Urology: You don't know til you try!
You do not know until you try
11th July 2011, saw a Mr. Basu. I was pleased to actually see the specialist himself because in a lot of clinics you might as well throw dice or take bets as to whether you will see the named person, some registrar or other; or merely a bloke they met down the pub last night who showed them some internet qualification and bought them a dozen pints pleading to see what the inside of a clinic looks like; or that's how it feels anyway. Even with the flippance and joking aside. My Dad, who has been through lots of similar things for long enough declared a theory to me which could hold some truth. That foriegn doctors don't care about white English patients! I don't think he's in EDL/similar and I know he doesn'tvote for Nazis -no, not Lib Dem!- I do feel that his waiting two years to get a scan with a non-english doctor was excessive neglect. When the English doctor only took about two weeks!
It does seem to me, from my own experience that as a dialysis patient a lot of these so called 'educated people' put me and those in the same boat as though it were some scrap heap. That it would be a waste of their time and budget to do anything other than fob me or us off with excuses as to why there "is no point bothering" with me. But wait a minute. Look at it this way, if some-one is getting paid lots of money to say to people "No," you're not worth bothering with. Then what are they getting paid for? And who is actually a burden on the NHS? It can't be me, the patient if the doctor is refusing to treat my condition. Although from the media and even some doctors and nurses, even on the street though mostly taxi drivers and other types who look like they would've done better to have taken a lot more of whatever it was they had at the weekend and perhaps done the respectable citezen/s much good by over dosing past a reversible extent -Ah, but wait. No! They would actually get treatment. But I being of the type as to realising any mis-use of myself as to have being able to reverse it or put a stop to it, that I surely would've done so; get "No, it's pointless treating you.
This doctor Basu, started with "Do you want my medical opinion", and at my very hesitant nod, which has become opposite now of enthusiastic and was done as much out of curiosity as anything. "You will be stuck with dialysis -removing the stones won't change this", he was adamant. It later came to "Do you know why you were put on dialysis in the first place it was because you had stopped passing/producing urine". This he was ushering as though certain, as though he had been there. But he is completely wrong! Completely and utterly wrong!!! I pointed it out, until I was shot down by his looking down and away annd saying "I think you need to have a word with your renal specialist,
When diagnosed with reflux disease; #SOME# urine was going the wrong way causing scaring #some; A word they neglected to say affecting their treatment of me# I was, howevwer passing near enough normal amounts. Looking back though I'm dubious about the diuretics; bumetanisde because they take away too much causing dehydration causing drinking! They also take the wrong kind of water "Plasma" which is from the blood. Looking back, I believe, feel, realise I could've done without these -And the quack who prescribed them (A transplant doctor: Warning, find out who these are, and if you don't want one tell them, even avoid them thereafter!). I suspect more likely some-one wrote it wrong, or didn't take much notice in class or wanted more control over "my" "care"!...
...I was furious at his suggestion that he believes I don't know whether I was passing enough water. I know the difference better than that p*** taker! -If he thinks his qualifications are worth anything after suggesting that!- I feel myself very close, even beyond offended! Muchis the arrogance commonly among such people that they seem to think no matter how stupid they are patient iseven dumber. It seems they believe this, then assume they're right. And no doubt look for things to prove themselves right in their own minds! One doctor seemed endeared by the fact I'd spelt a word wrong, put a simple wiggly line under it then put the lay term. It seemed endearing to her, besides it expressed that I was/am learning the lingo, codes! ...
...He went on with his disclaimer "I'm not your renal specialist, my field is kidney stones."
This seems to indicate that I, in his warped mind, seems to think I'm so stupid that I don't even know who he is! When in the first place he used his power to indicate the discussion he was now backing out of was OK to bring up because he brought it up himself! He would've shown a great deal more wisdom by asking how I stopped passing 'water', instead f trying to tell me -And when I only just met him too!!! (Is he some sort of lunatic? Should I have looked in the cupboards for the real "Mr. Basu"?)
"Yeh," was all I said leaving a lot unsaid as I don't think he would've been able to hear it. But, what was he trying to imply? That Dr. Garthwaite knows more about whether I could pass water than I myself? Perhaps he even thinks she held it for me at the time! (Like the nurse in ICU when she thought I was out of it, but that's another incident. Of so many in these damn places!) Well, I can tell him she wasn't even there (both subject and other incident!) She wasn't even my main doctor at the time! Not that any-one seemed to ask -except the dialot nurse that would take chunks of liquid out of me in the coming months while I was at St. James'
until my kidney function, delicate state asit was before the attacks finally rolled over and waved the white flag!
