My Life As an Acceptable Casualty
Yesterday I wrote up a note and folded it into my wallet. I expect to carry it for the next several months, possibly longer. It’s a set of instructions to healthcare workers in case I become hospitalized and the place is closed to visitors. Until now my safety plan involved visits from friends and family. I can’t count on that anymore. In a better world I’d wear a medical alert bracelet, but no protocol has ever been written to accommodate my diagnosis and the existing guidance is dangerous and misleading because that’s written with milder cases in mind. Thousands of other people with similar diagnoses face a similar dilemma and the nonprofits that claim to advocate for us have failed. So as a grassroots effort I’ve written this up to share with others.
I have life threatening allergies to unregulated allergens.
I don’t smoke. I don’t have diabetes. I don’t have high blood pressure. Unlike many people with food allergies I’m lucky enough not to have asthma.
Catching COVID-19 isn’t my greatest worry. Yes it’s a dangerous illness, but if I develop a severe case of that I expect to be on an IV drip and be OK in terms of allergies. The greater risk is routine hospitalization. Suppose there’s a traffic accident and I arrive as a trauma patient?
My worst allergens are on the standard recovery menu after surgery. No hospital has ever accommodated that adequately. Physicians have written up appropriate orders which the kitchen staff and the nursing staff ignored because existing guidance led them to believe that Oral Allergy Syndrome doesn’t cause anaphylactic reactions. Healthcare workers who did know that much have had to be reminded that anaphylactic fruit allergies are prone to factory cross-contamination, to kitchen cross-contamination, and that no laboratory has ever tested how much cooking is needed to denature an OAS allergen completely. To be blunt, there’s a nontrivial chance I could survive surgery and then suffer cardiac arrest or choke on my own vomit in the recovery room. My anaphylaxis symptom pattern involves a sudden drop in blood pressure and my post-surgical diastolic BP hovers in the mid-forties without anaphylaxis. This is a completely foreseeable danger. It shouldn’t be on patients’ shoulders to anticipate this — yet it is.
I’ve had these conversations while lying on a gurney getting prepped for emergency surgery. I’ve caught hospitals’ errors and rejected food despite being cognitively impaired from both anesthesia and morphine. Let me tell you, neither of those challenges have been easy. Imagine yourself needing to do that.
The post-surgical meal appropriate to my care is quite simple: nothing but broth. That three word medical order has been written up by each physician — yet has never been carried out by the staff it was directed to.
Thousands of people have life threatening food allergies to items on standard post-anesthesia menus. It’s well documented in the medical literature that anaphylactic OAS and that heat stable fruit allergies exist. Heat stable corn allergens persist in corn syrup, which is a widely used sweetener often present in post-anesthesia meals. The broth served in post-anesthesia meals can be dangerous to people who have alpha-gal red meat allergy. Yet no one has ever written a white paper on the topic of allergies to post-anesthesia meals.
I’m looking at you, Food Allergy Research & Education. Guidance for hospital settings ought to be top priority. Instead you turn the Empire State Building teal. You exclude ten percent of people with life threatening food allergies even in contexts where inclusion is needed most. It took four years of grassroots advocacy before you updated your website to acknowledge that anaphylactic OAS exists. Please, reorient and fill this information gap for inpatient healthcare environments. It isn’t difficult to foresee what will happen if patients have to continue doing piecemeal self-advocacy during a pandemic. Within the grassroots community all we can do is try to mitigate that damage. You have the resources we lack.
In the meantime people with unregulated food allergies are on our own. My note asks hospital workers to put me on an IV drip if an injury trauma or some other cause prevents me from speaking for myself. It’s the simplest workaround.
Fellow people with unregulated life threatening food allergies, yes this is a stressful year and it’s difficult to consider these topics. Ignorance is bliss until it isn’t. If your hospital safety plan has involved assistance from friends and family, now is a good time to brainstorm alternatives in case hospitals close their doors to visitors. You might find it useful to carry a note like I have.
No one is looking out for us. We are acceptable casualties. We have to look out for ourselves.
