I was wondering how much or how little one needs to put on a medic ID bracelet. I am finding that most doctors and I am sure most emergency personnel are not that familiar with autonomic dysfunction and since it can mean so many different things in different people I am wondering what would be the most important information.
That is always a good idea when you have a medical condition w/ meds to have one.
I would just put what your AD is and depending on how many meds you are on, those,
BUT escpecially what you CAN NOT take due to your condition.
Funny enough though...the paramedics really do not even know what AD's or any of the specifics of it......Like POTS...I do not think they would have a clue! Like for me, my B/P is always VERY low.....So I would not want them to think that I was bottoming out and try and give me something when in all reality...that is MY normal!
Hey, if you do get one, please share w/ us what you decided to put on it so that it may give us ides too...
I've had quite the series of medical ID bracelets over the years. (I keep having to get new ones every time I have a major change with a new diagnosis, new drug allergy, device implant/explant, etc.) Here are some tips I'd recommend from my trial-and-error over the years:
*Order from a company that engraves bracelets back AND front; more "real estate" to fit more information, especially if you have a lot to squeeze on there.
*Make sure everything will be printed in all CAPS; it's easier to read in a hurry when you have an emergency and someone is squinting at all that tiny print.
*Remember to put your name on it. If you're in a situation where someone needs to be reading this stuff off your wrist, you're probably not talking for yourself so you need to be identifiable which includes knowing who you are. Seems obvious ... but it's surprising what you can forget when you're trying to squeeze a lot of information onto a tiny bracelet.
*Especially if space is at a premium, just pick one emergency contact number to list, and consider that this might not be the same person that is your healthcare power of atty, is listed on your living will, etc. For example, my mother is my 1st in command for medical decisions if I'm incapacitated; however, she does not carry a cellular phone (I'll leave out my luddite lecture, LOL). So it's "SIS 555-555-5555" listed on my ID bracelet because I know that my sister has her cell phone nearby 24/7 (even at work) and knows to answer anything from my area code (we live in different states) as if it could be an emergency. Once the hospital gets a hold of my sister, she can do the dirty work of trying to track down my mother with her landline and answering machine, my SO with his cell phone that doesn't get reception at work, etc. Remember to take these practical matters into consideration and list an emergency contact that will both answer the call whenever it comes, and be prepared to put a "phone tree" in motion if you have other contacts that need to be reached in the event of an emergency.
*List drug allergies. Some, like myself, may find that if you list every drug to which you have any level of allergy or adverse reaction whatsoever you're going to need to expand to a medical ID bracelet for each wrist AND two anklets with "cont'd..." as the last line on 3 of the 4. To avoid such a ludicrous situation, consider listing only your most severe allergies. I list everything that causes anaphylaxis or severe angioedema, pruritus, AND uticaria (all three as one reaction I mean), but omit relatively minor drug allergies/reactions such as rashes. Another way of putting this would be that I list all drugs for which I have a reaction so severe that it is an emergency situation which must be treated at the hospital with IV medications in order to get it under control and omit reactions which can fixed by just ceasing to take the offending drug or taking OTC antihistamines.
*Consider which words EMTs, paramedics, and ER physicians are most likely to be familiar with. "Syncope" is VERY familiar in the field of emergency medicine and first-responders; "dysautonomia" is not. "POTS" is unlikely to be understood until they call a cardiologist down to the emergency department for consult (if and when that occurs), but spelling out "Postural Orthostatic Tachycardia Syndrome" at least gets the point across that you have some type of *tachycardia* syndrome, even if they've never heard of it before. They will know what tachycardia is, and what a syndrome is. They will likely know what "orthostatic" means, particularly in the ED as they may have to take orthostatic pressures on patients from time to time. So if you have space for it, spell it out; if not, you may want to consider putting simply "sinus tachycardia" instead. It's more important to be understood than to be 100% diagnostically accurate.
*If you have any implanted devices that will show up on x-ray (or should not go through MRI!!), list these: cardiac or gastric pacemakers, loop recorders, ports, vagus nerve stimulators, etc. A PICC or insulin pump should be pretty obvious, but you never know. As for loop recorders, do not expect them to know what ILR stands for. Many will not know what "loop recorder" means either; through trial and error, I found "X cardiac device" to be most effective, where X was the brand name. That way they can search online for the name of the device and find out what it is, or call the heart hospital/cardiology department and ask them.
*My final tip isn't even on my Med ID bracelet, it's on my dogs' tags. I order them through a company that engraves dog tags both back and front. One side of their tags has the normal dog tag stuff--their names, our address and phone number--all that fun stuff in case they get lost. But on the reverse is a special message that relates to my medical ID bracelet. It reads:
MY OWNER HAS A MEDICAL
ID BRACELET. PLEASE
LOOK FOR IT IF I AM
FOUND WITH HER
This was a precaution I took back when I was still able to take walks with my dogs alone, in the event that I would faint whilst walking my dogs. (I kept the leash hooked to me so they couldn't run away if that happened, not only to keep the dog safe but in the hopes that it would help draw a good Samaritan's attention to me with the dog being there and that they would then see that I had a medical condition and call for help.)
