An Evening at Urgent Care

Today was an interesting day that took an unexpected turn.
So many different mini-dilemmas coursed through my mind as we dealt with a situation that could easily be considered an emergency situation.

Things happen so quickly that it is difficult to always make the right decision, or a fully-informed decision, and I am just grateful for the positive outcome.

To start off this little story, I have to go back to this past Friday afternoon. See, my Berinert prophylactic sub-cutaneous injections happen twice a week - Tuesday and Friday mornings - and they help tremendously in keeping my HAE swelling episodes milder. Friday afternoon, however, I received a phone call that COMPLETELY stressed me out. Stress contributes to these HAE swells. After crying and pacing and trying to do damage control and, let's be honest, freaking out, I was able to calm down and avoid a trip to the ER or Urgent Care. There was a subtle tickle in my throat that suggested a potential throat swell, and I thought of going in, but since it did not seem to progress, I opted to 'wait and see'.

That was mistake number one.

See, it was the start of the weekend, I just wanted to stay home and relax, I wanted to avoid hospitals due to this awful flu virus and recent Measles case in the area (since I am immunocompromised), and I tend to be stubborn and downplay my symptoms. I also only had two vials of my Berinert left, was picking up more this coming Friday, and so if I used one for an IV treatment, I would not have enough for both of my sub-q injections this week.

Fast forward to Thursday. (Today for me, as I am still awake).
I get up, slowly get ready, make my way to a Dentist appointment, grab a couple items on the way home, drop off wedding invitations to be sent out at Shoppers, then head home. As I am sitting at home, I noticed a sore throat and a tickle. I thought nothing of it. (Idiot). I relaxed at home after what is ALWAYS a painful appointment, watched some tv, but my throat was really bugging me. I kept feeling like I needed to clear my throat but it never really worked. I sipped on water, had some apple cider, but nothing seemed to help. I began writing out my appointment details in my medical journal, and as I realized I was having difficulty speaking, I remembered one very huge clue that I had utterly missed:

Dental work is one of THE MOST COMMON triggers of throat swelling episodes for HAE patients.

In the past it has not been one of my telltale triggers, so it had not crossed my mind. Until it did.
A big 'oh sh*t' went through my mind as I realized I needed to go in for IV treatment. It was a throat swell alright, and it turned out to be THE worst I have had to date.

We grabbed everything we needed. The first plan is always to go to Foothills. But it was 5pm... it would take an hour or more just to get there. Same with Rockyview at this time of day. So where to? Do we risk getting stuck in rush hour traffic? Do we try an urgent care centre? Should we have called an ambulance? I can still breathe, it is just some mild swelling at the moment so an ambo is too dramatic... but which facility do we go to? Do we opt for the preferred choice of Foothills or do we find the closest place?

In my mind - I am bringing the blood product they need to use. I am trained in how to mix the product, to draw it out into a syringe, and the injection rate (60-90 seconds for sub-q, 10 mins for IV). So the only part I cannot do myself is start the actual IV - I have not been trained on putting a needle into my veins for an IV infusion.
By the time we got on the road (fiancé driving), my breathing was noticeably labored. It was progressing much more quickly than my previous throat swells. The closest facility was an Urgent Care centre down the road. In my mind, this was perfect!! All I need is an IV started, it will be much less busy than a big Emergency Department, I would be seen  rather quickly, it was very close, parking is better, and they are equipped similarly to an ER save for a few machines - or so I thought.

This was another mistake. A big one.