But no I wasn't put on dialysis due to losing urine function and it would have been fine had they just kept filtering the poisons -they don't have to remove weight to do this. They're obsessed with taking weight off just because they can.
Basu, didn't seem to comprehend or was unable to admit that a patient can know what is going on, or at the very least work it out after. Or a so called 'educated person's ' arrogance and snobbishness dictate to him that there's no other way to get knoowledge than water balloon fights and wild parties! Neither did he bother to look up at the correction to the word with my specialist "I have done. It's probably why I'm here." -I wish though she would stop sending me to see silly pillocks hell bent on trying to dissuade me from any positive thoughts regarding making things even "a little" better -(You may note that this was put in a letter as a reason refusing my escape from Halifax-the renal departments answer to Colditz. I later got to point out respectfully, yes. I somehow managed! that for every ounce for me, there was a ton against)
I've got to say I find it very suspicious that an educated man would not want to explore the possibility that potentially presents itself in my case. It smacks largely of his covering backs. He made a point of saying I'd got this because of dialysis. -due to my condition. And he seemed full of pre-concieved ideas about this. (AKA. Prejudice!!!) He came out with a lot of theory that my kidneys aren't functioning -you try functioning with bloody great boulders in your way! And all sorts of things that cannot be known until they are tried about it being pointless to try. Yet the next doctor I come across might be full of your still young, you've got to keep trying. You tell me the point of keeping going when no-one gives a damn about whatstate your in! Nor is bothered about trying to fix it. Only bothered about such things as "why didn't any-one else spot it?", "What will people say if after alll this time suddenly things start working again.", ...
Well, for starters I'd sooner congratulate the rescuer than waste any time at all on persecutors. I live within my means, have never bothered about frivolous things like holidays etc. Nor would I know what to do with excessive amounts of money. I would however consider litigation on the basis of neglect at not bothering than any thought of genuinely missing what may've been beginning to form since the early days. Neglectfulness deserves litigating against even if the dss would grab what they can of it. Simply because it seems so easy for doctors getting paid large amounts whether they bother to do anything or pay lip service to doing something or even do nothing at all.
Basu's arguments for being idle. That the operation/s required would be dangerous.
My answer: So you're trying to tell me that dialysis is safe. Don't you know that people die on dialysis, or as a result of it wearing them out over the years. Is any proceedure more difficult to face than the marathon of slow death? And why was he trying to scare me off it this way? I'm not blessed with size and strength yet he would take away a way for a person's psyche to say "I might not be Frank Bruno -or whoever but would they feel so able to go through something like this? Though I don't /didn't necessarily think in these terms it provides food for thought. Seen another way. Who is more likely to look brave? The man who sees some-one drowning on his way home to meet his beautiful wife and loving family. Or the one whose been thrown out christmas eve because his estranged wife wants to try to make the milkman become their childrens new dad? Who jumps into that torrent of a river with the least hesitation, or should I say who has the least to lose if he drowns? I have first hand experience of this in growing up lifeoutside certain lessons was not good; but for one indoor soccer was enjoyable. I became a good goalkeeper very quickly, partly due to an ability to estimate angles well despite astigmatism and being no good at maths, but particularly an un-conscious willingness to make hard dives -even at feet on a fair playing field. I learned young that the less you have to lose the braver you can become.
Having said all that the doctors wouldn't do the ops etc. for any-one if it was considered that much a risk. So I think he was exagerating to hide his true fears. This shows me I wore my heart on my sleeve again in being open and honest about hopes and dreams of requiring less dialot. It must have got back somehow, or why would he start his speech without even asking me?
He then proceeded to not take much notice about the fact I am in pain. And went off on a tangent having brought both subjects up in the same breath. When I pointed out I was in pain, which I had mentioned earlier. He didn't seem interested. So I was unable to explore it or learn of any significance. Annoyingly it's all too easy to blame dialysis and use this as a white-wash word. I mentioned a similar point to Jane on the ward, it came up when he said "they'll always take a little bit off when you come in overloaded" I pointed out here if the patient is passing normal amounts there's no need. It seems to be only done because they can, and have some kind of need to be over controlling. In mycase the nurses that took a lot off needlessly because I was passing my own normal amounts etc. Did so to try to manipulate me to have a transplant. Frankly as this shows they need to manipulate, the pressure being the waiting lists andcost v. income etc. then it can't be worth having -I have looked into it and is not for me. So much so that I have started the ball rolling for Palliative care because if I'm really on the scrap heap then there is no point in going on having to dialyse so much is too wearing! Not much of a life, either way, young or old!
