At the 2017 MGFA conference a panel consisting of Bruce Yelverton (Myasthenia gravis [MG] patient and retired paramedic and EMS director), Sally O’Meara (MG patient and registered nurse), and Shannon Wilson (MG patient and mother of son with special needs) presented “Myasthenia Gravis: Preparing for Medical Emergencies.”
The biggest threat to someone with MG is Myasthenic crisis, but what exactly is that, and what should you do if it happens?
Myasthenic crisis is when you’re unable to breathe on your own due to weakness of your respiratory muscle. When this happens, patients are either intubated or are fitted with a bi-PAP.
There are multiple possible triggers for a Myasthenic crisis such as certain medications, general anesthesia, stopping MG treatment medications, illness (especially lung-related), choking, and stress.
Unfortunately, a Myasthenic crisis can develop either slowly or rapidly without warning. As soon as crisis symptoms begin develop you should seek emergency medical care.
Some of these symptoms are:
- gasping for air/feeling short of breath when you lay down
- rapid/shallow breathing
- interrupted speech because you’re pausing to get more air
- a weak cough that doesn’t feel productive, i.e. you can’t clear your throat
- waking up gasping for air
- restlessness, agitation, drowsiness or confusion
- your chest walls moving in rather than expanding when you inhale
- feeling too tired to breathe
A simple test you can do to check your respiratory function is the single breath count test. People with normal function should be able to take a breath and then count aloud all the way up to 50 without taking another breath.
If you can’t reach 25, you should seek help immediately.
There are also home medical devices meant to detect respiratory crisis, but they might not be as helpful. The pulse oximeter, for example, is not a good indicator of breathing function for MG patients.
It’s a good idea to have an emergency plan ready in case you experience a Myasthenic crisis. Prior planning means less stress in the moment when you really don’t need anymore.
You can call the 911 center in advance and see if you can register your medical information in their database and check if your 911 center accepts text messaging. If you’re developing a Myasthenic crisis it may be difficult for you to speak when you call. A medical alert system may be something you want to look into so you can access 911 with the touch of a help button.
To ensure that first responders are able to get into your house you may want to get a lock box or electronic keypad for your door. You can give the code to the 911 operator and not have to worry about getting to the door to unlock it.
Smart lights can help identify your home quickly to first responders, for example, a flashing porch light. They wouldn’t need to search for your house number in the dark.
If possible, touch base with your neighbors. They could possibly keep spare keys for you to use in an emergency, mind pets while you’re in the hospital, and help advocate.
Medical alerts are also always a good idea. Some of the suggestions listed in the presentation were;
- USB Devices
- QR Code
- Home medical alarms
- Cell Phone ICE
These can be use in combinations as well. For example, you can buy medical alert jewelry that contains as USB drive or a QR (Quick Response) code.
Cell phone emergency screens are available on Android and Apple and are accessible while phone is locked. Just make sure that you fill them out with any necessary information in advance.
The Yellow Dot Program is an initiative providing a yellow decal for the rear window of your car which indicates to emergency responders that there is medical information in your glove box. Check the status of the program in your area. You can of course, also create your own version of this.
It is also a good idea to have a patient information packet kept handy and up to date for EMS and ER staff. At the conference it was recommended to include:
- Emergency contact list
- Implanted device information cards
- Medication list
- Advance directive
- Health insurance card
- Health care advocate
- MG information for providers
- Medical history and hospital records
- Mg medication precautions list
- Medical power of attorney
- Medical devices (BiPAP, CPAP)
- Physician contact list
Don’t forget to check the MGFA’s website for more info!