911 and Chronic Illness

Over the past two months I have been experiencing parts of the healthcare system that I had never seen before. These have also been sides that I had hoped to never experience from the patient side, but every experience can be a learning experience if you allow it to be. My most recent new experience was with 911 and going to the ER via ambulance. After my first ICU admission I was given strict instructions on when 911 needed to be called. I fully expected to never get to that point as being driven to the ER had been working well.

A couple weeks passed and unfortunately I went into anaphylaxis again and it was evident my body needed help beyond what I could do. So we called 911. Having a somewhat rare disease I always worry about interacting with new healthcare providers. Will they know my condition? Will they listen?

That night the kindest paramedic and firefighters showed up. They listened, got me the correct treatments, and safely transported me to the hospital. I had prepared to advocate, yet I was so pleasantly surprised I didn’t have to.

Here are some tips that I did that night and have since prepared in case of ever having to call again:

1. The second abnormal symptoms start happening, create a list.

Write down the time of symptoms and any meds taken. You may not need it if symptoms resolve, but if you do end up having to call 911 or go to the ER this will be very helpful. It is especially helpful in situations where you end up not being able to communicate well.

2. Have a letter from your doctor stating your medical condition and advised treatment plan.

With diseases that are more rare, having a letter from your doctor is extremely helpful. That way healthcare providers who are not familiar with the condition have something to go on besides just your word.

3. Keep all papers needed for the hospital easily accessible.

If you have a hospital to-go bag, I recommend keeping the papers in a folder in the bag. Also keep a copy of important documents on your phone in case you have to call 911 or go to the ER while you are out.

4. Make sure your family and friends are aware of your medical conditions and important information that they need to tell healthcare providers in emergency situations.

5. Don’t stress about it.

The amount of time I have spent stressing about how ER visits or calling 911 would go is much higher than the amount of times I have actually had an issue with a healthcare provider not believing me. We’ve all heard horror stories and if you have a rare disease chances are you’ve experienced not being listened to. However, stressing over it just makes it worse. Prepare the best you can but then let it go.

Living with a chronic illness means having to prepare for the worst. While you hope you never have to end up in an ER or having to call 911, it is so important to be prepared. The more you prepare before it happens, the less stressful the actual emergency is.

Do you have any tips? Feel free to share them in the comments.

Disclaimer-

All information provided on this blog is for educational purposes only. Always consult your healthcare provider and/or your insurance provider for your specific situation. This blog does not offer medical advice.