PATIENT PERSPECTIVE

From Patient to Patient-Advocate

My life with long COVID

April 7, 2023 | VOLUME 1, ISSUE 1

In March 2020, Kelly Keeney was living a busy, active life. The mortgage processor and former chef had recently launched a dog training company and looked forward to transitioning it into full-time work.

“I was going to have one job for the first time in almost 30 years,” she recalled with a laugh. However, despite taking extra care with her clients amid early news of COVID-19—including bringing a measuring stick into training sessions to ensure she stayed at least 6 feet from others—3 days into the official lockdown in her area, Kelly started to experience symptoms. And very quickly, her illness became severe.

“There were times when my pulse ox was well below 80, and I should have been in the hospital,” she said. “There were days when I said, ‘Ok, well, I’m probably going to have to wake up in the middle of the night and call the ambulance.’”

“I lived alone with my dog, and my family was checking on me; my friends were checking on me. They’d bring me things, but they’d wait by the fence, and I’d have to walk across my lawn to get the food or whatever they brought me. And I didn’t realize until recently that they were doing that because they wanted to see if I could actually walk to the fence.”
—Kelly Keeney

Fearful of entering the already overcrowded care system, Kelly instead relied on the assistance of family and friends, who developed unique ways of ensuring she was safe without being able to get close to her.

“I lived alone with my dog, and my family was checking on me; my friends were checking on me,” she said. “They’d bring me things, but they’d wait by the fence, and I’d have to walk across my lawn to get the food or whatever they brought me. And I didn’t realize until recently that they were doing that because they wanted to see if I could actually walk to the fence.”

Post-COVID complications

Between lengthy periods where she could do little but sleep, Kelly tried to continue working as a mortgage processor and transition to video-based dog training. After about a month, she could officially return to work—but it soon became apparent that her experience with COVID was far from over.

Kelly recalls her boss saying to her, “I don’t know what’s going on. I’m asking you to correct the emails you’re sending me, and you don’t even see the mistakes. You don’t remember what I ask you to do. We’ve been working together for 27 years, and I’ve known you since you were born. You don’t do this.”

“I just started crying. I thought I was going crazy. I hadn’t told anybody about the extra things that were going on, and, honestly, I was in such a blur. It was almost like I didn’t realize a lot of the symptoms were going on until he brought them to my attention,” stated Kelly.

A short time later, Kelly viewed a segment on 60 Minutes about long COVID. It shed light on what she was experiencing—and led Kelly down a long and challenging path to diagnosis, treatment, and personal advocacy.

Medications and other supplies Kelly Keeney uses to manage her long COVID

Day-to-day management of Kelly’s long COVID requires a host of medications and other supplies, in addition to lengthy regular appointments with a variety of clinicians.

Navigating clinical care

Kelly’s long COVID symptoms run the gamut from pulmonary issues, including nodules on her lungs, to neurological and autoimmune symptoms, including cognitive dysfunction, extreme fatigue, focal seizures, edema, and more.

And although Kelly considers herself “very lucky” to have a highly engaged care team now, her experiences with clinicians have not always been positive. One clinician even told Kelly that COVID has never really killed anyone.

“[The clinician] told me I didn’t need to worry so much,” stated Kelly, who was seeing objects in her peripheral vision, couldn’t focus on screens, couldn’t read, and had massive headaches and horrible fatigue—and many other symptoms. “He never examined me. He never took his stethoscope out. He just said that I needed to meditate and gave me a handout for a place where I could order DVDs to meditate with.”

“I am getting very skilled at knowing how to present my thoughts and ideas about ‘what might this be’ and asking ‘could we do this test’ without pushing back on someone’s ego in such a way that I’m going to get shut down. Sometimes I lie. I say, ‘My friend, she has her PhD in nursing, and she wants me to ask this question,’ so at least it isn’t coming from me, this stupid patient. And that’s sometimes how I feel.”
—Kelly Keeney

Among Kelly’s network of contacts with long COVID, many cite extreme challenges in pursuing post-COVID care due to incomplete or incorrect documentation. They experience posttraumatic stress from navigating the problematic health care landscape and dehumanizing experiences of having their pain dismissed.

Even now, with an incredible multidisciplinary care team, Kelly quickly notes that managing her care, and ensuring she can present all of the information in a way that will provide results, has become a full-time job. Preparing for appointments can take her from 1 to 2 hours.

Advice and advocacy

After years of navigating the health care environment and extensive research into her condition, Kelly turned her attention to advocating for others with long COVID. Her advocacy includes moderating comments and activities on Facebook for the 60,000-member Long COVID Support Group. She also has written a book in the style of Dr. Seuss that, she hopes, will entertain and educate about the long COVID experience.

Her most important mission, however, is advocating with legislators and medical associations for continuing medical education around COVID-19—and for licensing authorities, health care organizations, and others to hold practicing clinicians accountable to regular updates.

But even as the field catches up with the ever-changing and ever-growing body of research into long COVID, Kelly has other tips for clinicians to help them improve their care of this patient population:

Tip one: Offer other resources

Support groups are a lifeline for many patients with long COVID, and according to Kelly, clinicians can play a more active role in helping patients find these communities. She recommends that clinicians keep a running list of resource information—and work with their patients to discover new options—that they can share alongside a treatment plan.

“If you see long COVID, you might want to do a virtual appointment prior to meeting the patient so you can hear the whole story. I know it’s a lot to ask, but even if it’s just saying, ‘Hey, I see long COVID in your chart…Can you give me a breakdown of the top three issues we need to hit first? Tell me your story.’ That means a lot.”
—Kelly Keeney

One such site is CaringBridge, which enables patients to give updates on their condition that are visible only to invited family and friends; request assistance with tasks from the CaringBridge community; and keep a secure digital record of their medications, appointments, and notes.

“[CaringBridge] is [one] of the most important resources I wish I’d had,” she said. “It would’ve saved my brain and me from the trauma of reliving every doctor’s appointment and talking about my symptoms and every test I had to have. This is my favorite [resource] for those of us who are really finding it difficult, especially women, to ask for help.”

Tip two: Look at the bigger picture

Telemedicine has played a major role during the pandemic, and Kelly believes it can help clinicians more effectively care for patients with post-COVID conditions.

“If you see long COVID, you might want to do a virtual appointment prior to meeting the patient so you can hear the whole story,” she said. “I know it’s a lot to ask, but even if it’s just saying, ‘Hey, I see long COVID in your chart…Can you give me a breakdown of the top three issues we need to hit first? Tell me your story.’ That means a lot.”

Kelly also recommends that clinicians engage in a learning partnership with their patients by regularly asking about what they’ve seen within support groups and from other patients in their network. This anecdotal evidence can help clinicians better contextualize the research into long COVID and enables patients to take a more active role in their care.

Tip three: Engage with empathy

According to Kelly, the most important thing a clinician can do is practice the “care” side of health care: “The biggest thing for us is just to be acknowledged and understood.”