Spinal situation dire, now complicated by end-stage renal failure and dialysis.Need help! — Scope | Disability forum
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Spinal situation dire, now complicated by end-stage renal failure and dialysis.Need help!

Fatbloke_Dim
Fatbloke_Dim Community member Posts: 11 Listener
My wife , bless her , has had on-going spinal issues for some years. Degenerative disc disease, spinal stenosis, from various causes including the prolapsing of discs, and narrowing of lateral recesses , etc., etc. This has hospitalised her several times in recent years. She is currently in hospital again, as she now has to deal with end-stage renal failre due to M.P.A. vasculitis , which has totalled her kidneys, robbed her of feeling from the knees downward and other areas of her body,bestowed partial deafness and brittle bones from the high steroid doses used to get the disease under some semblance of control , along with immuno-suppression via chemo with Cyclophosphamide.

She is now fully immobile, she could just about walk to the bathroom with support back in October,but now that's gone, and she can not even get off the bed to a commode. And she has constant pain , which she scores at 8 at rest, 10 on movement , and I know her pain threshold to be very, shall we say "robust". The added complication now, is that she needs dialysis 3x weekly ,which as she is in the Manchester Royal renal ward is a short bed-push to the room next door. The reason she's still there-8 of the last 10 months in "dock" there- is that she can't move with the spinal pain to even get in the car, the wheelchair or an ambulance to get to the usual dialysis clinic she was using . Hence as soon as it becomes apparent she can't make her sessions , we are advised to call 999 and back thru' the revolving door to the renal ward. Again.

So , the situation with regard to her renal status is that she's pretty well renally stable at present , but the spinal situation has deteriorated markedly over the years to the extent that things are now in need of another looking-at. I have considered trying to get her some private spinal expertise to bear on things, as the N.H.S. doctors don't hear what we are asking in relation to the spinal stuff, which is the reason she is now blocking a much-needed renal bed . To be fair, the M.R.I. has no spinal department, but there seems to be no desire to help on this issue. Her renal treatment has been pretty damn good , tho.

I  can find some extensive spinal expertise fairly locally ,but unfortunately  there are no dialysis facilities co-located. ****! And another thing is that although I can afford to pay for some private help for her spine, I can't afford the cast of private dialysis sessions , as the cost of these mount up rapidly. If I can find a place to get her spine looked at, if the facilities for dialysis exist there, could the tab for that bit be picked up by the N.H.S.? Any answers to any of this would be greatly appreciated, as I say she's had enough and is talking of giving up dialysis and letting the build-up of toxins take her, or coming home and ending it all. As you can imagine, this has me frantic ,too.She's "only" 53 , and is the light of my life , tho' we've been together fot over 36 years ,it's still to soon to part.

Anyone any shred of comfort , help or direction? Now would be a good time to shout it out , folks!!
All the best to you all, stay safe , healthy and happy, appreciate each other.
Fatbloke-Dim.

Comments

  • Fatbloke_Dim
    Fatbloke_Dim Community member Posts: 11 Listener
    It would help a lot if we could be pointed in the direction of any facilities where our needs can be accommodated for the dialysis and the spinal medicine. If you  know anywhere , we'd love to know! That ought to get us moving forward a bit.Would be interested to hear from folks who have had similarl seemingly intractable situations . your experience may help us.
    Cheers, me dears!
  • Fatbloke_Dim
    Fatbloke_Dim Community member Posts: 11 Listener
    Blast it !!
    Forgot to mention we are in Manchester. The place where it never rains. Yes , that one!

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @Fatbloke_Dim, thank you for sharing this with us. I'm so sorry to hear about your situation- it's clear that you really care for your wife, and I can't imagine how difficult this must be for both of you to deal with. I really hope we can help. 

    So what you're looking for is a place where your wife can receive spinal care and expertise, but that also has dialysis facilities available. I wonder if @Angela_Scope knows what the best course of action would be?

