COVID-19 and Chronic Illness
Claire Lapat
Spring 2021
Isolation: it is something that the world has become all too familiar with. A novel coronavirus was identified in Wuhan, China in November 2019. The virus spread like wildfire across the world and has caused 106M cases and 2.32M deaths globally. Governments imposed lockdowns and quarantines. The world was at a standstill, except hospitals, which were overwhelmed. Doctors, regardless of specialty, had to act as emergency department or critical care doctors. People were not to go to the hospital unless they were experiencing a life-threatening emergency. On March 8, 2020, then-President Trump declared a state of emergency, and within a week, state governments were instituting quarantines, and schools were moving to remote learning. But even prior to March 2020, before COVID-19 lockdowns, people living with chronic illnesses were already experiencing isolation, long before the pandemic.
In 2020, the National Health Council estimated that 133 million people in the United States were living with a chronic disease. Of that 133 million, 80 million people have an autoimmune disease (1). Autoimmune diseases are conditions in which the immune system mistakenly attacks healthy tissue in a person’s body; the type of autoimmune condition is determined by the tissues or organs affected. Autoimmune diseases are often treated with corticosteroids and chemotherapy, including biological therapies. These medications suppress the immune system to try to stop it from attacking the person’s body. However, a suppressed immune system means that a person is at a higher risk of contracting and having serious symptoms from communicable diseases, such as the common cold or flu. Consequently, an immunocompromised person can easily develop pneumonia from a respiratory virus such as rhinovirus (common cold) or influenza. In 2020, COVID-19 presented a new and bigger fear for those living with suppressed immune systems.
If a patient is immunosuppressed and has baseline inflammation from an autoimmune condition, COVID-19 has the perfect victim. Severe cases of COVID-19 were found to cause a massive inflammatory response and cytokine storm. Cytokines are a broad group of cell signaling proteins in the human immune system. They often act as primary responders to pathogens. However, when cytokines become hyperactive, hence a cytokine storm, they can cause massive amounts of inflammation due to the immune system attacking the body’s own tissues. Pathogens such as SARS-CoV-2 will trigger cytokines to activate the immune system to fight the virus. In some patients, this response is hyperactive and triggers a cytokine storm. This is partially why COVID-19 can shut down organs such as the kidneys. Patients are not out of the woods even when they recover. Hospitals have seen patients who recovered from COVID-19, even if they had mild or no symptoms, present with multi-system inflammatory conditions. MIS-A, multi-system inflammatory condition in adults, and MIS-C, multi-system inflammatory condition in children, are serious complications of COVID-19 that can affect the brain, GI tract, skin, heart, kidneys, etc. According to the Children’s Hospital of Philadelphia, emergency departments across the country have seen a large uptick in children with a history of COVID-19 with severe symptoms consistent with MIS-C (2). The problem with this condition is that it’s often overlooked because MIS-C and MIS-A have similar symptoms to just about every other medical condition in the world. If you have a chronic illness, the symptoms are practically identical. MIS symptoms include fever, low blood pressure (bp), abdominal pain, vomiting, diarrhea, neck pain, rash, chest tightness or chest pain, and fatigue. COVID-19 itself has identical symptoms, leading patients with chronic illness to have persistent paranoia in addition to the anxiety they already feel about being exposed to the virus, and seeing people act irresponsibly has led to more chronically ill people isolating themselves . This lack of human interaction has led to higher rates of depression, substance abuse, and suicidal thoughts. In June of 2020, the CDC took representative panel surveys of adults over eighteen across the United States. The results estimated that approximately 40% of adults reported struggling with increased mental health issues and substance abuse (3). In high-risk patients, 60% reported struggling with increased mental health related to the pandemic (4).
Autoimmune diseases do not stop for a global pandemic. COVID-19 appears to be most lethal in those over sixty-five and those with suppressed immune systems. Three out of five patients who have died from COVID-19 have been disabled and/or had an underlying medical condition. Disability is a broad term that includes anyone who has a condition that impacts their daily life. Autoimmune conditions fall into this category. Patients with autoimmune conditions are often on medications such as methotrexate, 6-mercaptopurine, prednisone, and other immunosuppressants which causes the challenge of not wanting to go to emergency departments due to how COVID-infested those environments were and still are. Due to the fear of contracting COVID-19, many patients do not present to emergency departments for very serious and emergent situations. In addition, doctors have also been working remotely for months, which decreases the quality of care since doctors do not have the ability to get a full picture as to what is going on with their patients through a computer screen. High-quality healthcare feels less accessible since emergency departments seem dangerous and physicians are working remotely. In many conditions, such as inflammatory bowel disease, a physical examination must be done; if the physician does not hear bowel sounds, there is most likely a serious bowel obstruction. Cardiologists, too, are not able to listen to their patients’ hearts and lungs. The overall quality of healthcare has declined, and going to the emergency department has never been more terrifying. This has led to countless deaths from life-threatening yet treatable conditions not related to COVID-19.
