Emergency Room Procedures

Quest Magazine has a good article this month on ER visits, titled:  “Going to the Emergency Room:  Tips for People with Neuromuscular Diseases”.  The article, written by Donna Albrecht reminds us of how important it is to think through these situations before they happen.



In earlier articles I wrote about my experiences in emergency rooms.  This Quest article reminded me about how we should not take things for granted … i.e., we will be able to communicate our needs and health issues.  Having an advocate with us is great, but that does not always happen.  Further, there could be a time when we are unconscious or not fully functioning so that we cannot explain our situation and health issues/concerns.

Dr. Gregory Carter, a regional medical director for the MDA, states that, “Most ER doctors will not understand these diseases.  Because of that, a respiratory patient can end up with an unwanted tracheotomy when an ER doctor pushes for aggressive care.”  This is just one example and those of us with Kennedy’s Disease need to be prepared for many types of recommended procedures.  For example, making certain the treating doctor knows that certain types of anesthesia could cause long term health issues or be dangerous and cause recovery problems.

The article continues … “But the biggest danger at the ER may not be the problem you go in with, but the problem you get there.”  It goes on to say that, “some neuromuscular disease symptoms can lead to serious misunderstanding in the ER.”  One example provided was that certain conditions cause floppy extremities and a lack of reflexes.    These patients may be sent for a full spinal work-up to look for injuries.



“The best strategy for going to the emergency room is to be prepared before the emergency strikes.”  The article recommends the following:

• MedicAlert bracelets or necklaces are important … as long as they are kept up to date.  When doctors call that service they are given all of your health information that is and the date the information was last verified.  Information should be no more than a year old, but even better is if it is verified every 90 days.
• If you do not have a bracelet, carry information in your wallet and car.  Make the information easily identifiable.
• Take a buddy or health advocate with you.  This is great unless there is an emergency and you are away from home.  If it is a buddy, the person needs to be fully aware of all of your health issues, medications, and concerns.  Something as simple as your concern with pneumonia, aspiration issues and needing your upper body elevated to reduce buildup of fluids in the lungs has to be communicated.
• Awareness beyond the emergency room.  Make certain that not only the doctors and nurses in the ER are aware, but also the lab specialists (X-ray technicians, for example) know of your health issues.
• Be your own advocate.  Being a self-advocate is very important.  The doctor is not always right … especially if they do not understand your condition.  “If something is not right and your gut tells you so, advocate until someone pays attention to you.”
• Advance directives do the talking for you.  Advance directives express your wishes in cases where you cannot.  Forms are available online or are available from your doctor, the hospital or an attorney.  Make certain that the form you use will be recognized in your state and is kept current.
• These forms contain a medical power of attorney, who can make medical decisions if you cannot speak, etc.
• Specifications about how much life support you want, the level of pain management to administer, etc. 
• Name and contact information of your physician.

Once again, the Boy Scout motto of “Be Prepared” fits perfectly.

Did I forget anything?  If so, let me know so that others will also know.  Thanks.