    We also have plenty of members who've mentioned spinal issues: @Sparkle, @Lindanne, @lissj44, @misscfarnell, can you offer any advice? 

    And finally, are you receiving any support yourself? Caring can be a huge responsibility: you may like to check out Carers UK and see how they can support you. We also have a parents and carers category on the community which you may be interested in.
  • Fatbloke_Dim
    Fatbloke_Dim Community member Posts: 11 Listener
    Hi, PippaScope,
    sorry I've taken so long to get back- busy at the hospital ,just for a change! The situation is getting worse, her spinal pain is getting it's act together in a very major way, due ,in large part to her having a bad cough from a chest infection which may be a hang-over from the rather bad flu' strain that's just visited it's wrath  upon much of the hospital as well as the populace at large. She dare'nt cough as it's spinally very painful ,and leaves lasting injury causing more pain in areas that previously were not too bad. Doctors thought pneumonia may be showing signs , and she's gurgling with VERY thick mucus,she can't shift -one nurse when presented with a specimen, with a view to analysing it  , accused her of presenting a piece of pasta from her lunch !  Some of the staff are at best , less than interested, at worst hostile to her and there's a general air of thinking she's a malingerer or has Munchausen's. We have had to report certain staff members for this, although nothing is taken seriously, just a few soothing words bandied about until it all happens again. Not all disabilities are visible, she's known that from being a little kid, but others would do well to act on that maxim , methinks.

    I have had a carer's assessment, but i cannot get any help ,except for a one-off carer's grant of £200, which helps, and a second bannister rail was fitted by Rosscare. Part of which was atached with "No more nails" ,and fell off when I put my hand on it !!!  Yesterday, at the hospital , I found her very upset when I arrived , doctors suggesting she is institutionalised, and used to being there because she's having "all done" for her ,meals on time, wanting for nothing, that kinda thing and that  she WANTS to be there. Not helpful to say the least . She certainly does NOT  want to be there, I had to fight tooth- and-nail to even get her to let me call the ambulance as directed by the dialysis clinic consultant. She is at the mercy of some pretty vindictive staff who don't like her , because she 's quiet and not inclined to join in most of the "social" aspects of ward life. This is mainly because of the constant pain ,it be hard to be jovial when the pain is eating you alive. Anyway. I've probably said too much on that score, and it still grates on me to denigrate N.H.S. staff ,they're only human and subject to all the frustrations and limitations as the rest of us.

    It was disussed yesterday that a current M.R.I. scan may be useful ,and we agree ,but she had a VERY bad experience on admission , the doctor who attended her to supervise the scan ,lost patience with her as the pain was turned up to 11 whilst trying to get her off the scanner,she was screaming the place down ,and I've heard these screams , they are blood-curdling, and most definitely "not for effect" as some are wont to do. All thestaff from adjacent departments came to see what was occurring, expecting bloody murder afoot. The doctor "lost his rag" and just yanked her sideways off the scanner bed. Good thing to do with a patient with spinal issues ? Anyhow, that not only left her more injured with effects from it still persisting, but it has traumatised her to such an extent she'd rather die than go through it again. This despite being offered sedation , although the extent or nature of this has not been advised, and all queries on it have been answered very vaguely or evasively.

    On speaking with her, as a result of this traumatic experience, she is now very concerned that I may be trying to push her into spinal surgery, and we both know that's a lottery, and can leave you worse off than before.But I had looked at some of the treatments , and minimally invasive "keyhole" -type procedures that may help ,but I can't assure her it's entirely at her choice whether she pursues any treatment offered. I may be able to afford the investigation and a modicum of treatment , as these are not available via the N.H.S. , which is fair enough ,but I could not afford dialysis treatment in addition.I've had to pack in a £50.000 plus job to look after her,so income is now , shall we say, of somewhat slender means.

