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Home » Anaphylaxis » Don’t wait till it’s too late: Anaphylaxis doesn’t discriminate

Don’t wait till it’s too late: Anaphylaxis doesn’t discriminate

I’m thankful and grateful for life. And for being ok. And for my MedicAlert bracelet.

Last week, on Sunday while I was at church, something went wrong. It all started as a normal Sunday. My ankle was hurting like it had been for several days and so when we got to church I took the elevator up to the main floor instead of the stairs like I usually do. It did take forever before the elevator came though, and in the meantime I stood there waiting in the hallway.

This was the very same section of hallway I had bolted through to run outside a few nights before because the youth group had had popcorn around there. I didn’t notice the smell of popcorn on Sunday morning, but I was also not paying attention. I was just hoping I’d get on the elevator soon so I could get a seat in the sanctuary by the Deaf section.

A bit later I noticed something just seemed odd. My tongue was a bit itchy and then my throat started feeling weird. The swollen kind of weird. There was a lump in my throat that I couldn’t get out. The pastor had just started on his sermon and I was coughing, trying to clear my throat. Uh oh. I took some Benadryl and hoped all would be fine. But it didn’t work that way. By the end of the sermon I knew something was wrong but I really, really didn’t want to epi. But I knew I needed to.

After the service let out, I tapped the Deaf ministry leader on the shoulder and signed to her that something felt weird. I didn’t end up standing up. I tried to catch the attention of someone else I knew a bit farther away, but they never saw me.

“Oh great. What do I do now? I really hate Epi. And where is Mom and my sister anyway? Usually they’re here by now. I probably need to Epi, but who do I tell that 911 needs to be called? How do I muster the courage to jab myself with a needle in the middle of the sanctuary at church?”

All this was running through my head. I have no idea how much time passed before the senior pastor came walking by and he greeted the Deaf there like he does every week. Except I just coughed trying to clear my throat.

“Are you ok?” he asked, and when I didn’t reply he asked me again.
I have no recollection of what I replied besides I was still coughing.
“Hey,” he said to someone near him, “I think we need some medical help here”

Someone radioed for medical help and a member of the church who happens to be a doctor responded and came over within seconds. She asked what was going on and I managed to briefly explain to her. I don’t even remember what I said besides that I ended with something like “I think I need to use my epipen, but I hate it. I don’t want to.”
“I know. But I think you need it, so can you please use it?”
I opened the flip-top lid, slid the epipen out, pulled the blue safety cap off, held it, and then whacked myself in the thigh with it and began a silent count to 10 in my head before letting go and rubbing my leg.
“Oww!!” I moaned. “I know it hurts.” She said as she offered me an ice pack.
I have no idea who did what around me, but someone ran off and called 911, likely even before I epied. The kids pastor was there. Some other people were there. And it was not long before the fire and rescue crews got there. The church staff all tried to figure out where the rest of my family was. They tried calling, but there was no reception. They sent people to look around the building. No luck. Oh well. Someone would find them and tell them where I am and what’s happened I figured, and they said they’d do that.

They got me in the ambulance and the EMT in the back with me started getting my name and all the info and medical history. We hadn’t even left for the ER yet when I stopped him and said, “Uh, my throat’s starting to swell again.” He got up, and opened the back and said to the driver (who was talking with my mom telling her which ER we were headed to), “hey, we need to go now, she’s getting worse.” And off we went. I managed to answer a few more questions of my medical history before it was just getting too hard to swallow and breathe and that took all my effort. Within 30 seconds of turning out of the church lot, he hopped up, and said to the driver, “hey, I think we need to go lights.” And they flipped the lights and sirens on and sped to the ER. He then got oxygen on me in a flash, but it didn’t do much good. I started to zone out and close my eyes as it was just too exhausting to breathe and stay alert. I remember hearing one of the 2 in the back with me say something about getting a non-rebreather mask and I found myself with a mask that reminded me of a neb mask.

