What it’s like to be high risk and get COVID-19: A Charlotte woman shares her journey
Writer’s note: Until recently, most people we talked to still hadn’t personally known anyone who had tested positive with COVID-19. Most of the cases discussed were people with underlying health issues or were older. When I tested positive in July, I wondered if I was some rare case or if people were simply not sharing because of the shame and stigma attached to COVID-19. I decided it was important to document my journey, as I found it very difficult to get information and clear direction on how to proceed. Connecting with others to share learnings and humanity was a silver lining to a very different summer than I had planned.
Editor’s note: This material originally posted on Instagram has been edited for grammar and clarity.
13 weeks ago
Nervous to share this but I think it’s important to be transparent to help keep others safe.
Last Thursday, I got a COVID test. I had no symptoms, but being that I’m high risk and we were going to see Josh’s parents, I wanted to be safe.
5 days later, (Tuesday) I got an email saying I was POSITIVE.
I was shocked and immediately headed home from the cabin with Rory. She and I had been in very tight quarters for 5 days.
We immediately started making calls to notify my doctor and to get the family tested.
Both kids and my parents were tested within hours. Josh was tested by the next day.
Josh and the kids have all come back NEGATIVE, which shocked us and the medical teams. We are waiting on my parents’ results, but my exposure to them was miniscule compared to the immediate family. We thought the kids must have had COVID and given it to me.
Here is the stuff that confuses us.
No medical person has spoken to me about my COVID result. My doctor sent me an email telling me to take Tylenol if I needed it and to go to the hospital if I had any trouble breathing. I could not get anyone to return calls to talk through risks with me.
I was also told via email that I was clear to leave quarantine one week after my test (yesterday) and 3 days after my last symptom.
I’m very fortunate to have friends in the medical field providing me with advice and a friend with close connections to the CDC.
I have spent hours trying to figure out how to keep others safe. I have to imagine this is part of the problem in the US.
I continue to be asymptomatic. Well, I think. My migraines really confuse things. I almost always have headaches. And after a day where I have two (like yesterday) I’m weak and tired. If I hadn’t gotten tested I would never suspect I had (or have?) COVID.
WHAT ARE WE DOING? Based on our limited medical knowledge, we are continuing to try and isolate me from the rest of the family as much as possible. I have spent more of the last few days working from our bedroom and watching lots of “Survivor.”
We are physically separating for the weekend. If everyone still feels good by the end of the weekend I will rejoin them.
HOW DID I GET IT? Your guess is as good as mine. I beat myself up over this. We have not stayed locked up in the house. I do not enter facilities until I have to. However, I believe we have been incredibly safe and conscious about all our decisions. Most of our friends think I have gone a bit overboard.
We wear face masks everywhere and have a routine of sanitizing every time we enter the car or touch anything outside our home.
I’m stumped on how I could have gotten it when protecting myself so heavily and yet the rest of the family hasn’t. I also carry a sense of shame and guilt for somehow bringing this danger into our home.
Thanks for all the well wishes. I wanted to address the most common questions I am getting.
FALSE POSITIVE? I don’t know. Three different medical sources, including a trusted individual at the CDC, told me that is highly unlikely. False negatives are common because of the time it takes the body to test positive after exposure. From what I’ve read it is 3-5 days after exposure. For positives, once the virus is detected, it is there.
HAVE I RETESTED? Neither of the major medical groups in NC would retest me. They say they “don’t retest people after they are positive.” This adds another layer of complexity for those working in person as many employers are requiring a negative test to come back to work.
After all three of the others tested negative, I went and got another test at CVS. Results are taking 6-10 days, but it is the best I could do. The tests are free and you sign up online. Don’t be turned off when it says no availability. Just keep looking. Yesterday there was nothing for 3 days, and then 5 minutes later one popped up and I was swabbing 15 minutes later.
BEST PLACE TO TEST: We tested 3 different ways. For me, all my tests were through CVS. I have tested 4x over 2 months FYI. You do it through the drive-thru. No contact. Q-tip in your nose done by you. I’m told this is just as effective testing.
For kids, we called their Novant pediatrician, and within hours they were being tested in the car by a nurse. Kids said it tickled but wasn’t bad. Results were emailed in about 36 hours.
Josh’s doctor does not test, so he had to schedule on his own. I was able to call and schedule him with an Atrium testing site. They usually have cancellations if you call frequently. We got a next day appointment. His test was the brain stick. He wasn’t happy, but we had his results called to him in under 48 hours.
HOW DO I FEEL I honestly don’t know. For the most part, good. I’m a little tired. Have a slight headache most days. I can feel that I get a little winded running up the stairs. I’m still not sure if those are COVID symptoms, my other health issues or my mind playing tricks on me.
