What You Should Know About Long-Haul COVID

Throughout the pandemic, experts have continued to learn more about long COVID (also known as long-haul COVID and post-COVID conditions) — and what it means for risk of lung disease, heart disease, mental health conditions, cognitive issues, and more.  

If you’re immunocompromised and at risk for severe COVID-19, you’ve likely already been taking every step possible to lower your chances of getting infected. However, if you do contract COVID-19, it’s important to know how it affects your risk of other health conditions so you can work with your doctor to monitor symptoms.  

It’s not clear if being immunocompromised alone makes you more likely to experience long COVID. However, you may be at greater risk simply due to your higher likelihood of developing severe COVID-19. 

“I have not seen data to suggest confirming that immunocompromised patients are more likely to develop long COVID than patients who are not immunocompromised,” says Samoon Ahmad, MD, clinical professor of psychiatry at NYU Grossman School of Medicine. “That said, it’s clear that immunocompromised patients are more likely to develop severe COVID if they get it — and research suggests that people who have severe COVID are more likely to develop long COVID.” 

However, more research is needed to confirm this link.  

Meanwhile, factors such as older age, being female, and hospitalization at symptom onset have been found to be significantly associated with an increased risk of developing persistent symptoms, per a July 2021 review in the Journal of the Royal Society of Medicine. 

Needing oxygen therapy, pre-existing hypertension, and chronic lung conditions were also highlighted in the study as being major factors of long-term symptoms.  

So what does this mean for your long-term health and risk of chronic disease? Here are potential complications of long COVID you should know about as an immunocompromised patient. 

Long COVID and Lung Disease

COVID-19 can cause both short-term and long-term complications to your lungs, but the way in which it does has changed over the course of the pandemic.  

You may remember that at the beginning of the pandemic, many people experienced COVID-related pneumonia. This resulted in oxygen levels dropping, feelings of breathlessness, and eventually hospitalization. That’s because the earlier variants had a tendency to infect the lung tissue.  

“With those variants, we saw a lot more scarring happening to the lungs,” says Panagis Galiatsatos, MD, assistant professor of medicine at Johns Hopkins Medicine. “For most people, the scarring kind of came and left. For others, it remained permanent — and then there’s a small subgroup where the scarring actually never ‘shut off’ and they developed post-COVID-19 fibrosis.” 

The newer variants, particularly Omicron, are much more involved in the airways (the tubes that lead to the lungs). That results in much more coughing during infection, but less of a drop in oxygen levels.  

A recent University of Iowa Health Care study of 100 participants revealed that air trapping persisted in eight out of nine participants imaged more than 200 days after COVID-19 diagnosis. Air trapping is a condition in which people cannot empty their lungs when they breathe out, which is indicative of small airways disease, and it leads to side effects such as shortness of breath.  

The researchers found that the percentage of lung affected by air trapping was similar across patients, regardless of how severe their symptoms were.  

What’s more, with the more recent variants, the most common complication patients have post-COVID is a post-viral cough that takes three to six months to go away. During this time, your lungs are essentially trying to “cough out” the affected cells.  

“The lungs are going to clear out the cells that were invaded,” says Dr. Galiatsatos. “This cough is very normal. We can suppress it if you need, but this is your lungs’ way of getting things out.”  

That said, if you’re immunocompromised, you could experience abnormal healing. Touch base with your physician when you’re recovering from COVID-19 so they can monitor your cough or any other lingering symptoms. While a doctor may normally look further into a cough that lasts longer than six months, if you’re immunocompromised, that timeframe may shorten.  

“If an immunosuppressed patient has a cough even just a month after COVID-19, I scan their chest and make sure things are going OK,” says Dr. Galiatsatos. Certain patients, like those who are older or have preexisting pulmonary conditions like asthma, are more vulnerable to developing ongoing pulmonary symptoms.  

In another recent study published in Radiology, researchers assessed lung abnormalities in 91 participants (mean age of 59 years) one year after they had COVID-19 pneumonia. At one year, CT scan abnormalities were found in 54 percent of the participants — 4 percent of which had received outpatient care only, 51 percent of which were treated on a general hospital ward, and 45 percent of which had received intensive care unit treatment.  