    Another thing I have to vent......much erroneous information is making it's way into her medical notes,such as ...she can lie flat , (not achieved that since October last year, and only then with extensive support and her legs raised a bit ) ,she can get to the toilet under her own steam , can stand, can wipe her own bum , ( not done that for 3 years ,been my job since then ) ,has refused pain medication , ( not true-some times it's been withheld by certain staff members in a very taunting manner), refused a replacemnt air mattress to replace a failed, non-operative one . She spent days lying on a broken one , on the hard steel bed base in great pain , she was never offered the replacement mattress, and that she's refused to speak to the pain team. Really? In her amount of pain? She HAS refused physio ,as this is fine for muscular and other less severe illnesses ,but not when your spinal cord is under compression from various sources ,or your root nerves are being trapped and squeezed, too. She's learned the hard way about that. And besides, on the admission prior to this one - for the same reasons- when her mobility improved just enough she really pushed herself so hard to recover some limited capacity to mobilise again ,I don't know howthe HELL she achieved it ,I doubt I could have done it . So physio ain't the complete answer , certainly not at this stage.

    I've ordered a stairlift, don't know if it will be any use, but I'm trying any way I can to try and get her home, we were hoping to do the dialysis at home, but I can't even get her to facility where the training needs to be carried out  .And it takes probably a couple of months to learn it all , too . This whole situation is a circle of difficulties, and I, nor anyone else can find a way to break the circle ,a minor miracle may help. Previously ,when she's had an acute phase with the spinal stuff ,she has just "ridden it out" at home, but the requirement for dialysis throws a big spanner in the works at every turn .It has us beat , for sure.
    Yours in exasperation,
    Fatbloke-Dim.

    P.S. If you don't laugh , you'll cry. Or is that just the Citalopram? 
  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
    Hello, @Fatbloke_Dim,
    and having read your posts through, what can I say? Though long in the past I've had issues with hospital staff and know only too well that they can fail.
    Would there be any value in your communicating with your local MP?
    Sorry, words fail me. I have no appropriate expertise to offer solutions, but if friendship, admiration and respect have any value, I'm here.
    Warmest best wishes to you,
    Richard
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    I'm sorry but I have been trying to understand your description.

    Degenerative disk disease only affects the lumbar spine which is a maximum of 6 disks and I don't understand why she is in so much pain. I have a similar condition but it is worse because mine has gone outside the lumbar area and affects 8 disks so far (according to the MRI I had last year) and, like DDD , is progressive but in my case will affect many more discs. I also have a rupture in an additional disk. The pain medication I take brings me down well below 8 if I rest sufficiently though I do have the same problems about lying flat. Also the Pain Clinic offer much more than Physiotherapy so perhaps you didn't just refuse the physio when you refused it. Whilst I too have had problems with hospital staff it would be reasonable for them to assume that her medication was at an appropriate level for her pain which, according to your description, it is not. Have either of you refused medication for her or had unreasonable side-effects and then not tried alternatives?

    From your description and trying to read between the lines to understand properly it sounds like she has two completely unrelated issues. The chemo is most likely the cause of the renal problems whilst DDD is the cause of the numbness and pain. Although renal problems at that level are likely to also cause pain it would be a different type of pain and in a different area of the body. I assume the chemotherapy was for MPA which can cause vasculitis which again can contribute to pain but should still be controllable with appropriate medication. I assume the steroids were used to try to alleviate the pain from DDD as well as to help treat the MPA.

    I do appreciate that doctors are not always forthcoming with their descriptions and often not very good at making it easy to understand but understanding ongoing conditions is vital when trying to get help. If you cannot describe things accurately then professional staff will find it difficult to believe you. Whilst I was still on tablet medication hospital staff were less helpful but once I began using patches they were far more careful and helpful. The levels of medication can make them take things more seriously.

    If I am right then your primary move MUST be to get the pain under control because there is no reason in your descriptions for it to be so out of control unless, as the records state, pain medication has been refused for whatever reason.

