Why You Need to Know More Than An ER Doc

This post was inspired by a conversation with some great people who work for an amazing allergy-related social profit organization Canada. At one point, we discussed the misconceptions and misinformation that even some medical professionals have about anaphylaxis. I've certainly been told some odd and incorrect things by people with an M.D. after their names:

1. If you administer your auto-injector, you don't need to go to the ER. FALSE! It's not magic. It just buys you time. Many people need additional medications, including more epinephrine. You are literally risking your life if you don't call an ambulance and head to the hospital.
2. Vomit the food back up and you'll be fine. VERY FALSE! If your throat is closing up, you risk choking or aspirating on your own vomit, making the situation even worse.
3. The third issue was that a paediatric doctor I know didn't know how to use an injector in practice and so injected it and let go immediately. While any amount of epinephrine is better than none, hold down that auto-injector for up to 10 seconds. The pressure also helps prevent silly amounts of bleeding.

So, that discussion led to my quick grievance about the lack of an anaphylaxis protocol in ERs. I have mentioned this before and firmly believe that anyone at risk of anaphylaxis should come up with an ER plan in conjunction with their immunologist or allergist. That plan should be communicated to friends and family in case the person is not able to communicate. Put it on paper and keep it in your allergy kit.

The reason behind this is because ER doctors have done everything from give me salbutomol and nothing else (my asthma does not act up during an anaphylactic attack) to giving me a diphenhydramine drip and then discharging me after two hours even though I was still symptomatic. The recommended minimum is four hours and there was no mention of taking diphenhydramine or watching for secondary reactions for 24-72 hours. One doctor rudely asked me what I wanted him to do while my throat was closing up and no medication had been administered by ER staff. I show no external signs of anaphylaxis; so, this may explain some of the oddities I've experienced, but there's definitely no good excuse.

Despite all of that, I do not blame ER doctors. They're unfathomably busy and have to deal with such a myriad of conditions and patients. Mistakes happen, but not because doctors are reckless or don't care. They happen because they may not have enough specific training (consider the likelihood of knowing every disease and its treatment in the world. Gregory House M.D. is fictionally crazy after all.) or because areas like ERs and ORs involve a lot of people, responsibilities, stress and various, ever-changing situations. If a doctor has a patient crashing in one room, the girl whose face isn't swollen and looks just fine will not seem like a priority, even if she should be triaged as though she is.

Specific steps need to be taken upon admittance and post-care. Doctors also need to realize that anaphylaxis does not look the same in everyone. Even the same patient can react differently at different times. Just as there are now checklists for ORs to ensure that protocols exist and are followed (developed by WHO), I would like to see protocols developed for the ER. This takes a lot of the guesswork away from already busy individuals who should be the poster adults for multi-tasking. Where there is uncertainty, there are errors. Too many people died from asthma attacks in Ontario before proper triage and treatment protocols were developed. So, let's take away the uncertainty.

I will not delve into my opinions of what that protocol should look like, because I am not a medical professional. However, should this post be read by some hospital administrator somewhere, please make a plan. If I know what it should like, your staff can draft it pretty quickly. If you have anaphylaxis or care for someone who has it, make a plan with your immunologist. I'd like to say you can trust an ER doctor with this, but it's just not a certainty.

Allergies, Atopy and Health Care Reform: Why You Should Care

I've written about why public relations matters for atopic and allergic people. This post will deal with why allergic and atopic people need to get involved with government relations, specifically health care policy. While this post is about the future of health care policy in Canada, I think some of the core messages certainly apply elsewhere. That said, Canada clearly has a lot to learn from many other Western nations who handle health care a lot better than we do.

A few weeks ago, I attended a political convention in Toronto. I will "out" myself as a member of the Liberal party at this point. Now that it's out there, you can put whatever spin you wish to on anything I write here, but I am writing this with my unbiased hat on. Liberals have certainly not done anything to advance health care recently and are not in a position to do so at present.

