Category Archives: First Aid

My Anaphylactic Allergy – And the 500% Price Hike for an Epi Pen

EpiPen

My allergies started out gradually and crept up on me.

First, there was a metal taste in my mouth like I was chewing aluminum foil whenever I drank red wine, ate a handful of assorted nuts, a few cherries, or a side of mixed vegetables.

Then, in addition to “metal mouth,” it seemed like certain fruits I ingested, like apples, peaches, plums, and even raisins, would tingle my tongue or itch my throat. I had no idea what was going on.

Plus at night, I would writhe around for hours with abdominal pain, severe nausea and such intense stomach palpitations that I thought there was a jackhammer digging a crevice inside of me.

I went through untold numbers of laboratory, radiological, ultrasound, and endoscopic testing.  I suffered through a colonoscopy, a cystoscopy, and a CT scan.

After months of tests, my gastroenterologist sat down with me to tactfully explain my problem: It was psychological. He suggested I try a psychologist.

Really? All those raucous parties in my belly were caused by crazy?

Turns out he was almost deadly wrong.

I eventually discovered the reason for my “problem” the hard way—by snacking on a bunch of raw baby carrots, which caused an allergic reaction that almost killed me.

I had somehow developed a “priority allergy” and was little by little becoming deathly allergic to carrots. I had also developed a severe case of fruit-pollen syndrome.

I was later told by an allergist that in addition to having the fruit-pollen syndrome, my priority allergy to carrots, triggered a systemic reaction in my body that induced a near fatal outcome when my severe tongue swelling frightfully cut off my ability to breathe.

The way it was explained to me, is that my allergy to certain tree, grass, and weed pollens is why even a sliver of a carrot has become my mortal enemy.

The pollen molecules of weeds and certain trees like birch, alder, poplar, are so similar in structure to the proteins in certain raw vegetables and fruits that one of the body’s natural defenses against allergens—an antibody called immunoglobulin E—can’t tell the difference.

So when the antibody binds to a fruit or vegetable protein, anyone allergic to the pollens I described above, may develop an immune response that can cause metal mouth, itching, and tongue tingling.

The reaction can actually bypass the mouth and enter the gastrointestinal tract, causing severe abdominal pain, stomach palpitations, and nausea.

And my gastroenterologist didn’t know this because?

Now that I am allergic to birch pollen, I have also developed an oral allergy to apples, pears, peaches, plums, apricots, cherries, hazelnuts, cashews, almonds, and kiwis. And it seems that every day I discover another annoying food I’m allergic to.

I recently ate a slice of rye bread and spent the next few hours itching and coughing, while clutching my at-the-ready EpiPen.  And then there was the lip swelling and tingling I experienced after drinking a Corona beer. Go figure.

I am also severely allergic to mold, which triggers my asthma, as well as dust mites, and pet dander. All three cause me to cough, wheeze, become dizzy and lightheaded, and run for my Epi.

Wool, many laundry detergents, sunscreens, eye shadow, nail polish, face makeup, mascara, shampoo, conditioners, perfume, and most fabric softeners give me severe hives. But the good news is—they won’t kill me.

But the worst allergy for me is called weed mugwort and has caused mild to near fatal allergic reactions in my system to carrots, bell pepper, caraway (thus the rye bread), coriander, aniseed, fennel, cinnamon, paprika, chamomile, green tea, and cumin.

There are a few foods I can still enjoy without my stomach cramping and my mouth tasting like metal. These foods include broccoli, cauliflower, potatoes, lettuce, cheese, tomatoes, peanuts, green onions, cabbage, watermelon, bananas, melons, citrus, tropical, and berry fruits.

So far, that is.

I have been warned that based on my allergic reactions to so many foods, and my anaphylaxis allergy to carrots, that there is an increased chance of my allergies progressing to a more severe reaction.

The bottom line for me is that I have a 50/50 chance that if I accidentally eat a carrot, I will go into anaphylactic shock and I could die.

So I carry two EpiPens and a bottle of liquid Benadryl with me at all times.

It was strongly suggested to me by my allergist that I purchase several EpiPens for home, in the car, in my purse, and in the office. Because, believe me, I can now attest to the fact that once the tongue starts to swell, your breathing passage gets blocked very quickly.

Most EpiPens come in a set of two. And EpiPens should be replaced every 12-18 months. My expiration date states 18 months, but last time I replaced my Epis at 12 months. Why would anyone take a chance and wait 18 months?

The last thing you want to do is stab yourself in the thigh while your breathing has all but stopped, only to find out that your EpiPen has expired and is too old to work!  That means death folks. I’m not joking.

I can’t even fathom how I would handle having a child with a deathly allergy. It must haunt parents 24/7. The only thing that can save your child from an anaphylactic allergy attack is to stick them in the leg with an EpiPen. But what if you’re not around? What if they’re at camp, in school, at a friend’s house?

As an adult, I can handle the realization and stress that I can die anytime, anywhere, anyplace. But there is no way in hell I could accept that kind of fatal possibility with my child.

