From ‘normal’ to nightmare
‘I had never had any issue like this before’: 28-year-old COVID-19 patient has suffered rashes, fatigue and blood clots — and is still recovering
Nearly eight months after COVID-19 burst into the world’s consciousness, much about the disease remains a mystery. Among the biggest questions: What long-term effects will it have on survivors?
The question is particularly significant for younger people, who are more likely to survive a serious case than people over 60, will likely spend more years with the aftereffects and have increasingly become the people most likely to be infected in the Houston area. In Harris County, the age group with the most confirmed cases is 20 to 29; the next largest is 30 to 39.
To understand what survivors may be facing, we talk this week with COVID survivor Katie Haynes. Haynes, 28, experienced her first symptoms in early March — significantly before most Americans believed the virus would affect their lives.
Haynes grew up in Cypress, north of Houston; got her law degree at South Texas School of Law; and a yearand-a-half ago moved to Oklahoma City, where she works for Oklahoma City University School of Law.
Q: Tell me about your old life. What were you doing in February?
A: I work at a law school, primarily with first-year students in the fall and spring semesters. I was really busy helping them with midterms. I was looking forward to spring break. My birthday was in February — I turned 28 — and I went on a girls’ weekend trip and had a blast.
I felt pretty normal. I was training for a 5K at the end of March, planning maybe not to (run) the full thing. My goal was at least a nice jog. I was playing with my dog.
Just normal life.
Q: Then what happened? By March you’d heard of the coronavirus?
A: Yes. Being in higher ed, we were aware of the shutdowns that were happening in China — we have international students from China — but it seemed really far away.
As February wound down and we got into March, I had a work trip, a conference in Lubbock. I remember that being the first time and it kind of seemed like, “Oh, maybe I should pay attention to this. I’m gonna be in some airports. What do I need to do differently?”
My mom, bless her heart, she’s always super prepared, and she was telling me constantly to wash my hands and use GermX. She wanted me to wear a mask at all the airports. That seemed ridiculous, and I was not going to embarrass myself.
I went on that work trip the first weekend of March, and by March 16, I started having weird symptoms. It felt like the stomach flu.
Q: When did you go to the hospital? What happened there?
A: I went to the hospital on April 7, almost exactly three weeks after my initial symptoms. By that point I was completely against going to the hospital. My family doctor — Dr. Amit Parikh, an amazing doctor — kind of tricked me into going. He’s based in Cypress; I was talking with him remotely.
Dr. Parikh said I was going to the hospital just to get some imaging done. I thought it was going to be a really brief visit. But I ended up getting admitted for a pulmonary embolism in my lungs.
Q: That’s a blood clot in your lungs?
A: Yes. It’s totally unheard of for a 28-year-old. I remember the ER doctor just being shocked and asking to run another image. So we did both a CT and an X-ray to confirm.
And it was right there: a blood clot in my lungs. I had never had any issue like this before.
Q: Was that when you found out that you had COVID-19?
A: Well, that was interesting. I’d had a free test at the clinic at the school where I work. I found out later on that the testing that they did there early was done incorrectly. They didn’t swab the nose correctly.
By the time I got to the hospital, it had been three weeks since my first symptoms, so the swab test wouldn’t work; even if I’d had COVID, it would show a negative result.
So I was put into the COVID unit. And when I was admitted to the
hospital, the doctors called my symptoms “COVID-adjacent,” which was described to me as either a mutated version of COVID or someone who is so far past the date of their first symptoms that COVID might not show up on the tests that they had.
Q: What was it like, being in the hospital?
It was terrifying. Prior to getting admitted, I was really out of it, really spacey. In my everyday life, I am an assistant director of my program. I’m an attorney. I’m very grounded and focused. But I was unable to recall the day of the week. I was having to leave myself notes everywhere to remember things like whether I’d talked to a certain person that day, or whether I’d fed my dog. That was something I had to tell myself every single day, and I love my dog!
The nurses at the ER, I remember them just being so kind and trying to explain everything to me because my brain was just not not processing information. I couldn’t remember from one second to the next. They told me, at least three or four times, the same information: This is what’s happening, this is what’s going on.
They took me to the COVID Covid unit at Oklahoma City. They had us all grouped in kind of one wing of a hospital. It had a pressurized door. Only certain people could come in. It was terrifying because everyone was in PPE.
Q: Then what happened? You recovered at your house for a while?
A: I wish I could say that I recovered.
I stayed unstable for the next
couple of weeks, and ended up going back to the ER on April 24. That time, my heart rate was extremely elevated. I was coming in and out of consciousness and could barely form a sentence.
