COVID-19: The Patients’ Perspectives (2020)

The coronavirus disease 2019 (COVID-19) pandemic has caused dramatic upheaval across all sections of society and across all specialities of healthcare. Transplantation sought to understand the perspectives of transplant recipients. Dave White: COVID Positive After Renal Transplant in 2015 Transplantation: Please describe yourself and your life over the past couple of years. I work in Brooklyn, NY, and live in Hillcrest Heights, MD. I received a kidney transplant from a deceased donor in the summer of 2015. After my transplant, I rigorously followed the recommended guidelines, to protect myself from infection (wearing a mask, washing hands frequently, using antibacterial gel, avoiding sick people, and since I do not own an automobile, taking extra precautions when riding mass transit). I did this for many months, but as the years passed, my vigilance gradually and somewhat inevitably waned. Transplantation: What happened when you heard about the pandemic getting close to home? When the COVID-19 pandemic struck New York City like an invisible tidal wave, I did my best to resurrect my fastidious infection control habits. I attempted to get tested for SARS-CoV-2 infection when New York’s infection and mortality rates were soaring, but, even in my immunocompromised state, I was unable to schedule an appointment as I was not experiencing any COVID-19 symptoms. I was called back and rescreened twice without having an appointment scheduled. On May 12, 2020, I was finally able to get swab-tested at a walk-in testing center in Brooklyn, NY, and on the following day, I learned that my results were positive. Transplantation: What information did you have about COVID and Transplantation and how did you respond? I had read about the kidney transplant recipients hospitalized with COVID-19 at the Montefiore Medical Center who were disproportionately people of color, male, median age 60, recipients of a deceased donor kidney, and hypertensive (1). Imagine my feelings of powerlessness and anxiety as I dutifully counted down the 15 d of self-quarantine that were ordered by New York state knowing that I fit all of those categories? Thankfully, I remained asymptomatic and was able to return home to Maryland safely after adding an extra 10 d to my quarantine to ensure that the presence of the SARS-CoV-2 virus had been completely eradicated from my system. Patrick O. Gee: Remaining Concerns After Hospitalization for COVID Transplantation: Please describe yourself and your life over the past couple of years. I am 3 y into a kidney transplant. I received my new organ on April 21, 2017, after 4 y of peritoneal and in-center hemodialysis. This date will remain in my memory as the onset of traumatic experiences to follow. When I woke up from surgery, my kidney was not functioning due to a delayed graft function. I had to begin a 24-h regimen of hemodialysis, alternating every other day until the kidney started to function on its own. My optimism was high until the fifth day after the transplant; I received news that I would need surgery to remove a blood clot in my neck. Three days after the blood clot surgery, I was hemorrhaging internally, and I would need surgery to correct it. Seventeen days after updating the bleeding, I would need surgery to create a laparoscopic peritoneal window to drain internally. After a total of 4 surgeries and 33 d of hospitalization, I transferred to an in-patient rehabilitation center for 6 d and was released home afterward. My new organ finally woke up on the 47th day. Before my kidney transplant, I had not been able to urinate for two and a half years. That first drop of urine that I passed felt like I had just won the lottery! My life and my advocacy have since taken a turn for the better. I am now an empowered Hope Dealer in the kidney community after overcoming the greatest challenge of my life. I now live and work in North Chesterfield, VA. Transplantation: What happened to you as the pandemic arrived on your doorstep? Who would have thought that waking up on January 1, 2020, with feelings of optimism, hope, and encouragement would lead to the grim reality of living amidst COVID-19, racial tension, and social and civil unrest? Not me! On March 30, 2020, I tested positive for COVID-19. The same morbid conditions that contributed to my kidney failure—diabetes and hypertension—now placed me in the at-risk category of this novel virus. Before my positive test, it took me 4 attempts to get tested for COVID-19. My pastor notified me that a member of our church had tested positive for COVID and that I should get tested immediately. Every time I informed the COVID-19 hotline that I had mild symptoms, was in contact with someone who had tested positive for COVID-19 and was immunocompromised, my risk was never severe enough until my symptoms worsened. On March 20, 2020, I took my COVID-19 test, and I received my positive test results 10 d later. Four days after my test, I informed my transplant center that my wife, Tina, had tested positive. I was prescribed hydroxychloroquine sulfate as a precautionary measure, but my symptoms became so severe that I was hospitalized overnight. Nearly 5 mo after testing positive for COVID-19, I still have uneasiness concerning the uncertainties, anxieties, and fear for kidney patients like myself that stems from being at-risk for a novel virus that appears to change daily, the lethal impact of the virus upon my ethnic group, and the lack of urgency to deliver equitable care, humane treatment, and empathy to the most underserved, undervalued, and disenfranchised communities that are most adversely impacted by COVID-19 and kidney disease. Tracey Temple: Insulin-free Since Kidney/Pancreas Transplant in 1995 – COVID Positive While on a Cruise Ship Transplantation: Please describe yourself and your life over the past couple of years: I am now 48 and live in Brisbane, Queensland, Australia. I was diagnosed with insulin-dependent diabetes at the age of just 27 mo. I developed kidney complications in my late teens and eventually, but just avoiding dialysis, before I turned 23, I had a kidney and pancreas transplant on April 3, 1995 in Sydney. Since then, I have lived at home in Brisbane with my mother and have been cared for by the transplant program in Brisbane. Over the past few years, I have generally been quite well with very few trips to hospital, other than my regular checkups. I have not needed insulin injections for >25 y. I decided to go on holiday with mum and we booked a cruise from Sydney to New Zealand and back, which we embarked on in early March 2020. Transplantation: What had you heard about COVID before you got sick? I did not know very much about COVID in early March at the start of our cruise. What we now know—thanks to a special commission of inquiry for the NSW Government into the events—was that the virus was probably already on our ship, the Ruby Princess. At the time, we were told that COVID was known to have been on the Diamond Princess and the Grand Princess ships overseas, but was not here in Australia. Sadly that was wrong. In the end, 712 passengers and 202 crew members were infected by the time we docked back in Sydney and 28 people eventually died. Both I and my mother caught COVID-19 during the cruise. Transplantation: What happened to you and your transplants with COVID? I was sick on the boat initially with continuous terrible diarrhea for 7 h. I thought I had eaten something bad and because we were told that there was no COVID on the boat, I did not think it was COVID. I had not much in the way of a temperature at the start, but then it got up to 38.4 and I lost my sense of taste and smell. The worst symptom after the diarrhea was the aches—everywhere—and I still have them today 7 mo later. My mother also had diarrhea, aches and pains, a cough, and a headache. After we disembarked, we returned to Brisbane and were both admitted to the Infectious Diseases ward. My mum stayed for 4 d and recovered. I was lucky enough not to need ventilation or ICU and while I had a cough, I was not too breathless. My kidney function results deteriorated with my creatinine normally between 110 and 130 to 224 μmol/l, and my Tacrolimus level rising 18. Transplantation: How long did it take to recover and are you back to normal now? I was in hospital for 5 d and then it took me 8 wks to receive 2 negative swab results from my nose and throat. I am left with some of the side effects. The most debilitating things I am suffering from are extreme fatigue and some confusion—the COVID Long Haulers call this Brain Fog, sun sensitivity, with a rash on my face, and blurred vision. The one good thing is that it seems to have fixed my gastroparesis and I no longer use tablets for that. Leaving home for the first time was a real worry for me and remains so—I am anxious that I will get infected again and plan every trip to avoid contact even though there is almost no COVID in Australia and none in Queensland at the moment.