Latest in saga of disastrous graft op

[rosemary johnson]

Well.
It is now a year on since my disastrous graft op. It was Wednesday 30th Jan 2008, so a year to the day in days, and a year on Friday to the date.
Where am I?
I am now so hypersensitive to steroids i am getting "bad trips" from my own steroids hormones produced in response to pain or swelling, and probably plenty of other things too (and not just fear and anger).
I can't sleep at night - I've been having so many of the things recently, my mind just won't switch off and relax enough to fall asleep lest more flood in. I'm exhausted.
Last Wednesday night, I was having one to the effect I was going to the hospital to a meeting with the Chief Exec about the complaint I;m still supposed to be typing up. He'd invited - goodness knows why! - That Certain Surgeon, who at one point made such a crass patronised-git remark I flipped and jumped up to fly at him.... and tripped over the carpet edge, fell headlong, and carshed into the edge of a coffee table, breaking again the rib I broke falling off Duke.
Various other people who'd been at this meeting were crowding round as a sprawled on the floor, holding out hands and trying to help me up. I couldn't breathe, was gasping for air, had no breath to speak with, was struggling hard to tell them "NO!" and they were taking no notice, and with this ferocious pain in my right hand side. They kept grabing and trying to pull me up, and every time they moved me, I could feel the borken end of rib tearing through the coating of my lungs. I was trying to fight them off and trying to say 2don't move me, you'll kill me" and wouldn't they understand? Eventually they gave up, and I could hear them standing over me saying "She's having another confusional episode" an dmeanwhile I could fell myself going greya nd cold and clammy, and feel the blood running through the tears and filling my lung and running downhill into the "good" lung. And I couldn't breathe or get a word out and I new i was dying, lying on the hospital floor.
And no-one was there to know how stupid they'd all been in causing it.
Needless to say, I slept not at all more that night, felt horrible all the next day, tried to ride Duke and felt really sick and dizzy and wimped out and probebly rode him very badly (from his point of view, I mean, havin to carry me).
Hardly slept since.
Desperately need to find the right speciailist who can - I hope!!!!!!! - advise on how to damp down a steroid hypersensitivity reaction. If they exist and it's possile. And before it wrecks my adrenal glands from the confused signals - alredy been getting lower back aches.
I do not want to go on living like this. And then come spring there will be the hay fever and the midges and mozzies and.....
Ability to make sense of being in otion stillbadly affected. Still get seasick at drop of a hat, and all too likley to lose bearing s and balance and wimp ut on a horse. All too often I'm getting up there and before long am clinging on anyhow like a terrified kid and getting more and more dizzy. I sort-of cope out of desperation with Duke normally, but I know if I could no longer ride a share of Duke, I'd not be able to find a part-share of another horse - wouldn't be able to find one I could get to know and feel confident enough to ride in any sensible "trial period" timescales. And only time before I decide I really ought ot give up trying to ride for the horses' sake.
Bitter irony to think that the thought of having good distance vision with no spooky ghosting out of my right (taffic-side) eye and being safer and more confident out riding as a result was a factor spurring me on to this op!!!!!!!! - or that I mgith take up cycling again; haven't dared to think about trying to balacne riding a bike.
Still getting problems with forgetting names I know well really - and now it's names of things too, I'm not going to be able to get any qualifications for updated work skills (or others) because I don't know how I@d ever pass an exam.
I've said, and will say again, that I don't believe I was in anything like a legally-competant state of mind to be asked to consent to that op; but I still cannot bear to think of how utterly and incredibly stupid I was to let yself get coerced into it and not walk out. I will be berating myself for ever after for that.
I try not to think of being on artificial ventilation throught and for a good while afterwards. You may think this is silly, but I saw my dad on those machines, in intensive care, dying. Or probably dead by then, truth be told. I just can't bear the thught I was like that too.
Meanwhile, I ahve this THING in waht's left of my eye - and how could I have forgotten to ask to see and say "goodbye" to the part of ME that they just chucked away??!!! - that is total anathema.
I try to think of the poor man it came from and have fellow-feeling with him. SOmetimes it works better than other times. And I'm NOT!!! going to spend the rest of my time walking round as an exhibition of That Man's precious embroidery; so bloody precious embroidery it was worth giving me brain damage for.
Meanwhile, meanwhile..... I had better working distance vision before the op, and the way things are ATM likely always will.
Vision's the last of my concerns - but I gather you mgith call it "disappointing" - can see no more of a Snellen chart now than beofre, or than the other eye can, and reading unaided is getting ever harder as it gets more astigmatic. It is spending most of its time too red and sore to want to try putting a contact lens in, and when I do the world is going misty and cloudy through it in 2 hours. WOuldn't be any help for going out to a wet and horrible muddy field to see a horse and take him out. Can hardly put a contact lens in when plastered and engrained with mud, even if I thought I could bear to try.
And as if life weren't a bundle of roses, I went out to a community group meeting yesterday evening with tea dna sandwiches and planning permission applicaitons to object to, and ate something I shouldn't and spent most of last night sitting onthe loo!
OK, I'll shut up now. That's my year on rant.
SLightly more positively:
1. I have rung hospital and left message for glaucoma guy to the effect that now I've stopped the dexa. drops, the Thing has nothing to mask bad reaction to anti-glaucoma drops so is feeling perpetually red and sore, and the eyelids swollena nd growing styes; asked if he ahd any comments or I'd start reducing the dose
2. had long and interesting (I think...) phone call with nice nurse called Vikki this afternoon........
3. got appointment at Dr's place tomorrow afternoon - wish me luck.
Rosemary

