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.
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