To go, or not to go

Anyone who’s been to the ER knows there’s always a wait. You sit in those plastic chairs wondering when your names going to be called so you can finally go through those double doors to been seen by a doctor and be treated. When you’re chronically ill before you even get to the hospital you have to make the decision of “is it worth it?” because when you finally get on the other side of those doors you’ll most likely be met with a blank stare.
While my medical history is brief, it’s complex. Most doctors and nurses have no idea what a Chiari 1 malformation is despite the fact that it has an occurrence rate of 1 in 1000, and if I stumbled across an ER doctor who knew what an anti-ku antibody was or the fact that it effected the joints and then the lungs, I would fall out of the hospital bed.
You see these are the considerations we have to take into play. I have to explain all of this to the doctors while I’m feeling like crap with whatever has decided to flare up. It might be my chiari and I have a headache that’s sitting at a 8.5 on my pain scale, which is most likely a 12 on yours, or I’m in a dry heaving fit and am trying to get words around each burp and gag and my stomach is going into convulsions.
So when I go to the emergency room I’ve already faced the argument with my mum, because she usually has pushed me to go, and I’ve come back with the conversation of “they don’t treat the chronically ill, they just want them out of there.” And it’s true. Ask anyone of us that have walked into an emergency room in a flare that we haven’t been able to get under control at home. We’ve spent hours going over our history’s to countless doctors, and even more nurses, they don’t really understand it all, and then they try and treat us as quick as possible and then send us on our way.

In the past month I’ve already been to the emergency room twice. Last year I managed to stay clear of the ER, and was only in hospitals for appointments and tests, so the fact that already I’ve had to make the horrendous journey through those double doors twice makes this year a little daunting. The first trip was the result of a dry heaving episode. I’ll try to explain this as clearly as possible: we think these occur because of the antibody that my body is producing, this is only because the frequency of episodes have gone down since starting treatments. Basically what happens in these episodes is I get a tightness in my chest and I feel like I need to burp and then when I finally do I can’t stop for what seems like hours but in reality is usually 45 minutes. Not only is it constant burping (yes I belch for 45 minutes straight) but also my diaphragm goes into spasms that crush my ribs without my consent. It’s painful, it’s exhausting, and there’s nothing we can do to stop it. Nausea gets brought to the party on most occasions and more often then not I find myself sitting on the bathroom floor with my head over the toilet. There’s no reason for this, we’ve kept food diaries, and stress logs, and even monitored the way I ate to see if I was inhaling too much air. I wasn’t, yet somehow my body is producing enough air in my lungs to keep me burping for an hour. And they aren’t small burps either, they’re deep, guttural, and will put any local pub goer to shame.

The Sunday incident started out like any other: I got hit with a wave of nausea but I worked through it and picked at dinner. It was two days after my methotrexate dose and sometimes the chemo nausea lasts a little longer so I put it down to that. But 5 minutes after dinner my chest closed in on itself and I made my way to the bathroom just incase dinner came up. It didn’t but that was when the burping started and didn’t stop. For almost two hours I was constantly releasing air and it was painful and left me in tears. I can usually handle it pretty well, I stand at the sink with my arms above my head as that’s the most comfortable for me and I just go through the motions of stomach spasms, ribs moving, and lungs convulsing.

In every flare or high pain incident when you get to a certain threshold that you can’t handle you look to your career and for me that’s mum. I know she doesn’t hold the answers but it means I’m not alone when the pain gets too high. The reason I’m telling you is this: there’s a look where you can see when you just know that it’s time to go to the hospital because even mum doesn’t know how to help and as I was standing there, bent over the sink with my stomach convulsing, going into hour 2, I looked to mum and I just knew that it was time to get in the car.

Arriving at the ER it was rather odd to explain to them that I was there because I couldn’t stop burping, but once the triage nurse stood next to me for more then three minutes he understood that I wasn’t joking. My phone was passed to him because it’s just easier then explaining all my medications, medical conditions, and medical history, and then my vitals were taken. We took a seat and that’s when things got a little worse: I started to bring up dinner, which involved capsicum, so it kind of looked like blood in my vomit and just made me feel even worse. Eventually we saw a doctor who had no idea what a chiari 1 malformation was (I can’t blame him really) and the blank look I got from him at the mention of an anti-ku antibody was comical. But he took my blood, after finally getting a cannula in (thank you shitty veins, years of blood draws and cannulas) and getting blood all down my arm and on the bed, and then ordered some anti-nausea meds. The conversation with him was rather odd though. He seemed to be grasping at ends and asking about strokes because I mentioned that my neurologist was up in Sydney. I felt like turning around and saying that “no, I’m not here for my head, thanks for the concern, but please just make the burping stop” but I think mum would’ve slapped me around the head for that one. Eventually the burping slowed and I was having five minute breaks between each fit, the nausea eased, and despite there being “some things slightly off with your blood I’m happy for you to go” was the doctors departing words. You see, that’s the thing we get: a rush for us to be gone because they don’t understand our conditions.

