A year ago, Darcy Havel-Sturdevant couldn’t have imagined what was in store for her. The headaches, exhaustion, shortness of breath. She often is unable to focus. She has memory lapses.
She already had dealt with a severe case of pneumonia in late 2019. Then, in April 2020, this unit clerk at University of Iowa Hospitals and Clinics was diagnosed with COVID-19.
* * *
IowaWatch: What’s a typical day like for you?
Havel-Sturdevant : Waking up, trying to get my daughter breakfast, get the dogs fed, get them taken. Start trying to maneuver throughout my day, meaning, either almost fall asleep or try to remember what’s going on around me. My husband steps and watches my daughter for a few hours.
* * *
Darcy, her husband, Gabe, and 4-year-old daughter, Rayne, live in Iowa City. She turned 34 in February 2021. She warns that her daughter might interject into the conversation, and Rayne delivers at times. We’ll call that reality.
The thing is, even though Darcy Havel-Sturdevant was diagnosed with COVID-19 in April 2020, she still was dealing with the after-effects coming into spring 2021. She is what’s called a ”long hauler.”
Generally, about one of every 10 COVID-19 survivors is a long hauler, British researchers reported in August 2020 after a study there that was reported first by BMJ Publishing Group Limited. Fatigue is their most common long-term misery, the study found.
* * *
IowaWatch: First of all, how are you feeling these days?
Darcy Havel-Sturdevant: Not very good. I’m nowhere near my baseline that I was prior to COVID. I was diagnosed with partial seizures and chronic migraines after COVID, along with post viral fatigue syndrome and MECFS (myalgic encephalomyelitis/chronic fatigue syndrome). So, I am fatigued most days. Random fatigue that comes on abruptly out of nowhere. I can just be sitting here with my daughter, playing a video game or reading a book, or just plainly sitting, and I can just have this intense fatigue come over me. And it’s almost like post-concussive fatigue in the way of – and I’m sure people that have had concussions before can relate – that it’s like this warm feeling that kind of comes over your, your brain, and it just kind of falls over your eyes. And, you go into this almost instantaneous dark, dark, instantaneous deep sleep. And, it’s almost like skipping to REM all of a sudden and you can’t keep your eyes open. And, if you try and fight it, you get these terrible, terrible migraines. And it’s just really strange, it’s a very, very strange feeling.
IowaWatch: How long has this been going on?
Havel-Sturdevant: Since March.
IowaWatch: March of 2020, and we’re speaking in February of 2021. And so, that would be when you were diagnosed with COVID?
Havel-Sturdevant: I was diagnosed with COVID on April 25th. I started becoming symptomatic in early March: high, like, really increased blood pressure, increased heart rates, cough is weird, sternum tickle in my chest and fatigue. All of this kind of came into play in early March, along with an increased temperature. But as the time, as long as it was under 100.4, it wasn’t considered a fever. And so, I was continuing to go to work and, you know, go about my daily life. But, I was having these episodes and there really wasn’t any sense of it. The prior November 2019, I had a case of serious, severe pneumonia. And it just came out of, roughly, out of nowhere.
IowaWatch: I’ve got a question about that point in time. Were you afraid of deteriorating, including to death? Or were you thinking, now we know what it is, perhaps we can clear this up and when this is finally done I’ll be glad when I’m feeling better?
Havel-Sturdevant: I was scared to death, about death at that point. I mean, after November 2019, I kept having this thought like, why did I survive that severe pneumonia to have to deal with COVID and have to wonder if, if I’m going to survive COVID? You know, it felt it felt and it still feels like I’m biding time, truly, because right now. I forget what I’m doing after 30 seconds to a minute. I can walk in a doorway and forget what is going on in my mind, what I intended on doing. It really is no life to live.
I don’t think I have so much fear about not being able to breathe one morning because I realized that there’s nothing going on in my chest right now that’s preventing me from breathing. It’s something, cognitive, that is impacting that. And, I mean, I had so many tests run on me that I feel confident that I’m not going to not wake up tomorrow. But whether I’m going to cognitively declined to a point that I don’t know what is going on around me? That’s the biggest fear I have right now.
IowaWatch: If someone would have told you then that in February 2021, you still would have misery because of this, how do you think you would have handled that mentally?
Havel-Sturdevant: I would be grateful to at least be here and be with my daughter…
* * *
Darcy Havel-Sturdevant says she’s worked since she was 18 and that not being able to do so now is detrimental socially and, of course, financially. She’s had injections costing one-thousand dollars and more to curb migraines. Another medicine costs four- to five-hundred dollars a month, she says. Insurance doesn’t cover all of the costs.