That is why I retested and am still isolating. I’m unclear whether I should still be in quarantine.
The symptoms I have not had at all are fever, congestion, loss of taste, loss of smell and diarrhea. Basically, the big ones.
COVID updates: Symptom Tracker
Day 1: July 9 — Tested, no symptoms
Day 2: July 10 — No symptoms
Day 3: July 11 — No symptoms
Day 4: July 12 — No symptoms
Day 5: July 13 — No symptoms
Day 6: July 14 — POSITIVE result
Day 7: July 15 — Slight headache
Day 8: July 16 — Scratchy throat, tired
Day 9: July 17 — Slight headache, tired
Day 10: July 18 — Tired, dry cough, sweats
Day 11: July 19 — Headache, chest pains
* Most of my cough, out of breath and sweats are when I exert myself.
Chest pains + heart conditions + COVID resulted in a trip to the ER
All tests were good.
They wanted to check two main things:
1.) That my lungs weren’t damaged. They did this through checking my oxygen levels (100%), chest X-ray and listening to my breathing. All three were great.
2.) Make sure that the pressure/pain in my chest is not coming from my heart straining. We did this through an EKG and blood work. Despite my heart having several structural abnormalities, it is very strong. My strain score was so low, they decided it was safer to release me with instructions of what to watch for.
To answer the question that I’m sure I will get. No, I wouldn’t have gone in if I didn’t have a heart condition. Being that no doctor or nurse had looked at me over the past 2 weeks, we thought it was necessary.
CHEST PAINS: Last night before bed, I started feeling discomfort on the left side of my chest. When I put pressure on it, some pain was relieved. I tried to sleep on that side. I woke up this morning still uncomfortable. Over the next hour, the level increased some. Not a sharp pain or squeezing but rather a constant throbbing. The pain started to radiate into my shoulder, and that’s when we decided to get me in for an EKG. Due to my migraines I also have an increased stroke risk, so I don’t play around.
After all the tests, the doctor concluded the pain is typical COVID pain. What they want me to watch for is feeling like there is an elephant sitting on my chest, strong pain radiating all the way to my fingertips or pain starting to spread down the other side. My pain is not impeding my breathing at all right now.
THE COVID APP: The craziest thing? My ER doctor was fantastic. She was competent and put me at ease. She also was direct with what I needed to do. She then told me there is a service for all Atrium (our healthcare provider) COVID patients where a nurse will call me 2x a day to review my symptoms and answer questions. There is also an app where it texts me so I can go track my vitals and symptoms and get help. Why did no one tell me about this the other 5 times I called?
I’m now enrolled.
DAY 12 COVID UPDATE: Last night was the roughest because of chest pain and cough. I woke up with a lot of wet buildup in my chest and had to cough it out. Sleeping propped up helped a lot. I slept until 11 a.m., which I really needed. I was also woken up with a migraine, so I was incredibly nauseous this morning. I’m still taking my migraine meds when I get them, and that is helping with headaches.
Once I was up, I felt a lot better. My chest still hurts but not as much as yesterday. The biggest change today is now I have a more frequent dry cough. I have a lot more energy than previous days, though. I took another short walk to keep my circulation up and get some fresh air.
VIRTUAL HOSPITAL: I received a call his afternoon from a nurse with the Atrium Virtual Hospital that I was enrolled into yesterday. She was lovely and spent 15 minutes on the phone with me. She explained that the chest pain was due to the inflammation and was normal. So was the cough. She suggested I take Motrin or Ibuprofen to help with the inflammation.
She and I also talked about shows on Hulu and Netflix to binge. That human side of connection was much appreciated and something I think is often overlooked.
She assured me that increased migraine activity was common with COVID.
NEXT STEPS CONFUSION: Part of what is frustrating is all the conflicting information. Before I was released from the ER yesterday, they advised me to stay away from my family for 7 days after the last symptom. I asked which symptom, and they said chest pain.
On my virtual hospital call today, the nurse told me something different. She said that 14 days after my positive (this coming Thursday), the family could come back safely and I didn’t need to isolate. I should still stay 6 feet away or wear a mask as long as I’m coughing. She also said that the chest pain and cough could last well after I’m contagious and should not be considered the symptom I’m benchmarking against.
So I still have no idea.
Oh, and since I’ve now had COVID more than 10 days, they are “discharging” me from the virtual hospital, even though I was just enrolled yesterday.
Also, so many of you have reached out and shared about friends, colleagues, family members having COVID. Many are not doing well. My thoughts go out to all of them. Thank you for sharing with me.
My purpose in documenting my COVID journey isn’t to get your sympathy. It’s to hopefully provide a firsthand account that can help others.
I feel blessed and relatively well. As someone who is high risk, I was scared I would die if I got it. The emotional part of this has been much harder than the physical. Honestly, my migraines are worse than how the COVID has affected me these past few days. I have bad migraines. but to give you perspective, everyone experiences this differently.
