I don’t like going to emergency rooms. This is because I am an individual and most emergency rooms view people as being part of a ‘parameter’ – meaning, ‘Will they live? Then get them out of here.” Indeed, the doctor who looked at me told me that in THIS case it was acceptable I came into the ER, and could in the future, assuming I could not get to a family doctor.
The reason I went to the ER (or was taken), was because I could not stay awake, after 9 hours sleep, I quickly was fighting sleeping, before falling asleep and would not wake up. Linda woke me after over two and a half hours and several tries but at the time I could not move, or even speak to start. She tested my BP and I was 90/40 and just over half an hour later 100/53, and that was AFTER she had moved me to a seated position. Over the next hour my BP remained as low. So she packed everything up and put me in the van and we drove to ‘the other hospital’ the one which is not ‘one of Canada’s worst’ according to the doctor who works there. We waited, with me slumped face down, and my lips with a bluish tinge (according to Linda), for 30+ minutes to see the admiting person in order to be registered to wait in the waiting room. In the waiting room: People were there with babies who had fallen, or 2 year olds who had a sore shoulder. After about 2 hours, I was admitted into the ER and given a bed. The bed was fixed and unlike other facilities did not go up and down so like, people in wheelchairs can transfer over. The person taking the admitting information had told us she would be back to get our conditions and medications, but she did not. Nor at any time during the entire visit did anyone look at the medical alert bracelet. This makes the cost of taking the ambulance almost worth it as things like ‘can't sweat’ or ‘trypanophobia’ (needle phobia) or ‘oxygen therapy’ or ‘multiple system atrophy’ actually make it onto the chart. I mention that because these are the four things on my medical alert bracelet and these are the four things in which the ER personnel actively endangered my health.
I got on the bed; and a woman came to take my blood. She was an angry woman who said things like, “If she isn’t ready then I’m not taking any blood!” or “If her vein isn’t right, I’m not even trying.” She either had not heard of trypanophobia or did not want to hear about it as she said, “Fine!” in a "I'm fed up" tone and then turned around and left. The Emla was put on in the waiting room so the tech could take the blood as soon as I entered the ER, but that tech did not return for over another two hours.
I explained to the head nurse that there is a medical protocol for trypanophobia as it kills, and has killed 23 people actively (by causing cardiac arrests), many more are killed passively by lack of treatment like mothers who won't get ceasarians, or the diabetics who won't take the insulin. Those 23 were noted in just one journal article. The response was, “Yes (23 died), but out of how many?” This seemed really odd to me. My understanding of ‘Health and Safety’ is that if you do something like find out that people have Swine Flu, instead of asking, “Yes, but how many are dead?” And if the number is below 50 for your country you do nothing, you institute a protocol, like asking people if they have returned from Mexico recently (which is up at every doctor's office in the area). And if you kill someone in the ER, or kill many people because of an action, they put in protocols to stop you killing people. Except in this hospital it seems, where, as open as a profit-conscious HMO, the question isn’t if people will die, but how many will die, and "what percentage?” Well, I don’t know, but since Trypanophobia (Needle phobia) has four types and most people with it won’t go to the hospital and only the type 1 tends to die DIRECTLY from Syncope which lowers the heart rate enough to go into cardiac arrest. And when the person who tells you they HAVE Trypanophobia is coming in because they have a low pulse and a low blood pressure, that seems a life endangering response (as the most common response to trypanophobia is a dramatic drop in blood pressure and heart rate). But to answer the question, considering how few go into the hospital and how rare the condition is, and how this affects one type of four, maybe .5% annually die, maybe 5% annually die. I don't know. Is that an acceptable loss?
I will state that over at Jubilee, the other hospital we chose NOT to go to, they have always treated my trypanophobia well, and put on emla, and a patch (we had to use our own emla and patch at this hospital) and followed our protocol exactly. Not like this hospital where there were threats, offers of being held down, or people telling me to wipe off the Emla (a topical anesthetic) as they are coming over only to NOT come over for over an hour (making the deadening process useless). It was not a good experience.
For some reason, even though my fingertips are purple, and the last two fingers of one hand is black along with part of my palm, the oxygen reading on the monitor continues to show a perfect 100 percent. We find out just before we leave that to stop my Raynaud’s giving a non-reading or if someone has nail polish, or any other reason, the oxygen is set to 100% default. If it can’t pick up your oxygen, and your fingers are black, it will read 100% oxygen. This is a GREAT idea for not having to constantly check people due to alarms (my oxygen alarm was turned off anyway as in talking to a nurse I managed to animate enough blood for it to read 80%, and the alarm annoyed her so she turned it off, and then didn't turn it back on). But the whole 100% default is not a great idea if the patient needs oxygen therapy to get better. Or as the doctor said, seeing me six hours later, “Your oxygen is fine.” And then mentioned I should ‘consider’ the possibility of anxiety or other mental disorder and the power they have over our minds.