It was kind of the same as before. There wasn’t anything they could do to treat the symptoms. There was just nothing they could do to provide relief, so I got sent home that same day.
They told me to drink more fluids, so ever since I’ve been drinking Gatorade like it’s my job. That was late April. The whole time since then I’ve been working with a bunch of different specialists to — not to mask the symptoms, that’s what we really don’t want to do — but actually to solve them. It’s been a struggle.
Q: So what are your symptoms all these months later? How are you feeling?
A: So the biggest symptom I’m currently having is related to the blood clot. In the hospital I received these Lovenox shots, shot straight into my stomach twice a day. In the hospital, a wonderful nurse gave them to me. She’d been trained to give them.
But once I left, for two months I gave myself Lovenox shots twice a day, straight into my stomach, and I had awful bruising. Hematomas! Awful.
I’m on pills now, luckily. They had to increase my dose.
Q: That’s to thin your blood?
A: Yes, because it’s so thick still. It’s for no reason other than COVID. I have nothing else: no underlying symptoms, nothing.
Originally I was supposed to be on blood thinners for three months. Then it was six months. Then it was the end of the year. I just got told last week it’ll be at least another year, if not potentially for the rest of my life that I will be on those to prevent me from having another blood clot go to my lungs.
Q: How are you feeling now?
A: I have good days and bad days. Today I feel all right, but on Monday it was really difficult for me. I had the exact same COVID symptoms again. I was really not totally lucid the whole day. I was really tired. I was coughing a lot.
I had gotten back to being able to walk almost a mile with my dog, but all this week I haven’t been able to walk at all.
I’m still constantly worried about blood clots. I have to make sure to move a lot. I wear compression socks to make sure that those symptoms don’t come back up.
I’m also sleeping a ton. Thankfully, my work allows me to have a flexible schedule as long as I’m getting everything done. I sleep a ton each night, and still sometimes I need a nap. As a 28-year-old adult, I have to take a nap.
Q: Do your doctors have any idea how long this all could last?
A: It seems like we were really, really optimistic in March and April. I kept hearing, “Oh, by July! You’ll be fine by this summer. This will be like a distant memory.”
Now I’m hearing that there’ll be at least a year of this kind of stable regimen that I’m on right now. And with the blood thinners, I might be on them for the rest of my life, which is a really scary thought at my age.
Q: You were one of the first people in the United States to get COVID-19, right? So how do you find out what to expect? Are there other COVID survivors you talk with?
A: Yeah. I’m part of one of the #LongHaulers Facebook groups. It’s for people who have had COVID longer than 80 days. I think there are about 5,000 members now, all over the world.
It’s a great community. I remember going on there and feeling like, “I’m not crazy! This isn’t all in my head.” The symptoms for COVID vary so much that it’s difficult to know. For example, here’s something that’s happened recently. I’m on Week 18, and this week, I have these weird rashes. They’ll just pop up
anywhere. I’m thinking to myself, “Am I paranoid? Do I have this rash? Is this an allergy? What is it?”
On that Facebook group, I find out that people from Weeks 16 to 19, we all have this rash. And this is just a new thing that seems to be happening within that cluster of people.
I’ve gotten to know people who are also in the Week 18-ish track. We talk about our symptoms and compare medications. Also it’s been helpful for testing. You can ask your doctor for certain things: “I’ve heard this works. Are you willing to try it?”
My doctors have been great about trying things like that.
Q: We’re used to thinking of COVID as a disease that’s most serious for older people, so it surprises me that you personally know someone else your age who had a serious early case. Are there other young people in the #LongHaulers group?
A: It’s pretty mixed, which I think is helpful. One person was talking about their 6-month-old, who has had coronavirus. And it goes all the way up to elderly people who have the virus. I would say that most of the people who are fairly active are probably late 20s to early 40s. It might be that in our millennial age range, people are more comfortable with social media.
Q: So how are you feeling now? Can you go out and walk your dog?
A: I cannot walk my dog. I try really hard to stay at home. I’m still getting my groceries delivered. I can’t do too many meetings, even an online meeting like this; I have a very strict number of meetings that I can have with my students every day, or workshops that I can lead, because otherwise I know that I just won’t have the energy to to do them to the best of my ability.
It’s impacted my life in a lot of ways, even things like cooking dinner. I cooked on Tuesday — I just made some chili — and I was exhausted for the rest of the day.
So I’m not able to do a lot. But I am able to do so much more than I had been able to do, which is a blessing.
This interview has been edited for length and clarity.