“You’re doing good” one told me. “try to keep the mask on your face” said the other as I didn’t care. I was just trying to breathe, but it felt like I was going to choke instead. At first it was just hard to get air in. As the minutes ticked on I was having trouble getting the air both in and out. It got to the point that every other breathe I tried to take was just like trying to suck air in… but I got no air. “Your oxygen is at 100%” said the one, but a few minutes later as my breathing got worse and worse and I started to feel like every few breaths I tried to get in I got absolutely no air in. I heard him call the ER and ask for a consult because my oxygen level was starting to go down. But before he could get permission from an ER doc to epi me in-route, we pulled in and he told them it was more of a warning that we were there and I was in serious trouble rather than asking if he could Epi me.

“We’re there.” I recall hearing as they pulled the stretcher out and wheeled me in. I ended up in a room and I remember thinking to myself, “how am I supposed to move over to the ER cot? I’m just trying to breathe!” But I didn’t have to think about it. I felt several people pick up the sheet I was on and slide me over to the ER bed.

“Call respiratory, now.” I heard the ER doc said as the EMTs briefed her on what was going on. The EMTs said something about how when we left the church I was fully alert and talking with them and now I was pretty clamped up and not very alert at all.

Someone took an arm and started an IV and someone ran to get epinephrine. “Look at me” the ER doc said to me and I managed to turn my head and open my eyes and look toward her, though I wasn’t really focusing on anything. She stuck an ENT scope in my mouth and looked at my throat. “Say ‘ahh’” she told me, and I just stuck my tongue out and tried to say something but almost no sound came out. I was trying! I just couldn’t get any sound to come out! She said something about how I was really swollen in there and that she could hardly even see my vocal cords I was so swollen. I don’t remember it all, but my memory says that she said something to someone about how I may need to be intubated.

Some nurse or tech on one side of me asked my mom about allergies to medication. I heard my mom struggling to answer and say something about the fact I have a bracelet with the info on it and was just coherent enough to reach the arm with the MedicAlert bracelet across to her and she flipped it over and read it, “asthma. Allergic to ibuprofen, dairy, gluten. Carries EpiPen.”

I’ve had this bracelet for just over a year and I actually need to update it with the more important info on it. But it just dawned on me as I’m writing this that this bracelet did speak for me when I couldn’t. I don’t remember saying much if anything at all from the last half of the ambulance ride till after the epinephrine kicked in. I was just trying to breathe and it was hard enough. I was at the point where it felt more like:

Try to get air in, but get next to nothing. Try to breathe out, get next to nothing out. Repeat. Oh yeah, and add to that the wondering if I was going to make it and if I’d totally clamp up and turn blue as I tried to get the air in and out failing ½ the time.

The ER doctor said something about how I should stick my neck forward and it would make breathing easier. Someone propped my neck forward with a pillow but it did absolutely nothing. Didn’t help one bit. I was starting to wonder how much longer I’d last.

Someone stuck a needle in my shoulder and within 30 seconds my breathing started to quiet down and I didn’t feel like I was about to choke anymore. I’m not kidding. If they hadn’t gotten the Epi to me when they did, I probably would have ended up having my airway swell completely shut within another minute or two at the very most. I finally was able to relax and didn’t have to work to get air in and out.

I took a deep breath freely, opened my eyes, and looked to my right at the person standing there, the ER doc, and gave her a weak smile. “Can you tell me what you name is?” she asked. I replied with my name and we all heaved a sigh of relief that I was ok and coherent and still alive.

She took another look down my throat and commented that she had never seen such a good response to epinephrine! The swelling was just about completely gone. IV meds were given and then I was sent off to xray not to long after.

Once they had stabilized me mom pulled some note out of my bag and handed it to the doctor explaining that my allergist wanted to have 2 blood tests done the next time I had a reaction. The ER doc looked at them and instantly said something about how she knew exactly what the allergist was thinking about and that it was some complement disorder thing where you don’t have enough of something and so your body attacks itself. The cure? FFP. (Fresh Frozen Plasma) The best way to diagnose it? Give FFP and if you never have another reaction, then you’ve got the diagnosis and you only need like a shot of something once or twice in the future. That sounded wonderful! We decided to give it a go to see if it would help, though it took them forever to get around to giving me the FFP.

