‘I want to live’: Long covid patients battle debilitating symptoms in Western Pa.

Covid-19 stole Lisa Merlo’s lungs, limbs — and nearly her life.

But it wasn’t done.

The 57-year-old West Deer resident continues to cope with the disease’s latest attack on her body: long covid.

Merlo said she was told she had a 20% chance of living after a covid diagnosis in 2020. This led to a four-month hospital stay. She had to have multiple amputations, including part of her left leg below the knee, right toes and three fingers on her right hand.

Merlo is among millions of people nationwide who have been stricken with long covid. Four years after covid first hit the U.S., long covid continues to puzzle and overwhelm the health care system. As researchers seek answers, clinicians in Western Pennsylvania’s leading hospital systems report an increased flow of patients with long-covid ailments — from never-ending headaches to depression and sleep problems — with many people unable to shake off the symptoms.

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“I think we’re really in the infancy of understanding this,” said Dr. Amesh Adalja, a Pittsburgh-based infectious disease specialist and senior scholar at Johns Hopkins Center for Health Security. “A lot of the effort with long covid is separating out other conditions.”

With no preexisting conditions, Merlo thought she would spend only one night in a Pittsburgh-­area hospital when she was admitted Dec. 17, 2020.

“It hit me in the lungs,” she recalled. “I had difficulty breathing, and it got progressively worse.”

She recalled feeling intense fatigue just from walking from the couch to her bed.

At the hospital, she wasn’t getting better. Merlo was taken to the intensive care unit just before New Year’s Day.

“I think that’s when it really hit me … this is really serious,” said Merlo, a senior sourcing manager for PPG in Pittsburgh.

A CT scan revealed blood clots in her lungs. Her fear skyrocketed.

“Oh, my God,” she thought. “Am I gonna die?”

Suffering heart pains, Merlo said she was asked whether she would be willing to go on a respirator.

“I want to live,” she said, accepting the help.

But the success was short-lived. The respirator still wasn’t providing enough oxygen.

To survive, she needed to go on life support around Jan. 2, 2021, at a different hospital. At that point, she said she was told by medical professionals that they didn’t know whether she would live.

Life-support measures keep people alive until their body is able to function on its own. They can include mechanical breathing with ventilators, for example.

Merlo said she didn’t want to disclose the locations of the hospitals she received care from.

She hit a low point in January 2021, when a priest visited her to give last rites. Her condition started to turn that same day when she was finally able to see her kids.

“I started feeling better that day,” she said.

She was taken off life support on Feb. 8, 2021, and went home from the hospital that April, but it was only the beginning of her long covid journey.

She’s far from being the only one.

What is long covid?

A patient is diagnosed with long covid when their symptoms have lasted more than 12 weeks, said Dr. Michael Risbano, director of the Post-Covid Recovery Clinic at UPMC.

The most common symptoms the clinic sees are brain fog, shortness of breath, post-exertional malaise and exercise fatigue, he said.

Long covid technically can affect any organ system. Risbano said he has seen patients display symptoms such as loss of taste and smell; aches and pains in the chest or joints; and changes to one’s skin such as rashes, discoloration and hives.

Those with covid symptoms for less than three weeks are considered to have an acute infection, and those with symptoms between three and 12 weeks are considered to have a subacute infection, he said.

Risbano, who is director of the invasive cardiopulmonary exercise testing program and a pulmonary vascular disease doctor, said long covid is still an issue.

The recovery clinic probably gets 10 to 15 new referrals each week, and it’s been “fairly steady” since the clinic started seeing covid patients over three years ago, according to Risbano. The clinic has seen thousands of people.

Risbano believes the current covid strain is less severe than it was in 2020 and that there is a correlation between the severity of covid infection and those who are diagnosed with long covid.

“I don’t think long covid is going anywhere,” he said.

Since it opened in April 2021, more than 1,800 patients have come through Allegheny Health Network’s Post-Covid-19 Pulmonary Clinic, said Dr. Briana DiSilvio, its director.

But DiSilvio said a patient going to the hospital to be treated for covid doesn’t necessarily mean they’re more likely to experience long covid symptoms.

Although she agrees there’s a link between severity of illness and long covid, she cited examples of patients developing long covid after treating their illness at home and with over-the-counter medication.

“We have to look deeper,” she said. “What is the root cause?”

Life-changing symptoms

Natalie DiBenedetto was working two jobs when she contracted covid in December 2021. Now, because of her long covid symptoms, she’s unemployed.

A professional musician, DiBenedetto, 49, of Emsworth had to leave her part-time music director and organist job at a Lutheran church in Gibsonia as well as her full-time secretary job at Avonworth Elementary School. She’s a single mother with three children.

“You have to have the ability to perform the full task, and I didn’t have the capacity to handle being in group environments after noon,” she said. “Trying to work hurt me to the point where I was ineffective as a human being.”

Before she contracted covid, DiBenedetto said, she used to be able to do “anything.” Now, she has consistent daily memory issues and “constant fatigue,” she said. She’s been a patient of UPMC’s covid recovery clinic.

“I’ve had a migraine since Christmas Eve 2021,” she said. “I never had a migraine before in my life.”

