If you’ve been following the podcast at all, you’ve heard me discuss the term “Long-hauler” in reference to COVID-19 patients. This term refers to people infected with the SARS-CoV2 virus who experience symptoms months after the initial infection.
I’ve been able to read up on long-haulers through social media. I’ve followed the experiences of my cousin who shared some info on a group she’s a member of. It’s a private Facebook group that functions as a long-hauler support group, with a twist.
In addition, they compile data on the long-hauler experience. Which symptoms they experience, the presentation of symptoms, how the symptoms change, and their experiences with their healthcare professional.
Following this group and reading about their experiences is pretty shocking to me. First and foremost, I joined the group on July 8th when there was only 50,000 members. Currently, the group is 83,000 strong and growing.
The variability of symptoms is also interesting. Some people present with standard respiratory symptoms, others neurological, and many are reminiscent of chronic fatigue syndrome, or ME/CFS. It’s also striking, and likely psychological demoralizing, how it can seem that patients are turning the corner only to have a relapse of symptoms.
Today I have an interview with a long-hauler by the name of Karyn Bishof. Karyn is a 30 year old firefighter/paramedic and mother to an 11 year old son. I think it’s important to illustrate that there aren’t only 2 pathways of this illness:
- A mild illness for 2 weeks and back to business as usual
- Severe illness followed by a ventilator and death
Furthermore, a recent study found that 1 in 3 people with mild an initially mild case of COVID-19, one that doesn’t require hospitalization, become long-haulers. And 1 in 5 of people between the ages of 18-34 with mild illness become long haulers. Click here for a fluff article on that.
Another point that many should come away with is that it’s not just the obese and inactive that can be taken down hard by the COVID-19. Karyn has a degree in Exercise Science and maintained a much more active lifestyle than most before COVID-19. And now, her life has turned upside down in a matter of months.
In part 1, we’ll cover Karyn’s personal experience as a paramedic/firefighter and single mother who became a long-hauler. In part 2 we’ll discuss the group she’s a member of and what they are seeing with long haulers.
Without further ado, here’s my interview with long hauler Karyn Bishof.
Karyn Bishof-COVID-19 Long Hauler
1)Hey Karyn, let’s talk about life before March 15, the first day you had symptoms of COVID-19. What was your life like prior to that?
Before March 15th I was working out at Orange Theory 5-6 days a week, was a firefighter/paramedic, played soccer and was able to do many activities with my son, 11.
My first symptom was a sore throat on March 15th. I didn’t really think much of it, but COVID-19 was on my mind given someone around me was sick and covid was circulating in the news. Note: Karyn tested positive on March 22.
Now, post COVID-19, I can’t perform any activities I used to be able to do without issue. And I’m deeply struggling with mom guilt because I feel like an absent parent and I’m a single parent.
2)I’m sure being in the healthcare field you’d heard of COVID-19, what were your thoughts on the disease back then? Do you think your impressions of it lined up with what you’ve experienced since? Did this completely blindside you?
It was something we were hearing about. But at the time, we were under the impression it was still only in China. There really wasn’t any information out about it being here, and if there was, it was the one place in Seattle.
We did know about one case semi-locally which was up in Tampa at an EMS conference. The person I got it from was at that conference. It later came out that a lot of people who were there got COVID-19.
My experience with COVID-19 definitely blind-sided me. What you heard about was a cold or flu, or ending up with pneumonia on a ventilator and likely passing away. The way I describe my experience to people is like having a bad flu with a respiratory infection with mono all wrapped up in one.
What also blindsided me was not being able to recover in the two weeks that’s constantly talked about, and also heavily misleading. I’m currently over 4 months out, day 130 to be exact. I’m only one of tens, but likely hundreds of thousands of long-hauler COVID-19 patients. We’re the ones experiencing symptoms and issues for months post initial infection.
This has changed my life forever. There is no treatment at this time. Doctors are still dismissing people because they simply don’t believe them, and that’s part of why we’re making such a huge push to get this information out there.
We want to create awareness both in the medical community and in those who don’t believe, or think it’s unnecessary to take the precautions they should, and can easily take, to protect themselves and others. Maybe if people realize that this can be months, years or lifelong they will start to care.
3)Let’s talk about your symptoms. What were your earliest symptoms and how have they changed?
My earliest symptoms were the things most hear about: sore throat, fever, headache, shortness of breath, cough, fatigue, loss of smell, nausea and vomiting and diarrhea.
I was also struggling with severe weakness and I had to cognitively fight to stay alert. It’s like I was losing consciousness and had to force myself to focus on something, tap my leg, anything I could do to stay alert. I was afraid I was going to go to sleep and not wake up.
After week 3 I was starting to feel better and was like, “Finally, I’m getting over this”. However, improvement was slow.
