Tuesday, September 6, 2016

Medical Info Cards: Why I Have Them, What They Look Like, and Why You Should Care

So I've shared a few times with other medically complex patients (aka fellow zebras) the template for my medical info cards that I carry with me everywhere. I figured I would do an entire post about how I created them, what information is on the cards, and why it's important (both for complex medical histories AND for friends and family who spend time with us).

So, first, why do I carry medical info cards with me? The short answer is because everything wouldn't fit on my medical alert bracelet. The long answer is a bit more involved (hence, LONG =P). As my mast cell issues increased (and even before I was technically diagnosed), I was what we jokingly called a "frequent flyer" at our local ERs. Notice the plural there...more than one ER. Depending on where we were when my mast cells went crazy, we would typically go to 1 of 3-4 emergency rooms for treatment.

And that's where it gets complicated...each ER has multiple doctors on staff for both day and night shift and dozens of nurses. Then of course, not every visit was for the same reason...some were anaphylaxis, some were severe GI issues, the occasional head injury/passing out episode, and then you get the random we-have-no-idea-what-is-going-on-but-it-needs-some-help moments. Add to that my quite extensive medication list that I can barely remember when I'm completely conscious and feeling good let alone in the midst of severe pain/nausea/dizziness/anaphylaxis, my body's wacky reactions to all sorts of "normal" treatments, and our slightly unusual treatment protocol created by my doctors...all of a sudden my husband (or me if I happened to go into anaphylaxis without him around) is basically trying to recite a list of medical information longer than the Gettysburg Address and hoping the EMTs/ER staff are paying close enough attention to every detail that nothing gets missed...

So that's where the cards came into play. Like I said, it's too much to put on a bracelet, so I create these cards to be easily portable, able to communicate for me when I can't for myself, and just to make life easier for my husband and the medical professionals treating me. I have gotten great responses from doctors, nurses, EMTs, etc. who all said they wished every medically complex patients had that kind of information on them so they didn't have to play a guessing game to figure out what to do.

That said, I DO wear a medical bracelet. It is relatively simple with just the most important info on it and everything else on my cards. I use a RoadID as I found them to be great with the amount of space available and comfortable to wear 24/7.

Mine has 5 lines:
Line 1) NAME
Line 3) ANAPHYLAXIS (Because if something were to happen and I couldn't explain what was going on, this is pretty important for anyone to know)
Line 4) MAST CELL DISEASE (This is here so that the EMTs/whoever know that there is something unusual going on which might make them look for more information (especially after they read the final line) and so that if it is anaphylaxis, they see that it doesn't necessarily have to be from a "normal" allergen)

And that's where my cards begin. In my backpack, I have a red neoprene bag right at the top that says in bold letters MAST CELL DISEASE EMERGENCY PROTOCOL. Hopefully that will catch their eye (especially after reading my bracelet) and they'll open the bag. Once they do, they will find 8-9 cards help together with a binder clip (super high tech here =P) that have all my emergency info on them. I'm going to go through what I have on each card (in painful detail) so that hopefully other medically complex patients can use this to create cards personalized for whatever specific needs you may have.

Card 1
The first card (i.e. the one I keep on top) is not specifically medical information. Instead it has this short paragraph (feel free to personalize it for your needs):
I have a systemic mast cell disorder called Mast Cell Activation Syndrome. It puts me at a high risk for anaphylaxis even from minor procedures or non-allergy related medical issues. I need to be treated immediately with the medications listed under ER Protocol to minimize the risk of an allergic response. I do not always present with normal symptoms, so these protocols have been compiled by my doctors to reduce my risk for severe reactions. Thank you for treating me today.

Card 2
The next card has my name, birthday, and address and 2 emergency contacts and their phone numbers. I also list my major diagnoses on this card.
**Be careful to not over-list diagnoses. As many of you know, when you live with chronic conditions, you collect acronyms and diagnoses faster than work experience. You don't need to list every last diagnosis you have ever received. List the main diagnoses and ones that make a difference in your treatment needs.

Card 3
This is where I list my ER Protocols. You will need to talk with your doctor about the best treatment plan for you should you end up in the ER. I have 3 sections for mine. The first is what we call my Standard Protocol. These are medications that I receive ANY time I end up in the ER regardless of the reason. Since I have mast cell disease, just stressful environments (I think ERs sufficiently qualify...) can exacerbate a reaction or cause my mast cells to degranulate even if that was not the main reason we went in. The Standard Protocol are medications that will help control any mast cell issues I may be having even if the main reason I'm in the ER is not specifically mast cell related. The other 2 sections are my Anaphylaxis Treatment Protocol and GI Treatment Protocol. Both of these go into detail on what medications and doses I typically need/tolerate for these two common issues that I may end up in the ER for. There are other reasons I may end up in the ER other than anaphylaxis or GI flare, but based on my dosages and treatments for these, we can usually come up with an effective and safe treatment plan based on what we already know my body can handle.

Card 4
On this card, I list all my allergies. I have a section for food allergies, one for medication allergies, and a section to simply state that I am extremely sensitive to medications in general and that when starting a new medication to start with a low dose and increase as needed. I also list things I know I am sensitive to but may not specifically have an allergy.

