I’m sharing this article for a friend who desperately wants others to know there’s more to surviving Covid-19 than just getting through the illness. Yes, I’m using my voice to share someone else’s story. This is a friend I care very much about and her experience is most likely not unique. I suspect other Covid-19 survivors are having the same humiliating, undignified experiences with their medical providers post Covid-19 too. She wants others to know what to expect.
Here is her story:
I am a healthy 64-year-old female, I work out every day, swim, and bike on a regular basis. I have been very cautious regarding my circle of friends since the virus started. My friends and I were shocked when I tested positive for Covid-19. On December 5th
I started to get stabbing head aches by that evening my throat was hurting. On December 7th I decided to have a Covid-19 test to be responsible to my family and friends. On the 10th my results came back positive.
On December 14th I was admitted to the hospital. I was having trouble breathing, I had not eaten for 8 days, I hadn’t slept in 4 days due to muscle spasms throughout my back. I had a 103 fever and was dehydrated.
The experience at the hospital was wonderful. I received the antibodies infusion drug to build antibodies. Within 2 hours my fever was down to 97.1.
Although I was reluctant to leave the hospital due to having pneumonia, I had to have faith in the doctor and the discharge instructions. Take my medicine, make an appointment with my general practitioner, and have another x-ray of my lungs.
Easy I thought, unfortunately, what I soon experienced from some of the medical professionals was far from easy. In fact, it was horrifying to me.
The very people I was supposed to be connecting with for post-care were turning me away out of ignorance and fear.
You read that right. I was being denied follow-up care because I had tested positive for Covid-19. Never mind that I was one of the lucky ones, recovered, and fairly quickly at that.
I was confused, why was I being turned away from the very people that I trusted with my health? The very people that I had always gone to in the past for advice, and guidance?
Never did I think that I would walk out of a medical facility crying because of the way I was treated by the very employees that are there to serve the sick.
We think the biggest hurdle will be to survive this awful virus. Wrong, the biggest hurdle is post-covid-19. The assumptions, the ignorance, the ‘make the rules up as we go’, the lack of consistent messaging.
What I experienced, in my opinion, boils down to a lack of education. It is creating fear, robbing the sick of easy access to medical care, and most disturbingly, our dignity.
This was not a random incident. It happened at two different facilities, including my primary care physician!
This is what really blows my mind and why I am telling my story: Not one of these facilities seemed to have any knowledge of the recommended CDC guidelines for post-Covid-19. I was told that I must meet the following criteria which I met:
You can be around others after:
10 days since symptoms first appeared and
24 hours with no fever without the use of fever-reducing medications and
Other symptoms of COVID-19 are improving*
Loss of taste and smell may persist for weeks or months after recovery and need not delay the end of isolation
I was told if you can say yes to all three of these, then I can return to work, be seen by medical providers, resume normal activity, etc.
I was also told in the course of my treatment not to repeat a covid-19 test by three clinical nurses, one charge nurse and a general practitioner for at least 3 months because the test will most likely come back as a false positive (I had been given an antibody infusion while in the hospital).
On day 25 my breathing was back to 100% normal. I had not had a fever since December 14th. I was no longer coughing. I was able to answer yes to all post questions, setting up medical care per the discharge instructions was next on my agenda.
Following up with my primary physician and getting an x-ray were my first two steps. I had an appointment already scheduled with my primary prior to falling ill, so I called my physician’s office to confirm my appointment only to be told they would not see me unless I brought in a negative covid-19 test result.
I shared with the office that I was told not to have a follow-up test for at least three months for it most likely will be a false positive. I explained that I met the CDC requirements for resuming normal activities, returning to work, and seeing my doctor.
The office did not seem to know or care about the CDC’s suggested post-Covid-19 guidelines I mentioned, just a negative test result. To no avail, even after educating and explaining that I in fact did have antibodies and was recovered, I was still turned away. They were insisting on a negative test result be brought to the appointment or they would not see me.
I personally could not find anywhere in the CDC guidelines that you must test negative in order to be seen by your doctor.
I had to look for a new general practitioner, ASAP.
My next order of business was to make an appointment to get a chest X-ray. When making the appointment I was asked what the X-ray was needed for. Upon telling them it was follow up from having had pneumonia, I was again told that I would have to bring in a negative covid-19 test.
Once again, I found myself educating someone who works in the medical field what the CDC guidelines were on post-Covid-19 protocols.
After much discussion and the receptionist consulting her supervisor, they allowed me to make an appointment. I was relieved. Unfortunately, my relief was short-lived and traded in for tears.
Once checked in, the X-ray technician brought me back to start the process. She asked what I was getting a chest X-ray for and I was transparent and honest that it was follow-up for pneumonia. She became visibly uncomfortable being in the same room with me which made me uncomfortable.
I again found myself trying to make her, the trained medical professional, feel comfortable, explaining and educating just so I could have my lungs X-rayed!
On the way out I told the receptionist that I would wait for my CD outside. Five minutes later the receptionist came out with my CD held by her thumb and pointer finger, her arm was extended to avoid being close to me.
She did make some small talk and at first, I thought she was being kind to me until she started questioning me about my situation.
Who allowed me the appointment? She shared with me that the front desk area was upset that I was allowed in their facility for an appointment. She said that my records indicate that I am positive for Covid-19.
Yup, you guessed it, I once again found myself educating and explain to yet another medical professional why I was safe to be around. No one in this office seemed to know anything about post-Covid-19 protocols.
I’m exhausted and exasperated from the entire experience, yet things are continuing to go from bad to worse.
This receptionist is questioning me about my future appointment with a new general practitioner. Does the new GP know that I tested positive for Covid-19? She then – unsolicited – suggests that I be transparent with the new office, assuming that I wasn’t going to be anything but truthful.
I was appalled, in shock, and embarrassed by this receptionist’s behavior and words. I was thinking about how many HIPPA rules she was violating as a receptionist discussing my healthcare with me. Did everyone in this office now know my private medical details? I’m horrified by this.
I clearly get that the fear-based chain reaction in this office (and many others) is due to a lack of education and acceptance of misinformation as truth. It unfortunately robbed me, the patient, of having a good experience with them. While I was feeling better physically, my spirit was shattered. I wasn’t supposed to be shamed, humiliated, and judged by these people but that is what they were doing.
I walked to my car with tears running down my face and disbelief in my heart. It seems that although CDC had set guidelines for the public to follow, to protect us from spreading the virus and to be a helping hand within the medical profession to safely treat patients has backfired.
It seems that some of the medical providers are making their own rules and guidelines up as they go, which prevented me from getting the care that I needed without a fight, without humiliation.
When a person has medical needs post covid-19 and is being turned away or being given a hard time due to fear, due to not being educated, we need to ask ourselves what has gone wrong, and how can we stop the insanity. If covid-19 is here to stay which it may very well be, if covid-19 is the new unknown of tomorrow, we need to work together as a community and not label.
The CDC guidelines are out there to help us to weather this storm, to be a helping hand. They are there both for the public AND the medical community to be on the same page. When I was discharged, I was given resources for this information. I am blown away that these medical providers are not even aware of them.
If you work for a medical provider and my story is shocking to you, then please share it. I’ve provided several resources below – all the same, which I provided to these health care facilities and offices, who seemed not to be aware they even exist.