studying anything in particular?

Havel-Sturdevant: Criminal justice.

IowaWatch: Is that a passion of yours that’s developed, or was it there before you got sick?

Havel-Sturdevant: I’ve always had an interest. … Little things always stood out to me and I was always interested in the psychology side of it. …

IowaWatch: You’ve been sick for two years. So that’s change. But I’m going to ask you a couple of questions about what, kind of, changed over the last two years in the things that you’re able to do and the things that you do, and were expecting to be able to do. And then, I’m going to ask you about the last year specifically, as well.

But over the last couple of years, how have things changed for you and the things you had hoped and expected to do during that time?

Havel-Sturdevant: Well, I hoped I’d be able to work, for one. I’ve never not worked since I was in high school. So that’s been really difficult on me, feeling like, you know, not contributing to the family as I should or could, you know. The inability to remember things and to even drive: I mean, for the longest time, I couldn’t even moderate my speed when driving.

It was really scary, because I would forget where I was going … I will get absentminded or sidetracked or forget where I’m going. And it’ll take me 10 times longer. I can still abide by, like, stoplights and awareness of people around me for the most part, but I can still forget what I’m doing …

The other day, I got brave to go out on my own. And I got a block from home and I forgot where I was going. And I had to text my mom and say, ‘Where am I going? What am I doing?’ And she said, ‘You’re going to Walmart.’ And I literally broke down crying in my car and cried the entire way there and the entire way back because it was so terrifying. That I’m what 34, 35 years old and I have to text somebody or call somebody to find out what I was supposed to be doing because my brain can’t comprehend it.

So, yeah, I mean, I’d say working is really the big thing because it’s, like, that one loss of freedom to make my own money and that sort of thing.

I had a lot of passion for, like, plants. I liked carnivorous plants. And now I have to set like five, six reminders to take care of them because I had like five or six of them. Really neat, really neat plants and now I’ve only got, like, three left because they all died because I just couldn’t take care of them.

And dancing. I miss dancing. You know, I’d get too winded and fatigued, doing anything like that. I used to dance with my daughter when she was little all the time. I miss things like that.

Taking the dogs for walks. Now when I try and walk around the block, by the time I get up the hill around my house I’m so winded I can’t really make it a second go-around. … And I think the time spent with my daughter is another thing that I’ve really missed over the last couple years because a lot of parents think, well, I wish I was a stay-at-home mom or dad and I could be with my kid all day.

And you know, when I was working, I thought I would love it if my husband worked all day and I could stay home with my daughter and, you know, make the most of every second of her childhood. And now being in this position of being disabled, you say that you want to be there in that that way but the disability takes over your life and prevents all that meaningful time that you intend on having. I’m sure for other people it might be different but it’s hard nonetheless.

IowaWatch: You’re not working now I take it.

Havel-Sturdevant: No, I don’t think I’m in a good place yet to do that.

IowaWatch: Are you on disability insurance?

Havel-Sturdevant: I’m on long-term disability. … I’m hoping for a chance for Social Security to take me seriously because I know that there’s got to be loads of other people out there that are like myself that are struggling to get by … Just the assistance to be able to get through this, get better, is all that I think any of us are really asking for.

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IowaWatch: A year ago, when I first started talking with you, you’d already had to make adjustments in your life because you’d been dealing with this illness for a year. And so, how have things changed from what you thought a year ago you were going to have to do with this illness? If anything?

Havel-Sturdevant: Truthfully, not a lot is changed in that respect. Once all the diagnoses came through, everyone kind of left it at that. It was kind of like, ‘well, you’ve got status migrainosus, we’re going to give you monthly injections and these acute meds; you’ve got neurocardiogenic syncope, dysautonomia, your cell intake; you have a sleep disorder now, so take stimulants.’ But I can’t take stimulants because my heart gets really wonky if I try and do that, and essentially causes, like, POTS-type stuff to happen like tachycardia and whatever. So, the sleep disorder is essentially untreated. So, I just drink caffeine to try and stay awake.

And for the memory and processing we did the Alzheimer medication, which was slowly helping until I got my COVID booster and then that kind of nullified everything. And it really didn’t work the same after that. And then, I had my second COVID infection and that didn’t really help it, either. And then, I was diagnosed just recently with seizure activity and put on seizure medication after the second COVID infection. So, it’s more of, we got the diagnoses, we went to the treatments and we tried to see if anything would get better.

I didn’t go into it, really, with any good or bad expectations because, like a lot of people that I’ve talked to … you really don’t want to have a bunch of expectations about what’s going to happen with your day-to -day life because you don’t know what tomorrow could bring. You could be fine one day and then you could flare up a bunch of symptoms and be floored the next day and, you know, be on the couch, barely able to move and function, and brain fog and all that fun stuff.

IowaWatch: Do you feel this is going to end?

Havel-Sturdevant: I feel like it’s going to end. Yeah, I hope. I’m going to try and be optimistic that eventually it will. But I don’t know. I’m still in the ‘undetermined,’ because I think more than it ending is accepting a new baseline and trying to make the best of that baseline. For me, at least, is how I will move forward as COVID as a whole, I don’t know about that ending.

IowaWatch: And that was going to be my last question for you because there are discussions out there that the pandemic phase of COVID might be over or drawing to a close, or that it will be ending soon. Does that have any meaning for you with what you’re dealing with?

Havel-Sturdevant: Not really, because I don’t know. I have a friend that’s on their third go-around of COVID and they’re not doing so great handling that. And, I have been seeing more reinfections among, like, some of the COVID communities lately, and in seeing Europe and other places with their with their surges, if you want to call it that.

It’s hard to tell what would happen around here because, I mean, I just don’t think we’re going to see the data. I don’t think it’s going to be as transparent since everybody wants to open up and pretend like it’s over.

I’m going to continue masking. I probably look like a psycho but I have a gas mask that I wear if I go in anywhere. And that’s not only for my own protection because I’m already trying to get better, I don’t want to suffer through another infection. You know, I’m doing what I can for myself after these last two years, but I also have to worry about my mom who’s currently going through chemotherapy, and living with her. And so, you know, I’m doing what I need to. And I’ll keep doing what I need to.

If other people want to take their chances they can. They’re more than welcome to, and they can see how that goes for them. But I don’t want to chance having more long COVID problems, if that’s even possible. I think my biggest fear is, you know, the talk about blood clots and stroke and heart problems. I mean, I’m already dealing with seizures now, seizure activity and stuff after this last infection, so it’s not worth it to me to let my guard down too early. That old saying: the proof is in the pudding. Yeah, I’m going to wait. Wait and see how everything else goes.