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Long COVID & Infection-Associated Chronic Conditions ER Guide -2024

This guide is designed to provide a detailed overview of navigating emergency room visits, focusing on advocating for oneself, especially in the context of Long COVID and infection-associated chronic conditions. Your health and well-being are paramount, and understanding how to effectively navigate the healthcare system is crucial.

Before You Arrive

Do some research online in advance, on which nearby ER's are best suited to handle your conditions. If possible, aim to visit the ER during regular business hours, between 9 AM and 6 PM on weekdays, for better access to patient advocates and experienced doctors. Keep a summary of previous emergency visits or specialist care for context. Have your doctor call ahead, if possible. If your doctor tells the ER you need urgent attention, that paves the way for your arrival and expedites your way through triage. It also helps legitimize your condition. If possible you or a family member can also call ahead to inform the ER of your arrival and discuss your condition.

What to Bring

  • Emergency Kit: Include medical history, advocate contacts, a charger, and a power bank.

  • Emergency Health Card: Carry a card or digital version on your phone listing your conditions, medications, allergies, and emergency contacts.

  • Use of Medical Alert Accessories: Wear a medical alert bracelet or necklace with your health information if possible.

Dressing for the Occasion

Wear loose-fitting, stretchable clothes without metal to ensure comfort and facilitate tests like EKGs or chest X-rays. Metal can interfere with diagnostic equipment. Wear layers to adjust to varying temperatures and maintain modesty during examinations. If applicable, bring a hair tie to secure your hair for certain tests or x rays.

Hospital Patient Advocate

Hospital patient advocates are invaluable for navigating hospital protocols and overcoming communication barriers. Find and save the hospital patient advocate's contact information in your phone before your visit. If this isn't possible, enlist a family member or friend to assist. If there is none or you can't find the information, reach out to a support group to see if any patient advocate ( like myself ) within that space can assist you. 

Preparedness with Medical Information

A concise summary of your medical history, current medications, and symptoms can significantly improve the care you receive. Use health apps or notes on your phone to organize this information. Share access with a trusted individual.

What to Do During Registration

Clearly articulate your symptoms and any known diagnoses upon registration. This sets the stage for your visit.Prepare a summary of your symptoms and conditions, such as tachycardia from POTS, including severity, triggers, and effective treatments.

Ensuring Proper ICD Coding

These codes classify all diagnoses and procedures. Accurate coding is essential for documentation, research funding and billing. So try to ensure your symptoms and condition are accurately recorded for proper ICD coding. Also check to be sure they aren't attributing your symptom to psychosomatic origins. For example attributing your elevate heart rate to panic attack or anxiety, instead of dysautonomia or POTS 

After Getting to Your Bed

The call button is your lifeline to immediate care. It allows you to alert staff quickly if your condition worsens or you have urgent needs.Test the call button upon settling in. Don't hesitate to use it for assistance even if the staff acts annoyed. That is your right as a patient to use. Especially those of us with mobility impairment.

Requesting Specific Tests

Knowing which specific tests can provide crucial information empowers you to advocate for your care. 

*** THEY WILL OFTEN LIE *** and say some tests are not available. Check their website or with local patients in support groups to confirm whether or not they are lying. If they are, be firm and call them out! If a test is refused, request documentation of this refusal “in writing “ for accountability. You may have to say, “as per your website”, or “I received this on a previous visit”, to force them to be truthful.

Pay attention to their exact words. To get around blatant lies,they will sometimes say, “we aren't able to do that right now”, or “the doctor didn't approve that”. That is not the same as the test being unavailable at the hospital. Ask them plainly, is the test something the hospital has available.

Force them to lie or come clean on why they are denying you specifically. Be prepared to cite research or standard of care protocols for your diagnosed illness or symptom. 

Record, record record! Each state has different rules on recording conversations. Be aware of your state laws. Most are at least 1 party consent, in which you are that 1 party, or have laws around with releasing the recording, not recording in general. Make sure you have enough space on your phone to record audio or video while there. 

Often they will deny you a test and run out the room before you can request the refusal in writing or try to discharge you before you have the opportunity to request the refusal in writing. Staff will often also cut you off mid sentence to steer you away from asking important questions or saying key words that they MUST follow up with by doing a test. For example for chest pain they must do an EKG, This is why you ALWAYS have your phone ready to at least record audio. It doesn't matter how nice they are being. Do not let them catch you off-guard.

Sometimes you will request a test and staff will nod that they heard, walk away, then quickly give you discharge papers. This is done so you will think they have agreed to the test and push you out of the ER without a chance to fully explore what is wrong. Do not let them get away with this!

This is exactly the time you inform them of your rights as a patient and inform them that you will either re-register, or go to the nearest ER to ask for the same test and let them know if that ER finds something wrong or abnormal, they will be on the hook for missing it. A hospital can be at fault for a misdiagnosis if they fail to provide reasonable care, such as not running tests or failing to diagnose a patient. Misdiagnosis can lead to physical and emotional injuries, loss of life, and other consequences. This is especially pertinent if they put psychosomatic related symptoms on your discharge papers instead of the very real illness you have been diagnosed with.

Firmly inform staff that you are aware that you can file a medical malpractice claim against the hospital if they do not give you the test or give you the refusal in writing. Be sure to tell them that their negligent care puts you at high risk of permanent, worsening disability or death and that you will seek out another hospital or healthcare facility immediately to actually test you, if they refuse to do so. This is especially motivating if your vitals are outside of normal range at discharge.