I'm getting ready to order a new bracelet again, because I just had my loop recorder removed and found out about a new severe drug allergy. If I get a port before I get it made, it will likely read as follows:
SIS: HERNAME 555-555-5555
Note that the order of the lines on the front of the bracelet is dictated by varying max # of characters possible on each line I can have with the company I use. (There's a red "medical" symbol printed on the front that the text wraps around, forcing the lines to vary in length.) The back of the bracelet has one less line possible because the company's website URL is on the bottom of it. If anyone is interested in using the same company, I will say I've stuck with them over the years because if you follow the instructions and return the warranty card properly (with the required doctor verification that your ID is printed correctly as received initially--not really too much trouble for what you get in return), you get a one year AWESOME warranty on it:
If at any time within one calendar year you have any changes in your condition, etc., which mean that you need to get a new bracelet engraved because your existing one is no longer accurate, you can contact them and they will engrave you a new one to replace it with the needed changes for FREE. All you pay is a few bucks to cover shipping. It's AWESOME. I've done it twice before, and they handled the whole thing over the phone, it was SUPER EASY and my new one came VERY FAST and it was AWESOME not to have to pay for a new one so long as it's been under a year. (The warranty doesn't start counting over again at day one when you get a free one, though ... so eventually you do have to buy a new one again, LOL.)
They're at www.IdentifyYourself.com if anyone wants to check them out.
Thanks for all that information! I would never have thought of all the possibilities on my own. Good point on the need to use understandable words for medical emergency workers....and also a good idea to label dogs...I walk with dogs as well. I appreciate too the heads up on places to get this. and using caps. Lots of good tips here for sure!
I have been doing some research into this topic as well. I am concidering using one of the Web based Medical ID companies for mine. On the braclet / dog tag you only have basic info lisedt like your name, your ID number and an 800 number for EMT to call to get the dope on your medical problems, alregies, etc. Then on the Web site it is you that controls what information is listed and you can list everything ( including the more minor allergies ) that you want. It also makes it very easy to change your emergency contact number if they change their phone number. I haven't checked it out yet, but I suspect you can list several people to contact in case 1 or more are not reachable at all times.
My concern with that would be wanting statistics on how often EMTs/paramedics actually phone their system or whether that generally gets delayed until a patient reaches the hospital. In my experience, first responders are very hurried and their primary concern is stabilizing the patient and getting you to the hospital as quickly as possible; I have some doubt that they would take the time to call a phone number and get this information. Is there a way that you could get more information about what percentage of emergencies the company actually gets phoned and queried for the patient info? If you do find out more about it, please share with us, as I have been curious about this in the past myself.
All good information. Appreciate your researching this and putting it all out here.
When I do get one I need to convey that my BP is extremely reactive. I guess this is true of my syndrome in general. Not sure if it is for others. I can drink water and have my BP raise a lot. I cough and the diastolic goes up...Likewise some things make it drop quickly.
I am thinking their emergency meds might have a more dramatic effect....not sure.
Yes I do expect that emergency meds would have a more dramatic effect on us. One of the main reasons I have been researching this is because the last time I was bitten by an insect ( fire ant) I was given one of those Epi-pen shots and my BP plummeted, and they only gave me the Jr. version at the ER. If they had given me the full strength adult version I'm not so sure I would be around.
So now I am in a conundrum as to if I should or should not get a shot when I get stung or bitten. If I get a shot will that kill me, or if I don't get a shot will that kill me. That is yet another topic I have to talk to my doctor about especially since the bee and insect season is upon us now.
I had read, when my son started on Fludrocortisone, that when you are on a steroid doctors should know about it. So whenever he is not at home, I have him where a dog tag stating he takes Fludrocortisone and how much. I'm not sure if it is real important, but I guess better safe than sorry.
My brother works in EMS and they do not have time to make phone calls (or even a way unless they radio in to dispatch to do so which means they have to stop working on you).
If you have something they need to know ASAP it needs to be on you.
IF and that is a BIG IF they have time or staff they might look for information
If you are unconscious their first concern is airway and protecting it and getting you to the hospital.
If you have deadly allergies or medical issues that will affect you by things done in the "field" Make sure it is on you once you get to the hospital they have time to look and read more (and often more hands and eyes)
After having a reaction to a medication which left me unable to see or move (which made it really hard to understand my mumbles) and resulted with EMS and the ER getting dated or wrong information
--I only take new medications at home when other people are around and know, and I keep the bottle, NEXT to me
-- I keep all bottles of Current medications in a large zip loc next to my bed with medical information in the bag (here EMS must take all meds they SEE or are given by family or friends with them to the hospital)
-- I hide all medications I am no longer on but have a reason for keeping
-- In the medicines I carry I keep another small note with expanded medical information on it
I still have not gotten a medical ID bracelet but am still trying to figure out what to put on it so I am grateful for this thread.