    I apologise if I have stated anything incorrectly but your description isn't clear enough for me to figure it out without looking things up and drawing lines between with research. Which is what I had to do. So parts of it are assumptions.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • wildlife
    wildlife Community member Posts: 1,293 Pioneering
    @Fatbloke_Dim Have you tried getting help from PALS Patient Advisory and Liaison Service? Just a thought.  
  • Fatbloke_Dim
    Fatbloke_Dim Community member Posts: 11 Listener
    Hi,y'all !

    Wildlife....yep ,been to PALS , and were directed back to ward matron, but the damage was done already , 'er indoors now regards everyone as taking her for a waster.

    Topkitten....she has diagnosed DDD, as of 2011, and prolapsed/ruptured discs here and there,one in particular is described as "dead and blackened" , although we take that description to be a more descriptive rather than technical or medical term The diagnosis also included various stenosis, narrowing of the left lateral recess, and compression of the thecal sac . She has NEVER  refused any pain medication ,  only actual,physical physio- you know, "bend, stretch,up,down ,all-around now"- I can't blame her for that . The pain team have not been to her on the last 2 admissions, despite her agreeing that this would be worthwhile. No adverse reactions have arisen from any of the meds so far .The chemo ,Cyclophosphamide, was used to immuno-suppress her as the MPA vasculitis is an auto-immune disorder.The steroids have not been used to treat any pain arising from DDD, any such effects being unexpected .The main reason for starting steroid treatment even before full diagnosis was to try to arrest inflammation marker increases and muscle inflammation , which amongst other symptoms the name of which escapes me in the current "brain fart" I'm experiencing ,included peri-myo-carditis .

    She has a diagnosis of MPA vasculitis , this took a few months to arrive at , and it's this that has caused the renal failure and the peripheral neuropathy and left-side deafness This was treated with high-dose steroids,60mg Prednisolone for about 5 months before any reduction in dosage could be considered. This in turn has caused other well-documented side effects, the doctors think bone embrittlement from same being the culprit for a L1 plate fracture, which,it has been suggested , is the first place this condition is likely to manifest itself. Also, cataracts from the steroids,and there may be some efeects from the plasmapheresis sessions she underwent early on .She has, somewhat ironically , no pain in the kidney area ,all the back pain is from the DDD. But the thing is, it's never been this bad ,in an acute phase , for so long, and the hospital bed is completely the wrong shape to allow her to attain what we regard as her "recovery" position ,which is completely contrary to what the spinal and postural experts advise- the "C" postion, which she has always assumed at home when riding out an acute phase. Maybe this may help if it could be achieved.

    She has no problems communicating  with, or understanding doctors , and is very conversant with medical terminology as it applies to her situation. In point of fact ,she often has to , as she refers to it,"pull her punches" and phrase things in layman's terms ,lest the medico's regard her as a smart-****!! She has the ability to assimilate detailed knowledge, she has spent much time interwebbing, but she only follows leads to bona-fide medical research or technical leads to this end . There's a lot of what one may correctly describe as "bilge" out there. Ain't that the truth. She is currently using Oxynorm , as the Oramorph was deleted due renal unsuitability, Oxycodone by tablet, and her long-standing Buprenophene patch has been recently doubled in dosage.Sometimes , during the acute back episodes, she's had the paraspinal spasms ,which I myself have experienced at a fairly low level of intensity, and I know just how painful these can be.

    Anyroadup ,it transpires that the doctors  and ward staff are all working from different angles regarding the situation at present, which we rather suspected , as we were being approached concerning a different aspect of what's happening on a daily basis ,there seemed to be no continuity , as though everyone had their own take on things,nobody seemed to be on the same page, under the impression that , for example, the L1 fracture was the cause of difficulty , when in fact this appears to have largely settled down. Probably tempted fate there, by saying that. So ,there is a pow-wow with all the relevant medical staff and us scheduled for next week ,so we can "reset" the agenda and all be singing from the same hymn-sheet. We'd been trying to point this out for some time , but now things have a bit more chance of moving on. Hopefully , we'll see.

