tearonthefire: (Taarna)
[personal profile] tearonthefire
On the Thursday before persistence Thursday, so the day before schmuck Friday, I began to feel a strange sensation in my chest and an intermediate sensation of my heart beating in my throat, which also corresponded with a swelling of my throat. I still can't really describe what my chest continues to feel like. I've been describing it as a negative pressure, as if my lungs were being sucked to collapse but this description doesn't seem entirely accurate.

I think this was probably why I felt as if Friday was still Thursday. The sensations began the Thursday, interrupted my sleep through that night and Friday morning, and continued without much respite through the day. It wasn't painful, nor was it particularly bothersome but it was strange, and it was something that I'd never felt before. By about ten o'clock I decided that I wanted to know what was going on and headed to my local municipal hospital. This was my first error in this adventure, I should've just called my GP to get an appointment to set up some tests on my own volition but I didn't.

I arrived shortly before eleven and explained my condition to the triage nurse as best as I could. My temperature, blood pressure, and heart rate were taken and I listed my medications and allergies. I'd decided before leaving for the hospital that if it was overly crowded I'd forget about it and go home, the hospital was empty when I entered except for one other person so I stayed. By noon I was fidgety, by one I was annoyed, two o'clock a movie came on the TV that distract me, by three'ish the waiting room had swelled to more than ten plus with their moral support along for the ride, at four the movie proved to be much more moronic than I had previously thought, four thirty-ish I was escorted to an exam room, five fifteen I was given a Ventolin dose, an EKG, blood was drawn, and I was sent to x-ray. Despite stating my allergy to adhesives, my blood drawing hole was tapped up with the standard tape, I began to itch. At five thirty I was suddenly moved to a 'quiet room' on the other side of the ER.

To recap; between the hours of eleven to five thirty-ish, I was a low priority nuisance who was sitting quietly wherever they told me to. So that's over five hours where no-one was paying any attention to me. Between five thirty and six I saw the ER attending about as much as the guy in observation who was on the verge of crashing, I could hear his monitors going in and out of primary alarm.

The prognosis; 'you may have had a mild heart attack'. Yippy, I'm so lucky. The second or third idiocy of the day was that while the attending ordered my triponin levels she did not order CK levels. I ask why but received no answer. My meds list and allergies were again given. At this point I also began anticipating her questions and answered her before she even asked them, this lead to her repeatedly asking me if I had any medical training. Of course I didn't, I'm an obsessive compulsive, crippled, high function autistic with the internet. This completely changed the dynamic of the situation, before I was just a patient with a heart problem, now I was a patient with a heart problem who wanted very specific and pertinent information. In short, a problem and the fight between the medical staff and myself started, and I do think I can call it a fight no matter how passive aggressive it was.

My request for a CK was order along with a few others and I was placed on a heart monitor. While on the monitor I saw, as I felt, a premature ventricular contraction. About one to two a minute. When the doctor came back I pointed it out to her. At first she was unconcerned until I told her that I could feel them. PVCs are perfectly normal for anyone to have, for the most part they're described as 'skipping a beat' but actually feeling them and having about thirty in a short conversation, is not normal.

At this point I decided that I wanted to be treated as an out-patient and not to be admitted to the hospital. From what I gathered during my previous discussions with my attending, my risk level was rather low and whatever had happened, 'had' happened and would either need long term-ish treatment or wouldn't repeat with anything close to predictability. My desire suddenly changed my risk factors and the fear tactics perpetrated by the attending ramped up, to went from 'you shouldn't be too concerned' to 'you might have a seizure and die, which would be very painful'. It also went from 'you'll probably be fine' to 'you could die in a very painful way'. The frequent references to pain were made because I asked, in a joking way, if v fib would be painful.

She never outright refused to answer my questions but censored them in a way to imply the worst case scenarios and avoided giving me the actual numeric values of my tests, an example of this is; that my CK level was between 215 and 220, which means it was barely above upper normal, at least by Ontario's standards.

