Cindy Grove never expected that she would have to learn how to walk again.
Nor did she expect it to be so difficult to get the help she needed to do so.
Despite the extra care she and her husband put into mitigating any exposure to COVID-19, the 72-year-old South Middleton Township resident felt herself getting seriously ill in mid-November while dog sitting for her son. She said she heard the tales from friends about their brushes with COVID-19 involving symptoms not unlike a cold or the flu.
Grove was not so lucky.
“I was so sick by the time I got to the hospital that I was actually kind of delirious,” she recounted.
Grove had both COVID-19 and pneumonia by the time doctors admitted her to UPMC Carlisle on Nov. 19. She stayed in the hospital for 22 days, eight of which she spent hooked up to a ventilator. She said she gave up at one point only to swear seeing and getting a message of “Girl, you go back” from her father who died six years ago.
Grove stuck with the fight and counts the medical professionals and the people praying for her recovery as the reasons she made it back.
But her battle didn’t end with that stay in the hospital in November, and some of what came after has been just as aggravating for her.
A farm girl who says she has been active all her life suddenly couldn’t stand or feed herself because of her atrophied muscles. Grove said she could barely talk or swallow because of the ventilator tube, and she had shortness of breath because of the effects COVID-19 had on her lungs.
The long-term damage patients recovering from COVID-19 face varies from person to person. Dr. Ankit Parikh, an infectious disease specialist at Penn State Healthy Holy Spirit Medical Center, finds that time can, in fact, heal the disease’s wounds.
“We don’t have exact percentage numbers, but it’s not permanent,” he said of the body’s issues post-hospitalization. “The damage is not irreversible.”
However, recovery can take months. Parikh said mild issues like a runny nose and watery eyes will subside early, but other issues, including loss of taste or smell, chronic fatigue and weakness, and hypoxia (oxygen deprivation) can take much longer.
Especially for patients who end up hospitalized, Parikh said weakness like Grove felt is common since muscles can atrophy after only 72 hours of disuse.
Complications with COVID-19 can also include temporary but acute kidney injury and hypercoagulable, where a person gets blood clots often, which could cause a stroke with large clots or livedo reticularis (like a skin rash) with small vessel clots. To battle these issues, a patient could be on blood thinners for three to six months depending on the location of the clots.
A number of patients will require oxygen due to the damage to the lungs, either using high flow oxygen therapy or via nasal oxygen cannulas, the latter of which can be performed at home.
Obstacles to recovery
Along with the long list of physical challenges Grove said she faced in her recovery efforts, she listed another obstacle in her path — where to get help.
UPMC Carlisle has physical therapy services, but Grove said the hospital didn’t have space for her and actually needed her bed as the number of COVID-19 patients grew and the number of available staff declined due to growing positives.
Because her husband suffered a heart attack the year before and couldn’t lift her during therapy, Grove’s option was to find a nursing home that could provide rehabilitation services.
Even with the help of a social worker at the hospital, it wasn’t an easy task.
“All of the good nursing homes were now full and had no room, or they didn’t want a COVID patient,” she said.
Grove tested negative, and doctors indicated the antibodies and medication given to her during her hospital stay would protect her for about three months, but finding a place amid growing COVID-19 cases was difficult.
Placement and insurance
Parikh said that given a hospital’s pre-discharge test for COVID-19 and the fact that most long-term care facilities should have COVID-19 isolation beds if need be, refusal for placement is often due to either available room, potentially expensive medication the patient may require and — the biggest obstacle — insurance.
Only patients with health insurance, whether private or Medicare, will make it to a long-term care facility. Parikh recalled working with uninsured patients through charity care to provide home oxygen in their recovery or watching as patients opted for motel stays because they couldn’t isolate at home due to others living in the residence or apartment.
Insurance plans will provide for a range of days in either long-term care or rehabilitation, depending on the type of plan. That can be problematic for people who didn’t count on a pandemic when they chose a plan last September.
Getting to the recovery stage can also be compromised without insurance coverage. Parikh said that patients who on ventilators for more than two weeks may end up getting a tracheostomy, where the breathing tube is inserted through a cut in the neck, instead of intubated through a patient’s mouth. Patients who undergo this procedure and have insurance are sent to long-term care facilities, but those without insurance must stay in the hospital, where the risk of infection is higher.
“The way the insurance works, you can’t change the plan in the middle of the year,” Parikh said. “They might not have expected this, and now they’re stuck with issues and no coverage.”
Grove said she did have insurance, and eventually one nursing home in Dauphin County did accept her, though it was an experience she’d like to forget. She found herself fighting for the basics from a shower to a diet that would fit her diabetic needs, despite already having to fight to get herself back up and moving.
Grove is thankful that at that time she had two things that not everyone might have in those circumstances: her wits and close contacts.
A call on speaker to a friend working at Thornwald Home helped her get the shower she needed after a lengthy hospital stay, and her will to fight helped her recover more quickly as a physical therapist met with her three times a day.
