Patient Guide - preparing for the ER & new medical visits

How to prepare for an ER trip or a visit to a new medical practice.

Going to the ER or to a new doctor’s office can be a stressful experience.  The obvious reason is that we are sick. Sick enough to need an ER or sick enough to need another consult.  But the other more difficult reason for the stress, is the reaction we get from the medical professionals we go to for help..
 

The best way to help your stress level and theirs is to be prepared.  Let’s face it, it can’t be easy for the ER team, the doctors and nurses to have a patient in front of them talking about illness and treatments that they know little, if anything, about.  So since they can’t prepare, it falls to you.

Here are some suggestions to help you get ready in advance.

1. The first and most important step before going to the ER or a new physician's office is to bring the important information about your care with you.  This involves preparation before you are in need of the ER or have a new appointment scheduled.  At the end of this article is a form that you can download and print.  It gives you suggestions for what information you will need.  Fill this out and keep it up to date and keep it somewhere safe and available.  For some it may be a purse or backpack that you carry with you all the time or perhaps a glove box in your car.  Wherever you choose, make sure it is a place that is easily available to you and your caregiver. 
2. Be sure to have water and a snack with you for the wait and don’t forget to bring the next dose of your current meds with you.  You don't know how long you will need to wait and the the last thing you need is to miss a dose of much needed medicine while waiting for treatment.   
3. As we all know, dysautonomia symptoms do not always follow the “normal” course of accepted action and reaction.  For example,  in the case of certain types of dysautonomia, the standard test for dehydration may return normal levels and volume, yet if the medical team understands what to look for, they might see that the person has dangerously low levels of sodium.  This is just one example, there are many more examples of vital information that can be missed because this illness does not follow the standard, expected reactions of other illnesses.  Be sure to include the HR range and BP range that is “normal” for you.  
4. And this brings us to the next extremely important preparation to make before you go to the ER or to a new medical team - advocacy.  You have to be ready as the patient to advocate for yourself or if you feel too sick to take on what could be an uphill battle, then prepare to bring someone with you who you trust and who understands your illness well. Understand before you even get there, that the ER staff may not have the time to read articles about dysautonomia but you should expect them to ask questions and read through your history.  Be sure you have discussed with your PCP or Dysautonomia Specialist who an ER doctor should contact if they are unsure of how to treat you or to interpret your labs or numbers.  In the case of a new physician's office, you should expect a new doctor or nurse to be willing to read the information you have provided and to take time to ask questions and discuss your history.  You may want to drop off the articles in advance of your visit or email them to the nurse or doctor.  You need to advocate for yourself but your consideration of their time constraints will go a long way too.  If a new team has an uncooperative attitude from the beginning, if they are unwilling to listen and understand the information you have about this complex and unusual illness, then they are unable to treat you properly.  

PatientGuideER.pdf