Back to Jane "People still lose function eventually when they can pass water"
Is water taken off by the machine as well at all?
I concluded "That's what's doing it!" -certainly faster than removing toxins alone will. But would also suggest looking at the causticness of dialysate fluid. And look around to see if there's a natural 'body oils' alternative. For comparison look at how sillicone implants have been stopped in favour of natural oils. The parallel is when the implant leaked -yet dialysis patients have to put up with this "leakage" on a daily basis due to the exposure through the blood.
His: "There'll be no benefit"
It might make me pass a bit more urine, I sheepishly replied.
"It won't!!" he announced. Going onto basically imply 'nothing of significance' or something.
The cheeky b~*!!*d! Why am I being dragged down to the science alone? Although, even there I suggest every little helps. (Ask, the multimillionaires that own Tesco!!!!)
I was talking about the thing that I mentioned thatgot me the CT scan, for when this arrogant cretin blindly announced "No value/benefit to proceeding", I said 'there would be psychological benefits'. He seemed to want to argue that point. I was ready with ~"What, the bloody hell makes you think you know? You don't have to go through any of it!"
And doesn't the man standing at the river bank throw a twig in to the person being swept away, even if it will keep him afloat for a few moments while something else is found!
And therefore, so what if checks have to be re-done down the line for more stones. One drop is better out than in! He will thank his lucky stars if he never has to know this first hand!
Another thing he said as part of his medical old wives tale, was "the stones are the effect rather than the cause". This was before it came out that his basis to the reason I was put on dialysis was/is completely wrong. I pointed out that "An effect of one thing can be the cause of something else,." he seemed baffled for a moment but it has existed as a term at least in Rugby for many years; or in part. It's called A "knock on" effect. -or side effects: In medicine!!!
Having written all that which covers most of it. There appears to linger an awful thought in the air that the implication about "You were put on dialysis because you were unable to produce urine."
I was put on dialysis because my creatinine output/blood test was 1100+ and I was passing too much protien -this in absence of any proper discussion may be why stones have built up since they stopped this at St. James' by taking massive/any chunks of weight out of me. Constantly going for the maximum allowed 4 l./kg.
I feel the need for a white paper or something to be published as nurses particularly seem confused as to the difference. Val. The nurse at St. James' commented that I had good clearances in my urine test/s. Yet proceeded to bring my weight down. Continuing even after the initial reason to get me off the 100mg of Cozaar/losartan potassium had been successfull. -something I now would refuse! -until at least it got to the very maximum stage. I hope one day the medical profession learns to leave this meddling with a person's weight alone. I have more to say about this later; under plasma.
Though Bazoo said there was no point as I wasn't passing my own enough...
Earlier on the doctor mentioned that "if there's a blockage higher up, there's nothing he can do". As a long shot may I suggest trying the external vibration treatment that may be wider reaching before going in with the laser. Because something was said years ago by a Psychic I once saw, and he said he could see a blockage!"
I then want to proceed with the lazers and machine that take away the debris. Because to not try is to not bother, this is neglect and won't do.
Also I wish to point out that it has been written between doctors that I 'have a mis-understanding of "water weight ..."
This I refute. Having spent a lot of time studying it. Not only reading up on various sources, but living the effectsof treatments for a longer period of time than any university course woud run. (nor have I messed about with balloon fights, and wilde parties tend to be a thing of the past with this condition)
My verdict is the condition I now suffer was not helped in the first place by the idiot who prescribed bumetanide, nor any diuretic. Having been rushed through clinic not given the chance to produce the usual urine sample. Then told that my weight was up. And so blindly trusting at that point in time that I took it without much question. -or chance to ask why i was rushed through. I gave my sample after though they wasn't interested in my weight by then.
I didn't understand the significance so I didn't mind much but soon enough I was passing more than normal amounts!
For a time until this came down, and I got an electrolite imbalance. Or/and it became worse. I recently read in a health and fitnss magazine that these pills take a lot of plasma out of a person. I feel this is unhelpful and was done unnecessarily to aide the manipulation and cause pressure to transpl.
I am sickened and disgusted not just about that but that the way the pills work was not described to me. That the importance of plasma, how the body produces it, at what speed to amount ratio, and whether certain conditions inhibit, prevent or improve this. And is there a way to find out how much has been taken from me?
