How to Navigate Emergency Room Visits with a Chronic Illness

Have you visited an emergency room or urgent care lately because of a chronic illness?

If you have a debilitating chronic illness, you likely have been to the emergency room or an urgent care at some point. The annoying part about the whole experience is that your flared up symptoms are not likely life-threatening, but merely quality of life threatening. So when things get bad, you have to constantly argue with yourself, do I deserve to go or not?

Having been an EMT volunteering with the fire department, I’ve learned that there are quite a lot of people who really don’t need to be in the ER. I don’t know why most people forget the fact that urgent cares exist, because if you don’t need IV medications, or are bleeding out, or have a heart problem, they can probably get the job done for you at a fraction of the cost and with shorter wait time. They can do x-rays, flu tests, and some urgent cares even have IV saline. 

But if you have a complex medical issue, like Mast Cell Activation Syndrome (MCAS), a heart arrhythmia, or completely uncontrolled Postural Orthostatic Tachycardia Syndrome (POTS), you may find yourself in the ER waiting rooms, because urgent care doctors have never heard of your disease and say you just have anxiety, your medical condition is so complex they aren’t comfortable treating you there, or it’s the middle of the night or a holiday.

Urgent cares are not going to want to see you if your heart rate is over 200 BPM because you have a cold with POTS, for example.

But going to the ER takes a LOT of time and energy. Some doctors may not believe you or you may end up waiting for hours just to be told to go home. The ER is the ER for a reason: there are some pretty sick people in the waiting room with you, with their God-awful germs waiting to get you even more sick.

So how do I make the decision to go to the ER and what steps do I take to make it a smooth process?

There are really two main events that would make me seek out an ER visit: having a supraventricular tachycardia (SVT) episode that won’t terminate on its own or not being able to keep fluids down because of vomiting/diarrhea for a significant amount of time with POTS. If it’s an SVT, I have to go to the ER, but if it’s POTS-related, trying an urgent care that offers IV saline is preferable.

I’ve read a lot on forums of people considering going to the ER with POTS because their heart rate is 120 when standing. I get very confused by this because their doctors must have never explained POTS to them. If your heart rate didn’t reach 120 BPM upon standing without medication (and even with medication for some), you wouldn’t have POTS. In February, I had a mini-POTS downward spiral. I went from 65 BPM laying to 180 BPM standing in under 30 seconds. And even with this, my POTS doctor just said, keep hydrated and wait it out. I wasn’t loosing fluids rapidly because of an illness and it wasn’t hot out, so really I just had to wait. It sucks, but it is the reality for a lot of chronic illness flares. When in doubt, contact your doctor.

However, last week I ate some mysterious salmon and low and behold, I woke up almost shitting myself in bed the following morning. At first I thought, well, I have IBS-D, so this will probably be a one and done situation. Even after a few hours of running to my toilet, I was still not concerned. Stay hydrated, stop eating food for a bit, and you’ll be fine. But the universe decided it was my time to shine I guess. After literally shitting water for 24 hours, I realized that this was some India food poisoning level shit and I was so dehydrated, I couldn’t even pee. Worse yet, the trigger for the diarrhea was drinking fluids. This situation is the worst nightmare for someone with POTS!

Luckily, my Corlanor/ivabradine heart medication was still doing it’s job so at least my heart rate wasn’t completely bonkers, but I knew this was not a good situation. When living in India last year, I would get SVTs almost daily or even several times a day, which practically dissapeared after electrolyte replacement and a few bags of saline. To think I was about to get an ablation in India for a problem that could be handled by proper hydration!

I couldn’t sleep, I couldn’t drink, and I sure as hell didn’t want to go later to the ER for adenosine to fix the inevitable SVT. But it was 3AM so urgent cares were closed. So my mom and I drove over to the closest ER and were completely surprised that I was the only patient in the waiting room, so there was no wait time. Maybe thirty minutes passed between entering the ER and having a line put in for fluids. What a miracle! Two bags of saline later and some atropine to dry up my intestines, I left the ER still feeling awful, but at least I was staying on top of the situation.

It was by far the best ER experience I have ever had and here are some tips that helped it run so smoothly:

  1. Go to an ER or urgent care that is associated with your primary doctor. For example, I have a Duke cardiologist and PCP, so I try and only go to Duke urgent cares or ERs. Why? All my records are easily available and I am sure there is a flag on my chart for fluids, because I have never had an issue at a Duke location for POTS. I don’t have to prove myself: it’s already clearly listed and explained on my chart.
  2. Don’t go to a trauma center. If you go to a top tier ER just for fluids or other more simple ER-only fixes, you will likely be waiting forever. Go to an ER that isn’t a trauma center because they won’t be filled with as many pressing cases.
  3. Go in the middle of the night. Don’t go when everyone else decides they need the ER.
  4. Wear a mask. I use a vogmask to help prevent getting sick from other patients. The last thing you need is another reason to go to the ER a few days later with the flu or a stomach virus. With that in mind, sanitize your phone when you leave and immediately change your clothes when you get home.
  5. Take snacks with you. If you are trying to test and see if an anti-diarrhea medication works, it would be an extremely poor decision to try with foods you don’t normally eat, especially if you have dietary restrictions or MCAS. Also, plan to be at the ER for at least six hours. Take some food!

 

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3 Comments Add yours

  1. My friend’s daughter has a lot of disabilities and chronic pain, so she frequently needs to go to the emergency room for help . I like how you mentioned that she should choose an ER that is associated with her daughter’s primary doctor, as all her records are more easily available. I’ll definitely share this article with my friend, so thank you for sharing this.

    Like

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