Yes, You Need a Medical Alert Bracelet!

Shared with permission from https://aiunited.org/medicalbracelets/

Advice from a Volunteer Firefighter with Adrenal Insufficiency

My name is Jeannie, and I have been diagnosed with Secondary AI since March of 2015. To make a long story short, I was diagnosed with a pituitary adenoma in Feb of 2015. It was apron 8mm x 10mm at the time wit was found. On April 25th, 2015 I was getting ready for work in the early morning hours.. I passed out in my bathroom and was immediately rushed to the hospital by my husband. They did a secondary MRI and found that the tumor had tripled in size to 23mm x almost 41mm. My Cortisol was also so low it was undetectable by the lab. I was taken by ambulance to Emory University hospital in Atlanta where the Neurosurgeon I had been in consult with was. I arrived there on Sunday and was in Surgery Wednesday Morning. The surgery took 9 hours and recovery was close to 6.

Prior to this all taking place I was a volunteer firefighter, and had worked EMS for almost 16 years. I have been in nearly every situation possible. I see so many people that have our condition asking about Medic Alert bracelets, What kind they should have, what it should say on it, etc. So I have put together a short list to help out a little bit. This is coming from both someone who has this extremely rare disease, and also from the Emergency Medical Side of me. Knowing what We as medics look for in the field, How quickly things move, what we ask or need to know, etc.

Please know that this IS NOT Professional Medical advice, But this is advice coming from someone who can shed some light on how to potentially save your life if you should ever be alone, or without anyone who knows your condition and you fall unconscious or are unable to the the responders what your condition is.

First off if you are looking for a medic alert bracelet or wondering if you should get one.

**The answer is yes, If you have been diagnosed ANY TYPE of adrenal insufficient or are on replacement medication.. YES. you need one.**

Here are some of those reasons and some pointers on what they should look like / what they should say.

#1– If you are found unconscious, and there are not bystanders around to tell emergency crews what is wrong with you, You will go longer without your steroids. If we see on your bracelet that you are steroid dependent, it dissolves the ENTIRE guessing game of why you’re unconscious.

#2– It should have on there your emergency contact and a GOOD telephone number. That way if nothing else. We can call them. NOT EVERY EMS AGENCY HAS ACCESS TO THE “CLOUD” BASED SYSTEMS THAT STORE YOUR INFO. Please be sure that if your emergency contacts number changes.. You change it on your bracelet. There is nothing worse than wasted time calling a number that doesn’t belong to the person we NEED to talk to.

#3– DO NOT MAKE IT “PRETTY” OR “NOT SO OBVIOUS”. I can not stress this enough. Ladies I know that you want the cute ones that look like normal bracelets, and have pretty charms, etc on them… THE ENTIRE point of a medical alert bracelet is that someone needs to see it and know that they should look at it. If it looks like a regular bracelet or regular necklace and it isn’t obvious within the first 3 seconds once we get to you and look in the obvious places (neck/wrist). it will NOT get seen. I promise you, we are too busy trying to play the guessing game of why you are not responding, than to take a look at every single piece of regular jewelry and see if it might have a really small inscribing of what is wrong with you. Once again. Make it noticeable. We will see that we need to look at it. Once we do. The guessing game is more than likely OVER. and we can begin to treat you appropriately.

#4– Most EMT’s and Paramedics Don’t Understand or know about Addisons or the treatment involved. If nothing else, carry a letter from your doctor explaining what is wrong with you, etc. It is very rare, and NOT covered in most Paramedic courses. So please, for those of you that put “ADRENAL INSUFFICIENT” on your bracelet and NOT “STEROID DEPENDENT” please keep in mind that you may end up with the Paramedic that just graduated, is nervous, and will mistake adrenal insufficiency for Adrenaline insufficiency.. and try to give you epinephrine. Please understand that I have seen this almost happen. It is something that is easily misunderstood in the heat of the moment.

#5– If you have an emergency injection that you carry with you all the time, on your person, or somewhere close. PUT ON THERE THAT YOU HAVE IT! MOST ems agencies have standing protocol that they can assist with emergency medications (Don’t jump in here if you are one of those states that doesn’t allow it.. I said most) That way if we find you down, and look at your bracelet, AND see that you have emergency meds with you… guess what now, not only is the guessing game over, You’re ALSO getting the RIGHT EMERGENCY MEDS, instead of us having to either give you what we carry, or you having to wait until you get to the ER and the ER doc has to go through your file and figure out that you need the medication that’s been in your pocketbook the ENTIRE TIME.If you are unsure if your state allows this, or if you Local EMS agency can do this. Contact their local medical control and ask. If they do, Please offer to give a small talk on what the disease is and how to use the emergency kit. Most will know once they see the acto-vial, but if they do not, Please educate them. Explain to them that it can be the only thing that could save your life.

