5 Things My COVID-19 Survival Taught Me About the Patient Experience

It started with the chills. It led to congestion. The next thing I knew, I was having horrible GI symptoms. Loss of taste and smell came next. My fever spiked. I felt a heaviness of my chest. I could barely talk because I couldn’t breathe.

Before my test results came back 6 days later, I knew I had COVID-19. Even though my symptoms were severe, I did not seek out in person care, mostly because I was alone and the energy it would require was just not possible. I knew virtual healthcare was an option so it felt like my only hope. After my virtual visit I was told to rest. But I was in so much physical and mental pain, even resting seemed impossible.

Having COVID-19 was terrible. But the patient experience I went through was just as bad.

Why? There’s a huge lack of information between what the patient needs and what the provider can offer. Throughout my COVID-19 experience, there were many opportunities where someone from the health system or my doctor’s office could’ve checked on me. Answered my questions. Given me the self-care tools and resources to help me see I could manage on my own and I would make it through.

It was the most frightening two weeks of my life, I was alone. All I wanted was someone to turn to, someone to engage with me and someone to ask for help.

As the pandemic continues to rage across the U.S., you’ll have patients who aren’t sick enough to come to your hospital for care, but they still need you. Here’s how you can help them:

1: Patient Care Starts and Ends at Home

There was plenty of information about how to identify COVID-19 symptoms, what to do when you're having symptoms, where to go to get tested and what testing you need. After that, the information seems to stop.

 

What can I do? When do I seek medical attention?

Take Tylenol. Rest. Seek medical attention for severe breathing problems. That’s all I was told to do. But what is severe? When I could not move without losing my breath or couldn’t stop coughing was that severe enough? I had to rely on online survivor forums and second hand experiences from my family and team members to discover Chris Cuomo of CNN and his breathing exercises or pure canned oxygen for altitude sickness or a blood pulse oximeter that were the tools that helped me turn a corner.

In hind sight, I realized that my breathing and blood oxygen levels were dangerously low at multiple times through my illness. I was unsure of what to look for, and out of fear I struggled alone.  I understand now I should have sought medical help, and I am still managing the damage done to my body and brain as a result of this mistake.

I needed a guide or resource from my local health system to direct me what to do for self-care at home and clear signs when it is time to seek medical attention.

2: Mind the Information Gap

Living in Nashville, we’re in a hot spot for COVID-19. I waited six days for my results. By that time, I knew in my gut that I already had it, but what about all the people who take the test and are asymptomatic?

What do I do to prepare myself?

There wasn’t any clear direction on what you should do or not do, after taking a test. Testing centers are backed up and that’s why it takes so long for results to come back, but nobody said this to me directly. A lack of results leaves you feeling unsure of what to do next.

I wish a local or regional health provider would have had online resources or content that helped me to know what to do prior to my case becoming severe. Such as how to prepare my home for my inability to move, what supplies I needed for pain management and managing dehydration. I could have used those days to prepare myself for what was to come.  

3: Empower the Caregivers

 I relied on the kindness of my friends and neighbors to help me, but they weren’t sure what to do, either. What if a hospital sent out a mailer or created an infographic that had pertinent information to help caregivers to know what to look out for or when they should help the patient seek advanced medical care? Or help them to know how they can be safe when helping someone.

How can they safely help?

Preparing the caregivers can be in the hospital’s best interest because it’s a way to make sure only the sickest COVID-19 patients go to the hospital.

4: Telehealth Can’t Work Alone

Telehealth is all the rage right now, but all my telehealth nurse told me to do was make a follow-up appointment with my primary care physician because she could not help me. That’s it.

Where do I go from here? Who can help me if you cannot? Who is looking out for me?

There was no “next-step.” No automatic follow-up appointment with my PCP or someone who could actually help me. My PCP didn’t want me to come in to the office with my positive diagnosis and advised me to go to the hospital if I was not able to recover at home.

The hand off between telehealth and in person care is a black hole. There is no clear next best action for patients that can easily fall into the gap.

I needed a resource that showed the pathway. Was the first step for COVID-19 positive patients telehealth or PCP or ER? I still don’t know.

5: Care Beyond the Diagnosis

When is it safe to be around my friends and family again? Should I get an X-ray of my lungs? When do I need to get re-tested? Is the damage to my brain from lack of oxygen permanent?

When do I need to get retested? 

These are questions I don’t have the answers to. My healthcare providers don’t seem too, either. And this is a problem. After exceeding the CDC guidelines and coming out of quarantine almost 20 days after my first symptoms and 10 days since my fever ended, I was still wearing the scarlet letter of COVID-19. Patients and their loved ones need to know what’s next for them and where they go from here. A savvy health system could still step in and start to build a relationship with me now that I am survivor and still searching for health solutions in a life post COVID-19.

Serving patients beyond your front door

As a healthcare communicator, you can play a big role in optimizing the patient experience. Especially during COVID-19, there are opportunities along the way of a patient’s journey to build trust, enhance content, resources and provide clear communication. Your homebound COVID-19 patients are desperate for information and help. Now is the time to give them everything you have.