Also dialysisUltrafiltration: "piss taking!" the method for removing a person's weight from them mechanically -unnaturally. "An intrusion!", ~"a vile inhibitor of natural health". Why is this done? It is claimed by the nurses who do it -yet don't have to suffer it themselves- that they can tell a persons water weight from their body weight. Val: the 'nurse' that was the main culprit in taking 4kg. off even though I'd come in at my pre-dialysis natural weight or even under it! nipped the back of my hand andclaimed to know. It was the same at 66kgas it had been at 73.8kg. I have since seen oedema in old ladies, the ankles swell out of sight. That is the only test and what is more the body can take a fair old amount -more than what it is being given credit for. -esp.in young people. The old ladies at Bfd. looked like they'd let leg walmers slip down to around their ankles.
Another gripe I have; is that dialysis patients legs go. Thinner at first, like super models. But then weaker as well, and many need wheelchairs because of it. All the things that remove plasma water are implicated here.
I forgot to mention my resentment of the doctor that didn't make it clear that Senna is for occcassional use only. By the time my GP. told me, a lot of body weight was lost and the electrolite imbalance was in full swing!
And as far as peoples, docors even "misters" "medical opinions" go. I hope I don't have to sit through another 'mothers union' meeting with old superstitious fish wives tales about storms at sea and so on. Perhaps you refute my comparison? I say to you thatuntil there is a cure, or at the very least preventions known for such things then it is as much use to ask the women of the mothers union as a doctor as to what is best. And by cure or prevention I certainly do not mean the treatments designed merely to make somebody rich/er at the expense of the suffering.
I now wonder if the man was simply trying to avoid my getting my hopes too high to avoid dissappointment. But had this been the case he would not have owned the medical opinion. I think my argument though which came when he was driving home the point that it was against his medical opinion to operate, -or co-operate... I was getting cross at this point and felt I had to start tearing at the wall he was putting up. "I don't care who you are," I said getting slightly angry "or how many qualifications you've got." And here comes the new motto, though I must haveheard it somewhere as a child and consciously forgotten but "You don't know 'til you try!!"
that seems to have been the turning point. I feel I should not have had to point this out. And ponder for a moment that if I, a mere lay person had to tell him this, his qualifications might be lacking some teaching! I don't like having to argue to get my point across. Not even iif I have as many right answers as Solomon! Take the example of a striker in football. A striker is considered more valuable if he chases lost causes. The more he gets from them of course the better 'he' isconsidered still. It may be a lost cause but I have to chase it. And whilee doing so there is that little bit more glimmer of hope. And after there is the knowing that I tried. That medical profession is not totally hell bent on keeping me on D. asmuch as possible to wear me out as quick as possible which is another way of keeping the numbers waiting for Dialysis down.
The argument, while we are arguing -again! About "You're still young..." would be given more weight if people in the same bloody profession albeit slightly different areas wouldrefrain from basically saying 'no, you're not having this, or no we don't do that (anymore)'. gives the impression you're not worth bothering with. As happened with the wrist fistula being just thrown away, and the first line being thrown out almost as soon as it was put in. I perhaps should've stood against this more strongly but I'm not exactly in the best of health and some doctors can argue the hind legs of a donkey. I don't to be in the position where my inside looks like a jigsaw puzzle and is worn out to the point where the effect is a person is just existing for the purposes that his family can send cards at Christmas and so doctors and nurses can say 'oh, what a wonderful fistula -who did it? ... Oh, yes. Isn't he good!"
"Pff!" if he was, he'd want to preserve, save his work. Make sure it works with are; instead the doctor isn't, the vein is, the arm anybody but the surgeon! I no longer believe "You've got a good vein there". Because -
"Yes, it will stay good too because you lot are leaving it (the ...) alone!!!" I had too good arms before that lot started on me, once the line option goes; if they won't fix the wrist -which I feel will require reversing the elbow properly first in order to work to the best possible outcome now available -even to be better than the line option. But of coourse, this is instinct and doctors neither understand or rate such things. And so, we're back to the motto "You don't know until you try!"
Plasma: Removing weight through water of the blood.
I look around at all the units I've been at, and I wonder why this practice has gone on so long. Peoples leg mass vanishing to the point they aren't strong enough to carry their owner. People who once controlled their own weight being 'force fed' like 'battery hens' and being told what they have to have removed; and worse this is often at the whim of a nurse. A lot of the time there is no evidence of even a machine -though I deeply and sincerely believe the logorythms to be highly flawed! A machine cannot possible discern plaska water from waste water -(nor washing up water for that matter! -thanks for the coffee machine!)- And by the fact nothing is mentioned of such things as "fat" and "muscle" these clearly cannot come under the other terms and seem squashed into the "body" weight. Which must also include the size, mass etc. of the heart, brain, liver, kidneys and everything else. With these two all purpose terms it seems no wonder that something is forgotten, carteliege, bone mass. -too much to list. But the fluid in the head that supports the brain comes also under the term "water"!
