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Home » Anaphylaxis » The day I learned to AWLAYS have 2 EpiPens AND benadryl with me

The day I learned to AWLAYS have 2 EpiPens AND benadryl with me

Accidents DO happen. And when you least expect it and aren’t prepared fully for them. This week I learned the hard way why I should always, always, always, ALWAYS have not just an EpiPen with me, but 2 of them AND benadryl. So, please, don’t make the same mistake I did… your life may depend on it.

It all started as a normal day. Ok, well not quite totally normal because I didn’t have any homework to do (yay for finals being over!!), but a normal Sunday. I had great plans to bake all afternoon after church. Well, those plans never materialized.

I had a quick snack before we left for church knowing that if I didn’t eat something (in addition to breakfast earlier) I was going to be hungry during the service. I thought it was strange that I wasn’t hungry for the muffin after taking a few bits. It was supposed to be safe and I had safely eaten others in the same bag the days before. Thinking nothing of it, I just grabbed an EpiPen like I usually did and stuck it in my jacket and headed off to church with my family.

It didn’t take too long before I noticed I was feeling funny and then my throat started swelling. Trying to decide what to do took considerably longer than it did for the reaction to start. I quickly realized my mistake of not having benadryl with me to try to quell the reaction before it got out of hand. I told the Deaf Ministry leader next to me that something was wrong and I had a feeling I might need the EpiPen, but didn’t want to. She told me to “do what you need to do.” I still didn’t like the idea of using it, but at the end of the service, I used my 1 EpiPen I had with me, and then things just kept rolling.

As usual, the epinephrine worked really fast, like in 15-30 seconds and I could breathe better and my lungs weren’t trying to clamp down on me. Our church is pretty big (and has several services over the weekend) and they have a medical kit and a handful of people who are nurses and doctors there. So, one of the nurses came and monitored me till the paramedics arrived. All was good till I started getting itchy again, and then she noticed I had hives on my face. And my throat was starting to swell again. Ugh.

So, they decided it was wisest to have me transported to the ER via ambulance, which in the end was a good idea as I never dreamed what would happen next. En-route, my throat (which had been starting to swell again just after the paramedics got to the church) was really starting to swell again, so they jabbed another EpiPen in my leg (same one), and turned lights and sirens on and honked at cars to get out of the way. I have a feeling that we went through more than 1 red light. I’m not kidding.

At the ER, they got things stabilized, at least for the first 2-3 hours… then my throat started to swell, again. So, they decided they were going to admit me for observation overnight. I was not a very happy camper; I just wanted to be home. Our insurance decided I needed to be transferred to another hospital for this, so yet another ambulance ride (thankfully, an uneventful ride, no extra EpiPens, no lights and sirens).

Before I finally fell asleep that night, my mouth and tongue started swelling, to the point where I was having difficulty speaking and being easily understood. My mouth felt swollen, and my tongue felt thick and heavy. Benadryl took care of it thankfully. 3-4 hours later around 4:30 am my mouth and tongue started to swell yet again, and my mom noticed my lips were swollen too and my face was red. Seriously, immune system, can’t you just stop over-reacting to “normal” foods!? Benadryl and another neb later, I was breathing and feeling more normal again, aside from exhausted.

Thankfully, besides a bit of nausea and being exhausted, that was the last of it. At 2pm, they finally discharged me, and I was realllly happy when the nurse took out the IV and disconnected me from the monitors. I was free at last after over 25 hours in the hospital!! Yay!! Now I have some not so lovely bruises from the failed IV, the working IV, and other stuff including both EpiPens. And thankfully this time around my leg hasn’t been as sore as last time after the EpiPens. Last night I also got 12 1/2 hours of uninterrupted sleep! Wahoo! A TON more than the previous night of 2 1/2 to 3 hours of interrupted sleep in the hospital!

A note on hospital food: It really isn’t that good at all… and they’re HORRIBLE at feeding patients with severe food allergies. For breakfast the only thing they could safely give me was a hard boiled egg, 2 cups of fruit from cans, and some apple juice. For lunch, it was worse. The conversation I had went like this:
Kitchen: Would you like a hamburger, without the bun, or some fish?
Me: well, how is the hamburger cooked?
Kitchen: on a grill of course!
Me: is the grill used for other things too?
Kitchen: of course.
Me: well, then that’s not going to work safely.
Kitchen: ok, how about a salad?
Me: what’s in the salad?
Kitchen: turkey and ham.
Me: how are they cooked?
Kitchen: they come already cooked, they’re lunch-meat.
Me: oh… well, what else is in it because deli meat often has other ingredients.
Kitchen: I don’t know.
Me: Oh, well, then that isn’t going to work either.
Kitchen: well, then I don’t know what else to give you. We could give you fruit. How about 2 things of peaches and 2 things of pears?
Me: ok, I guess so.

So, the basically gave me the same thing as I had for breakfast, except doubled and minus the hard boiled egg. Seriously??? All you’re going to do to feed a food allergic patient is to chop out all the options that they can’t have and even then the options you give them might not be safe and could very likely be cross-contaminated and you didn’t even think of that as a possibly seriously deadly problem??? Thankfully my mom brought me some soy milk from home and I didn’t have much of an appetite the whole time I was there, and that which I did eat there did end up being safe.