Here's a general guide for tests to ask for categorized by common symptoms:

For Shortness of Breath

  • Chest X-ray: To check for signs of pneumonia or other lung infections.

  • CT Scan of the Chest: Offers a more detailed look at the lungs and can detect clots (pulmonary embolisms) that might not show up on a regular X-ray.

  • Arterial Blood Gas (ABG): Assesses oxygen and carbon dioxide levels in the blood, providing insight into lung function.

  • D-Dimer Test: Helps to rule out the presence of an abnormal blood clot.

For Tachycardia or Palpitations

  • EKG (Electrocardiogram): Monitors the heart's electrical activity to identify irregularities.

  • Echocardiogram: Uses ultrasound to visualize the heart's structure and check for abnormalities.

  • Blood Tests: To check for electrolyte imbalances and thyroid function, which can affect heart rhythm.

Common Labs for Inflammation or Infection

  • CBC (Complete Blood Count): Can indicate the presence of infection, anemia, or other blood disorders.

  • CRP (C-Reactive Protein): A marker of inflammation in the body. Elevated levels can indicate infection or chronic inflammatory conditions.

  • ESR (Erythrocyte Sedimentation Rate): Another test to assess inflammation. It measures how quickly red blood cells settle at the bottom of a test tube.

  • Procalcitonin: Helps to distinguish bacterial infections from other causes of inflammation.

  • Ferritin: Elevated levels can indicate inflammation or an acute phase response.

For Gastrointestinal Symptoms

  • Liver Function Tests: To assess liver health, which can be affected by medications or the virus itself.

  • Stool Tests: If there's a concern about gastrointestinal infection or inflammation.

  • Abdominal Ultrasound or CT Scan: For a detailed examination of abdominal organs if there's pain or other significant symptoms.

For Neurological Symptoms

  • MRI of the Brain: To rule out strokes, lesions, or other neurological conditions that might be contributing to symptoms like headaches, dizziness, or cognitive impairments.

  • Lumbar Puncture: In cases where there's a suspicion of meningitis or central nervous system involvement.

For General Well-being and Other Symptoms

  • Vitamin and Mineral Levels: Deficiencies in vitamins D, B12, and other minerals can exacerbate fatigue and weakness.

  • Thyroid Function Tests: To rule out thyroid issues, which can mimic or exacerbate Long COVID symptoms.


Documenting Care

Document care, including any lapses in monitoring or unprofessional behavior. This is crucial for complaints or legal action. Use your phone for discreet photos or to send real-time updates to a trusted contact.

Help From An Ally

Try to have someone accompany you at EVERY ER trip not just as support but as a witness to any wrongdoing by the hospital. Be prepared for possible removal of the person accompanying you from the room while the doctor consults with you. Some hospitals have this policy, some don't. If so, ensure your phone is ready to discreetly document interactions.

  • For Women: Male voices may be taken more seriously in some healthcare settings. If you are a woman, pre-authorize a male family member or friend to discuss your care if necessary.

  • For BIPOC : having a white ally accompany you to the ER can impact the care received. Still be prepared to document interactions.

Escalating Concerns

If your concerns are not being addressed, request to speak with a charge nurse or supervisor. Articulate your symptoms and the tests you believe are necessary. If requests are denied, ask for written reasons.

Re-admitting Yourself for Better Care

If dissatisfied, you can re-admit yourself and request to see different providers. Prepare for potential pushback but know it may lead to better care. I try to coordinate that with a shift change which usually is at 630 am or pm in most hospitals. To have the highest chance of getting new staff and doctors.Depending on where you are located and how large the hospital is.

Post ER Visit

If care was inadequate, seeking a second opinion is within your rights. If you don't feel stable with your symptoms to safely go home at discharge, go to a different ER. Take your armbands off before you arrive. Present your symptoms and concerns without mentioning the previous ER visits for an unbiased assessment.

Correcting Misdiagnoses

Incorrect attributions can negatively affect your care and treatment options. Check your discharge papers and medical files for incorrect information. Contact hospital administration to request corrections in your medical records.

Specialist Appointments Post-ER Visit

The way you communicate your recent ER visit can influence how quickly you're seen. It's essential to convey the urgency and seriousness of your condition. Lead with the fact that you were just in the ER, start by explaining your symptoms, diagnosis (if applicable), and the recommendation for specialist follow-up. This often bumps up the availability that staff offers. For example, if ER staff recommends you to see a specialist or doctor in 2 days, say “ the ER nurse or doctor says”, not simply, “can I see someone in 2 days”. 

Additional Considerations

Self-Advocacy Training: Engage in self-advocacy training or workshops. Being prepared with strategies and language can enhance your ability to navigate complex healthcare interactions.

Disability Justice: Familiarize yourself with patient rights and hospital policies to file complaints of wrongdoing.

Support Networks: Join support groups for Long COVID or your most pressing chronic conditions for additional tips, emotional support, and advocacy resources.

This updated guide aims to equip individuals, especially those with Long COVID and infection-associated chronic conditions, with the knowledge and tools needed to advocate for themselves effectively during emergency room visits.

Disclaimer: The information and opinions expressed here are for informational purposes only and are not intended as medical advice. They represent my personal experiences and perspectives and are not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.


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