I’m a Covid-19 Longhauler. A longhauler (also referred to as a PASC or Long Covid patient) is a person who had Covid-19 but, instead of recovering, are left with a myriad of debilitating secondary illnesses and long-term symptoms. There is no cure for longhauler patients and treatment is limited to trying to treat individual symptoms. Longhaul research has been minimal as most of the focus has been on treating those with acute infections. Finding knowledgeable specialists is incredibly difficult.
My family and I have suffered greatly during the Covid pandemic. We all contracted Covid in December 2020. My father ultimately succumbed to his infection and was removed from the ventilator on Jan 6, 2021. We were fortunate to be at his bedside when he passed. My mother was hospitalized numerous times and has been suffering as a Long Covid patient as well. I’m an RN and prior to my Covid infection I was working as a nursing director at a home health agency in the Pittsburgh region. I was so lucky to have a job and career I loved. Nursing gave me a sense of purpose. I’ve loved caring for people. Now I find myself at the other end of the spectrum and am the one needing help.
My Covid infection led to two lengthy hospitalizations in addition to numerous ER and urgent care visits. I didn’t recover from my infection and was ultimately laid off from my job after my PTO was exhausted. I was denied unemployment benefits and have had no income since my last paycheck in Feb 2021. I’ve had to go on Medicaid as I don’t have the financial means for health insurance coverage. I’ve begun the process of filing for disability as I’m too ill to work in any capacity at this time. My Long Covid journey has been a great struggle. I’m 42 years old and have been sick every second of every day since December 2020. I’ve been diagnosed with small fiber neuropathy, dysautonomia, moderately-severe aortic regurgitation, fibromyalgia, IBS triggered by the small fiber neuropathy, retinal arteriovenous nicking, and the development of cataracts from the steroids used to treat my respiratory symptoms. My list of symptoms is extensive. Just getting out of bed is difficult most days. I’ve crawled up my stairs to the bedroom because of severe pain, shortness of breath, and/or fatigue. I have to use a rollator walker when I leave my home due to the pain and crippling fatigue. I’m only able to walk/stand/sit for short durations before needing to lie down. I haven’t been able to drive for months. I was healthy and active prior to my Covid infection. My life has essentially been put on hold for almost a year and the future is uncertain as many of my diagnoses are progressive. I may never return to my previous state of health. I’ve lost my independence, often needing help with getting dressed or putting my shoes on. Even something as simple as taking a shower (utilizing a shower bench) is exhausting. I’ve lost every aspect of a social life. My physical impairments have been so severe that I can’t even walk around Target or a grocery store. My outings are pretty much limited to doctor appts and visiting my family.
There are no assistance programs for Longhaulers yet so many people are suffering. Bills don’t stop when you’re sick. I was the primary earner in our household and the loss of my salary has been a terrible hardship. I had to withdraw all of the funds from my 401k and have been using that for expenses in addition to assistance from friends and family. Your donations will be used for medical and household expenses. Any help and donation is so greatly appreciated as it will allow me the opportunity to heal and recover to the best of my ability without the added stress of financial concerns.