It seems the legs are initially hit because the body as a heirarchy. Like when one loses heat, the heart among other functions is protected. But this too can be depleted...
Though as things stand I need to know more on this subject. I have nonetheless managed to observethe following. Meantime, my questions are. How is plasma replenished: How long exactly does the process take in healthy people, does the body havee to sacrifice anything or use things such as electrolites and/or food stuffs to make it. Is there a "fallout" like toxins produced with it that have to be dealt with.
Why is it not made clear to a pre dialysis patient that they have the right to refuse either 'water' removal or for that mattter removal of toxins or both. This would've been ideal in that pre d. workshop I was put through. A good place to explore each with it's consequences. Plus "pre-transplant" workshop should not have been thrown in as some-one monopolised the time with it.
People too tired to walk: Breathlessness is D. Speed of flow. We need to sit down after we've ran too far, this is the heart beating at a faster than normal rate for a prolonged time that we're not used to.
Furthermore: We only have a certain numberof heartbeats in life before it wears out. The nursing obsession with pump everything up="better dialysis" is flawed becausebetter d. like with high flux tends to mean worse health!
Weakness of leg is due to removal of plasma water! (too much thereof). Though amazing it may be what the human body can stand, it's reserves are not endless.
dryness causes dehydration, though the way nurses and 'specialists' seem to try to explain it you'd be fooled into thinking it was some kind of good thing. Honestly, they wan'na try it! They can just walk across a large desert with only one small water canteen and little else! If the desert is big enough they will soon see what it is like as was described by "jaws" as not only being brought to the dry level but being taken under so that even drink won't be suffice to wet that which is made up of mostly water!
Even stone is formed from water. And if one of the hardest compounds known and used by mankind requires water as an essential ingredient I'm damn sure beings made up of ninety odd percent of it need what they have of it and should not be mechanically interfered with!
I do not think that people need to look much further for reasons why people die on d. Dehydration is certainly a killer, no matter what causes it or where you happen to be at the time, though access to water may slow this process down as mentioned the body's amazing ability to adapt which unfortunately for d. patients isn't boundless may disguise the realities of trauma being experienced, suffered. Other reasons being mainly removal of plasma "water", besides causticity of "juice" aka. dialysate fluid. Besides speed of flow, and persisted fistula formations where heart conditions are EFFECTED.
And where people have lost their marbles, theyclearly have less fight against the arrogances of "oh, you get the best care" resulting in the ignorances of the medical profession. Perhaps less ability to articulate instincts or counter the medical opinion that "doctor knows best" which often proves to mean doctor doesn't know anything but if we let on about this there'd be a confidence crisis among the workers that the profession might not survive -more rubbish. If you don't know say so because this will increase the trust that the other person has for you! -or start to build it. /again... But that's another story.
Suffice to say that if I do get what were once simple wishes, and are still appropriate wishes met. I won't now be paying as much time to saying thank you as I might once have done. Oh, of course I will say it as manners and ettiquette dictate. But I am unlikely to send in the flowers, chocolates and cards where I feel the help is reluctant, and I've had to fight tooth andnail for every square inch. So I certainly at this point in time genuinely feel that I would ever consider in putting such people on the radio and interviewing them as "wonderful people" though I've never argued that they do a good job -indeed it looks like a right cushy number!!!
Not wishing to end on a negative. I applaud the X-ray department for seeing me, even though the transport came for me in the wrong month. Andparticularly Huddersfield X-ray for finding what both HX and Bfd. failed / refused to spot -perhaps for the same reason as Mr. Basu didn't, doesn't want to bother wasting his precious funding -err, time on a scrap heap patient. Where only a little relief might be the outcome. The chocolates and flowers are set to go to TheHuddersfield Royal X-ray department. Certainly if the outcome defies current medical fish wifery!
D. or d. = dialysis
dialot = dialysis.
(do i really need to say it!!)
Every lay book or blog article I could get my hands on, including exercise and fitness and survival guides. & programmes etc.
experience, living it and seing it being commonly lived; as this is where the "trying" or trial comes in re. "You can't know if you don't try!"