[Hilary Johnson]

Good luck
Hilary

p.s. tell us more about the nice nurse ...??

[rosemary johnson]

Dear H: by "nice nurse", NO!! I do not mean in that sense!!!!!

I clearly was tempting providence the other day saying I could cope with riding Duke normally. Yesterday my dear 4-footed friend decided that the (very nice, Essex commuter belt, mock-half-timbered semi lined) MOunt Pleasant Road,IG7, was a good place to go for a gallop. Twice.
Managed to cling on, just about, but will ahve to drop in a card to the nice people at No 71 saying sorry for the excitement - only way I could get him so stop was to sterr him up the drive straight at their front wall. FOrtunately he didn't spin round right and jump the fence to next door
s garden. NO harm done but no t the thing my shot-up balance can handle all of a sudden.

Then yesterday.......
I have been sorting out a change of GP. And raising the DPA/FOIA with old GP
s place.
TOld hospital last appointment - well, told several people, and practice nurse went (she said_ to check computer was updated) was changing and not to send any more correspondence to old address.
As per a few posts ago, said VERY explicitly that I did NOT!!!! want anyone from hospital "writing to my GP on my behalf...".
Have also made respresentations on this subject, following earlier .... supply your own expleteive-deleteds! -...... correspondence from AThat Certain Surgeon.
So waht do I get yesterday???? - ac opy of a letter to (old) GP from new consultant with... well, what sounds like a load of Chinese whispers, regurgitation of That certain Surgeon's misapprehensions, and, well, character assassination.
and saying she has impression I won't go to see him.....
You bet I on't be doing!!!!
HOwever, I do want to be able to have sensible conversation with new GP about how to find the appropriate sort of neurologist (now a year to the day I've been asking for this, and have the bloody NHS yet been the blindest but of use?????!) and a ?endocrinologist who might be able to have something sensible to say about damping down the steroid hypersensitivity.
And do NOT!!!!!!!! want all this bullshit from the hospital getting inthe way.
They - the hospital - have already done plenty to wreck my life, and current/planned future work prospects by, well, let's say "accident", and care-lessness. NOw it seems they are doing their damnest, deliberately and through deliberate disregard, to ensure I spend the rest of my life destitute.
I am LIVID!!!!!!!!!!!!!!!!!!!!!
I have left voicemail with said new consultant's secretary, saying I ant to be contacted pdq about what gives round here. If I don't hear anything, copy of said letter will be winging its way to the hospital's chief exec labelled formal complaint very shortly.
This I could do without. And I really thought new consultant had more sense.
Arrrghhhhh!!
Rosemary

[Hilary Johnson]

And you told ME to "calm down" .....!

I find it very hard to believe that these people are deliberately harming you - I find it far easier to believe that, having seen you "freak"ing in their hospital, they were genuinely very concerned about you. _I_ was seriously concerned about you, reading your account of it. If they really believed that you were suicidal or dangerous, it's not surprising that they weren't willing to just do nothing.

But then you said I should calm down ... I can't tell how much you mean of what you say, and how much of it is just sounding off. Should I assume that it's ALL sounding off ???

And, no, I didn't mean it that way about the nurse, either - I asked because it sounded like good news, and there's been far too little of that - but if you'd rather not say more about the interesting conversation, fine.

I never answered your question about chicken pox, so here it is ... When I got back to work I found that I had forgotten some technical details about the system I was working on - things I know I had known before I got it. It was just a one-off forgetting - once I'd re-memorised the things I'd forgotten, I remembered them afterwards. It felt very odd, and I was worried I might have forgotten things that were more long-term, but I'm now sure I haven't, just fairly superficial work things.