Around week 6, I got smacked down again. I was dealing with some of the same symptoms and then some new ones. This has been the pattern I’ve lived with up until this point. I’ll have weeks of relapse, or flare up if you will, and then a few days, maybe even a week, of decent days where I can function a bit better.
When COVID-19 first began, it was only known as a respiratory virus. However, COVID-19 is a systemic issue. It’s causing health complications and symptoms that are affecting the entire body.
In addition to lung issues, people experience cardiac issues, neurological issues, GI issues, renal and hepatic failure and so on. I’ll talk about some of mine. I want to address the vast neurological issues first, because some affect the cardiovascular system and respiratory system.
Currently, Mount Sinai, who is leading the way in post COVID-19 care, has said their leading theory for long-haulers is that we have dysautonomia. Basically, that’s an attack on the brain and autonomic nervous system. So everything that typically automatically regulates in you is now out of wack. Things like blood pressure, heart rate, breathing, etc. Note: We covered how time-restricted feeding, and circadian rhythms, regulate the autonomic nervous system in a blog you can find here.
My heart rate can go from 50-160 sitting on my couch without moving. Going from sitting to standing causes an immediate spike in heart rate over 30 beats which likely means a diagnosis of POTS(Postural Orthostatic Tachycardia Syndrome).
Other neurological issues include memory loss. I ‘m having to write everything down, read things multiple times, forgetting if I took my medication, losing words I’m looking for during conversations, and sometimes just walking into a room and forgetting what I was doing. There’s a constant brain fog and feeling of dissociation.
I can’t sleep, and if I do it’s not happening til 4am. So I started taking melatonin which helps me stay asleep, but doesn’t help me fall asleep. I experience nerves firing off all over my body, and tremors in my head, arms, hands and upper legs. I’m suffering from vision loss and tinnitus as are many others.
As far as cardiovascular issues, the heart rate and blood pressure ties in here in addition to heart palpitations, a bounding pulse felt throughout the entire body, and the mysterious bulging veins we’re all getting. Our veins are becoming more visible and prominent and we don’t know why.
I also experienced my entire left foot turning purple, which I fear was likely a clot. As far as respiratory issues, I have atelectasis, which is a partially collapsed lung. I have shortness of breath, my oxygen levels drop very low and I have a chronic cough.
The shortness of breath was actually not really something I dealt with in the beginning, only a little bit during coughing fits and activity. The only GI symptoms I dealt with were the diarrhea, and right now I’m bouncing back and forth between constipation and diarrhea still.
But one thing I want to highlight is weight loss and gain. In the beginning I lost 12 lbs the initial weeks of illness. I’ve now gained that back plus another 20. My eating habits haven’t changed. I’m obviously more sedentary, but there really is no explanation for that resulting in 20 additional pounds.
So many of us are fighting this bizarre bloating which literally makes us look like we’re pregnant. There’s an awful acid reflux which I’ve had here and there, and this is a new thing for many people post-COVID-19.
It’s unknown why this is happening. There are some thoughts that it may be due to slower gastric motility which can also be related to the dysautonomia. Note: We’ve discussed how POTS typically couples with gut problems, something you can check out in this blog.
I’m at about 70 symptoms all from COVID-19 at this point. Some are constant, some come and go in waves and some I have only experienced once.
Does that sound like a cold to you?
4)Absolutely not! On a scale of 0 to 10, during the worst period of symptoms, how did they rate? How does that compare to now?
I can’t really answer this in the sense of a number. I’d say that my first week was when I felt the worst and was concerned most for my life due to the weakness, unrelenting fever, and struggle to stay conscious.
Everyday now is like waking up, reaching my hand into a bowl, and pulling out a bunch of folded up papers; opening them up to find out what my symptoms of the day are going to be.
Some days are better than others. But, its a huge strain both mentally and physically to be dealing with this, never knowing what to expect, and having no treatment available and no answers as to if or when this will ever end.
Some days I’m dealing with 20 different symptoms and others I have my typical everyday grouping. It makes no sense and has no pattern.
Well, as you can see, the life of a long-hauler isn’t cupcakes and unicorns. Furthermore, even once we contain the spread of COVID-19, things won’t return to normal for likely hundreds of thousands of people. Some you may even know.
I personally know 2 people living the long-hauler experience. And suffice it to say, I’d like to avoid the long-hauler experience myself. Hopefully, researchers and doctors will get to work to end the suffering so many are currently experiencing.
In part 2 of this blog, coming out on Thursday, we’ll discuss the long-hauler group Karyn is a part of. We’ll look at the interesting things they’re doing with social media and pick apart some of the symptoms and presentation of symptoms that long-haulers are currently dealing with.