As I was being pretty badly emotionally beaten up by this woman I eventually caved but with the stipulation that I go home to pick up my laptop and some cloths. This was immediately accepted by the attending and I speed walked home to gather my precious insanity inhibitor. When I got back to the hospital I was in tachycardia, something that I've been complaining about since I was a teen. The tachycardia persisted for hours, from about six to about ten or so. More blood test were taken but I wasn't scheduled for any diagnostic test because in this rural area even the hospital is closed on the weekends. I'm not kidding, they had to take the blood tests early because the lab would be closed during the night. This is how bad it is.

I again gave my meds list and allergies before being transferred to the in-patient wing. In preparation to make the cardiac patient comfortable, they took away all my meds except for stomach meds and stuck me in a room with an old woman who thought she was entitled to everything. She also had her TV tuned to CTV Moncton at a volume which could be heard from the Europe.

Now that I was settled in my room with a gloom, I was asked for my meds list and allergies. Once that and some other questions were answered I asked for a DNR, this lead to a ten minute discussion as to why a person my age would not want to be resuscitated. The long answer is that I do want some life giving measures taken but I do not want to have my ribs broken with excessive chest compressions nor do I want my body pumped full of volatile drugs. The short answer is that DNR's are not all that customizable and it's just easier to say 'just let me die in peace you life worshipping pushers'. Again while I was never refused my right to a DNR, the paperwork never appeared.

Let's recap again, just cause I want to. I went from endlessly waiting as priority three or four to being hovered over at priority two. The ER attending went from 'don't be too worried' to 'you may die a painful death'. My test results went from 'of some concern' to 'you absolutely need to be monitored, you could die'. It's funny how the same results can be explained in two extremely different ways with the only difference being how the patient wants to be treated.

Now that the obsessive compulsive had her laptop, I began reading up on my new and exciting condition. From six to eight, I learned more by reading articles and testimonials then I ever did from the staff. As my knowledge of the probable facts of my condition increased, I say probably because medicine is mostly hit and miss, the staff began to be unable to answer my questions. A breakdown of communication began to occur between myself and the staff as I began to ask every increasingly sophisticated questions. The inability of the staff to answer in what my opinion was simple questions, eroded my confidence in their abilities. My requests for further testing was not outright refused but were deflected. I was admitted at this point and they might have assumed that I would now stay as I seemed to be committed to a course of action.

They would never have guessed that a reasonably polite, well read, thirty two year old would much rather suffer and possibly die then be manipulated. Though my research I quickly discovered that the attending censored some of the possible causes of my condition. Two of the possible reasons for PVCs are; exhaustion and anxiety, and I experience those in spades. She also censored the fact that while my triponin levels were elevated the lack of significantly elevated CK levels and the lack of other heart attack markers meant that whatever happened had long since passed. Statistically speaking, I was at a higher risk of 'something' but I was not at a greatly higher risk of a heart attack in the immediate future.

Other test results were also counter indicative of elevated risk factors, in all the categories. Despite the persistent tachycardia it was slowly decreasing, this would indicate that my heart was not under persistent stress. The elevated CK was also easily explained by my fibromyalgia and increased activity in the previous days. On top of that my EKG lines were normative, while not excluding a resent cardiac event and not completely excluding a future one, it did indicate a low probability of an event occurring in the near future. I wasn't told any of this by the staff, I had to research it all on my own. I got the distinct impression that if I had not been so persistent in my questioning I wouldn't have gotten any of the information that I did.

I have discussed this situation with others and the predominate opinion is that the ER attending was only concerned with my health. Will I agree that this was the case but it was unethical for her to bully me into the treatment plan she wanted. By law and by the ethical standards doctors are supposed to operate by, it's the patient who decides what their medical treatment will consist of. A doctor cannot legally or ethically override a patient's wishes by any means without first showing that their decision making processes are impaired. Stating or restating the risk factor involved are perfectly reasonable things to do, even indicating a worst case scenario could be argued as reasonable. But when a patient, namely me, clearly states their intentions for medical treatment several times, this has crossed the line from simple concern to unethical manipulation.