NIGHT VS. DAY: I’ve heard from many people that night is harder for them. That makes sense to me. When I have a cold, it’s like that, too. One friend said she heard it described as “the beast coming out at night.”
For during the day, I was told to take a deep breath every hour and then to cough. This will force anything to move around and break up. Once I was up and moving, I stopped coughing.
DAY 13 COVID UPDATE: Good news! I woke up today feeling better than I have in several days. I had zero wet cough (or any cough) during the night. My chest still hurts, but it is slighter. My head was throbbing pretty badly overnight, but my migraine meds knocked it out. I have a slight runny nose. Overall, I feel like I have a lot more energy.
This feels like I’m over the hump.
COVID TEST 2: You guys, I can’t make this stuff up. I just got my results from the follow-up test I took on Friday. It was negative. Just when I don’t think things can get more bizarre. So this is the summary:
7/9: First test that was positive
7/14: Possible mild symptoms start
7/17: Second test negative
7/18: Symptoms move to chest
7/21: Symptoms improving
Other than the person who wrote a diatribe on FB saying why I should feel ashamed for feeling shame and that I needed to teach my kids about death, it’s been a good night.
I wanted to share a picture of my pulse oximeter because I didn’t know what one was before this. (Isn’t Tuck a great background model?) I have gotten into the habit of checking my vitals twice a day. My O2 never got below 98, which is awesome. Doctors told me that if I got below 92, I needed to seek help. This little device matched exactly to my numbers in the ER. It’s also handy to get a quick heart rate.
You can get a simple one for about $30 on Amazon. I’m now on the hunt for a new thermometer because ours thinks my body temp is 96.5 F. I think the kids submerged it in the sink.
12 weeks ago
DAY 14 & 15: Yesterday and today appear to be about the same. Although I’m no longer contagious according to my test, the time frame and all the doctors, my chest still hurts. It sounds like this might be the case for a while. It’s hard to describe the pain, but I will try. Imagine someone giving you a bear hug, and they squeeze too tight. That’s what it feels like pretty much constantly. It’s that kind of pain, but I don’t have any problem getting a breath or expanding my lungs. I’m starting to see a lot of messages from people who are struggling with the emotional toll that this virus is taking from the lingering effects. You just want it to be gone.
I am doing REALLY well. I’m back to functioning.
DAY 16-18: I definitely turned a corner. That’s how it feels. The last few days have been much better. I have energy and am feeling back to myself. The biggest issue I’m having is reminding myself I’m not 100% still. It’s in the 90s here, and if I’m outside too long, even just sitting in the shade, my body yells at me.
My chest still hurts. The pain is a bit different now. It feels more like a pain I would have if I had pulled a muscle lifting. I know because I’ve done that. It also moves around to different parts of my chest. Last night was a rough sleep because it hurt quite a bit. I think I was too active yesterday making the table and just doing normal things.
11 weeks ago
COVID DAY 24 UPDATE: You can see that I’m “back to normal” with daily life. I’m feeling much better but didn’t want to give any false impressions. I still have chest pains. I will have a couple days of little or no pain. Just when I think that it must all be over, I wake up with pain again. My headaches are better, but I still have the burning and pain throughout my chest. I’ve been reading that this is typical and can last for weeks or months after testing negative. Yay.
9 weeks ago
COVID DAY 39: It still sucks. I will go 4, 5 or 6 days thinking it’s done. And then it comes back. The mental part of thinking I will never get rid of this may be worse than the actual physical discomfort. For 2 days straight now, my chest has hurt. Hopefully tomorrow will be better.
COVID DAY 40: Nope. Still hurts. Today sucked, to put it bluntly. It was the first day of remote learning. Me not feeling good, combined with multiple school challenges, was a recipe for disaster. Tomorrow will be better.
I appreciate the messages from folks who are going through this, too. Hearing from a lot of people who are in the 6-8 week range and still experiencing symptoms themselves. What people are trying to figure out is when do I need to be checked out? And by whom?
COVID DAY 42: After 4 days of chest discomfort, I had a call with my primary care physician. She reached out to my cardiologist, and I now have an echo scheduled for Friday. She explained that they are seeing a trend with patients several weeks out having heart issues. The COVID causes a weakened immune system, and they are seeing a lot of patients where infection gets into the bloodstream, along with blood clots. The good news is that I do not have any indications of infection.
They have scheduled my echo so that they can look at my aorta and ensure it hasn’t been damaged. (My most significant heart condition is my aortic valve.) Also, last night I started coughing in my sleep that turned into choking and gasping for air. It quickly passed but woke Josh up in a panic. We are watching that closely to make sure it doesn’t become pneumonia.