I do not know about where you live, but here in TN there are always two EMT people in the ambulance. I have had experiences with 4 ambulance calls while living her. In each case while one of the EMT was establishing an IV o2 and the such the other was in contact with the hospital giving vitals and getting instructions from the ER doctors based on the information they were giving the hospital such as current meds and symptoms. When the free EMT was not talking to the hospital he was talking to family / friends to get a more complete history of the patient.
I have also noticed that they always seem to have a cell phone on them. I suspect they carry them in case the radio stops working since they handle calls way out in the country where you don't always have access to phones. BTW the hospital is 40 miles from my home but they keep an ambulance in the area at all times.
I do agree with you on the medicines in a bag thing and info in the bag, but that is only good if you happen to be at home when you need to call for help. It is when you are away from home that the Medical Alert thing comes into play. By having it a web based thing like I have been looking into you can keep your meds up to date and any adverse reactions to new meds. If it is all on a dog tag thing you would have to wait until a new one is etched and sent you to include the new allergy.
I also suspect it is by law if there is a number to call for the info they have to do it. That is one of my questions I intend to ask the company next week.
Where I am.. I am lucky to have a 4 minute average response and fire rescue and an ambulance always come, so an average call ends up with at least 2 EMT's and 2 paramedics.
Whoever gets there first starts and the ambulance always does transport of the patient. If needed the EMT drives and the paramedic that was on the ambulance and the fire paramedic ride with patient in the back.
In my last case when I was covered in hives and seizing they gave me IM Benadryl (could not get an IV fast enough) luckily by the time I was seizing they had one after several misses and several blew and gave me Valium. Both the ambulance and fire medic worked on me while the 3rd EMT worker talked to family since I was still breathing and had a heartbeat...
For instance recently my brother was called on an OD call, he happened to be not two minutes away and when they got there she was unconscious. She required both of them to work on her and try to talk to someone at the same time. She was hooked up to everything, intubated and loaded onto the ambulance before fire got there and off they went. They were called into a unsafe party situation where they normally wait for the police but most people had vanished and my brother could see her laying on the floor, the door was open, so they went in and were told what she OD'ed on so they had to move fast and get her to the hospital. Did not stop for anything except to let the fire paramedic in, in case they were needed.
We had a long discussion about this because it was the same night I had a friend relapse, overdose and die.
My county has the sad reality that every 35 hours someone is dieing from from overdosing on prescription medication :-(
We also have an huge elderly population so they see many people who are barely alive (if at all) and all they have time to do is bring them back or keep them alive until the hospital can take over.
Lastly we have lots of water so there are many drownings.
Here the job of EMS is to get you as quickly to the hospital as possible alive, if even barely so and often in cases when every minute means life or death it takes at least two people working on the patient and possibly the third talking to the med. center.
I am lucky to have several trauma centers, a Childrens hospital, specialty hospitals and 6 helicopters in my tri-county area. I am less then 30 miles to each but one is across the water so during a hurricane being on a peninsula things might get hairy. Maybe this is why they behave as they do, here.
Having a large elderly population many alarm companies have med. alert alarms and if someone activates it they give their information to the 911 dispatcher when making a call this is fed to the EMS Dispatch and that Med center I was talking about, but that seems different then what you are talking about.
I think it is important to have something one your person if you have a condition that EMS could end up doing more damage then good or just needs to know, maybe call EMS and find out what they suggest, I know I was told what was NOT helpful I bet they would know WHAT was. I know it might sound crazy that my brother works in EMS and I did not have things right but it was a "never me" situation....stupid but lucky to live and learn.
Well I guess this is one case where it pays to live in the country. :)
Yes it is much different here. The EMS dispatch is right in the ER of the hospital. It might be this way because the hospital covers 3 large counties ( area wise that is ). Each county is assigned 2 ambulances so that at least one will be in its county at any given time. The hospital also has a small ER ( to handle minor emergencies) in each of the counties. The small ER in each county also is used as a walk-in clinic for the county. They usually only have 1 doctor, and LPN, and a clerk for each county ER on duty.
Great comments and ideas. I was thinking of getting a large red folder to put my emergency medical information in my house so if something happens here it will be very noticeable. I will put it in a very visible place. I also have thought of talking to our local Emergency Responders about my condition as I live in a very small mountain community and they are neighbors. They helicoptor us out if it is an extreme emergency, otherwise it is ambulance and takes an hour and a half, but the heliport is just 5 minutes from my house and we can be at a major hospital in 15 minutes. I like the idea of a bracelet for if I am away from home that I can change readily on line or by phone and I plan to update my emergency information and have it readily available in my purse perhaps again in a red envelope.
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