At the Liberal Convention, I had a great opportunity to hear talks by the Honourable Dr. Hedy Fry, M.P. for Vancouver Centre and Liberal Health Critic, and Senator Art Eggleton from Toronto and Deputy Chair of the Committee of Social Affairs, Science and Technology. The latter committee just released an extensive report on the 2004 Health Accord which expires in 2014 - "Time for Transformative Change: A Review of the 2004 Health Accord". If you're not familiar with the jurisdiction involved, very basically health care is administered by provinces, but the money is transferred from the federal government to each province. Some of the exceptions are health care for Inuit, First Nations and Aboriginal peoples as well as veterans and military personnel. Health care for those groups are administered and funded by the federal government.

Recently, I also attended a talk by Globe and Mail columnist and reporter, André Picard entitled "The Path to Health Care Reform: Policy and Politics" organized by the Conference Board of Canada. This was another amazing talk about the future of health care in Canada.

Both Fry and Picard pointed out that the current system of Medicare was created in a different time (the 1950s) and designed to fulfil a much different purpose than it does currently. Medicare was for acute cases and hospitals were for "birth, surgery and death" according to Picard.
  
The medical system is much broader now. There are numerous chronic conditions like asthma, eczema and allergies that require life-long monitoring, treatment and medications. However, the system we currently have was never meant to deal with these kinds of issues. On the most basic level, diagnosis and treatment is still very fragmented. I currently see an immunologist and family doctor. In the past I have seen a dermatologist, pulmonologist and psychiatrist. In the future, chances are good that I will need an ophthalmologist. All of these conditions are related to atopic and allergic conditions, but they're all dealt with in a vacuum. This isn't the same in all countries. In other countries, there are hospital departments which deal with most of these conditions in a much more holistic way, but I have never experienced the same thing in Canada. What makes it even more difficult for people with multiple chronic conditions is the lack of e-records, something discussed by both Fry and Picard. I keep a spreadsheet with the basics of my medical information (treatments, medications, etc.) and print it out when needed, but this needs to be done on a national scale so it can be easily accessed by all relevant doctors and contain thorough data.

What really struck me about Picard's talk is that he addressed the ideological barriers that exist in Canada surrounding Medicare. To critique health care is to risk a politician's career because the concept of universal health care is so entrenched in Canadian pride and identity. We think it distinguishes us, makes us better than everyone else, when really there are a lot of countries who administer universal health care better than we do. Picard called our view of health care "myth"-based, when it should be fact-based. It should be a rational discussion of how to improve a half-century old institution.

I won't go much further into his discussion, because I think it's worth hearing from him. I will include the Globe and Mail article and the video and audio to his actual talk below.

Regarding Dr. Fry's talk, she outlined four areas that need to be addressed:

1. Pharmaceutical strategy

2. Health Human resources

3. E-health

4. Delivery of care

Every point in there is important for those of us with atopic and allergic conditions. The amount of medications I use in a year adds up to a staggering financial amount. I feel I am an otherwise healthy person, but the fact is that I need medications to maintain my health. An important part of Medicare should be financial assistance for medications, yet it's not something we have unless one is hospitalized or meets very narrow criteria.

There is also a shortage of certain specialists and too many dermatologists and family physicians who spend more time selling cosmetic procedures instead of dealing with their medical patients in a timely fashion. Something in there has to change. There should be no reason to wait six to eight months for an appointment. There are immunologists and dermatologists who have figured out the perfect balance and that needs to be looked at.

E-health is a simple concept, but is proving difficult to implement for many reasons, some valid and some not. However, for people who will deal with lifelong conditions, it's necessary. Canada is also the second largest country in the world in terms of land. It is not feasible for every population in Canada to have access to each kind of specialist it needs; however, telehealth (something being done very well by organizations like the Ontario Telemedicine Network) is cost-efficient and practical. Technology and services like this need to be rolled out across the country so that every remote community has access to the best care possible.

Delivery of care deals with multidisciplinary, holistic teams and more of a focus on home care. This is something that is pretty difficult to disagree with. However, it's not happening on the scale it needs to. Considering the fact that seniors form a larger proportion of Canadians than ever before, it's past time to act.

