My Continuing Journey With Long COVID

I had my first COVID-19 infection in November 2020, which began my journey with long COVID, also known as post-acute sequelae SARS-CoV-2 infection (PASC). It persists today, almost three years later.

In spring 2022, I had a second infection. My first infection was the sickest I’ve ever been in my life! With the second infection, coupled with long COVID, my primary care physician (PCP) immediately started me on nirmatrelvir/ritonavir (Paxlovid). My symptoms decreased immediately, and it felt more like a bad sinus infection. Around day three, I began having intense gastrointestinal upset that persisted for about two weeks. I became severely dehydrated and weak. I also had a relapse of fatigue. As part of an office exam, I had a 12 lead ECG that showed a prolonged QT that did not resolve until one year later.

My life has been forever changed because of COVID-19. I celebrate many successes in controlling some persistent symptoms, but I also work hard to manage relapses and even changes in some symptoms. I grieve the loss of things I once did, such as endurance training for Iron Man competitions. I now have PTSD and survivor’s guilt. COVID-19 has taken so much from me, but I remain vigilant in my pursuit to find health, healing and restoration from long COVID.

What are the symptoms of long COVID?

Shockingly, a multitude of symptoms are now defined as long COVID that can last weeks, months or years post-infection. Some symptoms persist, may go away or even may return. As I look back, I have had fatigue interfering with daily life and post-exertional malaise, difficulty breathing and shortness of breath, chest pain, tachycardia and palpitations. New problems with long COVID that I now manage with medications are type 2 diabetes, hypertension, high cholesterol, reactive airway disease and ADHD. I have been able to celebrate symptom-free days, but not symptom-free weeks yet.

I joke with my physicians that I feel as if I have aged 10-15 years in the past three. I laugh as my EHR reads as if I am closer to 70 than 50. We say that in 20 years it will be a great read to see what we learned and did with long COVID. While humor may not work all the time, keeping my mind and heart light helps me move through each day. I also have to learn the changes in my body and work to anticipate any needs as they arise.

Over the past four months I started an additional medication to manage my diabetes and weight. Due to exercise intolerance, we felt a new medication may be helpful. Before this change, I knew what hypoglycemia felt like; now it presents quite differently and rather quickly! Being so in tune with my body is not something I excel at. Being a former triathlete and quite stubborn, I notoriously push my body past what I can endure at times. I am still trying to learn patience with my body and tolerance for the things I cannot control. Yale Medicine published information about long COVID in a question-and-answer format that may be helpful to those who have more questions about the disease.

Accessing Care Challenges I Face

I fear change and my PCP is leaving. I found her during my diagnosis and initial treatment for long COVID, and now she is moving away. She was a comfort and security as we both navigated what and who was best for my care. She assures me I will love the new PCP she is referring me to; hopefully time will prove her right!

My pulmonologist and I have not dialed in exactly what works best for my breathing issues, but we have compromised on how we will communicate, our expectations of physician, staff and patient, and we continue to work on a healthy relationship to manage my care. Long COVID poses quite a challenge as the standard protocols and directives of care may differ and need individual attention or focus. Managing long COVID requires patience and understanding from all involved. The CDC offers information for healthcare providers for managing PASC. The AAPM&R offers consensus guidance for providers who treat patients with PASC. This site is updated as more consensus guidance statements are developed.

Long-Haul Clinics

I have looked at a lot of long-haul clinics and what they offer, even reaching out locally in my hospital system. Most clinics offer a multidisciplinary approach to care, helping the patients navigate the specialists they may need, which is not limited to medical but includes nutritional, physical and mental health support. Post-COVID Care Centers - Survivor Corps provides a fairly comprehensive list of post-COVID care clinics throughout the U.S., along with a map. They also have a basic guideline in place for directing care. Unfortunately, this map highlights a challenge many patients with long COVID face: accessibility of care. For me, I knew about a local long-haul clinic by word of mouth, since all available clinics are not on one comprehensive list. I reached out to the Department of Health & Human Services to inquire about local resources. The response took a week, but she kindly thanked me for reaching out, while also sharing a link to resources, education and information: COVID.gov - Long COVID.

If you are seeking a long-haul clinic, here are some things to consider as you research whether or not the clinic will be a fit for your care needs. When I reached out to my local long-haul clinic, I sought information on these topics:

• What are the short- and long-term goals of the program, and how is care individualized for each patient?
• What type of providers (physicians, advanced practice providers) treat the patients?
• How much time is alloted for each patient's appointment?
• What support groups are available for patients and families? Are they in person or virtual?
• What financial assistance do they provide for patients who face financial challenges?
• What support do they offer for clients who may need help filing disability claims?
• How do they keep up-to-date with changing recommendations for managing PASC?
• What activities do they provide to contribute to the growing body of evidence for PASC?
• How do they work with other clinics and share information to implement best practices?

With this information, you should be able to discern if a long-haul clinic will be a fit for your needs. My long-haul clinic does offer a virtual support group, but I have not decided if I will join. I also discovered that my physicians didn’t know much about the long-haul clinic or how to access the resources the clinic can provide. My PCP and I decided not to enroll in the long-haul clinic, since we already have the necessary practitioners in place to manage my care.