Hospitals had to figure out better ways to make emergency departments safe for patients without COVID-19, and they have, although these adjustments have had unintentional drawbacks. For instance, one of the safety precautions that was instituted was not allowing visitors or caregivers/caretakers to accompany patients. This has made going to the emergency department psychologically difficult for many patients, as well as harming patient care. Patients who did go to the emergency department were alone, with only themselves to act as an advocate. One particular patient reported that she went to the emergency department when the balloon in her gastrostomy-jejunostomy (GJ) tube used for enteral feeding, popped. She was given morphine to help with the pain she was experiencing (K. Bish, personal conversation, February 2021). Morphine can make a person feel very spacey and less aware of their surroundings, making it harder to advocate for themselves. This patient had an allergic reaction to a medication that she had received in a previous hospital visit, but the reaction hadn't been documented, and since the patient was on morphine, she could not advocate for herself and stop the nurse from administering the medication that she was allergic to. If the patient would have been allowed a support person (i.e., a parent), this incredibly dangerous error could have been avoided.
I am an immunocompromised person, as well, and suffer from a handful of autoimmune diseases, most notably, Crohn’s disease. Crohn’s is a form of inflammatory bowel disease. with various complications, including bowel obstructions. In December, I was told by my gastroenterologist that I needed to be seen immediately in the emergency department for a bowel obstruction. My mother drove me, but she was told she had to leave or security would escort her out. I was in excruciating pain and was given morphine. The doctor decided to do a CT enterography, a CT scan that looks specifically at the GI tract by using oral and IV contrast. The nurse came in with a liter of contrast mixed in with water, and I was informed that I had one hour to drink the contrast and then I would have to wait another hour before going to CT, allowing the contrast solution to progress through my entire small intestine. I could barely keep down the solution with the contrast due to my obstruction, but I did my best. Once I informed the nurse I had drunk all the contrast solution I could tolerate, someone from CT came to get me only twenty minutes later. Still feeling the effects of the morphine, I could not advocate well for myself and did not tell them it was too soon for CT. Consequently, the contrast did not get through the entire small intestine and the CT could not fully serve its purpose. In that same emergency department visit, the doctor came into my room and started crying; she had wanted to admit me because of my obstruction. However, due to the quantity of COVID-19 patients, there were no beds to admit me, and I was sent home, despite being at risk of an intestinal perforation.
Two weeks after that emergency department visit, I was admitted to Penn Prebyterian Hospital in Philadelphia to surgically remove two sections of my small intestine. My mother was allowed to see me for a short period of time while I was in the post-anesthesia care unit (PACU). Typically, patients are moved out of the PACU fairly quickly. They are moved to the intensive care unit or a medicine unit. Unfortunately, the hospital was full that night and I, alongside many other patients, had to spend the night in the PACU. All of us were alone. Our loved ones had been able to briefly see us for a piece of mind and then they were shuffled out. I spent a week alone in the hospital. No visitors, not even a parent, was allowed in due to the uptick in COVID-19 cases from the holidays.
The more that people disregard COVID-19 rules and guidelines, the more the healthcare system is obstructed for those who need it most. Emergency departments and hospitals have become scary and lonely places. So much risk calculation goes into everything immunocompromised people do. In some ways, quarantine has not changed much for immunocompromised people. Many had to stay home pre-coronavirus at times because of other infections. In other ways, COVID-19 has presented many new challenges. The chronic illness community has been deeply impacted by the COVID-19 pandemic and has left chronically ill patients feeling more lonely than ever.
References
(1) National Health Council. “About Chronic Disease.” National Health Council, 29 July 2014.
(2) The Children's Hospital of Philadelphia. Multisystem Inflammatory Syndrome (MIS-C) Clinical Pathway - Emergency, ICU and Inpatient, The Children's Hospital of Philadelphia, 20 May 2020, www.chop.edu/clinical-pathway/multisystem-inflammatory-syndrome-mis-c-clinical-pathway.
(3) Czeisler, Mark É, et al. “Mental Health, Substance Use, and Suicidal Ideation During the COVID-19 Pandemic - United States, June 24–30, 2020.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 13 Aug. 2020, www.cdc.gov/mmwr/volumes/69/wr/mm6932a1.htm.
(4) “How COVID-19 Impacts People with Disabilities.” American Psychological Association, American Psychological Association, www.apa.org/topics/covid-19/research-disabilities.
6 out of 10 people who have died from COVID-19 are disabled. (2021, Feb 11). The Health
Foundation.
About chronic disease. (2014, July 29). National Health Council.
Autoimmune disease 101. (2017, Nov 1). Genentech.
www.gene.com/stories/autoimmune-disease-101.
Biorender. (n.d.). Cytokine Storm [Diagram]. Biorender.
https://app.biorender.com/illustrations/edit/6062061b653c7f00a0a5fc04
Caffery, M. (2020, Dec. 6). Taking immunosuppressants? Fauci says get the COVID-19
vaccine. AJMC.
www.ajmc.com/view/taking-immunosuppressants-fauci-says-get-the-covid-19-vaccine.
Chronic diseases in America. (2021, Jan 12). Centers for Disease Control and Prevention.
www.cdc.gov/chronicdisease/resources/infographic/chronic-diseases.htm
COVID-19’s impact on people with disabilities. (2020, Dec 17). Massachusetts General
Hospital. (2020, December 17). COVID-19’s Impact on People with Disabilities.
https://www.massgeneral.org/news/coronavirus/Covid-19s-impact-on-people-with-disabilities
Thng, Z. X, et al. COVID-19 and immunosuppression: A review of current clinical
experiences and implications for ophthalmology patients taking immunosuppressive
drugs. British Journal of Ophthalmology, vol. 105, no. 3, 2020, pp. 306–310.,
doi:10.1136/bjophthalmol-2020-316586.