DiBenedetto said she had previously had a bad reaction to medication that was given to her for covid and has since chosen not to take any. Instead, she is an acupuncture patient and prefers home remedies.

She contracted covid a second time in November, which set back her long covid recovery.

A Facebook group for long covid patients has provided DiBenedetto and others a community where people discuss care.

“This is not just me,” she said. “There are a lot of people experiencing long covid symptoms, and they’re really challenging themselves to keep performing at what they were previously.”

‘It’s horrible’

Brenda March had a similar experience — except she doesn’t remember it all because she was in a medically induced coma for more than two months.

“I was lost,” she said. “I had no idea it had been that long.”

March, 49, of West Sunbury in Butler County, visited the emergency room four times because she was having trouble breathing after catching covid in November 2021. On the last visit, she was admitted and intubated. The next thing she remembers is waking up from the coma on Jan. 21, 2022.

“It was very strange because I couldn’t talk when I first woke up,” she said, referring to the trach tube. “Even to this day, I feel that … everyone else has continued with their life, and I’m stuck here.”

March said she was told after she woke up that her husband and three sons were allowed to say goodbye to her on New Year’s Day. They were told she wouldn’t live. That was the first time any family had seen her since Thanksgiving, she said.

March had trouble walking after she woke up. She needs an oxygen tank to assist with her breathing. She also woke up with severe nerve damage to her right hand as well as nerve pain everywhere in her body.

Covid has turned her life upside down.

“I was a perfectly healthy person,” she said, referencing her three boys, many chickens and animals that she cared for. “The nerve pain is constant. It feels like you’ve got things crawling on you — sharp pains. It’s horrible.”

Before shecontracted covid, March said, her family wasn’t overly fearful of contracting it. She used to always cook, clean and do laundry around the house.

“I can’t even lift the pan out of the oven because I don’t have the strength in my right hand to lift it,” she said.

Her husband and sons have assumed the laundry and cooking duties.

“I have a feeling I’ll have years before I even come close to what I used to be able to do — if I ever can at this point,” she said.

‘You’re scared to death’

Merlo has returned to work full time at PPG. She still uses an oxygen tank to help her breathe at night.

During recovery, she said, she was so weak she couldn’t hold a pen.

“I was pretty much a mess,” Merlo said. “My anxiety was through the roof.”

Because of life support, she experienced infections, reduced circulation and tissue damage that led to amputations. Her left leg was amputated below the knee, and she now wears a prosthetic. Her right toes were amputated, along with three fingers on her right hand.

She said she had a difficult time getting off the respirator because her heart rate would drop each time they tried. That led to her getting a pacemaker.

“I had to learn how to swallow,” Merlo said of the obstacles she faced. “I couldn’t eat. I couldn’t drink.”

She said she was getting to the point where she didn’t want to try anymore.

“You’re lying in the hospital — you’re scared to death because you can’t breathe,” Merlo said.

She had several hospital and rehab stays throughout 2021. During the process, she said, medical professionals kept checking on her mental state.

“I kept telling them, ‘I wanna live,’ ” Merlo said. “I wanna dance at my kid’s wedding.”

Her daughter is getting married in September. Although she will always have damage to her lungs, Merlo said she has her life back.

“I really had a lot of time where I was thinking about why I was saved: Why am I here? What am I supposed to do?” she said. “There’s some reason God kept me here. There’s something I’m supposed to do.”

Common misconceptions

March said it’s hard to understand what long covid patients experience.

“It’s a battle,” she said. “It hasn’t ended. We do one hurdle at a time.”

Her experiences have been eye-opening, she said.

“I’ve felt so useless, more than I ever have in my life,” March said. “To go from completely healthy to not being able to do half of what I used to do … wow, it’s been hard. The pain’s constant.”

As of now, there’s no objective test that tells someone definitively whether they have long covid, Risbano said.

“What we wind up relying on is this subjective change in symptoms,” he said. “And these symptoms, for most people, haven’t been recorded prior to their infection … so we don’t have anything to compare it to.”

Some long covid patients in their 20s are found to have the physiological limitations similar to those found in patients in their 60s or 70s, DiSilvio said.

While some cases of long covid come from the exacerbation of underlying medical conditions, that doesn’t mean long covid is exclusive to those individuals, Risbano said.

He cited examples of patients he has seen of all ages — including 19, 26 and 40 — who haven’t had any other medical problems but are now “relatively debilitated.”

“They can’t function the way they used to before covid,” Risbano said.

Adalja said he believes people in the medical community, including himself, see long covid as an umbrella term.

“It’s not going to necessarily be a one-size-fits-all answer and a one-size-fits-all solution,” he said.

DiSilvio pointed out the cases of people who got covid two or three years ago and still have not recovered to their baseline.

“Some are nowhere near the functioning level they were,” she said. “They’re struggling to wonder if they’ll ever feel like themselves again.”

Merlo said when she got covid, she believed a lot of people were on the fence about how serious it was. Her experience encouraged some people to get vaccinated.

Merlo said she believes not enough attention is being brought to the disease.

“It really just makes you look at your life very differently,” she said. “I know it’s real.”