    ANYWAYS, THANKS ALL FOR THE INPUT ! GREATLY APPRECIATED !

    More as it happens, folks !









    2
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @Fatbloke_Dim, thanks for updating us. That's a really interesting point about continuity of care, I'm sure it's something that many of our members with complex conditions will be able to relate to. Best of luck for your meeting next week, I really hope it brings about some positive changes for both of you!
  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
    Hi Friend, @Fatbloke_Dim.
    Good to see you again, though your story could hardly be more painful. I hope this isn't inappropriate, but it's based on observations made in my daughter's lifetime and from general observation since.
    When my Jenny was alive the NHS was (surprise, surprise) under pressure. I remember, for example, stints of answering the ward phone because there were no staff to answer it, and a lot of other things besides.
    Pressure generates mistakes, and even a few relatively minor mistakes create a heightened fear of making mistakes. I often found staff to be nervous and frightened of procedures they were supposed to thoroughly know, and nervous and frightened of staff who were senior to them and whose views, obviously, could impact on a junior's career.. There was, and I suspect still will be, a culture of (borrowing an Americanism because the English word may be objected to) 'covering one's ass'. I only suggest you keep your eyes open for it.
    Bottom line: you know your wife better than they do.
    Very warmest best wishes to you,
    Richard

  • Fatbloke_Dim
    Fatbloke_Dim Community member Posts: 11 Listener
    Hi,Richard,

    what you say is entirely believable, and anyone with half a whit of a brain can see the pressure the health service is under. All I'll say is we have not yet noticed the ass covering, but now you mention it , we may be surprised that we missed it . I have not, to be fair , noted any lack of confidence or commitment to carrying out such procedures as may be required in a  treatment scenario ,only an unwillingness to , for example ,ensure meds are given at appropiate, agreed times and things like requests for commodes or other assistance dealt with in a timely manner .Timely ,not instantly ,you understand , although there have been occasions where the commode provision needed to be quicketty-quick! The meds thing  ,is , I think of some import , tho' . Certain patients are invariably presented with same on time ,and and meds are "followed" into the dialysis suite a distance of no more than 30 feet from the ward ,whilst my missus has to create a bit of a stink and much umbrage to get hers-which she often does'nt. This despite doctors being told that doses of, for example , Diazepam ,are having to be missed , to play "catch-up" because missed doses would become due at times like 2 or 3 o'clock in the morning ,when ideally one should at least HOPE to be sleeping.

    Anyhow, arriving there yesterday , I found my wife upset again ,by the comments of one particular doctor,who insists she's only there for the fun of it. Funny these remarks are not made when I am present, and all this despite the fact that we had called him back after the ward-round the other day , to address these exact comments.Less than helpful. And yet there's another, even longer term resident in the ward, who does nothing but eat, sleep,complain ,and make the most obviously sickeningly, theatrical moaning performances when nurses or doctors are within earshot . At the moment it's heart/chest pain ,but when the staff disappear, the wailing mysteriously stops and a packet of chocolate bisciuts will be devoured in entirety . We are fairly certain this person's family have washed their hands of her ,probably she's not convenient to have around any more , and to cap it all , despite getting on with her famously well for a time, she had been mocking my missus when she was in agony and crying with abject despair. Vindictive old boot ! Enough of that ,life's too short.

    The brain fart I alluded to earlier, the condition I could not remember that was the reason for the steroid treatment originally, was Myositis. Thanx to our lass's cast-iron memory for that. This was before the Vasculitis was dog-nosed.

    Richard , I am so sorry to hear of your loss , it's in cases like this that the inadequacy of words becomes apparent. I can't imagine losing my missus, it fills me with utter terror just hearing her talk of ending it all ,or taking the "conservative management " route with her renal failure , both of which end the same way ,because the spinal pain is so dominant. Anyhoo, after the doctor has re-stated his opinion , when he's fresh on the ward this week and has no idea of the situation other than the - often inaccurate - medical notes ,we are'nt too hopeful about next week's meeting.  anaother thing, the ward consultants rotate every 2 weeks ,so there's continuity for ya !

