Friday 09 November, 2007 – 02:25 by Swannie about his damage.
When I was admitted to hospital in January, all I knew about Legionnaires was that it was a respiratory infection. All I knew about MRSA was about the hospital "golden staph" infection, which apparently caused incurable lesions. When I came out of my coma four weeks or so after admission, everyone crowed about the severity of my Legionnaires infection and how I had suffered so much but still beat overwhelming odds to be still alive and on the road to recovery (even though my lungs were still shot and I was likely to spend the rest of my life on dialysis because my kidneys refused to start functioning again). After all, although I was grossly emaciated, I was still alive!
Now told me about MRSA. Except to describe some horrible symptoms that I ascribed to Legionnaires. No one told me of the real reason for the infection control procedures, permitting me to assume they were worried about Legionnaires. Even when it became clear that I had suffered major neural damage (small in appearance, but significant in effect), no one bothered to tell me about MRSA and a possible connection. My sister did tell me in passing that her fellow medical staff had told her they were worried about MRSA-B (a far worse case of MRSA with more likelihood of causing damage). In fact, the fact of my neural damage to desribed basically as hypochrondria, and I didn’t officially discover that I had contracted MRSA during my imprisonment in hospital until I later read my discharge report.
In hindsight, I really should be thankful. Even though I entered the statistics as one of the 10-20% who contracted Legionnaires and died, I had been brough back to life. Even though I had joined to 20-30% who died from MRSA (and even though my body had actually started decomposing while under life support), I had been brought back to life. Even though the hospital had subjected me to incredible pain due to lactose poisoning, I had been largely unaware of it except for some bad times with a bed pan. Finally, even though I would have suffered oxygen deprivation while in the coma, that should have turned me into a vegetable (or more of a vegetable than my acquaintances claim I have always been), at least I was aware enough to enjoy the nurses enjoying shaving me. I didn’t enjoy, though, having a posterior orifice rubbed with salve because I was inexplicably passing #2 waste products).
About six weeks after my escape, I went to my GP for a referral to a psychiatrist because I was having extreme trouble coping with my physical limitations. He took one look at my discharge report, and my physical state, and sent me to a neurologist instead, claiming that my condition could not have been caused by Legionnaires. He did not mention MRSA. The neurologist (whom I shall call "Professor") immediately diagnosed cerebral damage and arranged for an NMRI to confirm it. My second consultation with the Prof had him confirm the damage, probably associated with Legionnaires somehow, and he condemned me to 25 years of good health and incurable damage. He also didn’t mention MRSA, but did want me to have kidney and cholesterol tests (I found out later because of a worry about having another stroke to follow a minor one I had seemed to have had about 15 years earlier).
I went back about a month later, and while my kidney functions had improved, the Prof wanted me to see a kidney specialist. When I tried to make an appointment (for several months hence), I declined because the specialist wanted more upfront cash than I could find. I went to my GP instead, who agreed with me that having less than optimal kidney functioning was OK at this stage of my recovery, and that we should wait for the results of a later kidney function test closer to the date of my next appointment with the Prof (after all, the kidney functions were still improving).
Quite by accident I read a report about a notable UK food critic (Michael Winters) who had contracted MRSA while being treated for a minor infection, and had spent three months in hospital, eventually leaving with walking problems. This lead me to a Web search where I discovered that my fom of MRSA-B often lead to multiple organ failures, including a meningitis-like infection that had a 40% chance of causing neural damage. Unfortunately, BigPuddle collapsed before I could note details such as an addy LOL.
I also visited with my mother and noted that her senile dementia had worsened (I had ascribed its high speed to oxygen starvation during several hospital stays….a conclusion reached from my own judgement (I had spent a lifetime examining my mother’s quirks, so I could survive them) and the hospital staff admitting they had reduced her oxygen flow accidentally or otherwise in order to keep her quiet).
I went to the Prof full of new ideas about what caused my problems and the possibilities of alleviating the problems (I held no hope of a cure). I also had the latest kidney function results showing improvement to almost the normal range (three months ahead of when the hospital had said I should reach a lifetime maximum of 90% efficiency).
I asked the Prof why he hadn’t mentioned the possible neural damage due to MRSA. He accused me of making it up (I verified its existence later using the UK’s NHS stats, which show MRSA is endemic there), and he became very defensive and offensive. I then mentioned the chance of oxygen deficiency causing part of the problem, partly due to an accelerated metabolism due to lactose poisoning). He said neural damage was possible due to oxygen deficiency, but he would discount it in my case (remember, he hadn’t seen my records at all) and hyperbaric treatment would be of no help at all (please note that hyperbaric treatment will help almost any ailment: it is just a matter of relative cost versus improvement).
