Long Covid Care Guide
Having long COVID can be overwhelming. So I have developed this guide to help you or someone you know with COVID. I have written this guide using my extensive experience as a patient navigating follow-up care, Emergency care, specialist visits, and even in-patient hospital stays. I have put together this resource to provide access to quality care faster, answer questions, and help everyone know the rights we have as patients.
Emergency Room Guide
For the past few years I have served as a useful source to those seeking help, or advice with Covid & long Covid in the emergency room. These are my general tips, tricks and practices I have learned to employ along the way to gain access to proper care.
1. Dress appropriately for tests and bring hair tie. Loose fitting clothes with stretch and no metal are best.
2. Each bed should have a "call button or remote" that you can use to call your nurse for help if you feel worse or if you need to find a restroom. Your nurse should give this to you or show you where it is as soon as you get to your bed. If they do not, request to be given this upon their return.
3. Have the hospital Patient Advocate contact information readily available. That number can be found on the hospital website.
4. Have written notes or an easy to share file on your phone available to refer hospital staff to any symptoms, pre existing conditions or medications in case you forget. Don't assume because they know your medication list that you will be given your meds that you are already prescribed to take daily. You must request those.
5. Request specific tests by name. If staff refuses that test, request to have test refusals in writing. State the potential negative outcome that could occur if you don't receive that test and that you will hold them responsible. i.e. stroke or heart attack from clotting, organ damage from low oxygen levels, etc.
Common tests to request are: EKG , CT of Chest, Chest x ray
Common blood work to request: CMP, CBC with differential
These tests can help validate the need of alternative Covid testing in leu of potential false negative PCR Covid test result and find other potential issues such as clotting, or other infections that are common to have alongside Covid.
6. Get a male ( or some who passes as male vocally) to call to inquire about your care by calling the hospital. If possible, prompt a family member that you can authorize in advance to speak to medical staff on your behalf. Give that person as much detail about your symptoms as possible. ( text or email them notes from #4 ) Have that person request to speak directly to your nurse and doctor as well.
7. Document via text messages to friends and family unprofessional behavior by staff by taking photos. For example, a photo of your vitals or that you aren't having vitals properly monitored. This creates timestamps, and will help you to remember details when filing a complaint.
8. Request to speak with charge nurse or nurse supervisor. Tell that person all your symptoms and what tests you are requesting. If they also refuse to give tests you requested, ask them to document their refusal in writing.
9. If you are discharged and don't feel as if you have received care enough to safely go home. Go to a different hospital and try again. It is NOT helpful to tell them you just left a different hospital. Be sure to take your arm band of the previous hospital off.
10. If after discharge you discover that hospital staff has improperly deemed your Covid symptoms as anxiety or depression or anything else that labels to your symptoms as being psychological, you need to correct the record. Contact hospital administration to request to have that removed from your file. Having incorrect diagnosis of these symptoms on your file will negatively impact care in other medical settings, including specialists, follow up doctor appointments, etc. Look on the online portal that contains your medical information (set up and log in instructions can be found on your discharge papers), to be sure your record is accurate.
Guide to Affordable Care
Unfortunately, there is financial burden that comes with getting long COVID. From changes in your ability to work, to out of pocket costs for care, there are issues that need to be addressed. Cognitive disfunction that is common to experience with long COVID adds to the need to getting a head start on potential solutions and resources can help ease some of these hurdles. Here are some resources to help you navigate those.
The Job Accommodation Network (JAN) is the leading source of free, expert, and confidential guidance on job accommodations and disability employment issues. JAN is a service of the U.S. Department of Labor’s Office of Disability Employment Policy/ODEP and provides free one-on-one guidance through their live chat or via telephone. Most notably, JAN provides individuals with medical conditions and disabilities information about job accommodation solutions, employment rights under the ADA, and self-employment and more. For more information about JAN, visit their website.
Health Resources & Services Administration health centers are community-based and patient-directed organizations that deliver comprehensive, culturally competent, high-quality primary health care services to the nation’s most vulnerable individuals and families. HRSA health centers provide affordable care regardless of income level. By emphasizing coordinated care management of patients with multiple health care needs. these health centers reduce health disparities including for long Covid care. To find a health center nearest you click here. To learn more click the button below.
NeedyMeds is a 501(c)(3) national non-profit that connects people to programs that will help them afford their medications and other healthcare costs. NeedyMeds educates and empowers those seeking affordable healthcare. Their vision is affordable healthcare for all. NeedyMeds, achieves its mission by providing information on healthcare programs, offering direct assistance and facilitating programs. Long COVID medication costs can add up rather quickly and going without medication can lead to a decline in your health. Visit their website to check out the resources NeedyMeds has to help with long COVID medication costs.
Patient Advocate Foundation (PAF) is a national 501 (c)(3) non-profit organization which provides case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses. As the coronavirus spreads across the country, PAF wants to make sure people have answers and resources to support you during this uncertain and stressful time of being chronically ill. If you are experiencing challenges accessing care or have affordability concerns they are here to help. Patient Advocate Foundation even has a financial aid program. To learn more visit their website.
* Please note that I am not a medical professional and all recommendations given should be used at your own discretion. Also note that I too am still recovering from covid so I may not be able to respond immediately. If this is a medical emergency please go to your local Emergency room before contacting me.