    We'll post-up any outcomes.
    Best wishes to you all , let's hope for better things to come for all of us , as the irritating TV ad sez....."We're all worth it " . Good health to y'all!
    FB-D.
  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
    Lovely to hear from you @Fatbloke_Dim. In case I unintentionally misled you, 'my Jenny' is my daughter, the little girl in the picture. I divorced my wife of 20 years after she 'left me for a younger woman'! (about 18 months after Jenny died).
    All of that, though, is a quarter of century ago..
    Much of what you say rings bells. I had a friend who happened to be a senior Local Authority lawyer and who made his son a ward of court to prevent Social Services from taking him 'into care'. They wanted to take him into care because he 'was not thriving', because his condition inevitably deteriorated every time he went home. What Social Services did not know was that he did not thrive in hospital either, that he manifested exactly the same issues in hospital, but a consultant having given it as his opinion that the problem was lack of maternal bonding, the medical staff simply ceased to report anything that conflicted with their Master's view.
    And medication issues? Don't get me started.
    NHS staff are, by and large, wonderful people, and I want to see them better trained, better paid and better supported in every respect, but when they get it wrong they can come up with some doozies.
    My love to you, FB-D, and to your good lady.
    Take care
    Richard
  • Fatbloke_Dim
    Fatbloke_Dim Community member Posts: 11 Listener
    Hi,Richard...

    I'd figured Jenny was your daughter. Eventually. Hey! F.B.D......guess what the "D" stands for !! Full agreement here on N.H.S. staff getting a raw deal , things have to improve, but I'll not hold me breath meanwhile. Funny you mrntioned ****-covering . Guess what we encountered yesterday? Yep , you got it ! Staff forgetting to tell " 'er indoors" to be ready to go for a scan or investigation on her dialysis catheter ,a porter turned up whilst she was in the process of washing, toileting and taking her morning meds. The meds are a very big morning dose, and need to be taken immediately after food, and, as she'd not had any breakfast yet,not to mention the toilet rigmarole , she could'nt make it . Staff had sworn blind they'd briefed her the night before,which I can categorically state did not happen . They likely intended to , but being charitable and allowing pressure of other work may have taken their eye off the ball with this ,it did'nt happen.   Any way , various excuses were profferred , and much ****-covering was in evidence.This happened with another issue yesterday , but I forget what it was . Too many senior moments like this , these days, alas .

    Turns out the big pow-wow was not intended for us to have any input, just a gathering of medical staff, and a round-up of all available documentation from previous admissiions and evidence, to try and finally get some idea of the issues that are , well , causing the issues currently. That's a start, shoullda done this ages ago , although I don't know if a 7 year out of date M.R.I. scan be of much value ,other than maybe impart some idea of how the condition varies or progesses .If anything is relevant to us, we will then be given an audience with "the team" to discuss where we go with things. Hope there's somewhere we CAN go.

    S'all for now, let's see what I walk into this afternoon. Take a deep breath , "watch me back......I'm going in......"!
  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
    Good to hear from you, @Fatbloke_Dim
    It's an almost hatefully useless expression, but for what very little it may be worth, you and your lady are in my thoughts.
    Manchester (? as I recall) is a bit of a hike from here, but if you could use somebody for a few days to come and give you some back-up, let me know.
    Warmest best wishes, always,
    Richard
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    Have you heard of gabapentin and pregabalin? No idea if they're contraindicated for renal issues, but they work very differently from opioids (they're principally used for epilepsy). Many people get a lot of relief from them (including me, for a 9.5 year chronic back pain condition). 

    Has she tried a TENS unit? I find that helps too. 

