ER Advocacy

Seeing as how I've spent so much time in the ER (Though not in the last month or so.. whoo hoo!!!) I've found a few things that make it a lot easier for all involved. Being in the ER is never fun, and it is particularly less fun when you know how it is going to end but have to get through the process anyway, but having a few tips can go a long way to making it a lot better. I feel like writing a numbered list tonight so that is what this post will be.

1. Expect to be there forever. This may not seem like much of a tip, but managing expectations can go a long way. I've seen so many people lose their cool over how long the wait for a doctor is, or to get called back into the ER after triage. If you expect to be there for awhile, you can handle the wait a lot better. If you are able, try to read, or knit or something to help pass the time. Usually by the time I make it to the ER I'm too sick to do any of that, but I try to find a comfortable spot where I'm not in too much pain and I let whoever I am with distract me or sometimes try to rest until it's my turn. Getting frustrated about how long it is to wait doesn't help anyone. It's hard when you are in a lot of pain, but since they prioritize the people who are most severe it can be awhile. I'd rather know that if it was life or death I'd be in there first and getting care right away and having the doctor there, than make a giant fuss about how long I'm waiting to be seen.

2. If you have a diagnosis, or even a strongly suspected one, and you are there for a flare of a chronic condition tell them. This seems a bit basic, but it is really important. From the triage nurse onwards I tell everyone I am having a flare of chronic hereditary pancreatitis. This helps them know how serious it is, can help express how much pain I am in at the time, or how likely I am to puke while waiting (surprisingly that actually hasn't happened yet) etc. Understand though, they are still going to investigate all of the other common things that might be causing your symptoms. They will do all the routine blood and urine cultures etc. to try to confirm what you are saying. It's not that they don't believe you, it's just that it's better not to miss that it's actually a bowel obstruction or gallstones or something else that is similar but just not quite.

3. Bring a list of all of your medications, dosages and schedules. When I bring in my list (that has other stuff on it that we will cover shortly) nurses and doctors never hesitate to comment how awesome it is and how rarely they see something like this. It scares me the stories that I hear of people not even knowing what medications they take or what they take them for. If you take meds and you don't know what it is for call your pharmacist or doctor ASAP and ask. Keep it up to date too. I'm constantly printing mine again and again because it constantly changes. Also, you could put it on your smartphone or tablet, but I like being able to hand someone a physical copy to attach to my chart. This is helpful for all kinds of reasons, and is one of those no brainers that shouldn't need to be said, but if you are on more than one or two things, or have conditions that lead you to forget things like names of drugs (or if there are just too many) it is essential. Also bring the drugs with you. I've definitely sat in the ER with a pharmacist pulling every drug that I ever take ever out of my backpack and going over why I take it, how much I take and how often I take it with them. It is really important.

4. Bring a list of all the things you are allergic to. Especially if you are likely to encounter them in an ER. I'm allergic to basically all medical contrast ever and all adhesives ever so I have lots of fun in the ER. It's gotten to the point that there is one adhesive that is kind of okay to use with an iv that I can use. The ER that I go to doesn't stock this. My solution is rather than wait for the ER to track some down from another part of the hospital, that could delay my iv and needed medications is to carry it with me. I actually just keep it with me at all times. Again a list of allergies is helpful because it means they can plan treatment etc. around them without harassing you every ten seconds.

5. Be knowledgeable about your condition. If you've had any surgeries or procedures, if there are things in your body that wouldn't normally be there, if you know what dose of what pain medication works when you are in hospital, let your doctors know. Often the doctors will ask. The one that I really love is the doctor will come in, and they will ask me what is going on that I came to the hospital. I will tell them I have chronic hereditary pancreatitis and I am having a flare up. They will then without exception ask me if I know how I got pancreatitis. Sometimes I just stare at them and repeat it's chronic hereditary pancreatitis and let the second word creep in. If I'm in a moment of less pain though I usually tell them I got a perfect copy of imperfect RNA.

6. Go to a hospital where you have a history. This should be 1, but I'm too lazy to go back and change my list. It has improved my care 100 times over to go to a hospital where my GI doctor works, as opposed to the hospital that might be closest. Having access to past tests, procedures, records of my pain management regimens, makes a world of difference. On top of that sometimes I get lucky and it is my GI doctor who is on call. My GI doctor is however 100% of the time consulted and involved in my care. If it isn't possible to do this (Like when my sister and I were on vacation and she ended up in hospital hours away from home) make sure contact information for all of your specialists is also one of those things you bring to the hospital. Once they get you stable the doctors involved in your care can call your specialist at home to find out the intricacies of your care, and you'll be better off for it.

7. Be nice to people, but don't be afraid to advocate. This also extends to try not to go to the hospital alone if possible. It's awesome to have people to help track a nurse down to ask for the next dose of pain medication, or to steal an extra blanket for you (Though pro-tip: Ask a nurse for a heated blanket, it's a small thing but they are way better). Also, if they try and put you on NPO negotiate to be allowed ice chips and water if possible. Again a small thing, but makes a huge difference. Just remember that nurses are human too, and when it gets busy it is busy. From spending so much time there I've learned a lot of patience, and it's hard, but things happen in their own time in the ER. It is it's own world, and at least there is a lot of people watching to be had there. Not often people in their finest moments, but there can be a lot to be learned from that.

Anyway, that's what I've got for now. None of it is really magic, but it is a lot of small things that make a difference. Anyone else have tips for ER visits I haven't mentioned here?