Photo by Rebecca Gould Photography

Sunday, April 19, 2015

Susan: Self-Administering Epinephrine

I suspect (strongly) that there aren't many twelve-year-olds out there who have to stop to think how many times they have self-injected their epinephrine.

For better or for worse, Susan has become one of those kids.

We attended -- as a family -- the screening of Jack Yonover's incredibly powerful documentary about life with food allergies -- That Bites! -- earlier this week.  After the screening, Susan had a pressing list of questions for Jack.  Since she had FOUR questions she wanted to ask him, I suggested she wait to talk with him until after the general question-and-answer session was over.

She did...and tracked him down while I was talking to several mothers of children with severe food allergies.  I didn't get to hear their conversation, but I know that one of the things she wanted to ask him was whether or not he had ever needed epinephrine...and if he had...if he had ever self-administered it.  (I wasn't at all surprised that she wanted to ask about that -- terrible as it is to have an anaphylactic reaction, I do think there is a part of Susan that is just a tiny bit proud of the fact that she has self-administered epinephrine numerous times.)

In the car on the way home, we talked.
She told me she and Jack and his mother talked about how many times Susan had self-administered her epinephrine.  Having addressed this same question earlier in the week, I was curious to see if Susan and I arrived at the same number.  We did.

Susan has self-administered epinephrine four times since starting the clinical trial.
Or maybe we should say five times.

There is the small matter of the fact that the first time Susan tried to self-administer, it took two Epi-Pens (we don't count the first EpiPen when we are talking about how many times Susan has needed epinephrine during the clinical trial -- but when it comes to talking about how many times she has self-administered her epinephrine, I think it should count...after all, Susan found the courage, swung hard and stuck that needle in her thigh.)
We'll call that one...and two.

A friend opined that the first time Susan self-injected (and pulled the EpiPen out too quickly) doesn't "count" because she pulled it out before it could work.  I disagreed...and I still do.  If anything, that one counts something like double.  For after she pulled it out, she had blood running down her leg...yet still found the fortitude to self-administer a second EpiPen slightly above where she had administered and then immediately pulled out the first...

The third time Susan self-administered her EpiPen was in the Clinical Research Unit at Ann & Robert H. Lurie Children's Hospital during her failed 4000 mg (17 peanuts) challenge in January of this year.

The fourth time Susan self-administered her EpiPen was with a friend of mine, in a local restaurant, the day she reacted to her half of a Snickers Bar -- in February of this year.  

The fifth time Susan self-administered her EpiPen was...just last week, when she reacted to her 8 1/2 Peanut M & M's at home.  That reaction came as a shock -- as I typed that, I realize that anaphylactic reactions pretty much always come as a shock...for no one expects to have an anaphylactic reaction (not even during a food challenge, really...)

And then there is the time when the doctor overseeing Susan's (failed) rapid desensitization to peanut became alarmed by Susan's hesitation and took over, placing her hand over Susan's to inject the EpiPen.  (That came earlier, in May of 2014, and it stands apart in my mind because the doctor helped...)

The total number of EpiPens used since Susan was enrolled in the clinical trial is six.
That's a LOT.
Reallyreallyreally alot.

Apparently Susan and Jack, and Jack's mom talked a bit about EpiPens -- and Jack's mom made the observation that while they buy the EpiPens (which are expensive! -- that's next on Susan's list, by the way) and never use them, Susan is distinctly in the habit of using them. 
I hadn't thought about it like that.
  (While we once had an incredible stock-pile of expired EpiPens that we practiced with about once a year -- usually on Mother's Day -- injecting a single poor orange with more epinephrine than any orange needs...we now...don't.  Quite simply, we use Susan's EpiPens before they expire.  Regularly.  And that's a strange feeling.)

I must say, I've been in Jill Yonover's shoes, and honestly -- I much prefer those, but, for now, I walk the path Susan has chosen. 
And while we haven't had to worry about expired EpiPens recently, I hope some day, we'll be back to having a stockpile...

(As an aside, Susan told me that she told Jack and his mother that the clinical trial supplies replacement EpiPens to those who use them.  And she's right -- at least for the first one.  I haven't ever asked for replacement EpiPens -- we have good insurance, and with the $0 co-pay coupon, we find ourselves able to replace the EpiPens without out-of-pocket expense, unlike many others.  Being well aware that there are some who struggle to afford to replace expiring EpiPens, I can live with things the way they are.)

