What to Pack in Your Personal Medical Bag
A personal medical bag? Why would I need a medical bag?
That was my question too.
Until recently, my personal “medical bag” was just a Ziploc containing my epi-pen and a bottle of children’s liquid Benadryl. Despite having Alpha-Gal Syndrome, I usually don’t carry more than that.
Let me tell you why I changed things up.
Self-advocacy is not enough
Recently, I wrote a post about developing self-advocacy skills when talking to medical professionals. I the post, I share about my experience trying to navigate Alpha-Gal Syndrome and a standard non-emergency colonoscopy.
Talking to medical professionals prior to my colonoscopy made me realize that my local health professionals don’t know much about Alpha-Gal Syndrome. They don’t even know how to spell it. That could be an issue in an emergency situation.
I have also noticed a large uptick in the number of people posting in Alpha-Gal Facebook pages about sitting in the ER with uneducated medical professionals. Uneducated in the sense that they don’t know what is safe to give their patients with AGS. This is very frightening. Your own doctor could give you medication that could trigger an anaphylactic reaction!
Generally, I can rely on my own knowledge and self-advocacy skills to make sure I don’t take anything that could be harmful for me. But self-advocacy skills are not always enough.
What if I were in an accident and could not advocate for myself. My husband and kids don’t understand everything. They just trust the medical establishment to take care of me and know what they are doing. Yikes!
This is where your personal medical bag can come into play.
Choosing a personal medical bag
Your personal medical bag will contain first aid supplies in case you have an allergic reaction, as well as information for health professionals. This way, in case of an emergency, your health providers will know about your Alpha-Gal Syndrome and how to treat you accordingly.
Choose a bag that has a medical alert symbol on it. This is so that the bag and contents are more easily found. At first I wanted something cutesy, but then I realized a bright red bag with a medical symbol would be much easier for an EMS worker to recognize.
Example personal medical bag
My bag is also insulated and comes with ice packs to help keep the epi pen and other contents from overheating. Epi pens are supposed to be stored at room temperature, so you really don’t want to leave them in your car. If your epi pen has ever been allowed to overheat, be sure that you check the liquid inside. The liquid should be clear. If yours has gotten cloudy be sure to request a new one from your doctor.
What to pack in your medical bag
Once you’ve chosen a personal medical bag, it’s time to fill it with supplies!
Start with your Epi pen and choice of antihistamine. I usually use liquid Benadryl but I just recently bought some Unisom sleep melts, because they are easier to carry along. I’ve had times when my liquid Benadryl leaked out and made a mess in my bag. Not fun!
Next, include a list of meds that are safely mammal-free. Click here for a list of meds and info on whether or not they are safe for those with AGS. Just be aware this list is from 2019, so it may not be completely accurate for 2022. I suggest double-checking to be sure.
I also have two other documents in my medical bag. Both can be found in the files section of the Alpha Gal Support Non-Public Facebook group. (If you haven’t joined the group yet, you definitely should!)
One is called the Alpha Gal Hospital Sheet, and lists regularly administered drugs that could cause an allergic reaction in someone with Alpha-Gal Syndrome. Even if you don’t carry this exact sheet, I recommend you carry at list a basic list of medications to avoid. Click here for a list of mammalian byproduct ingredients. If a medication has one of these ingredients, it’s on the no-no list.
The other document I carry in my personal medical bag is a brief document containing basic information on Alpha-Gal Syndrome. It is a quick read for any medical professionals that don’t know about our disease.
Extra items to pack
If there is room in your personal medical bag you may want to consider adding the following:
Alpha-Gal safe pain meds
Safe snacks
Safe drink mix in case of dehydrations
Epi-pen instructions
While these items are not necessary, they are nice to have on hand. It’s always better to be prepared.