As time went by, because no one was checking my body core, and I can't feel my own temp, it turned out I was getting hotter and hotter. This started a series of seizures which excited the ER, SOMETHING DRAMATIC could be done, like ativan or an IV. However, though we had told everyone that came by or in that I could not sweat, no one took it seriously. We were to find out that when the med student looked at my chart and asked, “So when did you first get diagnosed with MS?” they thought I was ‘heat intolerant’. No! ‘No sweat' means 'NO SWEAT’ it means 'heat stoke' (except it turns out that an angry and incompetant blood tech (she went right through the vein, with a butterfly!) can make me sweat slightly in the underarms, then it stops - so absolute terror still produces a small result).
The problem was, I figured out I was hot but post seizure, I couldn’t speak, then when I could speak, I could only speak German. Even the nurses’ and Linda’s superhot hands were cool to my head but no one figured out - hmmmm, if my hands feel cold on her, how hot IS she? Superhot blood was going to my brain and was going to keep giving me seizures, plus my resting heartrate of 73 (which with MSA is hardly enough for me to stay awake) was now 92, then 96, then 101 and holding above 100 – for lying perfectly still, almost asleep. I told Linda in german I was hot. So Linda used our ER break packs to cool my head and then asked the nurses for packs, and still they didn’t get it. We decided it would be best for my health to get out of there and that no, in a heat wave going to the hospital won’t be a last resort. So, I have a resting heart rate of over 100 (my theory is that my body was trying to get rid of heat by pumping it out to the extremities and back to the core (making the core where the heat is hot as it is working hard. The heart continues pushing the blood to the surface, which due to the fact I wasn’t sweating was simply making me hotter, and my heart rate increase). Linda said that I looked WORSE now, with my red face and nose and ears than I did when I had the blue tinged lips. The doctor, when he arrived saw no problem with a resting heart rate above 100…..and then suggested thinking about mental health services for things like panic attacks and anxiety disorders as ‘the mind can have a great impact on the body’. He included a pamphlet for me on dealing with anxiety disorders and panic attacks when I left. So it turns out that your treatment AFTER you have been actually BEEN DIAGNOSED with a named disease still means you get treated like you are the problems if the doctors don't know the disease. And thus it was all in my head, instead of, "Uh oh, rare disease, lets look it up and see what the potential hazards are?" - nope a lot easier to go with 'panic attack'. Now, as to the over 100 beats a minute heart-rate: I would like to inject the ER doctor with adrenaline 24/7 for a while to test this theory: that having a heart rate while resting which is the same as what you have while running a 5K in training (as I did 5 years ago, actually about 94 for running), that having that occur all the time is probably very fatiguing. That's my theory - not, "The books say people can have it" but could YOU Dr. ER, have it and keep your job? But then, individual patients are not the vision of the ER, just, “Can it live? Have other humans lived like that?” and "is the problem immediate to be dealt with THIS minuste?" not “Is that good short or long term?" Or "can they hold a career like that?”
My BP spiked when they took the blood, and as I found out this morning as I got a nose bleed (174/143). But then, I don’t go to ER’s for nose bleeds. Or blood out of the mouth or ears. We got the blood tests back and yes, I still have anemia, the same amount that Jubilee circled and wrote, “GP deal with immediately” – turns out that while I am below the Canadian level (which is far lower than the minimum UN levels), I am not low enough for a ER transfusion, which is below 70.
However, all four of my blood oxygen carrying aspects were also below the limits and Low – low red blood cells per volume, low amount of oxygen carried by each cell, hemoglobin, hemocrit, all low. The doctor said that they weren’t DRAMATICALLY low, like I wasn’t bleeding inside, and said "look my white blood cells were within the normal range." I sort of looked at him funny and said, “Good, because if they were elevated or eliminated, that would be a major infection and that would be ANOTHER problem.” He said that my anemia and RBC and other anemia related tests below the limit was not so dramatic that I would not notice a difference from yesterday (hence not the reason I came in), and then asked me: What is it you want to know? I said, “Well, those results might not make the difference that brought me here but I AM fatigued and have been for a year, so how CAN we treat it since my iron and my B-12 are normal? Idiopathic Anemia?” He said these things were best investigated though the GP and specialists. (insert hollow laughter) So no luck there, and no long term change in the fatigue factor, or as I pointed out to him, it is best to eliminate a side issue to see clearly the main disease. He said, “A lot of your tests came back normal, which is good, since you know, normal is good and something bad isn’t good.” I told him when I come to the ER, I want something dramatically bad (I can get crappy normal at home, why go to the ER for it). When you only get 4-6 seconds of a heart monitor strip the doctor sees, you WANT something dramatic to happen on it!