So, what does all of this mean? It means that the health care system we are all proud of needs fundamental restructuring. It means that as people with chronic conditions or as the parents of those with chronic conditions, we need to start pushing our M.P.s and provincial representatives to change now. Health care is something that deserves and requires federal leadership and whatever your political leanings, that's the exact opposite of what the current government wants.

I am always amazed at the amount of backlash when some meaningless person out there makes a disparaging or intolerant remark about kids with peanut allergies. Clearly we have power, but we don't always use it in the most productive way. Regular, motivated parents are responsible for ground-breaking legislation like Sabrina's Law. This is the next step to that kind of legislation. It's about making sure plans are in place to help people with atopic and allergic conditions throughout the rest of their lives.

At some point, your allergic child with asthma or eczema is going to be my age. They're going to be dealing with the health care system all by themselves and wouldn't it be amazing if they didn't have to spend a lot of their income on medications just so they could live a regular life? Wouldn't it be amazing if they didn't spend hours of their time on visits to doctors? Wouldn't you feel better if they had an anaphylactic or asthmatic reaction and the hospital had access to all of their medications and medical history? Shouldn't it be a Canadian right to live in any province and have access to the same level and type of health care services?

That's what this is all about. So, let's get this started. 

Links You Should Read: 

The Path to Health Care Reform: Policy and Politics (VIDEO)- André Picard (CPAC) 

The Path to Health Care Reform: Policy and Politics (AUDIO)- André Picard (Conference Board of Canada) 
Dragging medicare into the 21st century - André Picard (Globe and Mail) 
Time for Transformative Change in Health Care - Senate Report (Committee of Social Affairs, Science and Technology) 
Federal-provincial health accord expires in 2014, experts say it's time feds talk about their plans - Bea Vongdouangchanh (The Hill Times Online)

Links to Get Started:

Government of Canada - Members of Parliament

Alberta - Members of the Legislative Assembly

British Columbia -  Members of the Legislative Assembly

Manitoba - Members of the Legislative Assembly

Newfoundland and Labrador -  Members of the House of Assembly

New Brunswick - Members of the Legislative Assembly

Northwest Territories - Members of the Legislative Assembly

Nova Scotia - Members of the Legislative Assembly

Nunavut - Members of the Legislative Assembly

Ontario - Members of Provincial Parliament

Prince Edward Island -Members of the Legislative Assembly

Quebec - Members of the National Assembly

Saskatchewan - Members of the National Assembly

Yukon - Members of the National Assembly

Lessons to Learn from Anaphylaxis Deaths

Every time I hear about another death from food allergies, I am horrified, sad and take it as another reminder to be vigilant. I just read an article about Diallo Robbins-Brinson who passed away in Atlanta this past Monday. My intent here is not to be critical. My intent is to point out what must be learned from this.

Allergies are not a fixed thing. Personally, my food allergies developed over almost a decade and within that time, some came and went a few times. Even now, in my 30s, I have some that may have disappeared and I'm careful to eat a variety of foods and never become dependant on one thing should I develop another allergy. I also know a handful of people who developed allergies in their 20s and they had no history of allergies, personal or familial. If you are allergic to anything, you unfortunately must assume that you can develop other allergies.

The other point is that in the article, it stated that according to his mother, Robbins-Brinson was "so accustomed to avoiding peanuts, Diallo no longer carried an Epi-Pen". It's pretty obvious why this horrifies me. Sorry to use that word twice, but that's what it is - horror. I am very accustomed to avoiding eggs, dairy, certain nuts and shellfish, but under no circumstances would I not carry two EpiPens with me. If I didn't have my EpiPen (I always have my EpiPen), I wouldn't eat.

Complacency and comfort are things allergic people can never afford to be. Not ever. We can never get accustomed to being safe. We're just not. We can live our lives normally and be positive and optimistic (and we should be), but no matter what, we have to be critical and be prepared for the worst.