“Uh, my throat is starting to feel funny again” I told the xray tech ½ way through the xrays. She looked at me concerned and hurried up. By the time she had gotten all the views she needed there was no doubt that it was swelling again. We got back to the room and she went straight to tell one of my nurses and doctor it was coming back. It didn’t come on slow. By the time the doctor came (only a few minutes) and saw what was going on I was getting close to gasping for air and nearly choking again. The nurse got the epi ready and I remember hearing my mom arguing with the doctor about something regarding checking for vocal cord dysfunction while I was having a reaction to see if that was the cause. The ER doc said something about how vocal cord dysfunction doesn’t respond to epinephrine, and that my throat was really swollen, and the first time when she looked I was so swollen she could hardly SEE the vocal cords because of the swelling and that after epi it had all gone down.

The nurse was getting the epinephrine into the syringe when she listened to something and looked at me and asked if I had music. Uh, nope. That was me wheezing in my throat she was hearing. She got back to getting the needle ready and then I realized the nurse was hesitating giving me Epi because my mom kept trying to insist that the doctor needed to scope me again or something. I really don’t remember. I just remember turning to the nurse and managing to croak a whisper saying “hurry up!” That’s all it took. And again, the Epi worked wonders and within a minute I was starting to breathe normally again, and we were all relieved again.

Sometime later, the ER doc came back and said to me that she was NOT liking how close I kept coming with each reaction and how I was coming extremely close to the point where Epi wouldn’t work and they’d have to intubate me or cut my throat to put in a trach to keep me alive. I didn’t like how close the reactions had been either. “I’ve looked in your throat when you say you’re swollen and you really ARE! And I’ve looked in it when you say you’re feeling better and you really ARE. There’s no doubting you. I know you’re telling the truth.” And then she said that because of how close the reactions had come, she was going to need to admit me to the ICU in case it came back.

I totally was NOT expecting her to say that. I’ve been kept once overnight for simply observation, but never been to the ICU. Never. I’ve always been discharged from the ER and sent home within 3 to 4 ½ hours.

But before they admitted me to the ICU they gave me the unit of FFP. And ¾ through it, I started having another reaction. Rats! It took another dose of epi to reverse the reaction again (this was the 4th dose), but after that I was doing better. Something a friend wondered is if I might have an IgA deficiency and that could be the reason that I had a reaction at the tail end of the FFP. But we don’t know yet. But it was pretty clear that I didn’t have the compliment disorder.

Got admitted to the ICU and all was going fine. I felt something just seemed off, so I told the nurse. She said it was probably just my throat being dry so got me some water and tea. When they switched shifts and I got a new nurse I also got evening meds. Not only had I already gotten 125 mg of steroids in the IV hardly 6 hours earlier but they were giving me another 40mg! And then the nurse told me that my potassium was low. “Oh, so that would explain why my legs and arms have been crampy lately!” I said. Yup. It was. It took a bit to explain to the nurse that I couldn’t have the tablet (I actually just guessed it contained lactose and when she called the pharmacy they confirmed my suspicion) and got me a safe version. All was fine after that. I settled down to try to get some sleep, but before that happened I found my throat starting to feel weird. Again.

It was around 10:30pm I started having another reaction yet again. But I didn’t tell my nurse right off the bat because I wasn’t sure if it was just that my throat was dry or if it really was the reaction rebounding yet again. By the time I hit the call button for the nurse it was clear that it was a reaction. They came in and looked at me and tried to decide what to do. “Ok, we’re getting Epi” they told me several times and it seemed like they were a bit freaked. One ran and grapped epi and gave me another dose… not knowing that a normal dose is 0.3mg and they gave me 1 whole mg. It certainly did shoot my heart rate way through the roof for a few minutes! But they were all relieved that I could breathe and wasn’t about to choke and I wasn’t making funny sounds in my throat as I tried to get air in and out. I remember opening my eyes after the epi kicked in and looking over to seeing 3 ICU nurses all looking anxiously at me and at the monitor watching my vitals, especially my heart rate and the rate of breathing of my chest. One ran over to the phone and called the doctor on call saying “Hey Dr, we have an emergency” as he started to explain what had happened. Then he looked over at me and said, “oh, I think we’re ok now. She’s smiling. I think we’ll be ok.”

