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For those who’ve developed COVID-19, it can be a long road back to good health.

Researchers originally estimated that approximately 10 percent of people experience prolonged illness after COVID-19, and can even experience new, persistent, or progressive respiratory, cardiac, or neurological symptoms.

Newer research now shows that these prolonged symptoms show up in almost a third of those who had mild cases of COVID-19, too.

These so-called “long-haulers” experience symptoms that can last for weeks or months.

That is all especially bad news if you live with type 1 diabetes (T1D).

Lingering symptoms can take a toll on blood sugar levels, while fatigue and so-called “brain fog” impacting memory and focus make diabetes management difficult at best.

DiabetesMine spoke with several T1D long-haulers about how they’ve been grappling with these continued effects from COVID-19.

First, let’s take a look at what is known about “long-haul” COVID-19.

“There are a multitude of symptoms that range from cardiovascular, chest pain, shortness of breath, high heart rate, through respiratory or the lungs where there’s a high number of patients who are short of breath, low oxygen levels, to the neurologic symptoms where you have loss of smell, loss of taste, brain fog, depression, forgetfulness,” Dr. Christian Sandrock, health director of critical care and a professor of medicine at the University of California Davis, told Healthline in February 2021. “There’s a whole host of different things we’re seeing.”

Research published in The Lancet journal in November 2020 found severe lung damage in the organs of people who’d died from COVID-19, which the authors tied to long-term symptoms in survivors.

“At 6 months after acute infection, COVID-19 survivors were mainly troubled with fatigue or muscle weakness, sleep difficulties, and anxiety or depression,” reported the researchers, from the University of California Davis Medical Center. “Patients who were more severely ill during their hospital stay had more severe impaired pulmonary diffusion capacities and abnormal chest imaging manifestations, and are the main target population for intervention of long-term recovery.”

UC Davis medical experts report: “This [long-term] condition can effect anyone — old and young, otherwise healthy people and those battling other conditions. It has been seen in those who were hospitalized with COVID-19 and patients with very mild symptoms.”

Study co-author Dr. Mauro Giacca, professor of cardiovascular sciences at King’s College London, has indicated that this lung damage may well be the cause of a variety of long-term symptoms. “The presence of abnormal cells with several nuclei [in the diseased lungs]… might play a role in the severity of the disease,” Giacca said.

But some scientists insist that more research is needed to understand the true origin of persistent “long-haul” symptoms.

No matter how you define or research it, it’s troubling for those in the Diabetes Community.

For example, Keri Hanger in Wisconsin told DiabetesMine that she’s still having memory fog months after first testing positive and recovering from acute COVID-19 symptoms last spring. She’s also been getting fatigued more easily than before, and is experiencing sleep issues where she can’t stay asleep for longer than 4 to 5 hours.

She started testing her blood sugars more often throughout the day to detect any patterns, and raised her insulin doses to keep her blood glucose (BG) in range. Hopefully, it will get better soon.

Meanwhile in Michigan, longtime T1D Kathy Schornick is glad to hear the researchers have now given these continued COVID-19 effects a name. Working in a “COVID-19 unit” at a hospital in Metro Detroit, she was exposed to the novel coronavirus at work in May 2020 and ultimately ended up in the hospital on a ventilator for 10 days.

While her main bout with COVID-19 lasted about 3 weeks, the after-effects have been taxing: no voice, a hyper-sensitive sore throat, and four or five additional symptoms that still continue many months later. With all of that, she’s experienced fluctuating BG numbers and also started taking a low dose of Gabapentin for occipital nerve damage that developed afterward.

“COVID still makes me so angry,” she said. “I’m thankful for the many who cared for me while being sedated on a ventilator and insulin drip. I have good days and bad days, going from a good place to angry to wanting to cry. COVID-19 is a beast.”

Justin Wilhite in the San Francisco Bay Area, who shared his story with DiabetesMine after getting COVID-19 in March 2020, is also still seeing the continued effects.