Looking back, if I had had benadryl with me at church, I may have been able to quell the reaction faster and avoid the hospital admission and only need to spend 4 hours in the ER. I could also possibly have avoided the hospital admission if I had used the EpiPen faster than I did. And after having needed a total of 2 EpiPens, I’ve been reminded of the importance of ALWAYS carrying 2 EpiPens with me EVERYWHERE. Sunday I wore a skirt that didn’t have belt loops, so I didn’t wear my usual EpiPen pouch which always has 2 EpiPens and benadryl. I’m thankful that I did grab at least 1 EpiPen and stick it in my jacket. Looks like I’m going to need to adjust my current Epi pouch or either make a new one that has a shoulder strap or buy one. I guess that’s going to be one of my next sewing projects!

Until then, I’m going to make sure that I always carry 2 EpiPens and some benadryl on me at ALL times. I’ve heard that sometimes 1 EpiPen may malfunction… and then there’s the possibility of what I experienced happening: actually needing 2 doses of epinephrine. What if I was too far from a hospital and on the way there needed a second dose and didn’t have it with me? Just because in the past you’ve only needed 1 dose of epinephrine does NOT mean that in the future you won’t need 2.

Another thing I’ve learned the hard way from this reaction is that it is really important to always have my food on a clean table/surface. So, as much as sometimes I hate it, I’m making sure to take the extra time to clean the table before I eat anything or prepare any food. And, I’m making sure to not lose my vigilance when it comes to anything that has to do with my food I’m going to eat. Safety and life are really important.

And even though the aftermath of all this is not an easy thing to deal with (including the prednisone taper and the fact that I spent over 25 hours in the hospital and needed 2 EpiPens and had an ambulance ride with lights and sirens) and being reminded that I have severe food allergies and that they do stink and are annoying, I’m also reminded that God has a plan for my life and is in control (even when it might not seem like it) and He won’t let me die till He says it is time. Thanks be to God!

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5 Comments

  1. Chris says:

    I ran across your site while searching for allergy info for my boyfriend who also has life threatening food allergies. I learned about allergy associates in La Crosse WI. you might want to check them out. sounds like they have a lot of success. I just hope I can get my boyfriend to go, he’s kinda stubborn. good luck and God bless.

  2. A says:

    I am surprised that emergency kit do not include corticosteroids such as prednisone 20 mg or betamethasone oral solution 0.05% (15 mg), which is the most potent. The purpose is to quell the reaction before it got out of hand like the antihistaminic Benadryl, but with a different way. Benadryl only prevent the symptoms but Corticosteroids can even abat them. It is very efficacious. Daily doses of Corticosteroids are known to give a lot of side-effects, but not if taken once for an emergency purpose such as anaphylaxis.
    Corticosteroids seem an overlooked treatment that might prevent fatal outcome, together with Benadryl and Epipen.

  3. Amanda says:

    Also consider carrying liquid Benedryl. You will only find it in the children’s section. Sometimes the adult dose is listed and sometimes it’s not. The adult dose is 4 teaspoons. It works considerably faster than the Benedryl pill. Whenever my ears start to flush, or my lips tingle, which is usually my first sign, I take the 4 teaspoons immediately and start a little timer I carry.

    At the five minute mark, I’ve always felt rapid relief. If there was tightness in my chest, which feels like someone is bear hugging me and trying to crack a rib, it leaves at the 3 minute mark, and by the 5 minute mark the hotness I feel in my face is gone.

    As soon as I take the Benedryl, I take my Epi out of the plastic case, take off the blue cap, then sit down on the floor (in case of collapse due to low blood pressure, who needs a broken face?) holding the Epi in my right hand, ready to stab myself at the five minute mark if my symptoms haven’t started to retreat, or if they worsen. Cross my fingers, my strategy has always worked and I haven’t needed to stab myself yet.

    If I’m alone, I call someone, usually my husband, to put on speaker phone to wait out the five minutes, so that if I don’t respond, an ambulance will be called for me. I also practice breathing in through my nose slowly for five seconds, then breathing out through my mouth for five seconds. Having an anaphylactic attack is terrifying and making sure I don’t hyperventilate and increase my anxiety is crucial. While breathing I stare at the timer and use the ticking seconds to measure my breathing.

    I have an allergy to seafood, chicken, eggs, hazelnut, walnut, all lentils, bananas, watermelon, and avocados. Recently I’ve started having random reactions even though I haven’t ingested a known allergen. I’ve had 15 in the past 3 months. It’s not practical for me to stab myself with an Epi and go to the ER once or twice a week.

    How strange to have a stupid body that randomly tries to kill itself. No one in my life understands how scary this is. One minute your fine, the next you’re staring into the void, wondering if it will suck you in.

  4. brian says:

    Yes god cares only for you. Everyone else who has died from anaphylaxis just wasn’t important enough for him to remember. I sure hope I’m as special as you.

  5. Cheryl Neely says:

    This lady educated a lot of people. Thank you

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