Friday, January 27, 2012

My Throat is Trying to Kill Me

So, last night at our house I almost died. I feel like I'm exaggerating when I say that, because it seems like a ridiculous thing to be real, but it is. And I still feel like it's an exaggeration because we didn't have to call 911, and no ambulance came, because Jason was able to save me. But - it was real, and we could have had to call, and maybe it's hard for me to comprehend that. I was choking, and Jason had to do the Heimlich on me. No air was coming through until he did the Heimlich.

I am no stranger to choking, but this was the worst choking episode I've ever had. Let me explain. (With random pictures to break up the text.)

I have a rare genetic throat disease. It's called eosinophilic esophagitis. Basically, what it is is that I'm allergic to different foods. My body reacts to them by sending these certain white blood cells - eosinophils - to the tissues lining my esophagus. My esophagus becomes swollen, and the muscles are not able to push food down effectively because the swollen tissues are blocking them.


My problems started my senior year of high school. I kicked them off with a dramatic choking episode, similar to the one last night, except no one actually had to do the Heimlich (although my sister was ready to. She jumped up and got behind me, but then I coughed and was able to clear my airway). Then followed smaller, more numerous instances of food getting stuck in my throat for a couple terrible moments and then going down. I also had lots of chest pain. We went to the doctors, but they didn't seem to believe me that there was really something wrong. They did a barium swallow to see if there were any structural abnormalities in my throat, but there weren't. One said it was just acid reflux, and gave me some sample medicine for that. That helped with the chest pain, but not the choking.

Later that year I graduated from high school and started at BYU. For the first couple months at BYU, I didn't have any problems. Then, one night, when my roommates were all asleep but I was still up reading, I had a choking episode. The food went down after several panicky moments, like it (almost) always does, but it scared me. I woke my roommate up and asked her if she knew how to do the Heimlich. She (very sleepily) said she did. The next day I explained to all my roommates about my throat problems, in case I choked while they were there and I needed their help. I also decided to try again with the doctors, seeing if they could figure out what was wrong.

And lucky for me, the Utah doctors were (way!) different than the California ones! I first saw a doctor at the BYU student health center, and he asked all sorts of questions, a ton of them, until I felt like he really understood my problem. He even asked questions about things that I wouldn't have thought to tell him, but were part of the whole thing (like the chest pain, and how it all got worse if I ate something after I hadn't eaten after a long period of time, and the thickened saliva that comes after a choking episode, etc.). After listening to everything, he recommended me to a specialist, a gastroenterologist. He told them to do an EGD (where they shove a tube down your throat and look at everything) and also a biopsy (where they take some tissues from your throat and test them).


So I called, scheduled the procedure, and then one early (and cold) fall morning not too long later my sister took me to the doctor's office to have it done. The gastroenterologist was really nice, as were the staff, and the procedure went great (I was under anesthesia, so I don't remember the actual thing). A couple days later, they called me. They knew what was wrong. From the pictures of my throat, they suspected eosinophilic esophagitis, and the elevated levels of eosinophils in the biopsy confirmed it. "I have - what? Sorry. Can you say that slow?" They did, and I wrote it down (misspelling it pretty badly) so I could google it.

I had another appointment with the gastroenterologist (who I really like and would recommend to you if you need one in Utah Valley) a couple days later, and we talked about treatment plans. He recommended me to an allergist (because the best thing you can do is avoid what you're allergic to), and he also prescribed a corticosteroid which would help the swelling go down. The medicine (a liquid I took twice a day for a month) helped a lot. It made everything - the choking, the throat pain, the chest pain - go away. It was the best thing ever. The effects lasted only four months, though, when for most people it kept all the symptoms away for six months to a year. The gastroenterologist figured it was because whatever I was allergic to was very pervasive in the foods I ate.


And long story short with the allergist - the first one I saw did something wrong with the test. That's the best I can figure, because they said they didn't find me allergic to anything. And I accepted that, until the beginning of my senior year, when I was having my usual terrible seasonal allergies, and it occured to me - anything? They didn't even find my terrible seasonal allergies? And I know they tested for plants. They must have missed something. So I talked to my doctor at the BYU student health center, and she recommended me to a different allergist (one in Orem. The first one was in Provo). And this time they found out I was allergic to a ton of stuff! I was allergic to fifteen of the seventy foods they tested. And one of them, soy, I had as bad of a reaction to as the positive control. In other words? I am majorly allergic to soy.

They recommended that I cut out all these foods out of my diet, and then slowly introduce them back in to see if I was okay with them. And my body is okay with all of them, except soy. My body hates soy.

Wonderfully, though, if I just avoid soy, I don't have any of the terrible symptoms I used to have. I don't have the awful episodes of throat pain I used to have (which I call "throat attacks"), I don't have the chest pain, and I don't choke (very often). Which is great, because I started having a bad reaction to the corticosteroid right after Jason and I got married. It still made all my throat symptoms go away, but it also gave me moonface. Yes. That's right. That's what they really call it. Moonface. Basically, it made me swell all over. It looked like I gained twenty pounds in my face. Not fun. I hated it, actually. But I don't have to take the medicine any more! Because I know what I'm allergic to, and I can avoid it.