It was another friend’s daughter-in-law working at Fox Rehabilitation who finally helped get Grove out of the facility and set up with in-home occupational and physical therapy, which she continues today.
For all that she fought to stay alive and eventually to get out of the place she hated, Grove said she felt lucky to be able to do even that.
“People who may not have all their faculties with them, they’ll get stuck in those places,” she said.
Grove said her doctors believe she’s well ahead of the curve when it comes to recovery. She continues to work on maintaining her balance and building her strength and stamina. She still can’t smell or taste anything — a side effect of COVID-19 — and she said that could stay that way for a few more months.
She’s thankful for what she does have: a husband who cooks, helps in her therapy and learned how to use the washer, as well as the foresight to have put up Christmas lights too early in November before she got sick.
She said she also makes sure she thanks the people who got her to where she is. She sent her own original oil paintings and cards as thank-you’s to the nurses and doctors who helped treat her, even getting a call back from a surprised doctor who opened her card just 10 minutes previously.
“These doctors and nurses are so stretched thin, maybe just a thank you helps,” she said.
Historic look at pandemics
Before Pennsylvania officially got its first positive COVID-19 test, I took a deep dive into the history of modern global diseases.
Although the attempt was to show how other diseases spread and how they were contained, it was just as educational for me to learn what exactly was considered a pandemic and what wasn't, as well as what failed and what worked in mitigating the diseases.
In the last two decades, the bulk of the information regarding the causes, failures and successes of global spread of diseases was available after the concern and media attention had passed. Unlike the COVID-19 pandemic, which has lingered and surged over the last nine months, the others were better contained and more easily fell under the radar of those unaffected by the disease.
Just as it was interesting to read scientists' studies of what transpired with these other modern diseases, it may be as much of, if not more of a lesson in the future when officials determine the exact spread and rise across the globe, if politics in various countries allow such studies to take place.
Pushing for more information
The scope of information that the state Department of Health had to handle and make public was unprecedented. The department may have been used to reporting data on the seasonal flu and West Nile Virus cases, but a global pandemic was simply on a different scale.
And though the department has steadily grown its output of public information and data, not all of that was available at the beginning of the spread of COVID-19.
One area of chief concern was long-term care. With the governor's shutdown order, the majority of the worst cases were being detected in nursing homes.
The problem was, the only information the Department of Health offered to the public was a look at cases in each county - not by facility.
I think it was important for our newspaper, as well as plenty of others, to keep noting discrepancies and the need for further information that readers and residents wanted as concerns rose over the disease. With push from residents and others across the state, the department now has weekly updates to facilities (though they are still self-reporting) as well as other breakdowns of information covering age, co-morbidities and hospitalizations.
Need for primary care
When COVID-19 hit Pennsylvania and the country, there were obvious concerns over certain areas of health care: emergency treatment, hospital capacity, long-term nursing care, finances and availability of personal protective equipment.
With Gov. Tom Wolf's shutdown order, however, primary care physicians sounded the alarm about a potentially unseen danger: waiting for non-COVID care.
Dr. Baxter Wellmon of Wellmon Medical Associates in Shippensburg contacted The Sentinel in hopes of getting his and other patients back to see their doctors, whether that meant just a phone call or assuring them of safety measures for an in-person visit.
From a reporting standpoint, it's not often we hear from doctors directly without having contacted them first, but Dr. Wellmon clearly had a passion for getting his message out that he hoped would save lives.
One nurse's sacrifice
Especially in the early months of COVID-19, convincing residents of the dangers of the disease was a difficult task.
With the shutdown order, few people knew someone first-hand who had the disease or worried for someone in an affected long-term care facility, and a pandemic on this scale had simply not been experienced by most people living today.
That's why it had been so important to hear from someone who both saw patients struggling with the disease and who struggled with it herself.
Jan Mercer, who volunteered to move from her department to help with COVID-19 patients at Holy Spirit Hospital, then-owned by Geisinger, was very open about the fear she saw in patients and her own fear she experienced after her diagnosis and hospitalization.
And, perhaps more importantly, she was very detailed about the aftermath of the disease - how it wasn't just the brush with death at the hospital, but its lasting effects on her lungs about which she wanted people to know.
Her story was the clearest sense early on just what dangers this disease truly posed to health care workers and residents in general.
Learning a new story
As coverage continued with COVID-19 and the election, The Sentinel staff got chances to write something a little different with a different focus. With our paper's Inspire quarterly section, we've been able to profile people known and unknown with stories we may not have heard before.
I hadn't heard Don Geistwhite's story before.
When I first arrived at The Sentinel as just a cub reporter, I was assigned to cover two municipalities - Mechanicsburg and Middlesex Township. The latter is where I would meet Geistwhite as one of the township supervisors.
More than 10 years later, I'd finally learn more about the man and his unusual path in the military. Not every story made it to print, but it was a joy to sit down with him and hear about the colorful characters he's met, all at a time when connecting with someone new (or someone from the past) wasn't an easy achievement.
Email Naomi Creason at firstname.lastname@example.org or follow her on Twitter @SentinelCreason