But the last straw happened shortly after I awoke from my nap at two am. I called the nurse to complain of chest congestion and ask for Ventolin. I was offered O2, when I asked what my O2 states were she told me that they were one hundred percent. This wasn't the last straw but was definitely a 'you are an idiot moment'. She told me that Ventolin was not on my meds list and I gave up on any argument as I was feeling pretty defeated by the place. I then asked for my stats, which by the way were not being observed by my nurse fifteen meters away but by the ER staff on a different level and on the other side of the building. I was told that they were fine for the last ten minutes.

Now comes the last straw. I couldn't sleep and I was pissed, I need to take a walk, which I was told not to do, I did anyways. I discovered that during my nap I had pulled off two of the three heart monitor lines, one of the diaphragm lines, and the second diaphragm line was flipped upside down. I had only one EKG line attached.

Excuse me but I must profanely and loudly express the sentiment I thought at that moment. WHO THE FUCK'S GOD DAMN EKG LINES WERE THESE FUCKING HALFWITS MONITORING. That was it, I had enough and I melted down. As my atomic anger burned it's way through my head, setting off some PVCs and some low range tachycardia in my chest, it made it's way into my extremities. I went for a walk to try to calm down. I sat staring out a window and weighed the options of my predicament. If I stayed, I would have gotten all my tests within a week, or at least most of the test, but also if I stayed I would continue to melt down until I went into an anger thermal shock. The incompetence of the nurses and the manipulation by the doctor, and the threats of discontinuing treatment if I left, all churned and surged in my head. I only ask one thing of anyone whom I trust to do anything for me or to me, be more knowledgeable about it then I. And it's not hard to do that, I'm an idiot, you must be more capable than an idiot. These people failed, and they broke the most important tenant of modern medicine, informed consent. I did not have fully informed consent.

It took only a matter of minutes for me to make up my mind, I'd rather suffer and die then deal with these people another microsecond. I asked to speak to a doctor and was denied. I told them I was leaving, their threats of discontinued service came back. I made it clear that I didn't care. Now the doctor was called and more negotiation was attempted but I had, had enough and was fully committed to possibly dieing in excruciating pain in my own goddamn bed. I was enraged, a controlled little nuclear event spewing the radiation of absolute annoyance. The nurse followed me like a complete idiot, wanting me to sign a document stating my refusal of treatment, far more important than my right to a DNR. I signed it and left.

Since then I have retaken control of my medical treatment but I'm also being punished for my decision to do so. If you don't think making decisions on your own about your health lead to punishment, I invite you to try it. The medical community is a hierarchy and is elitist. They, doctors especially, believe they are the gatekeepers or worst masters of health but they get it wrong far to often to deserve such reverence. Everything from taking ten years to diagnose lyme disease because they refuse to believe it's as prevalent as it is and refusing to see those who seek third party treatment for it, to misdiagnosing cancer in a child who has an autoimmune disease instead. The medical community subjects patients to humiliating tests and procedures while making them wait hours in a state of undress for those tests. They make the critically and terminally sick suffer unduly because of a perverse life worship.

It makes me physically ill to think of what they have put myself and others through, just because they didn't like the prognosis or simply refuse to accept the data on some condition. I have nothing good to say about the medical community as a whole.

My current condition is exactly as I had suspected and predicted it to be. I'm somewhat fragile in that I can easily cause myself PVCs and likely tachycardia but if I'm careful, I can control my symptoms without the need for medication. If I'm very careful in the planing of my day I can lead as normal of a life as I did before all this happened, without being unduly bothered by chest problems. At this point I've controlled my health successfully enough that I only occasionally feel unplanned or random discomfort and I simply deal with the discomfort I know will be associated with activity. I still want to gain further knowledge of what's going on and I will happily wait for my deprioritize test dates to discover more.

I am the master of my own body and no one will force me to capitulate to their will, I will happily suffer in agony and die in abject horror before I forfeit my own sovereignty.

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tearonthefire

February 2014

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