Please take the time and make sure that you have correct information on your bracelet. Secondary or Primary, the treatment in an Emergency situation is the same. So there is NO need for you to spell out if you are secondary or primary. Both get the emergency injection in case of a crisis. Both get fluid bolus, heart and blood pressure monitoring. Nothing is different when it comes to an emergency situation. If you have any questions on the wording or what to get on it. Be sure you at least have an emergency contact, That you are steroid dependent, and where your emergency injection is located.

IF you know that your local EMS agency uses the “cloud” for stored emergency info, you can spend the money to get it. But I worked for service that covered a county with over 100 sq miles, and we didn’t use it. It is unreliable and takes too much time to log in to the system, try to read the small number on your band, type it in, etc. When you can simply put the information on the band itself.

If you have any other further questions, You can refer to AIU’s emergency page.

Medical Apps, Part 4: RXmindme

I often forget to take my meds.  And other days, I can’t remember if I took them or not.

So, here’s another great (FREE!) iPhone App:  Rxmindme

From their features list at http://www.rxmind.me/Features.aspx

Making your life easy

RxmindMe includes:

  • Nine different types of reminders
  • A Passcode Lock screen for your privacy
  • Multiple types of alert sounds
  • Photos of your prescriptions
  • Email your prescription history
  • The FDA Drug Database for easy searching of medications
  • Historical records of all your reminders and prescriptions
  • Multitasking
  • Fast App Switching
  • iPhone 4 / iPod touch 4 – Retina Graphics
  • Snoozing Capabilities, 15 minutes, 30 minutes, 1 hour, or 2 hours
  • Ability to add multipule prescriptions / pills / vitamins / medications to a single reminder

RxmindMe has a growing feature set. We keep adding new things to help fellow pill takers monitor their medications, track what they take, and view their history of their medications.

We believe compliance is important for anyone taking medications, that is what RxmindMe aims to do, help you stay healthy and safe. No matter what you call your medications – pills, prescriptions, medications, or vitamins, we have the App to track them all.

RxmindMe allows you to use any application and receive reminders. We utilize iOS 4’s Local Notifications instead of the old Push Notifications. With Local Notifications, you need no network connection. Meaning you’ll receive your reminders anywhere at any time.

The home screen of RxmindMe gives you all your reminders for the day in once place. It allows you to easily identify which reminders you have missed, which reminders are coming up, and which reminders you have already taken.

From this home screen, you will have the option to create snoozes, add as needed reminders, and add prescriptions you take randomly throughout the day – like Asprin.

RxmindMe allows you to create nine different types of reminders

  • Daily reminders, ones that can occur on any day of the week
  • Weekly reminders, like daily reminders, but you can set weekly repeat intervals
  • Monthly reminders, monthly reminders that occur on a specific date during the month
  • Monthly reminders, monthly reminders that occur on a specific day of the week of a specific week of the month – for example, the last Friday of the month
  • Our new Every “X” Days reminder, repeats every few days
  • Hourly reminders for specific hourly intervals
  • As needed reminders which are taken infrequently
  • On specific dates, reminders that you want to occur on specific dates – for example the 28th of November

Now with the ability for devices with cameras to take photos of your prescriptions, you can see visually what you are supposed to take.

RxmindMe will keep and store your photos for your medicates, then it will display them along your reminders.RxmindMe now includes the up to date FDA database. You can search for prescriptions in RxmindMe, select the one you want, and it will auto populate the details for you. No more entering the units and name yourself!

No more forgotten meds for me!

Medical Apps, Part 3: Capzule PHR

I just found a new iPhone app today which looks pretty good. You can add family members and send the info to another phone so everyone has the info they need. It’s only $.99 in the iTunes store:

It’s called Capzule PHR and the website is http://capzule.com/phr/ with help files at http://capzule.com/phr/phrhowto.html

There’s a free version to try called Capzule PHR Free

Features

* Push Notification to alert appointments
* Data Visualization via Interactive Timeline
* Edit records and upload files from Desktop/Laptop
* Record conditions and allergies
* Store doctor appointments
* Enter medications
* Email summary and graphs
* Print or download summary from Desktop/Laptop
* Maintain immunization records
* Enter vitals in Metric or Standard units
* Analyze line graphs of vitals and lab results
* Keep family, social, and medical history together
* Create custom health screening templates
* Enter notes, upload results and files
* Manage physician and insurance information
* Reset password when password is lost
* Categorize Notes and Attachments
* Email flowsheet data in CSV format along with graphs
* Email Summary with graphs embedded
* Backup and Restore from Desktop/Laptop
* Export CSV data from Desktop/Laptop
* Email documents
* Add files from other Apps (iOS 3.2+)
* Summary Reporting Filter

Medical Apps, Part 2: FindER

smilez133 posted this on the message boards here

Massachusetts General Hospital Launches iPhone App to Locate Emergency Rooms

FindER Connects Users to the Most Complete Database of ERs in the U.S.