After all the 'normal' and 'Good' The ER doctor failed to mention that about 35-40% of ALL the tests including those for kidney and liver were ‘failure’, or lower or higher than allowed perimeters without treatment – that I had about 15 items that ‘required treatment’ according to the standards and perimeters set by BC medical and Canadian Medical Authority.
Linda noticed and questioned about a liver and another test failure, if they were likely due to hypothyroidism (she does her reading) and he admitted that he didn’t understand why I wasn’t on synthyoid as is was cheap and an easy solution. He did not however offer synthyoid (we asked!) as these are best done by your GP (or as he added, “Or in your case, a walk in clinic.”). Strangely when offering the results to take to the clinic he adds a pamphlet on mental health and dealing with anxiety disorders covering the top of a medical readout where 30-40% of all the tests are in the ‘treatment required’ zone. So 30-40% medical test failures but.....I given pamphlet on not having panic attacks.
So, since they were not regulating my heat, or my oxygen, or my heart rate (the head nurse did note and state that it was odd that after being giving Ativan which should LOWER my heart rate, given to me during seizures, mine instead went UP). The German speaking dropped out after an hour or so. Just in time to wait a half hour, then talk to the doctor and to leave.
I find it problematic as we went to the ER, but ended up using OUR emergency supplies to keep me from having more seizures - IN an ER. And I was without body temp, oxygen or heart rate monitoring (even after multiple seizures and a change in heart rate of 30%), they were and had endangered my health. After six hours without an offer of water or anything the doctor suggests I was lethargic due to being dehydrated and wants me, at 3:00 am to stick out my tongue. I do, he hmmmmm’s and that is that.
So, believing they never really understood my disease (or even the name I think since I don’t HAVE MS), I wheeled over and asked the doctor, ‘Since my disease has two main life threatening issues due to autonomic failure: first is stopping entirely of the heart and second is stopping breathing’ When WOULD I come to ER?"
He said that is a good question, and that if I came like I came today frequently then they would know it was a mental issue, but to do it infrequently due to a change, like I had today was okay. But for a stopped heart or stopped breathing (insert his laugh) ‘we’ve dealt with far worse than that, and that is not an issue.’
Wha? What is worse that a stopped heart and lungs due to autonomic failure? No head? And they fixed that? Also, if my heart stops in my home, how can he ‘deal’ with that if I have my ER experience I had today? How, when he sees me six hours later is he going to start by heart? If he can revive people after six hours of heart failure (or no breathing) I would think that either a) he is creating zombies or b) there is many, many cities which would like someone who can revive someone to normal after they are legally dead for six hours.
He suggested that I try some ‘alternative medicine’. I asked if that meant he thought my black bile was too high and my yellow bile too low, my phlem unbalanced? He said he had other people to take care of (this was irony as watching the monitoring board, we were the last to go!) and didn’t have time to talk about this.
“No 17th century alternative medicine?”
He turned away.
Odd. It was now 3:30 am and after being told that it was all in my head, holding test results saying “This person should be treated” including some that were circled with notes beside them. I had a pamplet on anxiety disorders and Linda now had the knowledge that if I stopped breathing, she could load me up, drive me there, wait 30 minutes to be admitted into the waiting room, then another couple hours to get into the ER and he would revive me, same for my heart. Yet, she did not seem comforted.
I went home, slept, got up, blew my nose, filling the Kleenex with blood, cleaned out that nostril and started another regular day. Linda and I decided, the Jubilee was faster, better and the doctors had actually heard of my disease instead of doing the ‘I’ll try to blind you with test results you haven't heard of....’ technique – wow, the ER doctor really did not like it when even when he went, “Look your kidney is fine, only the XXX is over the limits” and Linda said, “But isn’t THAT and indicator of hypothyroidism?” Linda gets a sort of ‘you are supposed to be awed and shut up’ stare before he says, “Well yes, it can be one of the main reasons.” And suddenly that was the last result from my blood tests he wanted to talk about.
So while no hope on the anemia front, I could get synthoid once the antibody tests come back in two days. So here is hoping (I’m hoping for auto-immune diseases, how sad is that?). But as for THAT ER, I rate it a 2 out of 10. For common injuries that visably bleed, it is okay. For me and others with rare diseases, the doctors and staff do not accomodate the disease or monitor them in any way (basic medicine) - which means you are in the Emergency Room of the Hospital, monitoring and trying to get help dealing with the same issues you deal with at home, WHILE you wait for them to figure out the BIG issue that brought you in that day. That ER and staff endangered my health, did not monitor any of the three things which were the highest risk to autonomic failure and then sort of blamed me with the ‘it could be conversion, it could be anxiety, the mind has a powerful affect on the body.' Gee, and so does OXYGEN, the kind that I can’t convert properly, the kind that I have lower blood cells to carry and they carry it poorly.
Does the ER thinking I HAVE MS now mean I can actually use the MS society clinic, unlike before when I was told “Money raised for MS is for patients with diagnosed MS only.”?
13 hours ago