Once again, I am not criticizing the family at all. This was an undiagnosed allergy and I can certainly understand why Robbins-Brinson did everything the way he did. I've written before about how I can feel "too safe" when I'm staying with friends and family.

What I am saying is that parents and caregivers should have frank discussions with their child's/teen's immunologist and their child/teen. For adults, being older doesn't mean you're wiser and it certainly doesn't mean you can stop an anaphylactic attack. If any doctors are reading this, you need to be a lot more frank with your patients. A little bit of fear is not a bad thing if it makes someone carry an EpiPen or wear a MedicAlert bracelet. I'll admit that a horror story about a freshman who was force-fed eggs during university initiation and suffered severe anaphylaxis was what it took for me to become so vigilant about my own health years ago.

I would love to see an awareness campaign about always carrying epinephrine auto-injectors developed by a social profit allergy organization and funded by the makers of epinephrine auto-injectors. It worked for seatbealts.

So, please learn the lessons here. Allergies change and under no circumstances should anyone with allergies or asthma be without an epinephrine auto-injector or medical bracelet. It's just not worth it.

10 Great Things About Being Allergic & Atopic

There really are some benefits to having allergies and atopy. In honour of World Allergy Week, I've decided to compile my top ten list. Of course, this list is a bit tongue-in-cheek, and definitely not intended to make light of any of these conditions, but all of it is based on my personal experiences.

1. Because you're allergic to so many things, it's pretty impossible to gain too much weight.

2. When you're faced with a really nasty looking, oddly orange-coloured casserole made with cream of mushroom soup, orange juice, overcooked salmon and topped with Ritz crackers, you can truthfully say you're allergic and lie that you're sad you can't eat it since it looks wonderful.

3. The chefs at restaurants frequently make your custom, allergy-free meal way better than your dinner companions' meals and you are envied.

4. Since every restaurant isn't allergy-friendly you get to pick where you want to go when you eat out with friends and family (though you never take advantage of course).

5. If you have an allergic or asthmatic reaction and the ambulance isn't close enough, you get a whole team of firefighters in uniform instead.
 
6. You know enough medical terms that you can actually follow what the actors are saying on House.

7. You baby your skin so much that you'll look 30 when you're 45.

8. To avoid eating scary casseroles (see number 2), you start cooking and realize you're really good at it.

9. You are always well-stocked with epinephrine, anti-histamines, Kleenex, lotion, lip balm, etc.; so, you are literally and figuratively a life-saver at any event.

10.  You know what you can't eat or use; so, you love trying out safe, new foods and products. Your friends and family love your recommendations.

If you've got anything to add, I'd love to read it; so, please add it to the comments below!

Canadian Allergy, Asthma and Anaphylaxis Events - Spring 2012

There are a lot of great events going on this spring aimed at creating awareness and even fundraising for allergies, asthma and anaphylaxis.

Take a look, find something in your community and get involved! If you know of another great event, please feel free to add the details in the comment section.

April 16th -22nd - World Allergy Organization - World Allergy Week

April 21st - Anaphylaxis Canada - 5th Annual Community Conference

May 6th - 9th - FAARP & Health Canada - Seventh Workshop on Food Allergen Methodologies

Various Dates - Anaphylaxis Canada - Ask the Allergist
Vancouver, BC - Saturday, March 31st
Barrie, ON - Wednesday, May 9th
Toronto, ON - Thursday, May 24th
* More dates and locations to come


Various Dates - EpiPen TakeAction Event:
Ottawa, ON - Saturday, May 5th
Winnipeg, MB - Saturday May 12th
Brooklin, ON - Saturday, May 12th
Mississauga, ON - Saturday, May 27th
Windsor, ON - Saturday, May 26th
Vancouver, BC - TBA

Anaphylaxis Law is a Human Right

I won't go into much detail about the impetus for Allergic Living's write-in campaign for anaphylaxis laws in Quebec, since the campaign website goes over the details and it's been discussed in the media - traditional and social. Essentially, a little girl died needlessly. A protocol regarding anaphylaxis and asthma could have very well saved her life.