BOSTON—Researchers at Massachusetts General Hospital’s (MGH) Emergency Medicine Network (EMNet) announced today the launch of EMNet findER™, a free iPhone application designed to help users locate the closest emergency room to their current location, as well as provide directions and additional information with a touch of the screen. FindER uses the iPhone’s global positioning system to quickly direct patients to emergency rooms anywhere within the United States.

“FindER is designed to provide key information to people experiencing health emergencies,” says Carlos A. Camargo MD, of MGH’s Department of Emergency Medicine and EMNet director. “FindER uses information from EMNet’s own database of emergency departments, which is the most complete and accurate in the nation.”

Along with directions and general information, findER is designed for quick phone calls to both the care-center itself and in cases where necessary, 911 emergency services.

“EMNet researchers maintain a database of nearly 5,000 emergency rooms in the United States. Unlike a simple Google search where the results may include many emergency centers that have closed or moved, or even veterinary hospitals, findER’s results are based on an aggregation of emergency room listings from multiple sources that have been confirmed by researchers at EMNet,” says Camargo. “FindER is designed to help patients get to emergency rooms in the shortest amount of time.”

FindER is ideal for travelers, especially those suffering chronic medical conditions, or those traveling with friends or relatives with health problems. FindERis available now as a free download in the iTunes app store. Simply click this link or search “EMNet findER,” to download. For a short demonstration video, users can visit YouTube.

From http://www.massgeneral.org/about/pressrelease.aspx?id=1248

MaryONote: Just as info – the iTunes store said that there was nothing called FindER when I did a search. I found it only by typing EMNet findER. I have the app – looks great – and I hope I never need it again!

iPhone Medical Apps, part 2

Part one was a blog post here.  That page includes comments and suggestions from readers.

National Library of Medicine Launches Mobile MedlinePlus to Meet the Health Information Needs of an On-the-Go Public

Wondering what the side effects are for your new prescription? Go to Mobile MedlinePlus (http://m.medlineplus.gov) while you’re waiting for the pharmacist to fill your order!

Or, instantly look up the symptoms of H1N1 flu if you’re at the supermarket and your child’s school calls you to tell you he doesn’t feel well.

The National Library of Medicine’s Mobile Medline Plus builds on the NLM’s MedlinePlus Internet service, which provides authoritative consumer health information to over 10 million visitors per month. These visitors access MedlinePlus (http://medlineplus.gov) from throughout the United States as well many other countries, and use desktop computers, laptops and even mobile devices to get there.

The mobile Internet audience is large and growing fast, almost doubling from February 2007 to February 2009. Some experts predict that within the next five years, more people will connect to the Internet via mobile devices than via desktop or laptop computers. People use their mobile devices to accomplish a variety of tasks, including finding health information. With this in mind, NLM developed the mobile version of MedlinePlus to bring high-quality health information to users on the go.

“We know that a huge number of people are seeking good health information on the Web, noted NLM Director Dr. Donald A.B. Lindberg. What better way to reach out to them than by offering this new mobile service, which delivers trustworthy, consumer-friendly information instantly, anywhere?”

Mobile MedlinePlus is available in English and Spanish (http://m.medlineplus.gov/spanish) and includes a subset of content from the full Web site. It includes summaries for over 800 diseases, wellness topics, the latest health news, an illustrated medical encyclopedia, and information on prescription and over-the-counter medications.

For instance, you could visit the “Talking With Your Doctor” page on Mobile MedlinePlus to learn how to get the most out of your doctor’s visit.

Mobile MedlinePlus can also help you when you’re trying to choose an over-the-counter cold medicine at the drug store.

And if you’re traveling abroad, you can use Mobile MedlinePlus to learn about safe drinking water.

Mobile MedlinePlus puts reliable health information at your fingertips.

*High resolution screen shot of Mobile MedlinePlus available upon request.

The National Library of Medicine is part of the National Institutes of Health, an agency of the U.S. Department of Health and Human Services. It is the nation’s largest medical library.

The National Institutes of Health (NIH) — The Nation’s Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

From http://www.nih.gov/news/health/jan2010/nlm-22.htm?utm_source=twitterfeed&utm_medium=twitter

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