There needs to be a support group for those who have suffered near fatal anaphylaxis and their loved ones…

The following story is a mother’s experience of her child’s anaphylaxis. It’s one of the best descriptions I have ever read of what it’s actually like and also, how poorly it is understood by so many doctors. Like this mother, in the past, I have delayed giving myself an Epi Pen injection because I was told off by a doctor for using it too frequently or without waiting for ‘enough’ symptoms to present.

As an adult survivor of near fatal anaphylaxis I can add that it’s very surreal to be literally dead one moment and then sent home within hours and expected to get on with life and return to work as so nothing happened.

In this case the child really wasn’t aware of much of their experience; as an adult while you don’t necessarily remember the details, or may have been unconscious or literally dead for some of it, you do know the reality of how serious this is.

The fear that this induces in your life is like being constantly stalked. You literally never know when you will be subjected to an exposure. My most severe food allergy is to citrus but I’m also very allergic to latex. My most serious reactions have all taken place in hospitals or doctor’s waiting rooms. To be blunt, I’m pretty sure that if they had happened anywhere else I would not be here today.

I literally take my life in my hands anytime I go outside of my own home. My home is a safety zone. Workmen, and even friends, are not allowed in my home unless they guarantee not to have had citrus in the last 24 hours and to be scent free.

In the past four months I have had two near fatal anaphylaxis reactions. The first resulted in my developing Reactive Airways Dysfunction Syndrome (RADS). RADS looks a lot like asthma and is very poorly understood. In fact, it is exactly what it sounds like. My airways react to pretty much anything seemingly randomly.

Environments in which I used to be safe, such as outdoors, are no longer safe for me. Worse still, sometimes RADS acts like asthma and sometimes it triggers allergic responses; even anaphylaxis.

The only treatment is high dose Vitamin D, rest and avoidance of scents, known allergens and exposure to anything that might have become an issue. With luck and time the hyper sensitivity will reduce and my world will expand beyond the four walls of my home and medical facilities.

In the meantime, I’m left with the question of how do you mourn yourself? I didn’t die, yet life as I knew it did.

While always cautious I will never again feel truly safe anywhere outside of my home. Even now, when I manage to run the occasional errand I have to pick and choose which store to go to. I love M&M Meatshops right now as I can order online, have their staff pack my order up for me and agree a time for pick-up. Then all I have to do is turn up, pay and leave. Additionally, the store nearest to me is in a strip mall so I don’t have to risk exposure to all the other people and scents I’d come across in a mall.

I go across town to the post office that is in a different strip mall because the one closest to me is in Canadian Tire. Far too great a risk for me. All those hand cleaners they use in the car maintenance facility attached to the store are orange based. Deathly to me.

At some point we will get to the bottom of my extreme breathing issues and hopefully get it dealt with. With luck my RADS will be better controlled, if not healed by then too (RADS can last 6-24 months or become permanent), and I’ll return to ‘normal’ life.

What that ‘normal’ looks like though is going to be very different from what it was before this.

As for that Epi pen… The best advice I have been given and has kept me alive now on several occasions: If in doubt Epi!

Don’t wait for the hives and itchiness etc. The scary part though is that the reason I was given that advice is what the doctor explained to me about extreme anaphylaxis.

When it happens fast you may not ever experience the hives, itchiness etc. because your body doesn’t waste time sending warnings to the surface it uses everything it has to protect your brain.

So for those of us with serious, fast anaphylaxis don’t assume that no hives means no problem. It can actually mean that the reaction is far more extreme. So if you even think that you have been exposed to a known allergen Epi! Yes, adrenaline is a potent drug and shouldn’t be used without caution. However, I’d prefer to use it and not have needed it than to be dead because I waited.

My current problem is that with the RADS I don’t know what my allergens are anymore. Last week I ate a meal, that I had prepared at home from products I have bought and prepared the same way hundreds of times before. Yet, I reacted to it. I still don’t know what I reacted to in that meal.

My latex allergy is worsening and, like many latex allergic people, this means that I have issues with adhesives often too. So now we have the  problem that while I can cope with heart monitor patches when I’m non-reactive when I’m in the middle of an allergic reaction I break out in hives to the adhesive used on the monitor patches.

It’s a catch 22. Unlike many anaphylactic patients whose blood pressure and heart rate decreases in anaphylaxis mine increase placing me at very high risk of stroke. So emergency care must monitor my heart. So we have to balance using the patches to monitor my heart while treating the allergic reaction, knowing that we’re actually continuing exposure to an allergen by using those patches. We have yet to find a solution to that problem.

There has been some great success stories in the US with desensitization to food allergies (the top 8) with the use of OIT. OIT doesn’t cure the allergy but does make it safe for the person with the allergy to be exposed to it as long as they maintain the treatment for the rest of their life.

Unfortunately for me, my allergy to citrus is airborne. As yet the only known way of managing airborne allergies is the use of masks.  There is no effective treatment for airborne allergies. However, citrus molecules are so miniscule that even very high quality masks don’t filter them out. I’m not quite ready to live in a bubble so I’ll continue to live as so I’m being stalked all the time.

Like this mother did with her child, I will learn to mourn myself as the person that didn’t die and I will continue to embrace life.

All I ask is that when somebody tells you that they are anaphylactic to something please don’t joke; please take them seriously.

My life literally depends on whether or not you are truthful about having had citrus recently. Or whether you are using latex gloves or not. Think about it. The most likely reason that I had a reaction to that meal that I had had many times before is that at some stage in the preparation before I bought the ingredients, somebody prepared that food using latex gloves or cross contaminated it with citrus by not washing their hands between dealing with different products.

Anaphylaxis is life threatening and those of us that have suffered near fatal incidents need support not jokes. The latest Human Rights Policy update in Ontario actually states that anaphylaxis is now included as a disability that must be accommodated, just like any other disability. Hopefully, that will allow us to insist on more scent free environments in public places making the world a safer place for many.

Mourning a Child That Didn’t Die: Our Anaphylaxis Story

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