What I was unaware of - which I know now - is that Urgent Care Centres do not have direct access to a Blood Bank, nor are they equipped to administer blood products.
So they had no experience with Berinert, if I needed any extra they could not access that, and they did not know how to infuse the product. What was worse -> This was not all clear until my breathing and speaking was noticeably and frighteningly affected. Not only that, but by the time I found out that I was not supposed to have gone there, I had already been admitted, had ECG stickies all over me, AND my Berinert (which I had brought in a cold pack since it needs to remain refrigerated) had already been taken out of its package to be looked at. So, at this point, my blood pressure is super high (for me), as is my heart rate, I am having major difficulties breathing normally, my voice is now a near whisper, the medication (blood product) had to be administered within the hour and could not be replaced at this facility, and the situation was freaking everyone out. There was no precedent at this facility for this treatment. There were no protocols in place. So they were trying to get faxes of the proper consent forms, trying to figure out how to handle and administer the medication (not yet knowing that I knew how and could guide them through it), and (fairly) they were all pretty upset that I was even there in the first place. I should have gone to a hospital Emergency Department.
My belief was that Urgent Care was a slight step down from ER and that by bringing my own treatment it would be a simple process of putting an IV in and me administering the medication.... but, as one of the nurses put it, Urgent Care is more like a "glorified walk-in clinic" and is not equipped to deal with such emergencies - especially ones that require (or may require) blood products.
So should I stay and guide them through the treatment protocol? Should I leave and hope I reach a hospital in time? Should I take an ambulance to a hospital? Should I do a sub-cutaneous injection myself and then make my way to a hospital hoping it would settle the swell enough within a couple of hours to get me the IV treatment elsewhere? What are my options? And let's not forget that I am trying to decide this while struggling to catch my breath at every inhale...

I have to say, after all of the confusion, not only was I treated, but everyone was exceptional. Granted, I think I pissed off a few nurses, along with other patients who waited longer because I kind of monopolized the area (which was not my intention and was completely out of my control), but that treatment works SO quickly that within half an hour of receiving treatment my breathing and my vitals were back to normal.

I understand entirely the frustration of the medical staff. I also understand that when you are a patient waiting for treatment and you are waiting, and waiting, and waiting, that it is more than irritating.

In my defense, however, I was a little panicked. You know, because I COULD NOT BREATHE PROPERLY!!!

My throat swells usually progress very slowly over hours and hours, sometimes even days. This was the worst one, and progressed MUCH faster, but only once we were actually IN the urgent care facility did it progress to a point where sending me away to try and get to another facility in time was a HUGE and DANGEROUS risk.
And, unfortunately, as a chronic illness, chronic pain, inflammatory illness patient, I have experience in the "damned if you do, damned if you don't" department. People are always telling you that patients with chronic illness and chronic pain never belong in the ER. That because our issues are so complicated, most ER doctors don't always know what to do or don't want to do something that will step on the toes of our specialists. That if we aren't actually dying right at that very moment, then it is more appropriate to go to Urgent Care. But then in Urgent Care, those same patients are told that their charts are so complicated that they should be going to the ER because at least in the ER they have specialists available in the building. Plus there are some imaging equipment that is not available at Urgent Care. And now that I know that Urgent Care does not have access to blood products, that is an entirely new issue!!!!
Either way, chronic illness patients are blamed constantly for tying up the lineups and for not going to the correct place or for not being 'emergency' enough to be in the ER but then for being too much of an 'emergency' for urgent care.

My point is -
I learned a very valuable lesson today. That if I have an HAE throat swell episode and require an IV blood product, that I absolutely 100% need to go to a hospital emergency department -> even though I am not 'immediately dying'.

In all sincerity, I do apologize for any confusion and extra stress or strain I may have put on the health professionals and/or other patients. It was a decision made under frightening circumstances that had me panicked (a decision that will not be repeated), and had I known about the rules regarding administering blood products, I never would have gone there in the first place. I am appreciative of the medical staff and I hope that the suffering of other patients was not completely unbearable while the doctor was providing the necessary immediate assistance due to my inability to breathe properly.

I am thankful that I received prompt treatment despite my mistake. Another 30 minutes of that quickly progressing tightening of my throat could have been even more intensely terrifying.

And, as always, a huge thank you to Ryan for always being there and supportive and for his efforts to stay calm in order to try and keep me calm.

Just a regular Thursday night. ;)