Tuesday, April 28, 2015

Anaphylaxis (Again)

Yesterday (Monday) around 5 am I woke up cause my stomach was really hurting.  I ran to the bathroom cause I felt like I was going to have #3 potty issues (think #2, but worse).  Within 10 minutes I had: swollen eyes, rapid onset asthma attack, hives on my thighs, bright red skin on my torso and face, burning red ears, itchiness mostly on my chest, runny nose, cramps in my lower abdomen, more #3 issues, and sinus congestion.  I knew that I was going into Anaphylaxis.  I quickly took a Benadryl and a Zantac (H1 & H2 histamine blockers).  I grabbed my inhaler and sat back on the potty (yes, TMI, I know).  I could tell that the reaction was getting worse, so I tried waking Jake up by yelling his name.  I realized that it wasn't working, so I started banging on the wall (since it's a new sound I figured it would alert his subconscious to wake up).  It worked!  He came in and gave me more Benadryl.  I told him that if I didn't turn the corner in the next 2 min I would have to do my epi pen (and then go to the ER).  Luckily my first dose of Benadryl started kicking in and my inhaler helped my breathing.  In fact, I didn't even have to do my nebulizer like I was planning on.  And within the next half hour my body calmed down and I was able to sleep (the Benadryl probably helped with that too!)  (This photo was taken after things calmed down, so my eyes weren't really swollen anymore and my skin was starting to turn back normal, but you get the idea...)

Jake used one of his personal days to stay home and take care of me.  He had to take Scarlett to her 4 yr physical and immunizations that morning.  He brought the twirls into our room, turned on a show, and gave them chocolate milks to drink.  I remember they kept putting toys on me and climbing on me.  I finally woke up when they started spraying me with a squirt bottle!  haha!  Stinkers!

Anaphylaxis is a severe allergic reaction of rapid onset affecting many body systems.  The most common areas affected include: skin, respiratory, gastrointestinal, heart and vasculature, and central nervous system - with usually two or more being involved.  Since I have been married I've been in Anaphylaxis 3 times.  The first time was right after Scarlett was born and I woke up in the middle of the night having a reaction.  The second time was two months ago right after eating dinner (I don't think I realized what it was at the time cause it wasn't as severe as the first).  And the third time was yesterday.

I was able to get into my allergist Monday afternoon.  Since Jake was home I was able to go alone.  The allergist told me that I probably should have used my epi pen.  I told him I didn't want to have to wake the kids up to go to the ER.  I know it sounds so silly now, but that's really what I was thinking at the time.  He explained that anaphylaxis can cause drops in blood pressure and other scary things as the reaction progresses.  He advised me to use 4 tsp of liquid/children's benadryl cause it works much faster than the tablets.  He also gave me a prescription for liquid prednisone.  He said that I should take these, but if I feel like it's not helping I need to do my epi pen then call 911.  Don't wait for Jake to load the kids up, just get help.  The sooner you can stop a reaction the less severe it will be and the easier it will be to recover from it.

He told me I should be wearing a medical bracelet all the time that says "Severe Asthma & Anaphylaxis."  I used to have one and I keep meaning to buy a new one, I guess I should get on that.

So... what would cause me to wake up 7 hours after eating and have an anaphylaxis reaction?  Good question.  The first time it happened after Scarlett was born we decided that it was most likely due to NSAIDs, but I haven't taken them since.  So they are not a factor here.  I asked the allergist (hopefully) if I would be able to take them again, since they may not be the original cause like we thought.  He said no.  NSAIDs might not have caused my reaction, but they make anaphylaxis more severe.  That's probably why I looked like that scene from Hitch.  Darn it!

Was it food?  Probably not.  Most food reactions occur with 4 hours of ingestion.  But there is a rare mammalian protein allergy that takes longer to present itself that he wants to test.  It could be an auto-immune disease, mastocytosis, thyroid, temperature, stress, and a bunch of other frightening things... Scarlett thinks I'm "allergic to green grapes for like ten years."  haha!  But in about 32–50% of all anaphylaxis cases the root cause is never found - it's referred to as "idiopathic anaphylaxis."

Idiopathic Anaphylaxis!!!  That's so scary!  I hope that we can find a cause for these reactions!  To begin figuring it out we need to test for everything.  Dr. Song grabbed a lab script and while we were talking he just kept circling different things.  Most of the tests I was able to do right after my appointment.   I have to do some follow up blood work in a month, but only a few of them.  I went down the hall to the blood place.  The phlebotomist took me back to the room and said "ok honey, I'm so sorry, I have to do 13 vials on you today."  She made me drink some orange juice and she used a heat pad to bring the veins up to the surface.  I have tiny veins and she kept going back and forth between my arms trying to find a place to poke me that looked like it could handle all 13 vials without clotting the tiny butterfly needle or collapsing the vein.  I finally told her to just use the vein on the side of my wrist.  I know that it's more painful, but that's often the best place to poke me.  Luckily it lasted all 13 and I didn't have to sacrifice another vein.  I felt fine after (thankfully I've been taking iron the past few months!)

And now we wait.  Some of the tests are quick.  Some are unique and have to be shipped out of state.  It will probably be expensive and inconclusive.  But hopefully in learning what did NOT cause the reaction we can narrow down possible triggers and hopefully avoid future problems.  Statistically though, it will happen again.  And again.  The more anaphylactic reactions you have, the more likely you are to have them again. ;'(

I am so frustrated!!!  I'm very careful.  I am very mindful of the food I eat, the medications I take, the environments I'm in, the way my body is handling life (stress, allergens, etc).  Very. Careful.  I think sometimes I'm being overly cautious.  But this still happened.  And I don't know why.  I'm grateful that I never had a reaction when Jake was in Chicago or while I was on a plane or something like that... but still...  I'm scared of my own body.  When I was looking in the mirror after my reaction was settling down, I felt like I didn't know my own body and I couldn't trust it anymore.  I can't explain the feeling.  I usually feel so aware of my body and so connected with my skin but now it's like I'm a stranger to myself.  

I'll keep being careful while we wait for results.  Mostly though, I'm just going to try and forget about it so I can fall asleep without this looming fear.  If you have a second tonight, please pray that we can find a cause and get me out of this "idopathic" nightmare.

5 comments:

LL said...

Noooo!!! Oh I'm so glad you're ok! I teared up reading this - I wish there was something I could do! I hate the not knowing part, when I know something is wrong but they haven't figured out what it is. You'll be in our prayers. Love you!!!!

Our family said...

Not cool! I'm so sorry you have to deal with this. We'll be praying you find your answer

huntwork said...

I'm so sorry you have this type of trial. I understand allergy problems because a have some too. However, nothing like yours. We'll keep you in our prayers.
Grammy and Grandpa

Glenn and Natalie said...

Yikes Jenny!!! I am so sorry for you. How scary! I hope they can figure out what is going on. :(

I agree with your Dr--don't worry about waking up the kids. A mom that's breathing is kind of important! ;)

Shari said...

I wonder if certain things can make you temporarily more sensitive. For example your. Not allergic to A but if you are around air freshener so then you are allergic to it. I had to get rid of my gas stove because it irritated my lungs. It was subtle so it took a long time to figure it out. I noticed this year that Jacob had problems when I used a scented candle. I know if I eat wheat I have more rashes. When I avoid it my whole body seems to calm down. It's really hard when something comes and goes. Remember when you r having an attack u won't b making good decisions so make all ur plans now.