As we were driving home, I took advantage of the quiet darkness -- a great time to talk openly and honestly with my nearly-teen -- and asked her if she had ever thought about sharing what it is like to self-inject with others.  I didn't have to explain my line of thinking, for she immediately realized the tremendous value in her talking about what it is like to self-administer epinephrine.

And so, in Susan's words:

The moment I realize I need my's a bad moment.

I know I can do it.
I know I will do it.
I don't want to do it.

No one wants to do it.
But, I know I will do it.

It is really, really scary to realize I need epinephrine.
I feel like I know the EpiPen will work and I will be fine (...even though I know it doesn't always, at least not for everyone, and the spring mechanism fails sometimes, too -- at least that's what I have heard). this point, I feel like having done it all these times makes me trust it more...
  Since it has never not worked for me, I -- trust it...

Actually, since I know there is a certain number of times -- an average -- number of times the EpiPen doesn't work --
(either because the spring mechanism fails or because the epinephrine isn't enough
I probably shouldn't feel that way.
I'm probably getting close to that number -- whatever it is -- so maybe it would be better for me not to think that way...
(to believe in the EpiPen and epinephrine)

Every time I have needed epinephrine, I have hesitated -- not long...
And I know my hesitation makes my mother nervous, anxious.
  (She thinks maybe my hesitation means I won't actually do it, but, she doesn't need to worry.)
After the last time, I told her I would always do it, even if I hesitate.
It is mentally hard to self-administer my epinephrine.
When I hesitate, I am finding the courage to do it...
It is hard to explain, but, I need a few seconds to get my body really calm and relaxed, which is so super hard because my body is NOT wanting to do that -- when I need epinephrine, my body is feeling alarmed, and not good at all.
The last time I self-administered my EpiPen, I counted to 6.  After, my mother asked me if I knew I was going to count to the number 6.
I counted to calm my body.
I counted so that my body would be ready to receive the epinephrine.

The hardest part of self-administered epinephrine is holding on to the EpiPen so that the push-back doesn't push the needle out.
  (That's what happened the first time I wasn't that I pulled it out too fast as much as it was that the EpiPen kicked back and since I wasn't ready for that,it came out.  That was terrible, because I bled all over, and I don't really like my own blood.)
  OH.  To think that in my mind, ever since that night, it was "simply" that Susan pulled the EpiPen out too quickly.

I think people think it is going to hurt when they self-administer epinephrine.
Or maybe they think that even when someone else is going to do it for them.
Honestly, it only hurts a tiny bit, and then it is over (sometimes it hurts after, but who really cares then?)
And after, I am always so happy that I did it for myself that it doesn't really matter that it hurts.

The hardest part is doing it firmly -- getting ready to hold the EpiPen in even when my body is shaking and on alarm -- that's what's hard. 
I have to say it again -- you have to know that the EpiPen is going to push back...rebound, kick is almost as thought you have to push it back in the slightest tiny bit.  I don't want to leave out a word that might help someone be prepared.
And that's what I am getting my body ready for as I gather myself -- that push back.
I let the EpiPen come out once, but I am not going to do it again.
  (I am that determined.)

Once I have administered my epinephrine, I feel better almost immediately -- within three minutes at the most, maybe faster.  It happens really, really fast -- and I am always just so glad that I did it and then I start to feel better...
  (after is so much better...)

For someone who has never self-administered before, I want to say that it is easier once you have done it once -- don't miss a chance if you have one. 
The first time is the hardest.  
And remember, you have to be prepared to really push against the EpiPen -- it really does want to fling back. 
You have to be really, really ready for it to push back.
But it is totally worth everything, because it works right away.

Now, it helps me to know that I have done it before -- I know I can do it.
I know that I will do it.

It is easier for me to be off alone with my friends because I know I have self-administered before, and I know I can do it again.

1 comment:

  1. Thank you Susan for your bravery and explanation of the "kick back" feeling when administering the EpiPen. I had no idea it did that. We have a 3 1/2 year old PA TNA little girl and thankfully we have never had to use an EpiPen yet. But we have just been lucky so far...We are on a wait list to do Peanut Oral Immunotherapy and I hope we won't need it during that time either! I'm just terrified of having to use it. But seeing that a 12 year old girl can do it to herself makes me, a 34 year old mother, a little braver. Hugs to you and your mom. I hope you don't need to use it again for a long long time.