What baffles me is that the school reacted very similarly to the way my elementary school reacted 25 years ago. In the early days of my new egg allergy, I didn't know a lot about what was going on. No one really did; so, no one explained anything to me. So, being told that I might be able to eat eggs in baked goods...well, I didn't understand the risks of trying it out. The result was that I bought some kind of cake at a school bake sale and took a bite. It boggles my mind to remember it.

My symptoms were different from my first reaction. My tongue, eyes and lips didn't swell that second time (to this day, they don't), but my throat did. So, instead of calling an ambulance, I was told to sit in the principal's office with an ice pack on my eyes, even though I didn't end up needing the latter.

My memory is a bit foggy, since it's been a while, but I know I didn't have an EpiPen or diphenhydramine. I know we had a school nurse, but I don't recall her doing anything of note. My parents were called and I went home a while later at which point I likely took medication.

So, clearly I didn't die. Lucky for me, because my egg allergy became much more severe afterwards.

In Ontario, we now have Sabrina's Law. I think everyone around the world knows this. What they might not be aware of is the Canadian Charter of Rights and Freedoms. I'll be honest, the argument I'm about to make is a bit of a stretch, but I don't think that makes it invalid.

Section 7 states that "Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice."

Section 15, subsection 1 states that "Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability."

I'll add the note that, as every school kid knows, Quebec did not sign on to the Constitution or the Charter; however, it's still applicable.

The point is that children with anaphylaxis and asthma have the right to life and the right to not be deprived of it. These children have the equal protection and equal benefit of the law, without discrimination based on physical disability. In my limited opinion (no law degree here), I think this means that these children are currently not afforded the rights and freedoms they were born to in this country. Denying them access to safer environments is denying their fundamental human rights.

When children who use wheelchairs go to school, they get ramps. Parents have pushed to have defibrillators placed in schools because there have been cases where children collapsed due to unforeseen cardiac issues and needed immediate treatment. When children, regardless of province of birth, who have asthma and anaphylaxis go to school, they should know that should something occur, there is a protocol designed to do everything possible to protect their right to live.

Please sign the Allergic Living petition. If you know people who live in Quebec, encourage them to sign it. If you live outside of Quebec or Ontario, please contact your local representative to get things started in your province or territory. On a national level, please contact your M.P. regarding Motion M-230. You can find more information at the Canadian Anaphylaxis Initiative website.

Setting protocols in schools isn't asking for too much. What is asking for too much is to have to wait for a child to die in each province and territory before regulations are changed. No one wants the next anaphylaxis law named after their child.

Emergency

Health care in Canada is not a perfect system. I don't think it's possible to have one without some magical source of unlimited funds and an infallible system - two unlikely scenarios. However, when it comes to trip to Emerg, a great deal of it is free; so, I'm willing to put up with some issues. I am not willing to put up with others.

This post isn't about placing blame on any specific hospital, though I encourage anyone with a truly bad experience (use your best judgement and try to be objective) to write a formal complaint to the hospital in question.

This post is about experiences I've had and things I think I could have done better at the time. It's easy to look back and see what I should have done, but understandable that I felt I couldn't at the time. So, I think it's important that anyone with a condition that may require brief hospitalizations on a moment's notice have some foresight and plan for the possible scenarios.

You are not and often cannot be in your right mind and in complete control. Have a plan and someone to contact who knows what you expect of them. The reason I've developed this list is because while I have anaphylaxis, I show no external signs - facial swelling, hives or rashes. My asthma is also not triggered by anaphylactic reactions to food. This has led to unfortunate situations where doctors are confused about why I'm in the hospital at all or educated medical professionals have insisted I do not need to go to the hospital.

I reached out to the allergy community on Twitter and got some great advice. So, without naming names, I'll share what I've compiled - in a handy list format, of course.