    It's ridiculous that they won't change the bed so that she can lie in the most comfortable position! I'd make a massive fuss about this, as it should be easy to fix! I can't lie on my back for long, or I get a muscle spasm (agonizing), but find that lying in a C position is perfect. 

    Is it painful for her to be touched on her back? Often simply having someone stroke the painful area gently provides some relief.

    Lastly, if she's having muscle spasm pain, benzodiazipenes (I'm spelling that wrong) such as diazepam work wonders for me. There are other drugs that help with spasms too. One called Flexeril (I had it in Canada), which is called something different here. 

    Good luck!!!
  • Fatbloke_Dim
    Fatbloke_Dim Community member Posts: 11 Listener
    Richard,
    thanks for the exceedingly kind offer , but just now, I'm holding my own , after a fashion , so no need to call the cavalry just yet. Someone has to try and keep it together thru' all this, and I suppose I have the easy end of it.

    Waylay ,
    howdy-doody!
    Her Ladyship is already a long-term Gabapentin user ,and is on Diazepam , which she sez helps with the paraspinal muscle spasms. Guess you know all about 'em , and you're right, folks who've had 'em say it's pain beyond belief , even those who have had the pain of difficult childbirth say so, but unless you've been there yourself, it does'nt sound like much . As for the bed thing , apart from there being an alleged shortage of serviceable beds , I don't think they'd have anything that would fit the bill ,as at the end of the day , a bed still needs to be a bed , and what she needs is more of a "bad posture inducing low-rent sofa" , totally contrary to what the posture "experts" tell you you need .Just like wot we got at home!

    I can't touch her back  , or her neck ,top of her legs or even if the pillows brush against her  ,it makes her jump , and "twangs" her back  , effetively causing more damage herself. It'snot painful to the touch , just the jumping thing that upsets things. Certain staff members have come to her in the middle of the night when a dialysis slot became available , and prodded her awake by this means. Needless to say , this caused mayhem and was denied by the nurse involved.

    Yesterday , I walked into another storm . The obnoxious old cow in the corner , whilst my missus was trying to sit on the side of the bed to try and get her feet on the floor for the first time in a month or so , spotted that she was wincing with the pain ,not in an overt, noisy or theatrical manner , and started to mock her and laugh. Well ,that was enough , my missus let fly with bottled-up rage ,and this nasty old trout, who , if you recall ,has fits of "the vapours" and theatrical moaning and swooning in the most extreme manner ,flew across the ward , to "mash her to a pulp". No Zimmer frame , no gasping , no oxygen , no chest pain or bad back ! Truly.....'tis a miracle.  So now "our lass" is banished to a dingy backwater of a ward, with no outside view ,in the name of seperating the pair of 'em . Truth be told ,I'm somewhat relieved, as I don't know how long I could turn a deaf ear to her sniping and mockery.

    And you thought you went into hospital to recover. Ay caramba !!!!

    Let's all keep our chins up ,eh?
    Fatbloke-Dim.
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Just a gentle reminder to everybody in this thread that whilst it's great to seek and share medical recommendations with each other, as this can be really helpful, you should always consult a GP or medical professional involved in your care when making decisions about your own treatment. Hope today is being as kind as possible to you all! 
  • Fatbloke_Dim
    Fatbloke_Dim Community member Posts: 11 Listener
    Hi,Pippa !
    Yep , that's always good advice .Sometimes it may prove useful to float these ideas with the medical professionals, just in case  they may ahve been overlooked .It happens ,they're human jus' like the rest of us. To act on recommendations  one's self would be to court disaster. I've brain-stormed quite a bit with the doctors and other of late ,and as these ideas have been well-researched and well-reasoned , have had a favourable reception , even if they've been discounted for reasons various.
    Never ,ever act without professional input ! As the old public information films on T.V. used to say..."You know it makes sense!" .
  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
    What can I say @Fatbloke_Dim? You and your good lady seem  to be being given such a hell of a time.
    Let the offer stand 'in case'.
    Warmest best wishes,
    Richard

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