My Kryptonite
By Susan Tatelli
I couldn’t fly on a plane
I couldn’t go to the movies
I couldn’t eat out
I couldn’t eat birthday cake
I couldn’t go to ice cream shops
I couldn’t sleep over
I couldn’t sit where I wanted at lunch
I couldn’t live a normal life…
because a microscopic amount of peanut once had the power to kill me
That was my life — anything but normal… for years
Until OIT
Oral
Immuno
Therapy
OIT
Eating ever increasing amounts of peanut, my death sentence
I was in a Phase 1 clinical trial called PRROTECT.
They didn’t know much…a Phase 1 clinical trial is one giant experiment…
Some science
Some art
Some guesswork
Nothing… certain
They said the trial would take 9-12 months for most.
For me, 18.
There is no cure.
For some, OIT offers hope, protection, a form of treatment, a normal life
Placebo
The nothing drug
I
was the control
I
got Saline, not Xolair
Three lloonngg ssssllloooowww injections every other week, for months
of nothing
The chances of getting Xolair were high
I was one of the two out of nine who got the placebo
Not getting the Xolair made the trial 1,000 times harder
But someone had to be the control
And I believe it was me for a reason
I had six epinephrine-requiring anaphylactic reactions during those 18 months…
And that’s not even counting the other reactions I had…
The doctors and nurses didn’t believe my reactions could be so delayed…
sometimes up to 24 hours…
But…now they know.
Anaphylaxis:
Hives
Flushing Skin
Feeling Hot,
Swelling of mouth, lips, tongue, throat
Nausea
Vomiting
Wheezing
Coughing
Difficulty breathing
A feeling of doom
Loss of consciousness…
Death
38 people will have had an allergic reaction and 1 will have been
treated in the emergency room by the time I am done reading this
I self-administered my EpiPen five times during the clinical trial
I remember the first time
I was 11
I remember how late it was
I remember the kickback
I remember the unexpected force
I remember knowing the needle had not been in long enough
I remember trying to stick that same EpiPen back in
I remember the blood pouring down my leg — like a river
I remember having to try again
I remember being ready, SO READY the second time
I remember holding the needle in my thigh, even as it tried to push back out
I remember there was no blood when I did it right
When I had my reactions at the beginning of the trial I wasn’t
confident in knowing what to do
I made mistakes, but I have learned
I have perfected my technique
I know the best and least painful way to self inject
(not that it hurts much anyway)
Now, when I have reactions my first thought is “Ohhhh great another reaction”
I eat a peanut dose every morning.
I eat a peanut dose every night.
Sometimes, I have random unexpected reactions.
Anaphylaxis to peanut — my friend, my enemy, my kryptonite
But I’m not scared or worried
I know what to do, and I will do it.
People ask me why I didn’t quit.
People tell me I should have quit.
People ask me why I kept eating something I knew could kill me.
People tell me I should stop eating peanut.
People do not understand what it is like to not be able to live a normal life.
People ask me if I was afraid.
I tell people that I never wanted to quit
I tell people that all I saw was my end goal:
To live a normal life.
To be able to go places,
Fly on a plane, to the movies, to other people’s houses
I tell people that I never wanted to quit
I tell people that all I saw was my end goal:
To live a normal life.
To eat cross-contact things,
Ice cream, M & Ms, donuts, Indian, Greek…everything
(DO YOU KNOW — there is a COOKIE inside every Twix Bar?!)
I tell people that I never wanted to quit
I tell people that all I saw was my end goal:
To live a normal life
I tell them that I wasn’t scared to have another reaction
Because now I know exactly what to do
The goal of the clinical trial was for me to be able to eat 17 peanuts
— at once!
I didn’t reach the goal
Not even halfway
But I didn’t quit
I started seeing a doctor who specializes in OIT
She reduced my dose
She changed my meds
She added vitamins
And applesauce!
(Who knew?)
I was cleared to eat cross-contact foods the day before my birthday
It was the best birthday gift I will ever get
EVER
On February 1st I passed a 24 peanut challenge
(remember when I couldn’t be NEAR peanuts?!?!)
Do you know how much peanut 24 peanuts is?
That’s THREE Reese’s Peanut Butter cups.
The BIG ones.
It took me two years to get there
But I had lots of help from my two new friends:
Peanut
And Epinephrine
Even knowing what I know now, I would still do it again
It was all worth it
Because now I can fly on a plane
I can go to the movies
I can eat out
I can eat birthday cake
I can go to ice cream shops
I can sleepover
I can sit ANYWHERE at lunch
AND I CAN EAT PEANUTS,
My Friend,
My Enemy,
My Kryptonite
