HOW TO BE PREPARED

FOR AN EMERGENCY OR PLANNED HOSPITALIZATION FOR INDIVIDUALS WHO ARE MEDICALLY COMPLEX

BY ELLEN SMITH

Coping with two incurable conditions and being medically complex has led to many experiences in the hospi-

tal. I have learned that it is best to prepare for a planned or emergency stay, to be as safe as possible.

I highly recommend taking time to get a “just in case” list or even a bag that can be grabbed to bring to the hospital for you. I have had too many experiences of not getting food I can metabolize, correct 

medications, and being handled in a way that has caused permanent damage to my body.  So, with this in mind, I am sharing tricks that I have developed, to be prepared to the best of my ability.

PREPARATION IS KEY : PLANNING FOR AN EMERGENCY HOSPITAL STAY

ARRIVAL

I arrive with a packet of the following medical information printed out to hand to the staff, that includes:

• Insurance number
• Pharmacy contacts
• Medications presently being taken

• Copy of my DNA drug sensitivity testing results
• A list of medications in the past that have worked, but are not presently being used ARRIVAL I arrive with a packet of the following medical information printed out to hand to the staff, that includes:
• Insurance number
• Pharmacy contacts
• Medications presently being taken
• List of medication reactions - not to be administered
• List of past surgeries with dates
• Diagnoses list and dates when established
• My doctors currently caring for me
• My living will

IF YOU ARE FOOD REACTIVE

• Prepare and freeze individual-size meals and snacks to be brought in for you. I always keep some in the freezer "just in case".

DO'S AND DON'TS LIST

(The following is what I need others to respect and actually have taped to the door of my room)

DO'S

• For the needle, use a butterfly for taking blood
• Use child tubes for any intubation
• When in doubt, don't take a chance, Contact one of the doctors that follows these two rare conditions: Ehlers-Danlos and Sarcoidosis
• Insert PICC line instead of IV, so it will hold
• Feel free to use any meds on the page listed MEDICATIONS THAT WORK
• Honor my no CHEST COMPRESSION order in the copy of my Living Will

DON'TS

• No chest compressions - it will break my ribs and they will never heal
• No larger gauge needles - they easily blow veins and lines fall out
• No meds are to be given on the MEDICATION REACTION LIST
• Don't use any forms of steroids; it breaks down collagen rapidly with EDS