“Why did you wait so long?” my nurse asked, “You’re lucky the other nurse was walking by! Next time call me faster!!” She told me. “She did call.” The other nurse told her. I didn’t say it but the thought did go through my mind that I hate hitting the red call button. This hospital stay was certainly teaching me how to use it and not be scared of using it! The following day my nurse told me repeatedly “if you need anything just buzz me.” I heard that or a similar phrase really often over the 48+ hours. And I learned to not be scared to use the red button.

2 more reactions that night, but both times I told the nurse fast enough that she got me Benadryl pretty quick and we managed to do with just the Benadryl in the IV. I’ll say one thing: I didn’t get much sleep! I kept waking up every hour, right after the blood pressure cuff inflated around my arm! But I did sleep, probably thanks to the IV Benadryl.

A bit before rounds while my nurse was giving me my morning meds someone walked into the room and said, “hello!” I looked up at her and instantly recognized her. “Mrs.A!!” I exclaimed! “I thought I recognized your name!” She told me, then explained to my nurse that I used to be one of her students in highschool when I took her Nutrition and Food Science & Technology classes. Boy was it nice to have a familiar face who I hadn’t seen in a while, who also happened to be one of my awesome teachers years ago! (It was actually back in the first year she taught her nutrition class that I found out I’m allergic to dairy… but boy was it a much more mild allergy at the time!)

Rounds came and one of the doctors said, “we’re not coming in here, we don’t know what we might have on us!” I was a bit puzzled at first then realized she was concerned that some food residue on her clothing might trigger yet another rebound reaction. But, they all ended up coming in and my main doctor told me that they were going to keep me for at least another 24 hours, but they’d move me down to a step-down room.

That didn’t exactly happen. I hesitantly ordered lunch. An apple. Some canned pears and canned peaches. I asked the person on the other end of the phone what was in them and she said there was nothing. I was a bit surprised, but whatever. I didn’t have to eat it when it got there if I didn’t want to. I told the lady to be sure to be very careful with my food prep as I have a ton of food allergies and she replied, “I know that.” But it came across as a tone of voice that said she was aware but didn’t really care or know what precautions needed to be taken to keep things safe. They brought the tray of food and I told my mom I was hesitant to eat it. “I can wash your silverware for you if you want.” She said. “And if you do react to the food then at least you’re already here!” “True.” So I went ahead and ate. It was good. But I was still puzzled about how there supposedly was no syrup with the fruit as canned fruit usually has some sort of syrup with it to help preserve it.

Shortly after eating the pears and peach, my throat started swelling yet again. Whether it was cross-contamination in the fruit or if it was still a rebound from the reaction the afternoon before, I have no clue. It only took a few minutes for me to realize it was coming back. Sometimes a reaction comes on slowly, but none of them in the whole time I was in the ER came on slowly. Benadryl in the IV again (Ugh! Please! Nurses, if the IV is in my left arm, then don’t push Benadryl too quickly! Otherwise I’ll nearly throw up!) while they hunted for epi. “Your oxygen is 100%” they told me. “Yeah, I know.” I replied between breaths, “I’m still,” (breath) “having trouble,” (breath) “getting air,” (breath) “in and out.” (breath) I told them as I tried to push the air in and out. Air was coming in and out, but it was way harder than it ever should be, thanks to my throat being constricted and swelling more as the minutes ticked by.