I was quite deflated over his insistence I was beyond help, and annoyed that he wanted to interfere with my continued medical treatment b my own GP of a mild cholesterol rise and virtually non-existent kidney problems. I asked him to confirm with my psychiatrist the continued use of mild sedatives to help me cope with the consequences of a permanent continuation of my condition was acceptable (after all, he had describd me as incurable, and according to MIMS, non-fatal drugs that even might be habit-forming are permitted in such circumstances), and he laughed at me and refused. At this stage I lost my cool and said a bad word to him associated with improbable sexual functions, and he threw me out.
As I was signing my Medicaire payment form (he was one of two specialists I had seen in my life who bulk-billed LOL), he told his receptionist that I could have another appointment. I was surprised he would see me since he had already seen me twice more than expected, since he had a reputation of discarding patients as soon as possible. But at least now I knew why a stroke-sufferer I knew prefered to pay $70 plus the gap to see a neurologist in another city.
Suffice it to say that the Professor can paddle his poodle in a perfume parlour, and the next time I see him will be in court. I want to know why so-called medical professionals close ranks when I mention MRSA (I can understand why Bankstown Hospital minimised my infection to the point of denial…in order to save being closed during the current hospital crisis), or refuse to treat me unless I hand over cash, or refuse to treat me at all. From the replies to my previous posts, I can understand why associated medical support is not forthcoming, or why one senior Health Department official is mystified why his attempts to pull strings on my behalf haven’t worked. And I can understand why idiots can use statistics to condemn me on the one hand, but refuse to use them to support me when appropriate.
If these posts seem weirdly long and detailed when I can only manage about one corrected word every 10 seconds, I do have a number of reasons. I need to clarify in my mind what has happened before the passage of time has diffused it. I need to practise my typing skills, since my speech won’t allow me to communicate. And I have agreed to provide other victims of MRSA with what specific information I have. I do try to be humorous. but I am sorry if on occassion I seem sarcastic, black or bitter.
Friday 09 November, 2007 – 03:37
When I visited my GP, Dr Death, after my hospital release, it was to get a referral to a pshrink so I could get medication to help me cope. At the same time, I wanted a referral to an orthopedic specialist, because I knew that the strain on my joints from trying to walk was already causing me some pain that paracetamol would not alleviate.
I had to wait until recently to see this specialist, but only after I agreed to fork over $90 in cash first (but I would be able to claim $65 from Medicare). His office was crowded, and in spite of a cancellation of the apointment before mine, I still had to wait over an hour. Because of my incontinence, I need to go to the toilet. I was told to go to the public toilet down the stairs at the nearby carpark (I do have a fear of carpark toilets, and the stairs notwithstanding, I really didn’t want to make the attempt). Luckily, a receptionist offered me a more convenient convenience!
When I saw the specialist and tried to explain my situation (basically, my premature joint pain derives from me changing my gait to avoid aggravating an inadequately treated injury I received to my foot in 1971), he was not interested. He suggested I see another specialist. In spite of the severe pain to both my knees (and the comment, repeated to him, by two orthapedic interns while I was in hospital that my knees were textbook cases that definitely had them salivating for the chance at surgical intervention), he could make no suggestions. When I asked if maybe a veterinarian my be an appropriate source of help (they shoot horses, don’t they), Dr Bones lamely offered an alternative of "….some specialising in rheumatism…"
I wasn’t really happy, but then Dr Bones (sorry, Leonard McCoy) wanted to see my foot, and expressed disbelief that the injury hadn’t been repaired properly 35 years ago. He booked me in for an MNRI scan of my big toe (at an additional unreclaimable cost of $30 up front, plus I knew I had to pay half of at least a $70 round-trip taxi fare), and a following appointment where he could give me an analysis of the scan (another upfront fee and over and hour waiting time again)?
I am am thrilled by yet more irrelevant tests. But my carer did comment that it was at least a small start. I suppose so. One hour scanning of my head, innumerable chest X-rays, and now scanning of my toe. Pretty soon, the location of the scans would converge on possible, about the time I am likely to be needing a scan of it for possible prostate surgery.
Monday 19 November, 2007 – 12:40
Some of the posts in this blog are repetitive. That is because each post reveals more information, creates more questions that have possible answers. My overriding concern has been to discover why I suffered neural damage that left me stuck in a biological prison. To date, the answer seems to be a number of factors were involved, but the overall fault was the desire of medical staff to follow the path of least resistance. Basically, that is called "incompetence".