Card 5
Medications...so important to have this information with you. If you're like me, this list may be so complicated you can't remember it even on your good days...so always have a list of your meds! I list medications and supplements separately just so it is easy to look over. I list the name of the medication, what condition I take it for (i.e. mast cell stabilizer, GI motility, etc.), how often I take it, and how I take it. So an example would look like: Phenergan (GP) 12.5 mg/10 mL - PRN in PEG-J

Card 6
I have a card that lists all my doctors, their specialty, where they practice, and their phone number. Here is where you want to list ALL the doctors you see regularly. Even if it's not a specific diagnosis you listed on Card 2...if you have on/off blood sugar issues, you might not consider it a major diagnosis so you might not need to list it on Card 2. However, if you end up in the ER and they notice your sugars are going crazy, they can see you have an endocrinologist and can either call your doctor to see what is going on or tell you to follow-up. If you have a known issue that is being treated by a physician and you don't list their info, you could end up admitted for something you really don't need admitted for or end up having to wait to see an on-call doctor who might still admit you if it's something weird since they're not familiar with your body. So don't be afraid to list them all. That said, if you've only seen a doctor once or twice for something super minor, you probably don't need to worry about those.

Card 7
This card has random miscellaneous medical information that might not appear elsewhere. Customize this to your specific condition and needs. I list my height, weight, normal resting heart rate, normal resting blood pressure, and normal temperature. Just below that I have a disclaimer that says I run low on all the above and a "normal" reading is often HIGH for me. A temperature of 99.x F (just to clarify and not scare any non-US readers =P) is the same as 100.x F in someone who doesn't have a resting temperature in the low 97s. I also have a section I call PRE-TREATMENT PROTOCOL. This is similar to my Standard Protocol from Card 3. I put it here, though, because if I need scans with contrast (that I'm not allergic to) or uncomfortable tests, both could set off my mast cells and this pre-treatment helps keep that under control. The last section I have on this card is my feeding tube information. I list the type of tube I have, when it was first placed and by which doctor, when it was most recently changed and that doctor, the formula I use, rate I run it, total volume/calories, and how often and how much I flush it. Obviously if you don't have a feeding tube, you won't need this section. If you have other lines or implanted devices, you can add those here and make sure all relevant info is listed.

Card 8
Almost done, I promise! This card is what I call RECENT MEDICAL INFORMATION. Here is where I put things that may be new but temporary, so not quite needing to update the other cards just yet. I might put a medication I am trying for a few weeks here. If I'm doing an on-going test like a SmartPill study where you have a pill inside you for 2-5+ days and have certain limitations because of that, I'll put that here. If I have important testing coming up and have to avoid specific medications for some period of time, that goes here, too. Just whatever I don't need to add to the other cards just yet but could be needed for people treating me.

Card 9
Most people reading this will probably not need this card, but some of you will, so I figured I would share this anyway. This card contains my service dog information. I put Leni's name, age, and breed. Right under that, I list why I have her and what specific tasks she performs that could be relevant for EMTs/doctors to know. For me, I specifically say that she is trained for mast cell and low sugar alerts, that if she is pawing me she is alerting, and if my sugar is within a normal range, they need to treat me quickly with my Standard Protocol to hopefully prevent a severe reaction. I have a line that says "Do NOT separate from handler. Call (insert emergency contact here) at (xxx-xxx-xxxx) in an emergency." Then at the bottom I list a few commands that could be needed for EMTs/doctors to know to keep her with me but out of the way.

So those are my cards! I'll attach a picture of what they look like when I'm done. I print them, cut them out, and laminate them so they last. Then, as I said before, use a binder clip to keep them together and keep them in my mast cell bag in my backpack. I would highly recommend and encourage all chronic illness patients to have something like them with you! These have been so important many times for me, and I am so thankful to have had them.

These are 4 of my cards. Top left is the "cover" for the others. Top right lists my allergies. Bottom left is my service dog information. Bottom right is where I would list any recent medical info that might be temporarily relevant for my treatment.
When you're in a situation where you cannot speak for yourself, you NEED to have a way to communicate. These cards are a great way to make sure your specific needs/allergies/treatment protocols/etc. are communicated even if something happened miles from home with no one around who knows you.

And tell your friends and family you have them! It has made things much easier for my husband when we end up in the ER, especially ones we haven't been to before or if we're seeing doctors who haven't treated me before. He doesn't have to memorize the Gettysburg Address each time making sure he has the more recent updates, and the doctors don't have to try to remember a long list of complicated issues in the midst of dealing with a medical crisis. Plus, if you're out with friends who know you have medical issues but maybe don't know all the specific details, this takes the guess work away as long as they know to let the EMTs/doctors know you carry these cards.

I hope this was helpful for other chronic illness patients and my family and friends who now know (if you didn't before) that I always have these cards on me. (Side note: I also always have EpiPens with me...usually 4, so know to look for those too in an emergency =P). Please feel free to ask if you have any other questions and share your own ways of keeping your medical information with you!

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