Vaccinations/Boosters

The CDC information regarding vaccinations includes specific guidelines for people who are immunocompromised, information on allergic reactions, and safety and monitoring. I received my first two vaccinations after my first bout with COVID-19, and I sustained significant changes and increases in health issues with each vaccination. My healthcare team and I decided it was not in my best interest to pursue any boosters. In the beginning, I felt that vaccination was the best decision for me. I still stand by my decision to receive the first two vaccinations, but I am very conflicted about the effects and safety issues they caused in my body. The CDC tracks the number of COVID vaccines that have been administered in the United States.

What about work?

It was shocking to me in spring 2023, when I had some acute issues and changes in my breathing. I went to see my pulmonologist, and his staff asked if I would be applying for disability. I asked, “Why would I do that as I am still able to work?” I thought: Why would I want to sit at home and think about all that has been lost and how bad I feel at times? For me, being a nurse is who I am, even on my hardest days. When I can go in and care for my staff or patients it allows me to take the focus off me and direct it elsewhere. My purpose, my passion, helps me push past the bad times. But for so many that is not the case. Over the past few years, the government has defined long COVID and established guidelines for long COVID as a disability: Guidance on “Long COVID” as a Disability Under the ADA, Section | HHS.gov

Long COVID - What does this mean for our workforce?

Many individuals have not returned to work, because they have long COVID. Recent data estimates 15% of unfilled jobs are due to long COVID: Is ‘long Covid’ worsening the labor shortage? The number of individuals with long COVID has surpassed the number of individuals who have died. Total U.S. deaths as of September 2023 are 1,140,278, and 27 million - 33 million Americans have long COVID. With an already taxed workforce even before the pandemic, what does this mean? We feel this shift in every area of life, not just in healthcare. There is some great work being done to collect resources to help those living with long COVID. The Administration for Community Living (ACL) regularly updates its links for support and asks others to share resources they may have. Following are a few links they share:

• “Services and Supports for Longer-Term Impacts of COVID-19 Report” outlines federally funded support and services that can help those experiencing the longer-term effects of COVID-19, including long COVID and its associated conditions, mental health, substance use and bereavement.
• “National Research Action Plan on Long COVID” proposes a comprehensive and equitable research strategy to inform our national response to long COVID.
• The Office of Disability Employment Policy (ODEP) at the Department of Labor launched a webpage that includes resources on long COVID organized by stakeholder groups, such as workers, youth and young adults, and employers. The resources include information on requesting and providing workplace accommodations for individuals with long COVID. In addition, ODEP released a blog discussing the impact of long COVID on workers with disabilities.
• A new issue brief from the National Assistive Technology Act Program’s Technical Assistance and Training (AT3) Center describes how AT Act programs funded by ACL help individuals experiencing long-term effects from COVID-19 and provides examples of common assistive technology solutions.

A study with Brazilian healthcare personnel (HCP) showed that approximately 27% of HCP who had been diagnosed with COVID-19 developed long COVID. This information certainly has implications for the nursing workforce since long COVID is more common in women, and the majority of nurses in the U.S. are women.

What works for me?

I have found numerous alternative medications and combined them with modern medicine. This approach has been successful for me. I am very open and honest with my healthcare team on what I do and research how and why alternative medications may or may not interfere with the modern medicine treatments they prescribe for me. For example, with my headaches, after 2.5 years, I have been able to have a full five days with no headaches and rare use of “my big drugs.” My neurologist prescribed naratriptan and metoclopramide for bad migraine days, and I give myself a monthly injection, Aimovig, for migraine control. When I first started seeing my neurologist, he treated me as if I had a concussion. This protocol included supplements that I continue to use, such as turmeric, CoQ10, magnesium and B-complex vitamins.

In March 2023, the AAPM&R PASC collaborative released guidelines for care and management of the neurological sequelae for those with post-COVID infection. Much of what is included in the guidelines are interventions my neurologist prescribed. Also, during this time, my PCP suggested I see a craniosacral therapist. We focus on tissue release, vagus nerve stimulation, cupping and body work. This work, combined with modern medicine, essential oils, grounding and supplements, gives me the tools I use along with the help of my spouse to manage many of my lingering symptoms. Long Covid: A Complex Health Crisis That Needs Individualised, Integrated & Holistic Support – the Craniosacral Therapy Association.

Long COVID - The Future

The response to contain COVID-19 was aggressive and felt immediate. However, many of us living with long COVID feel forgotten or left out. It has been reported there are over 90 long COVID support groups in 34 countries, most led by volunteers. In March 2023, the largest grassroots organization, Survivor Corps, reported it will no longer update its site. The U.S. has allocated $1 billion in research funding for the RECOVER initiative, but study enrollment has been slow to get started. Research findings for managing long COVID are being released, but sometimes what works for one person does not work for another, which can be very frustrating for those living with long COVID. One physician reports that in 10 years, long COVID will be a disease, and we will have more resources to help manage and support it, but for now we must live through this time of discovery. We have to live, learn, share, experiment and be open minded. For me, research and learning are great, but I have to limit my time and efforts on this work. It can be mentally taxing when all you wish for is a return to normalcy.

I’d love to hear what you are doing to overcome the challenges of living with long COVID!