KENMORE, N.Y. — As we approach year three of COVID, cases and hospitalizations are dropping, even as the daily death toll remains high.
But those on the front lines point out that we'll be feeling the impact of the disease long after the pandemic is officially over.
"There are so many questions, and there's so much fear, and there's so much frustration," said Dr. Michael Gough, a pulmonary critical care physician at Kenmore Mercy Hospital, when describing those with so-called "long COVID" symptoms.
An estimated 31 million American adults continue to experience symptoms weeks, even months after the virus left their bodies.
Members of the Palliative Care Team at Kenmore Mercy had an idea during a meeting last year. There are so many questions surrounding "long COVID" and other aspects of the pandemic, and they decided to create a support group.
"We didn't know what we were going to do," said Kathy Kanaley, a patient advocate at the hospital. "So we thought, you know, what the heck, we're going to throw it against the wall and see what sticks."
Kara from West Seneca says the experience has been "life-changing."
"It gives you hope," Kara said. "It gives you resources and tips on treatment, ways to cope, and, you know, sharing your stories, not feeling alone. That connection that you need is there."
Kara thought she had beat the virus when she contracted it early in the pandemic. But then the "long COVID" symptoms showed up: inflammation throughout her body, extreme pain, fatigue, memory loss, and eventually encephalitis.
"I told my husband if it doesn't let up in six months, I could not live," she said.
Kara found comfort through the support group.
"It gives you the power, the hope, the ways to cope," Kara said. "The survivors coming around you, embracing you, and trying to say you're going to be OK, even though they might not be. But it gives strength in doing it."
Nurse Mary LaMartina, who helps lead the group, said she tries to listen more than anything else.
"I love this group," she said. "I'm so excited to recommend it to anybody in the community."
Mary said many patients are made to feel like their symptoms aren't real. They're told to give it time, or that they're being a hypochondriac.
"It will validate that everything you're feeling are your own feelings, and your right to that," Mary said. "And it will offer you concrete ways to be an advocate for your own health and your own wellness."
The group, which meets virtually and in person when COVID restrictions allow, typically includes guest speakers on topics ranging from nutrition to physical therapy and everything in between.
Mary and Kathy help with setting up physician appointments and referrals. Dr. Gough usually provides the latest medical update.
"We're here to help however we can," Dr. Gough said.
Kara encourages others to join.
"Parts of me are stronger and wiser," she said. "And I'm better physically, too, which is an amazing thing."
The team at Kenmore Mercy hopes to create a similar support group for associates in the near future, since the health care workers have been on the front lines of the pandemic for so long.
The free COVID support group meets on the third Thursday of each month from 4 p.m. to 5:30 p.m. Anyone can sign up by calling the Kenmore Mercy Patient Care Services line at 716-447-6211.
OTHER RESOURCES
- NY Project Hope
- Call 1-844-863-9314
- Visit nyprojecthope.org
- Online support group for COVID 'longhaulers' every Tuesday at 6 p.m.
- Survivor Corps - Visit www.survivorcorps.com
- NYS Brain Injury Association - Call 1-518-459-7911