I don’t know how a parent lives with the worrying all day every day. I do know they must buy a shit load of EpiPens to ward off any and all possibilities.

If I had a child who had an anaphylactic allergy, I would buy Epi sets for school, all the cars, friend’s and relative’s houses, camp and wherever and everywhere else.  And this is where a psychologist would probably come in handy.

Now comes the ridiculously unfair and outrageous part of the whole situation.

In 2013 I paid $264.50 for a two-pen set. I thought the price was absurdly expensive, particularly since I wanted to purchase at least four sets.

Now? The current price is about $640 a set.

The company Mylan, has a monopoly on the product for at least one year. That is when a generic competitor will hopefully enter the market.

Until then, Mylan is just straight up greedy, and is just another example of what happens when a monopoly situation ends up in a company’s lap.

It’s morally wrong, and shame on Mylan for putting innocent children at risk of death. Not to mention me.

Now, if I want to purchase a set for my car, my husband’s car, my purse, and my office, I need to shell out approximately $2,560. Will I get reimbursed? No, because I have a high deductible health plan.

And how about the families who can’t afford even one set? Or worse, who have no insurance?

If I had a child with anaphylactic allergies, I would buy as many as I needed no matter what the cost. I couldn’t and wouldn’t take any chances whatsoever with the life of my child. Who would?

But for my personal situation?

I carefully safeguard my two measly EpiPens and my bottle of liquid Benadryl, and take them everywhere I go. And I’m already at 16 months with the same pens.  Stupid decision, I admit.

A letter to Congress called “Stop the EpiPen Gouging” asks that there be an investigation and regulation into the 420% increase (adjusted for inflation!) in the price of EpiPens since 2004. And so far, 116,620 letters have gone out. Take that Mylan.

Please click on this link and fill out the form right now?

Your letter might not save all of the people who die from anaphylaxis this year, but it might save the life of one person.

anaphylaxis-symptoms-food-allergy

Eat, Drink & Be Merry—But Chew Well

Heimlich

I recently hosted a dinner party at my house, when all of a sudden my friend Robin clutched at her throat and began to gasp for air.

My husband loudly proclaimed that “Robin’s choking!” Robin’s husband emphatically instructed her to “drink some water!”

My panic-stricken friend with her mouth wide open, goggle-eyed me helplessly. There was zero chance that water was going anywhere down that throat. Robin indubitably required the Heimlich maneuver.

I wasn’t sure how to do it, and I pathetically looked to my husband for guidance. As he jumped up from the table to come over to Robin, I was praying that he knew how to administer the abdominal thrust and could save her—without breaking any ribs.

In the meantime, Robin’s husband frantically asked no one in particular if he should hit her on the back, and I anxiously responded that I didn’t think it was a good idea.

Bottom line was that the three of us were trying to figure out what the hell we were going to do about the situation, while my BFF was choking to death.

Even though I had glanced at the posters in countless restaurants, and seen the Heimlich maneuver dramatized on television, I had absolutely no clue what to do beyond squeezing around the stomach area.

It seemed interminably longer than the few seconds it took for Robin to dislodge the piece of steak from her air passage on her own.

Several minutes after Robin recovered from her terrifying experience, she looked at me teary eyed and said “It didn’t seem like the three of you were going to do anything to help me, so I was just about to throw myself against your kitchen island.”

We had all been total Heimlich failures.

In order to break the tension, I nervously prattled on about the time a few years ago, that I attempted a semi Heimlich maneuver—on myself.

I was at a power lunch in Manhattan with several luminary magazine editors and publishers, when I choked on a rather large piece of radicchio. For those of you who are not familiar with radicchio, it is very crunchy and fairly immovable.

It was eminently clear to me that in order to protect my glam reputation, I was going to have to dislodge the leafy vegetable from my constricted throat on my own. ASAP.

I casually but quickly removed myself from the table and ran past the bar and the bartender. Stupid move. I bolted into the ladies room and locked the door. Another stupid move.

I then proceeded to hurl my body about the room, the wall, the stall door, and anything else I could bounce off of. I finally reached in with my hand and grabbed that sucker, throwing it onto the bathroom floor.

As I slumped against the paper towel dispenser, there was frantic banging on the bathroom door. Apparently the bartender had heard the commotion and was concerned. Duh.

I was able to collect and wipe myself off, and returned to my table of VIP’s like nothing had happened.

By the time I finished telling Robin my Radicchio Story, she was cracking up and almost back to herself. Albeit very shook up.

Of course, after my guests left, I did my usual online research, and it turns out that hitting Robin on the back wasn’t entirely incorrect.

The Red Cross actually recommends a “five-and-five” approach to delivering first aid:

First, deliver five back blows between the person’s shoulder blades with the heel of your hand.

Second, perform five abdominal thrusts (also known as the Heimlich maneuver).

Alternate between 5 blows and 5 thrusts until the blockage is dislodged.

For a complete first aid breakdown, and instructions on how to perform the Heimlich maneuver, go to the Mayo Clinic choking section.