Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Monday, August 17, 2015

Rant: Emergency jewelry

My panties are in a bunch.  Maybe TMI but I think everyone needs to know that from the start of this rant.  I will not mention organization names nor will I recommend that you change the wording on your emergency jewelry.  Hear what I have to say and make your own decisions.

A major organization as well as a major manufacturer of emergency jewelry recommends the following wording on bracelets:


ADRENAL INSUFFICIENCY
NEEDS STRESS DOSE CORTICOSTEROIDS


WTF?!  How can a person get help from a Good Samaritan or anyone else for that matter with this information?  An EMT or paramedic might have the capability of looking up "ADRENAL INSUFFICIENCY" to help him/her decode the "NEEDS STRESS DOSE CORTICOSTEROIDS".  Even if they can, you're still hosed.  EMTs in most states are not permitted to inject you with your own injection kit even if you have it on your nearly dead corpse.  I believe paramedics are allowed to give shots.  Most doctors don't exactly know what "ADRENAL INSUFFICIENCY" entails let alone the proper emergency protocol.  A passer by who finds you on the street might think, "Adrenal insufficiency, didn't JFK have that?"  It will mean nothing more to them beyond that or they might think you don't make adrenaline (a reasonable assumption).

Let's take a look at the vague and dangerous nature of 
"NEEDS STRESS DOSE CORTICOSTEROIDS".  

Here is a scenario:You have adrenal insufficiency and you carry your injection kit in your purse.  You are wearing your emergency bracelet with the recommended wording.  You are driving a car and your friend is sitting next to you.  Someone runs a red light and hits your car.  You are drifting in and out of consciousness.  Your friend looks at your bracelet and knows you need a shot if you're in an emergency situation.  She rifles through your bag to find the "CORTICOSTEROIDS" but all she can find is Solu-Cortef!  She nervously makes the jump in reasoning and decides to give you the shot.  Crap!  How much is "STRESS DOSE"?  Under what conditions should she give you the shot?  She's mistakenly afraid the medicine in the syringe will kill you if she gives it to you under the wrong circumstances or in the wrong amount.  She decides to wait until the ambulance arrives to have them give you a shot.  They arrive and refuse on legal grounds,, EMTs in your state are not allowed to give injections.  Now, you've been without cortisol and unconscious for twenty minutes and still need to be transported to the hospital.  You arrive at the hospital twenty to thirty minutes after the accident.  In this time, your blood pressure is plummeting, blood sugar is plummeting, potassium is rising to dangerous levels and your body is shutting down.  You are admitted to the ER.  ER docs don't see "ADRENAL INSUFFICIENCY" very often and will have to look up the emergency protocol since they know that "CORTICOSTEROIDS" is a wide category of steroids.  They pick Solu-Medrol since it's on hand and give you plenty of that.  Sure, Solu-Medrol will be OK but it takes much longer to kick in.  It does not contain enough mineralocorticoid properties to get your BP up.  The ER docs gave you a "STRESS DOSE CORTICOSTEROIDS" and do whatever they do to get BP up.  The ER docs think they did everything right but since there are no mineralocorticoids in Solu-Medrol, your potassium gets dangerously high and you're at risk for a heart attack.

Perhaps this scenario is riddled with inaccuracies.  Perhaps not each and everyone of these things would happen to one person.  With my experience with health care, most of these things probably could happen depending upon the circumstances.  Do you really want to risk it??

If the emergency jewelry had been specific and accurate in its instructions, your friend would have given you the shot and kept your BP up, BS up and your ICE person would know what was going on.  The friend could have someone to talk to and reassure her that she was taking the right steps.  Your other injuries would have been attended to sooner and more efficiently and your ICE person could be at the hospital waiting for you.

Here's what I like on my bracelet:

ADRENAL INSUFFICIENCY
UNCONSCIOUS OR VOMITING
100 MG SOLU-CORTEF IM
ICE PXXX XXXXX
307-xxx-xxxx

  • The disease is clearly stated
  • The situations where I would not be able to talk, spelled out
  • Exact amount of the type of med I need made clear for those who will find my injection kit and know I need it used on me.  
  • ICE=In Case of Emergency, my husband's name and number

So, you're going to say, "All the info someone would need is in my injection kit."  Well, do you really think that if you need a shot NOW, someone's going to sort through your injection kit and its literature to determine what's important and what's not?  No, that's not realistic. What if they can't even find the injection kit?  What if they don't know that it exists and they need to find it?  If they call the ICE number, the ICE person could give instructions  

All the information that someone, anyone, would need to save your life should be clear and unambiguous.  If the Good Samaritans are scared or cautious about helping you, at the very least, they might call the ICE person who could help them through your crisis or get that person to come give you the shot.

Clearly stating what you need in an emergency situation on your medical emergency jewelry is your responsibility.  If you are fine with the calculated risk of the ambiguous instructions, "NEEDS STRESS DOSE OF CORTICOSTEROIDS".  Don't go changing!  I take a lot of calculated risks and this is NOT one of them.  I don't need to die or worse yet, get brain damage from low blood sugar, because someone didn't have the tools to help me.  I feel that better wording on the emergency jewelry is a necessity in my life and worth deviating from the "recommended" wording so I can stay alive in the event of a crisis or emergency or accident.