As for ER trip number two that started with a sneeze. Yes you read that right, I sneezed twice on Wednesday night and the pressure in my head never equalized, but I went to bed in the hopes that a good nights sleep would get rid of it. My hopes were crushed and I woke up with the same amount of pressure behind my eyes, so I took some paracodeine (lets be real, panadol does nothing for my headaches) and we went to go fruit picking. Here’s something I inherited from my mother: I’m stubborn and I’ll push through a lot of things despite knowing it’s probably not the best for me. A morning of picking, more paracodeine, and under the hot sun, my body was not doing well. By 12:30 I was pale (my major give away), visibly shaking, and clutching my head in pain. Yes, I had let it get to that point because I refused to let my body beat me but it kicked back with a vengeance. We finished early that day and when we got home I went for a shower (don’t know how I managed that), and took some endone. For those that don’t know endone is oxycodone, the next best thing to morphine and what they gave me after I had brain surgery. I’ve been rationing it out and only use it when the headaches get really bad and this certainly felt like the right time. But it didn’t do a thing! I was still left in bed with earplugs in because I had gone into sensory overload and sounds were amplified and photophobia and set in resulting in lights bringing me pain. I got out of bed once to go to the bathroom but that only resulted in me almost passing out, and that when the look was shared with mum and we were back in the car to the emergency room.

Two hours. That’s how long we waited in those uncomfortable chairs. Two hours where I wanted to take a screwdriver to my head and make another hole. Two hours where I had tears running down my face from the pain. Yes it was that bad. At the hour and a half mark mum went and asked if they could give me something while I waited and it took them another half hour before they came out to give paracodeine, and I know it’s standard procedure to start out on that but I actually laughed when they said it would help. I couldn’t help it, it just slipped out and mum may have given me a look but really, as if I hadn’t tried that?

Thankfully as the nurse was giving it to me the doctor was calling us through. She was a sweet lady, but was out of her depth with my medical history. The nurse was wonderful, took my vitals and because my heart rate had been doing some crazy things he hooked me up to a heart monitor and blood pressure cuff just to keep and eye on me. Eventually the head doctor came and saw me and his biggest concern was exposing me to too much radiation by running a CT scan. I’ve had a total of 7 CT’s, 5 on my head, and 2 on my abdomen/chest. I could understand his hesitancy, it’s not everyday you have a 20 year old walk in who has had brain surgery and a chiari 1 malformation.
But we sat down, went over some of my old scans and at one point my heart rate spiked on the monitor as the pain washed over me, tears spilled over my eyes and the pain was clearly evident on my face. I finally let it show, because I was too tired and in too much pain to hide it. It was then he looked at me, put his arm on my shoulder and goes “I want you to have a nice life and I don’t want you to be in pain. We’ll get this under control as quick as possible and if it’s not working we’ll get you some more pain relief” he then shooed the nurse out of the room to get me some endone and I had it in my palm within minutes.

Pain relief always takes longer to take effect for me, for whatever reason the usual 15 minutes is 45 for me. But my pain was brought down from an 8.5 to a 6 and then finally a 4 when I wasn’t moving. The nurse from before, the one who hooked me up to the heart monitors was concerned enough to go over my chart and see that I was on so many medications and ask if there was any that I needed to specifically take and because it was a Thursday that meant methotrexate. He then went on the hunt for it, but for whatever reason the hospital didn’t have it, nor did they have Topamax, the medication I take for my headaches. It didn’t matter too much because I would take it when I got home, but the fact that he cared enough to go through the effort meant a lot. We spoke to the doctor again and with a judgment call that there was nothing to be concerned about he wrote up a script of endone for when I get another chairi headache, and then suggested I see a neurologist incase my medications weren’t working. We explained the traveling situation but he still wanted us to see one and said he would get in contact with a neurologist if he could.
A total of six hours, two of which was spent in the waiting room and we were finally off. As I made my way down the halls towards the exit I gave a wave to the nurse I had, and the two doctors, one being the head doctor who just wanted me to not be in any pain, then there was even the nurse from the first ER trip who recgonised me. I hope I don’t become a familiar face in the Shepparton emergency room, especially with a two hour wait considered to be good, but if I manage to get the main doctor I think I’ll be alright.

So the plan now for my head and my immune system: after the first trip I phoned my immunologist and he put the episode down to a random flare and said to continue decreasing my steroids as planned. I’m now down to 17.5mg but we hope to get below 10mg. We aren’t going to be increasing my methotrexate dose yet, so that’s staying at 20mg, the maximum is 25mg, as some of the side effects can be irreversible and we don’t want to risk that. As for my head, that’s where things get tricky. I’m going to try and see a neurologist while I’m up here in Rochester (yeah, we may have moved, I’ll explain later) but they aren’t exactly in abundance so it means we have to find one close by, phone to see if they can actually see me, then phone my neurologist in Sydney to get him to write up a referral and then get my notes sent to the neurologist that I’ll be seeing. Sounds simple? The hard part is actually finding a neurologist! They are few and far between in country Victoria but we will find one and I will get this sorted.

This wasn’t the way I thought the first month would turn out, and I certainly didn’t expect to end up in the emergency room twice hooked up to heart monitors, blood pressure cuffs, and cannulas. But, when has anything ever gone to plan? So we’ll take this as it comes. It might mean changing my meds or changing topamax or amitriptyline dosages to find something that works a bit better for me. I may just need another MRI to check that everything is alright, my last one was in April last year so who knows, maybe I just need to check in and make sure my brain hasn’t grown. So yes, twice this month we came to the point where we had to make the choice of to go, or not to go, and we had to, because sometimes the pain and my health is just too much for me too handle and we have to ask for help.