8 weeks ago
COVID WEEK 6.5: We’ve moved past days and into weeks. I hope these updates don’t come across as Debbie Downer. I’m just trying to explain how this virus goes well beyond 14 days.
The last week has had a lot of moving parts. I had a virtual visit with my PCP after my chest discomfort hit 4 days. She asked me to reach out to my cardiologist, who scheduled me for an echo on Friday. Thursday night, I started developing more of a cough at night. The chest pains have decreased, but the coughs continue. Only occasionally during the day, but I wake up usually once at night from it.
This morning, my PCP called to follow up. She had seen my echo and thought I needed to go in to see him in person based on the results. She also wanted me to get more chest X-rays to check for pneumonia again. She also asked me to get a sleep study to check for sleep apnea. I had one a few years ago, but she wants another.
CHEST X-RAYS: Here is the silly part. My doctor is trying to figure out how to get my X-rays done. She wants me to go to her office instead of the hospital. The problem is that when they ask me if I’m coughing, it will send up red flags and they won’t let me into the office. I need a negative COVID test result. The last test was negative, but it was before my trip to the ER, so they won’t accept it.
Tomorrow morning, I go for another COVID test. They know that I could very well test positive and not be contagious. I’m not sure what would happen then. Send me to the hospital for my X-rays, where they can wear protective gear? Taking it day by day.
ECHO RESULTS: Because nothing is straightforward … my cardiologist’s nurse called and told me that the doctor was happy with the results and he would see me in 2 years for my regular checkup. Huh? I asked about the comments that had alarmed my PCP She said, “Well, I guess he isn’t concerned.” I asked if there were any COVID related things I needed to watch for. The nurse said “worsening symptoms.” I explained that is why I was referred to the cardiologist. She said, “OK, great. See you in 2 years.” I think I will respond to my PCP and ask her to call my cardiologist, as I was told his schedule was booked until September for phone visits. I have viewed the echo and have the same questions that my PCP did. But the good news is that my cardio team isn’t worried at all.
COVID TEST #???: I’ve lost count of how many tests I’ve had now. I showed up for my COVID test that was scheduled for me at the hospital today. They asked me why I was getting tested. They were visibly shocked when I told them I had tested positive 7 weeks ago and needed a negative test to get my new chest X-rays.
We talked about my truck a little (all this line waiting recently has led to an elevated number of overlanding talks) and then stuck more of those tests up my nose. At this point, the test is just a formality. If it’s negative, wonderful. If it’s positive, no surprise since it can stay in my system for months after the virus. If my chest didn’t still burn, I would have given up this battle long ago.
On a good note, the doctors said that my echo does NOT indicate any COVID damage. (heart emoji)
WHY ANOTHER TEST?: I’m getting some of the same questions. I know it’s confusing. I will try to explain.
I tested positive 7 weeks ago. After two weeks, I was “cleared” and no longer contagious or needed to quarantine. I stayed in the house, and the rest of the family went to the cabin during the time I was in quarantine.
Symptoms (especially the respiratory ones like I have) are lasting in some patients for weeks or months after they are no longer contagious. Symptoms do not mean you have an active case. The inflammation in the lungs can take a very long time to heal. Even though I was cleared 5 weeks ago, my symptoms continued.
They are requiring me to return a negative COVID test because of my cough. The health providers have a COVID checklist and do not allow anyone through the doors who have any of those specific symptoms. Cough is one of them. If I can show a negative test, that doesn’t apply.
I’m told that COVID + patients should expect to test positive for several months after. It takes a long time for the cells to all leave the body. They aren’t active, though. If I get a positive test, it doesn’t tell us anything except that I had COVID in July.
Disclaimer: These are my understandings. I could be wrong. It changes daily.
7 weeks ago
NEGATIVE: Thank goodness. My new COVID test came back negative. That doesn’t solve my ongoing chest issues but clears another hurdle.
6 weeks ago
COVID 8 WEEK UPDATE: Finally got the news I have been waiting for. Received my new chest X-ray results.
No signs of pneumonia.
No lung scarring.
From what I know I think that means I’m in very good shape. Now, I’m just continuing to wait it out and say goodbye to this chest stuff forever. I am so relieved.
3 weeks ago
COVID UPDATE: I decided to get an antibody test. I didn’t need any approval. Just scheduled it. We will see if I get a bill. I should get results in 24 hours.
This week
I tested negative for the antibodies. I had a ton of folks messaging me about why that could be. I have not seen any charges from Atrium for it yet.*
If you’ve had COVID-19 and you have ties to Charlotte, email us at charlottefive@charlottefive.com and tell us your experience. We may publish it in an upcoming article.
*as told to CharlotteFive
This story was originally published October 22, 2020 at 10:28 AM.
