8 Months Later, My Post-COVID-19 Symptoms Linger

What happens when one still suffers from COVID-19-related symptoms long after infection?

Unfortunately, I am one of those people. My medical team is comprised of multiple specialists, along with my primary care doctor. Most of this team is clueless about the long-term effects of the virus, cringing as we discuss the lingering symptoms they can’t explain or help with.

It feels like much longer than eight months since I was hospitalized with COVID-19 and not expected to make it out alive. “A miracle,” my team replied when I woke up in the hospital and asked what had happened.

As I began my recovery, I was excited and grateful to learn how to walk again. My ability to complete basic activities of daily living returned quicker than most expected, thankfully.

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I’m turning corners and making progress every day. Baby steps count; it’s how I’ve gotten to where I am now. I owe my recovery to my amazingly supportive husband, family, friends, and colleagues. Let’s not forget my medical team and everyone’s prayers. I think to myself, “I am winning at life.”

But as thankful as I am for my progress, it’s like a slap in the face that lingering symptoms continue to wreak havoc on my already fragile body.

Neurological symptoms take a toll

Struggling with my many post-COVID-19 neurological symptoms affects my relationships. I’m embarrassed when I try to communicate or interact with others, unsure if I’m stuttering or slurring my speech.

Because of my pulmonary hypertension (PH), I am familiar with extreme fatigue and dyspnea, among other symptoms. The cognitive changes — brain fog, memory loss, and an inability to concentrate — only add to my distress. As a people person, decreasing my social interactions has felt unsettling.

Because the COVID-19 virus is relatively new, the data on long-term symptoms comes only from others like me who share their journeys with various lingering problems. The scariest part of the virus is that the unknowns are plentiful.

I’m thankful my team cared enough to seek help

Fortunately, my medical team referred me to a post-COVID-19 neurology clinic. I was disappointed by my team’s lack of answers or resolutions, but grateful that they cared enough to know I needed more help.

Although I was hopeful that the neurologist could help, I had to wait almost two months for the appointment. A few weeks ago, it was finally time for my consultation. When my husband, Manny, and I arrived, I was not disappointed.

My neurologist was thorough and compassionate as she validated my symptoms. She prescribed a medication to improve my focus. She also shared that most who experience difficult neurological symptoms post-COVID-19 start improving a year after infection. For me, this is only a few months away. Unfortunately, like me, many patients tend to hold off on seeking help because they think they will improve independently. This complicates recovery, she said.

I am grateful that she ordered more labs to check for autoimmune disorders, vitamin levels, and more. She aims to eliminate any simple fixes as she awaits the results of my next brain MRI. She scheduled a follow-up appointment in four months, but encouraged me to call or use my online patient chart to reach her at any time.

You are not alone

Long-hauler syndrome, post-COVID-19 syndrome, long-term COVID-19 — the name doesn’t matter. What’s important are the people who continue struggling with symptoms long after they’ve tested negative. Some of these symptoms are debilitating, or in my case, embarrassing and a cause for social withdrawal.

If you or a loved one has PH and continues to battle with long-term COVID-19 symptoms, I encourage you to seek a post-COVID-19 clinic. Many larger hospitals have created a dedicated team to focus on this unfortunate problem. If you can’t locate one near you, many offer telehealth appointments. Ask your local doctor for a referral.

Just as we PHight PH every day, together we can PHight this post-COVID-19 battle, too. Stay safe out there, my PHriends.

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.