I have already seen that the control of MRSA is badly affected by hospital staff not following hygiene procedures 100%. In the wrong environment, it is virtually impossible to not transfer MRSA from one patient to another. Just the slightest slip in hygiene procedures, and the infection will spread in spite of the best efforts to the contrary.
Medical staff are also human. They do not want to make work for themselves. Often, they don’t have the chance. In the ICU in which I spent many uncomfortable weeks, the staff rarely had time to talk about the patients, share experiences. To do so meant patients were left unmonitored. I lost about two litres of blood when a clot gave way, just at the time my nurse was in a shift meeting about patient care. If my son wasn’t visiting and hadn’t noticed a monitor warning, and I hadn’t attracted the attention of supervisors who were going off-shift, I would have bleed to death.
In another example, the nephrologist said my kidneys were failing to respond, and I looked like facing a lifetime of dialysis. Another doctor found I was badly dehydrated and ordered extra fluid, but the nephrologist was never told. I was not supposed to take water by mouth, but conned an aide into providing it (and subsequent medical staff assumed a doctor had given permission). The nurses themselves only provided a standard amount of fluid per shift (this was easier to monitor), delivered intravenously. By the time the extra canula was in place to give me more water, I had already started drinking three litres a day and my kidney function was fast approaching normal.
There must be good luck mixed with the bad. While I spent several fateful days hoping that the oral intake of water would save me, my dehydration virtually disappeared (and no one except me knew why). The canula for water was not used until much later, but did prove handy after my blood loss when I needed several bags of packed cells to overcome the effects of the blood I had lost.
What Caused the Damage?
After talking with my carer recently, and explaining a number of events, it seems my neural damage had several possible causes, acting alone or together. I was the victim of lactose poisoning, and no one considered that, and therefore did not consider that the pain and fever and dehydration I suffered could have been partly caused by that (basically because my metabolism accelerated in order to rid my body of toxins). The invasive procedures used to bring me back to life after I died from Legionnaires allowed too many opportunities for me to be infected with MRSA, and the lactose poisoning probably masked the early symptoms.
The extreme bloating I suffered at the height of the MRSA infection was thought to be due to a massive retention of water. No one considered that was unlikely, even though my limited liquid supply, and high fever from metabolic speedup, meant I was using water faster than I was receiving it. In hindsight, my bloating was due to a gas buildup caused by the decays found in the near dead (or dead). I definitely did have enough necrotic tissue for this to be fairly obvious. Lack of fluid can cause hallucinations (and boy, did I have those), and neural damage.
The MRSA would have mimicked menigitis, which in about 40% of cases also results in neural damage. Finally, no one seemed to really understand that a natural coma can be caused by acute hypoxia (lack of oxygen), a consequence all ill patients in hospital risk. Unfortunately, there is inevitably some neural damage, more severe according to the length and depth of the coma. When I say that 40% of cases result in neural damage, I mean thast 40% of cases have absolute neural damage, not 40% damage spread over all cases. OK?
Basically I was the victim of a comedy of errors, with a lack of communication and adherence to the easiest-to-enforce protocols resulting in neural damage. In fact, it was probably because I suffered several kinds of neural damage, no one symptom in itself particularly noticeable, that I caused much confusion.
The major damage was to my habitual motor control. I simply forgot how to do basic things (like walk and talk) without conscious control of what I was doing. Of course, all the motor function tests required conscious control, and I had that in a sufficiency as long as I stayed in bed (and didn’t try to talk, according to the Gibbon). My sensory damage wasn’t obvious, but I have lost part of my vision an a huge hunk of my hearing (mainly in the higher registers). I have interesting holes in my memory (some disguised because people thought I was conscious when I was still comatose: those apparent memory lapses were not). I have problems with touch. And finally, I have to consciously control breathing and swallowing.
In all, it is probably more accurate to say I suffered several different kinds of neural damage, each with its own consequences, and each from possibly different causes. The overall effect is that I am badly crippled (I know most people don’t like that term, but I suggest they just accept it and all its negative connotations, and suck it in). I generally hide it well. I mean, only I really know how much time and effort this typing takes, and what tasks have to slip for me to finish, but if you look at the errors I miss correcting, you might see a pattern to them that is inexplicable in a skilled writer and editor.
I am glad that some people appreciate what I am conveying, but I am really doing this for me. I am so driven to find out what happened, and why, and why the hell can’t get help, that I have to pursue this thing to the bitter end. That is not a cliché. I spent enough time prepared for death or hoping to die, that I am excepting an unpleasant conclusion. I don’t care. I will not go down without a fight, and I will take at least some of the guilty with me.
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