What’s more, 63 percent of participants with abnormalities did not show additional improvements after six months. Being older than 60 years, critical COVID-19 severity, and being male were associated with persistent CT abnormalities at one year.  

Long COVID and Diabetes

There may also be a link between long COVID and the development of type 2 diabetes. In a May 2022 study in The Lancet Diabetes & Endocrinology, researchers used the national databases of the U.S. Department of Veterans Affairs to analyze data from more than 8.5 million participants before and during the pandemic.  

They found that people who had been infected with COVID-19 were about 40 percent more likely to develop diabetes up to a year later than those in a control group.  

Almost all cases were type 2 diabetes, in which the body doesn’t produce enough insulin or becomes resistant to it. Patients who were hospitalized or admitted to intensive care had roughly triple the risk compared to control participants who did not have COVID-19 — but even those with mild infections and no previous diabetes risk factors had a higher chance of developing the condition.  

“The mechanism(s) underpinning the association between COVID-19 and risk of diabetes are not entirely clear,” note the researchers.  

However, it’s clear that prevention and monitoring for diabetes should be part of the post-COVID strategies, particularly for those who experienced severe COVID-19.  

“Current evidence suggests that diabetes is a facet of the multifaceted long COVID syndrome,” add the researchers. “Post-acute care strategies of people with COVID-19 should include identification and management of diabetes.” (Acute COVID-19 is the stage of infection that typically lasts four weeks from the onset of symptoms, per a review in Nature Medicine.)  

Long COVID and Mental Health

Long COVID has also been linked to a variety of mental health and cognitive issues, including:  

Depression & Anxiety

COVID-19 may increase your chances of experiencing depression or anxiety. An observational follow-up study in six European countries published in The Lancet Public Health found that COVID-19 survivors who were bedridden for more than seven days had a persistently higher risk for depression (61%) and anxiety (43%) than uninfected participants throughout the study period.  

A 2021 study published in Cardiovascular Diabetology suggests that long COVID is primarily caused by microclots that starve different cells of oxygen. These microclots form around trapped inflammatory markers.  

“I think this mild hypoxia [deprivation of oxygen in tissues] can lead to inflammation and activation of microglia,” says Dr. Ahmad. “These microglia are cells in the brain that release inflammatory signals when activated, which then leads to neuroinflammation.” This could potentially explain the pathology of long COVID and associated issues like anxiety.  

You may find it difficult to differentiate your worries about getting COVID-19 (or fears about experiencing arthritis flares or other symptoms of your underlying condition) with clinical symptoms of anxiety. Of course, the pandemic has been a period of great stress for many — and particularly those who are at high risk for severe COVID-19.  

Continuing to avoid crowds or choosing to work from home doesn’t necessarily mean you have clinical anxiety. However, anxiety does become a clinical problem when it disrupts your life to the point of you avoiding social, occupational, or academic obligations. For instance, if you feel too anxious to pick up phone calls from friends or family.  

“If your anxiety is so severe that it makes it interferes with your ability to live your life, then you definitely want to speak to a doctor,” says Dr. Ahmad. “You may also want to tell your doctor about your anxiety if it is part of a larger cluster of symptoms — including shortness of breath, fatigue, or if you are slow to heal from small cuts or bruises.” 

It’s important to stay in touch with your doctor and keep a symptom journal if necessary. 

“Immunocompromised patients should know that anxiety is one of the symptoms of long COVID and that it can be exacerbated by other symptoms,” says Dr. Ahmad. “For example, many patients with long COVID report sleep problems (“COVID-somnia”). When you don’t sleep well, this can make your anxiety worse.” 

Sleep disturbances are estimated to affect up to 50 to 75 percent of COVID-19 patients, per a 2021 review in the Journal of Personalized Medicine. And of course, if you’re living with another underlying condition, symptoms like insomnia or pain may be commonplace for you.  

“A similar thing can be said of several other common long COVID symptoms, including fatigue and shortness of breath,” says Dr. Ahmad. “When a patient feels severe shortness of breath, this may even trigger a panic attack.” 

Meanwhile, it’s normal to feel sad sometimes (especially during a global pandemic), but if you’re persistently sad, anxious, or in an “empty” mood, it could be a symptom of depression, per the National Institute of Mental Health.  