I was surprised when my nurse came back in with a 2 pack box of EpiPens. He opened the box and pulled out the trainer and looked at it confused. I managed to croak a whisper that that was the trainer pen and he needed to pull out one of the others. He did, and I ended up saying something about how I could show him how to use it because it was becoming clear to me he had never used one before. He was used to using a needle with a vial, not an auto-injector!

So he handed me the EpiPen and I fumbled to open the cap and dump the injector out, pull out the blue safety cap, jab it into my leg as I winced in pain, and held it there. We waited. And then once again, it did its job and reversed the swelling and I could breathe normally again. Wait a second here… I just taught my ICU nurse how to use an EpiPen by jabbing it in my own leg with the real one??! I thought it was supposed to be the other way around! He then looked at the EpiPen, a bit surprised at how the orange thing extended after use. He took another look at the trainer and read the directions before putting it back away.

The exhaustion from this last rebound and the sleepiness from the Benadryl kicked in within minutes. I dozed in and out. Technically they were supposed to kick my mom out of my ICU room for 2 hours because it was “rest period”, but they never did. As I dozed in and out mom told me that my nurse kept walking by and peeking in my room to check in on me and make sure I was ok. She figured they let her stay because she was letting me rest as she read a book. I was too zonked to care much either way.

But after that things went smoother. Except the prednisone that I was getting in the IV 2x/day was starting to hit my mood. I was so, so, so sick of being in the hospital! I just wanted OUT! I was crying and was just beyond frustrated. I was really glad my nurse had told me that I could use my phone! Texting one of my friends kept me a bit saner than I would have been otherwise. And she’d been in the ER many a time for anaphylaxis so she knew what it was like to be on prednisone and worn out from a reaction and Epi. In the middle of the night though, the new nurse woke me up once I had fallen asleep (don’t you just love when they do that?), but it was for a good reason: they were moving me down the hall to a step-down room. Once things were settled down, the new tech told me, “the nurse will be in at 4am to check your vitals.” “Whaaaa??” I asked. And then I slept, and was extremely grateful for the sleep despite it being interrupted at 4am for vitals. But I never bothered to open my eyes then, I just stuck out my arm for the BP cuff, opened my mouth for the thermometer and my finger for the pulse-oximeter. Then I fell right back asleep.

Then the next morning I was feeling wonderful. Oh please! Discharge me!! I’m soooo tired of being here! But I was thankful that now I at least had a window I could look out of even if outside was grey and wet and most of my view was of the building. And then they started serving breakfast. As the trays of food came to other patients in the hall the smell started drifting into my room. Uncomfortable with this fact I called my nurse who gladly shut the door, especially as they agreed that the smell anyway didn’t smell good. The nurse then came back to check on me every 5 minutes. 10 minutes later: “Uh, I think I could use some Benadryl.” She went and got some and it helped, but I wished it would help more. The doctor decided that pending a scope done by the ENT would determine if they discharged me or not. If he saw my airway was swollen, then I’d stay longer. If not, then I’d get to go home. The bad news? He couldn’t make it till 4 or 5. That meant like 5-6 hours of waiting!

Mom went to get my homework from the car that she had brought and as she walked in, she found the ENT having just finished the scope! He managed to fit me in, and the results? Everything was wide open! WOOHOO! Why my throat felt off, we’re not sure except that it was probably something with swallowing that wasn’t quite normal. The good news is by this time I was starting to feel better. So off I went. Ok, not so easily as there was all the discharge stuff to do first, but I was finally leaving!

I can say that I have never been so thankful to be home. And alive! Oh yeah, and showered too. ☺ I came extremely close to getting intubated. That ambulance ride? It took about 10 minutes. So from the beginning when my throat started swelling again to when my throat was almost entirely swollen shut by the time we got there, happened in barely 10 minutes. It’s never been that fast before… nor as bad. And to need a total of 6 epipens? Yeah. That’s never happened before. 2 doses? Often. 3 doses? Once. 6 doses? Never.