Meanwhile, she cannot drive and writing and reading is a difficult chore. She’s been public with all of this.
* * *
Havel-Sturdevant: It takes a big toll on you. I worked since I was 18. Prior to the university I worked at ACT Inc. as a, starting as a clerical position and working up to a specialist 2. And so I was there for about nine years with customer service and data entry. and then switching over to the university and working there for several, several years. And, not being able to work is very detrimental financially and emotionally because the social interaction that you get with other co-workers and feeling like you can be sufficient to bring in money, and not be dependent on others, I’ve always been like that my entire life. I don’t like depending on other people. I like being able to do things for myself. And, more and more it feels like I’m losing that ability.
I started having blank stares and finding that I was having trouble moderating my speed when driving. And, I talked to my neurologist about that and she had said, you know, don’t drive until the blank stares are better. And that was after the EEG that was done. That’s how we kind of came to the determination that there were partial seizures going on. …
… I mean, I’m even struggling at home to multitask, whether I’m trying to make a meal and my daughter’s talking to me and the dogs are barking. I can’t talk to her because if I try to talk while I’m doing that. I just lose all of it, and my, my brain will shut down and I’ll forget what I’m doing.
And, I mean, my husband bought me a journal back in June when the cognitive stuff started coming into play so that I write down what time I woke up and my time my daughter woke up, what time she had breakfast and what time the dogs eat breakfast and when they were taken out. And, just to keep track of my day. Because otherwise, before that, I was finding that she wouldn’t eat like for lunch. You know, we had a set time that we need between like 11:30 and 12:15. It’d be like 1 or 1:30, and I’d start getting around to feeding the dogs and her and I just I couldn’t pace myself. And so, he got me this journal, and it helps because I keep my calendar appointments in there, all the doctor appointments I have. And then, there is another subgroup, that was just like, each line per day, and I go back through my journal and circle things and highlight things and go over and write all the symptoms I was having for that day. And, it was more so for myself but it was also for my doctors, so that I can kind of write out like this is what’s going on this is new, this is getting better, if anything.
And, that’s kind of what helped me get through for several months. And, now I can’t even write and read because I’ll get so fatigued I’ll get headaches. It’s awful.
IowaWatch: Now, you’ve been interviewed by other news media. And, I’m wondering if you get any kind of response from the public when you’re sharing your story.
Havel-Sturdevant: I really haven’t. Some friends and family posted it on Facebook and liked it. think a neighbor had contacted my mom the other day to say, like, she was so sorry to read about what I was going through and if we needed anything to let her know. But other than that, there really hasn’t been any other outreach.
IowaWatch: Why do you think it’s important to tell your story?
Havel-Sturdevant: I think it’s important for people to know the severity of what can happen, if they don’t take COVID seriously, to themselves, their friends, their family or children. I never asked for this life. I really didn’t go out and party. I didn’t go to social gatherings. I did curbside pickup when this all started coming into play. We kept to ourselves and the only place I went to was my job. And, you read about people going out and acting like there’s no pandemic going on and it’s very infuriating because, like I said, I didn’t ask for any of this. …
IowaWatch: Do you have a notion of what the future is and where your plans fit in it?
Havel-Sturdevant: I pray to God that I get better. My neurologist has been excellent and she keeps telling me that I will get better, which is great to hear because so many times you see a doctor and they try to help you when they can. And, you know, they really, they want to do their part to help you, which is excellent. I have no complaints about my other doctors. But, my neurologist, you know, every time I see her she’s always like, “we’re going to make you better, we’re going to do this together, you’re going to get better. …
… But, she’s been fantastic and it’s so, it’s so great to hear that from someone that you’re going to get better we’re going to do this together. And, so I do feel like I can get better. It’s just baby steps.
The anti-seizure medication that I’m taking has made me feel a little better. I’m still forgetting stuff after 30 seconds, and I’m still in a blur each day, but my head doesn’t feel like I have to terrible pressure from taking it. And, that’s more than I can ask for. So, I’m really hoping that, as time goes on, that my brain will repair itself. It has to.
MORE IN THIS SERIES
THE FRONT-LINE NURSE: BEING WITH PATIENTS IN THEIR LAST BREATH
THE DOCTOR: LONG-TERM AFFECTS AND BEING A BRIDGE BETWEEN PATIENTS AND FAMILIES
THE NURSE/FAMILY MOM: WORRYING ABOUT BRINGING THE VIRUS HOME
THE RESEARCHER-TURNED-PATIENT/CAREGIVER: MAKING DECISIONS ON WHOM TO HELP