“Long COVID has me by its clutches,” he said. “Acute symptoms lasted a total of 30 days and I had 5 days of peace. But long COVID began in earnest from that point on. I’ve been hospitalized with Epstein-Barr virus (EBV) and various other issues.”

By September, Wilhite says he felt OK — maybe even good — but relapsed again in October. From then on, he has been experiencing shortness of breath and pain in his muscles and joints. At times, it’s so bad that Wilhite says he needs to use a wheelchair to move around.

In Texas, Cassie Thompson said she first came down with COVID-19 in July 2020 and recovered within a couple weeks from low-key symptoms — fever, cough, and body aches. But ever since then, she’s found that her diabetes is just more difficult to manage than it had been before her illness.

“Everything seems harder to manage,” she told DiabetesMine. “Lots more volatility in my numbers. My A1C has stayed roughly the same, but my Dexcom CGM graph just isn’t quite as flat no matter what I do. It could be the stress of everything, or something else going on.”

When the global pandemic punched the world in the gut and closed everything down, Allesandra Shah in Florida and her family took all the necessary precautions and stayed safe.

Allesandra Shah

She stayed home and took online college courses in lieu of her first year away at a Tennessee University. Then in January 2021, Shah received word that she’d be able to head to Tennessee for in-person learning and a hospitality internship.

With the vaccine rollout kicking off, she thought everything would be OK — until COVID-19 came knocking on her door.

It didn’t seem real. After all, she and her family had made it through a long, challenging year without being exposed.

Diagnosed with T1D at 18 months old, Shah and her mom say they were overly protective and cautious during 2020 — especially since Allesandra was living with her 67-year-old grandmother at the time, to help out in the aftermath of her grandfather’s passing the year before. Her mom, Michelle, as well as her younger brother and sister (who is 13 and also lives with T1D), were living at home about 2 miles away.

Just before her planned departure for her college internship that would take Shah away from her home state for the first time, she had a tearful goodbye with a dear friend. And it turns out that encounter brought exposure to the virus that causes COVID-19.

Shah quarantined for 2 weeks in another part of her grandma’s house, isolated and texting with her mom regularly. The family would put food and supplies on the back patio where she had access via a door to the backyard, and all communication was by phone or video.

Fortunately, her illness never rose to the level of needing hospitalization. While she felt terrible and had the common COVID-19 symptoms, and slightly elevated blood sugars, Shah believes her diabetes technology — specifically the Tandem t:slim X2 with Control-IQ closed loop system — is what allowed her to stay on top of her diabetes management.

Though her numbers were slightly elevated and there were ketones spilling into her urine (a sign of dangerously high blood sugar), the system kept her BG levels mostly in range, staving off a worse experience with COVID-19.

“If not for Control-IQ, I don’t know what my experience with COVID-19 would have been,” she said. “Even though I had to use an excessive amount of insulin — nearly twice as much as usual — it really saved my blood sugars from spiraling out of control. It was pretty scary.”

Her mom Michelle says she was “glued” to the CGM mobile app, keeping a close eye on her daughter’s BG numbers.

“It was nightmarish on my end,” the D-Mom recalled. “That pump was working overtime, and even with all that she was still producing an amount of ketones because of how sick she was. There’s zero doubt in my mind that it was Control-IQ that kept her out of the hospital. She would not have been able to be on top of her insulin management in that condition.”

Now, several months later, Shah says she’s “about 90 percent better.” She believes being young, just 22 years old, as well as the technology tipped the scales in her favor to dealing with COVID-19 as successfully as she did. She hasn’t had the chance to get a vaccine in Tennessee by the end of February, but she hopes that will be possible before long.

For others who might be facing COVID-19 or longer-term symptoms, the Shahs say they believe having the best tools and technology to manage diabetes during this time is critically important.

“COVID-19 itself isn’t good, but I almost had an easier time with it because of the technology,” Shah said.

And in case you’re wondering, yes — it is possible to start on a new diabetes device during a pandemic.