I’m thankful for life. And for medicine that can save a life from anaphylaxis and all the doctors and nurses that helped to keep me alive. What triggered such a severe reaction? The suspect right now is airborne dairy. There are too many possibilities right now that it’s impossible to pinpoint 1 and say it was definitely the cause. I’ve discovered there are multiple kitchens that are used frequently and then there are 4 microwaves around the 3 stories of the building that are frequently used to heat stuff up… including microwave popcorn. While I’m not allergic to the popcorn itself, if there’s any dairy on it while it’s being popped or shortly after it’s popped, it will trigger a severe reaction for me.

Another thing that puzzled me was that with every rebound it seemed that the doctors and nurses were listening to my lungs and commenting on how I was breathing fine, as in I wasn’t wheezing. Uh, yeah, of course! My lungs are fine! It’s my throat! ½ the time they did stick the stethoscope on my neck and listen to the stridor in there as I tried to breathe.

Lessons learned? Don’t take a moment for granted. With the severity of my dairy allergy on top of several other anaphylactic allergies, I really don’t know how long I might have left. It could be days. It could be years. And that thought is scary. But I’m going to make the most of the time I have here. Also, always carry your auto-injectors with you no matter what!! I’m glad I always do. You can never know how mild or severe a reaction will be. So don’t risk it! We’re talking about lives on the line! I’ve also wondered if I had Epied faster in church if I could have avoided having the reaction be as severe and rebound 5 times. It’s possible. But I will never know. I’ll just always have that thought in the back of my head and hopefully it will help me to remember to not be as scared of the giant painful needle in the auto-injector (it really does hurt!) and having to take a trip to the ER.

I’m still recovering. Whether you call it, “almost died”, “almost was intubated,” “almost required a trach,” “nearly didn’t make it,” or something else, the meaning is pretty much the same. And it’s hard to explain what it’s like to be in that position. Also, physically, my body is still exhausted. 6 doses of epinephrine is a LOT to need! And the amount of prednisone I had in IV for the first 48 hours… a lot. I’ve finished the taper though, but still, it’s going to take my body a while to fully recover.

A note on the picture:
The blue ribbon in the picture from the FAAN walk for food allergy. Blue is if you have food allergies, green is for if you support someone with food allergies.

The bracelet is my old one (I just got my new one today). If you have food allergies then I REALLY encourage you go have some sort of medical ID. You never know how severe the next reaction might be and if you’ll even be able to talk even if you’re somewhat conscious. I really is worth it. I will say though that one nurse a few weeks ago made it clear that I needed to wear my bracelet on an arm where it’s the only thing I have on it and it needed to be a brighter color than the purple one… so when I updated mine, I got green. 🙂 (Ribbit!)

Remember: Don’t wait till it’s too late: Anaphylaxis doesn’t discriminate.

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3 Comments

  1. Ana Phylaxis says:

    Hi! I’m really sorry you went through this … I just used an epi-pen for the first time on Monday – and on myself. At work. Talk about scary. Reading your blog helps me feel as though I’m not alone in this. Thanks for sharing! Be well

  2. Celiac and Allergy Adventures says:

    Ugh, it’s really awful that you had to go through this. Thanks for the reminder to wear a Medic Alert bracelet! It’s funny (in a not-so-funny way), but I just wrote about Medic Alert bracelets on my blog and then last night found your blog 🙂 I lost my medic alert bracelet a couple years ago, and for some stupid reason continue to put off getting a new one. I also have an allergy to the preservative in Solumedrol and solucortef (IV prednisone), so I really need to get one again. As I’m sure you know, that’s one of the first drugs they give, especially with asthma/difficulty breathing. I’m glad you did not have to be intubated – I have had that experience and it was very, very scary waking up with a tube down your throat. Not to minimize the scariness or trauma of your experience, though because this is awful. I can definitely empathize with your experiences.

  3. […] Don't wait till it's too late – Gluten Free Froggie in the Kitchen I'm thankful and grateful for life. And for being ok. And for my MedicAlert bracelet. Last week, on Sunday while I was at church, something went wrong. It all started as a normal Sunday. My ankle was hurting like it had been for . […]

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