1. Have a plan. This means that you need to have a thorough discussion with your doctor about what you should have in your allergy kit. Your allergy kit may contain the following: EpiPen/Twinject/Anapen, acid inhibitor, diphenhydramine in tablet and liquid form (a.k.a. Benadryl), inhaler, dosage information and instructions if you are unable to communicate, as well as MedicAlert ID that you wear at all times. If you have a mobile phone, keep it charged. If you're leaving your home province, get travel insurance (even for a quick jaunt from Toronto to Montreal).
2. Know your reaction. As stated above, you may have atypical reactions. Whatever the case, your  friend should know what to expect. Since reactions can vary, make sure they understand that things can change. Basically, is there vomiting, facial swelling, hives, etc.? You need to know.
3. Prep a friend. Tell them what they need to know in the event you have a reaction.
4. Have your kit. No matter where I'm going, I take my kit and my wallet. The latter has my health card in it.
5. Know the location of the nearest hospital. If you're traveling, it's especially important that you know the emergency number for that area. 911 is not a universal number.
6. Call an ambulance. Anaphylaxis can be life-threatening and epinephrine only buys you time. That said, request it when you call for the ambulance, even if you've already taken it.
7. Stay in control. If you are unable to communicate with ER team, this is where you need that friend. I've had doctors tell me they didn't know what I wanted them to do or been discharged in the midst of a reaction. Don't be bullied. Know what you want and make sure they follow through. This will add stress to your stay, which is unfortunate, but no one in a vulnerable state should be made to feel like a nuisance.
8. Speak up about your needs. Well, you been doing that all along, but this is where you need to know what your body needs. You'll only learn this through experience (unfortunately) and speaking with your doctor. While you should be able to rely on the doctors and nurses, they don't know your reaction. So, you may find they're more concerned with giving you a salbutamol nebulizer than a diphenhydramine drip. Your doctor may have recommended that you take a course of oral steroids after a reaction; so, let the medical team know. Speak up.

9. Document. Again, this is where your friend comes in. In the event you are unable to do so, make sure your friend knows to take names if necessary. This shouldn't be done with the aim of getting a staff member in trouble, but issues with the system need to be addressed. Take down times and what was discussed.
10. If eating out, follow-up with the restaurant or the person who prepared the food. This should be done as soon as possible after the reaction to ensure that you obtain the correct information. In worse-case scenarios, you may find that you've developed a new food allergy.
11. Follow-up with your doctor. Reactions can reoccur within a few days after the initial reaction. You should be prepared.

That is my game-plan, with a couple of additions from the fantastic allergy community.

Hope it helps. Though, I really hope you never need to use it at all.

Looking For Emerg Advice

I'm interested in compiling a list of tips from various people with allergic and atopic conditions (i.e.: anaphylaxis, asthma) for dealing with those unexpected trips to the Emergency Room. I'd love to hear about both horror stories and great experiences. I really want to hear about what you think you could have done better, what you think you did right and what you wished you could have said to the staff - good and bad, but no profanities!

I don't need to hear any specifics about your condition and I will not publish any patient names (unless requested to do so in writing by the patient). I will not publish any health care worker or hospital names.

If you'd like to contribute, please leave a comment below or email me at atopicgirl at yahoo dot ca.

If you know someone who has a story to tell, please feel free to pass this along.

Thank you in advance!

EpiPen® TAKE ACTION Event

EpiPen, in support of the Allergy/Asthma Information Association (AAIA), is holding a series of Canadian food allergy walks to raise money for anaphylaxis research and education.

For more information, to register or donate, please visit http://aaia.raiseapp.ca

The EpiPen® TAKE ACTION Event Locations and Dates are:

• Kelowna – City Park - Saturday May 7
• Ottawa – Ottawa River Parkway Trail at Tunney’s Pasture - Saturday May 7
• Whitby – Heydenshore Pavilion, adjacent to Whitby Waterfront Trail - Saturday May 14
• Vancouver – Stanley Park (Ceperley Park by Second Beach) - Saturday May 14
• Winnipeg – Assiniboine Park - Saturday May 14
• Windsor – Riverfront Trail (Dieppe Gardens) - Saturday May 28
• Mississauga – Erindale Park - Sunday May 29