The problem is - have you ever tried to avoid soy? Soy is in everything. Think I'm kidding? Go into your kitchen. Pick out ten random packaged foods - soup, cookies, pancake mix, crackers, condiments, taco seasoning, cereal, granola bars, vegetable oil, ice cream, whatever - and look at the ingredient list. How many of those will have soy? I bet you eight or nine.


I've managed okay, though. We avoid buying a lot of the foods that have soy, and if we can we buy certain brands that don't have it. I still do have it, though, because it really is pretty much impossible to avoid. I just try to eat as little of it as possible.

This week, however, I must have gone over the limit. Three days ago I had a can of chicken noodle soup, and had a pretty bad reaction after. I didn't have any (terrible, terrible) throat pain, like I usually do, but my throat entirely closed off. Like, I could still breath through my nose and somewhat through my throat, but Jason and I were keeping a close eye on the situation in case it got harder for me to breath. Luckily, after some time (I think about an hour), my throat opened back up again.

But when I have episodes like that, my throat is usually touchy for a couple days afterward.  And yesterday, I didn't eat anything all day until dinner (which, back in the day when I had problems all the time, not eating for a long period of time and then having a meal always gave me problems. But since I've been okay for so long, I didn't think about it).

We were eating dinner. Jason had already finished, but I was going a little bit slower because I had Ellie in my lap. We were having fish, and broccoli, and rice. And I put a piece of broccoli in my mouth, chewed, and swallowed, and then it happened. My throat does that horrible thing it does, where the food gets caught in this terrible limbo. My swallowing reflux is trying to push it down, and my gag reflux is trying to shove it up, and it can't go either direction, and I can't make it go either way, and it's like my throat is spasming. And. there. is. no. air.

Usually, after a couple seconds of this, I can push it down, and I'll be okay. But this time, I couldn't. And after those couple seconds had passed, and I realized it wasn't going down, that this time wasn't like all of the other times, I really quickly moved Ellie from my lap to the couch and I jumped up. I did the choking sign by putting my hands to my throat. Jason jumped up, and ran right behind me, and did started doing the Heimlich. After two thrusts, my airway opened up for a second. I stopped him, and tried to breath, but it closed again. So he did it again, once, and a bunch of water came up, out of my throat. The thing, the choking object, was still in there, but air could get past it now. I dropped to my hands and knees, and tried to clear my throat. A lot of broccoli came up, but I could still feel something in there. I waited, trying to see what would happen. Jason was right beside me, ready to do the Heimlich again if he needed to, ready to call 911 if he needed to. After a minute or two of waiting, with the thing not coming up, he asked if I'd like a blessing. I said yes, and he gave me one. In the blessing he said that I'd be able to breath, and that the thing would either come up or go down. About thirty seconds after the blessing, I was able to cough up another piece of broccoli, and I felt my throat relax. I went to the sink, drank a little bit of water, and coughed up some more broccoli and some really thick mucus. And then I was okay. Jason and I were both pretty shaken up, but I wasn't choking anymore.

So that's the whole story. That's what happened last night, and that's why it happened. Whenever something like this happens, it reminds me that I can't let my guard down. I need to eat (even less) soy than I am, and I need to avoid doing the things (like waiting a long time to eat) that caused problems for me in the old days.

So yeah! Know the Heimlich, folks. Especially if I'm coming to visit. ;)

7 comments:

  1. Oh my goodness - Joc! That is so scary, I'm glad you are OK. Brooklyn has done this a couple times too - I wonder if she has the same thing.

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    1. Yeah, you might want to get that checked out. I got it from my Dad (he has it too - he was actually misdiagnosed as having acid reflux until I was diagnosed and he made his doctor test him for it. He had to insist; his doctor didn't want to test him for it because it's "so rare," even though a LOT more people are being diagnosed with it), so it runs in the Smith side of the family.

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  2. Jeez, Loise, Jocelyn! That is so scary! I knew you were allergic to soy but I didn't know you choked like that! I'm sorry that you have had this problem! It's a good thing Jason is such a stud and knows the Heimlich well enough to do it right to save you! Woo hoo! Go Jason! I know how to do it, in theory, but have never done it before. I hope you don't have another choking episode. That has to be such a horrible feeling. My mom said I used to choke on eeeverything as a kid but it was probably because I didn't (and still tend not to) chew my food well enough before swallowing.

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  3. SCARY! I'm glad you are ok! man, that probably has to be the scariest feeling. Good thing Jason was home. Be careful!

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  4. Oh my gosh, Jocelyn! My heart stopped reading that story! How scary! I'm so sorry you guys had to go through that! But I'm so glad you are okay!

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  5. So glad..SO GLAD you are ok! Thank you Jason! =) And I know the heimlich but I pray never have to use it...especially on you darling!

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  6. Poor baby! I hope that never happens again! I'm glad Jason used the Heimlich and the Priesthood. I love you guys!

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