Other common symptoms of depression include: 

• Feelings of hopelessness or pessimism 
• Loss of interest or pleasure in hobbies 
• Difficulty concentrating 
• Changes in appetite or unplanned weight changes 
• Suicide attempts or thoughts of death or suicide 

If you or someone you know is in immediate distress or thinking about hurting themselves, call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255). You also can text the Crisis Text Line (HELLO to 741741). 

Brain Fog

Difficulty with concentration and memory have also been attributed to long COVID. In fact, brain fog — the feeling of slow or sluggish thinking — occurs in an estimated 22 to 32 percent of patients who recover from COVID-19, per Harvard Medical School.  

In a recent study in the journal Nature, researchers analyzed brain changes in 785 participants ages 51-81 whose brains were scanned twice (including 401 people who contracted COVID-19 between their two scans). They found evidence that COVID-19 can cause the brain to shrink by reducing grey matter in regions that control emotion and memory. 

“The participants who were infected with SARS-CoV-2 also showed on average a greater cognitive decline between the two time points,” note the researchers. 

The effects were even seen in those who were not hospitalized with COVID-19. More research is needed to determine if this impact could be partially reversed or if it will persist in the long-term. 

Meanwhile, a January 2022 study published in Brain Communications suggests that some people may have problems with memory and attention after recovering from a mild case of COVID-19, even if they don’t realize it.  

Testing showed that performance on tasks involving attention and memory were poorer in participants who had COVID-19 compared to those that didn’t. However, in this study, both of the effects seemed to improve within six to nine months.  

“My doctor said I was COVID long-hauler after my symptoms continued from June of 2020. Recently, I began noticing brain fog, a symptom I haven’t experienced in quite some time,” says JP Summers, an Advocacy Fellow at the Global Health Living Foundation who lives with migraine, fibromyalgia, rheumatoid arthritis, and heart disease. “My mind goes completely blank. A heavy cloud of confusion sets in and I feel lost on where I am or what I was doing at that moment. It is both incredibly frustrating and terrifying, especially when it happens in a public place.” JP has been actively tracking her symptoms to discuss with her cardiologist at her next appointment.

Long COVID and Heart Disease

Heart health has been a major focus during the COVID-19 pandemic, with several cardiovascular effects appearing to be associated with long COVID. 

In a February 2022 study published in Nature Medicine, researchers analyzed 154,000 U.S. veterans (plus over 10 million patients who served as historical and contemporary control groups). They found that in the year after recovering from COVID-19, patients had increased risks of several cardiovascular issues, including abnormal heart rhythms, heart muscle inflammation, blood clots, strokes, myocardial infarction, and heart failure — even if they weren’t hospitalized with COVID-19.  

The risks were evident regardless of age, race, sex, and other cardiovascular risk factors such as obesity, hypertension, diabetes, chronic kidney disease, and hyperlipidemia (high levels of fat particles in the blood). The risks were also evident in those who did not have any cardiovascular disease before exposure to COVID-19, showing that these risks may manifest even in those at low risk of heart disease.  

“Our results provide evidence that the risk and 1-year burden of cardiovascular disease in survivors of acute COVID-19 are substantial,” note the researchers. “Care pathways of those surviving the acute episode of COVID-19 should include attention to cardiovascular health and disease.”  

Your heart and lungs work together to deliver oxygen-rich blood to your body, but COVID-19 can disrupt both. COVID-19 can cause lung damage, keeping oxygen from reaching the heart muscle, meaning your heart has to work harder to get oxygen to other tissues in the body, per the University of Maryland Medical System.  

COVID-19 can also cause an excess of inflammation, which may further damage the heart and affect the electrical signals that help it beat properly. This can lead to abnormal heart rhythm or exacerbate an existing rhythm problem.  

Work with your doctor to monitor your heart health and practice a heart-healthy lifestyle. This includes staying active, eating a healthy diet, managing your stress, and quitting if you’re a smoker.  

The bottom line: Although research is showing that long-term complications from COVID-19 are prevalent, there are steps you can take to guard your health and detect any issues early on. And, of course, it’s important to get the COVID-19 vaccine (including booster shots) if you’re eligible to prevent infection in the first place — remember, even if you’ve already had COVID-19, you’re more likely to get it again if you’re not vaccinated.  

Read more about what immunocompromised patients should know about life after recovering from COVID-19. 

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