H

[rosemary johnson]

Hi H:
Ta for the info about the chicken pox. It sounds like a more-advanced version of what I've found before - come back to work after being off ill and couldn't remember much about what I was doing beforehand. It's normally come back after a while of "getting back into things". SOunds like the chicken pox just odes a lot more than that??
As for the calm down..... was meant to be a sort of light-hearted reassurance i was still hanging in there. And yeah, it was pretty not-nice at the time.
Maybe they did mean well - but why, if they're that concerned, don't they try asking me what would help. Rather than do something that I'd explicitly said I didn't want them to do and that wouldn't help? - and was inappropriate anyway as I was changing GP, so writing to old one not going to help anyone.
Fortunately, am changing GP - hope get more sense out of new one before file of records arrives through PCT bureaucracy.
And yeah, in general I do tend to agree more with the "cock-up" theory of life than the conspiracy theory. But I do wish people would think through what they do first and what impact in may have. (I mean, suppose one were a medic who'd had a rather nasty adverse drug reaction and was trying to get it sorted out - and some "well-meaning" person sent that sort of letter to their Fitness to Practice committee (or whatever it's called)???
Have heard nothing more from new consultant or her secretary - latter left a voicemail on Friday and said she'd call again but hasn't; but maybe she hasn'tbeen able to get in because of the snow.
Rosemary

[Hilary Johnson]

Nah, chicken pox really did wipe memories in a way different from just being on holiday. It was very strange.

People do seem to have a tendancy to impose on one the help they want to give, without asking. Like the story of the little boy who helped old ladies across the road even if they didn't want to go. Maybe too many people praise young children for "helping", to encourage them, and forget to tell them when they're a bit older that actually .....

There's also a human tendancy for people to do what they're told NOT to (e.g. Peter Rabbit ... ) particularly if they're not told what they SHOULD do. I often itch to tell people shouting at their toddlers in supermarkets about this ... So you might have got a better response (and also demonstrated that you are sane and rational) if, instead of saying, "No!!, No!!, don't tell my GP!!!!" you'd said something like, "I'll be seeing my new GP as soon as possible and I'd rather tell them myself in my own way - but - what would be great <smiles sweetly> is if you could send them a letter advising I be referred to a ....".

I thought you were seeing the new GP last week... You said "tomorrow afternoon" ... Good luck whenever it is...
H

[rosemary johnson]

The most extreme case of people "helping" when they should ask first is that of those individuals who cannot resist pushing someone who is travelling in an electric wheelchair.
I cannot imagine why, as generally the electric wheelchair users are overtaking me (!), but some people see an overriding need to push the things, and don't bother to ask first, or to take any notice when the person using them says "NO, please don't!"
SO they grab hold an dpush anyway, and when the person sitting in it explodes with ire, they get all shirty.
And stalk off in a huff saying how keen they are to help and how ungrateful people are....
.... whereas, in fact, if you try to push an electric wheelchair when it is in gear, you wreck the gearbox and leave the poor person sitting in it with not only a broken down means of transport, but a repair bill for thousands of pounds.
Yet again.....
Yeah, right; we thought we'd got problems.........
Rosemary

[rosemary johnson]

Well, yesterday had two things happening:
1. phone call from new consultant's medical secretary - saying sorry letter had gone to wrong place but sounding as if she couldn't be expected to .... blah blah blah. Said in view of its content it was probably fortunate it hadn't gone to the right place!!! - she hadn't a clue about what was in letter, but said she'd get hold of notes and look it up and phone me back. Surprise, surprise, not a word since. SOunded very shirtya nd stroppy somehow.
2. Appointment at new GP's place, nice lady called Susan, very kind and supportive, agrees this (steroid over-reaction) sounds like it does indeed need an endocrinologist. Have another appointment next week, hope full set of reconrds hasn't arrived by then....!
Have been looking up diseases of malfunctioning endocrine systema nd hoping I@m not getting both Cushing's disease and Addison's disease at once. C's D normally is when adrenal glands go wrong and start producing too many of the hormones (variety of steroids) normally produced there. I'm getting a range of the symptoms from I think, hypersensitivity rather than overproduction.
A's disease normmally when adrenal glands malfunction and don't produce enough of the adrenal gland horones for them to do their job - if part of my system is hypersensitive an doverreacting, and sending back feedback messages saying "Enough! Don't send any more" and adrenal glands shutting down in response.... well, hope not getting other problems from shutting down too much so some parts not getting all the signals they require.
Am getting odd food fads - alternate cravings and revulsion - have wondered before if potassium levels flunctuating crazily, and now wondering again (poss result of A's D).
Also back ache in kidney region, though this could be from too much moving stuff around at the field - part of planning move to drier stables!
Seeing chiropractor tomorrow - he'll know, no doubt!
Now got another cold - sore throat, bunged up nose, cough - probably result of getting soaked at Plupton races on Monday. More soreness, swelling, cortisone no doubt..... sigh!
Hope everyone else is surviving this climate.
Was snowing again this evening as I was taking the horses' dinners round.
Rosemary

[rosemary johnson]

Latest news:
Having the flu-alike just after Christmas has definitely set back the "trying to get fit and strong again" back about 5 months. Muscles like jelly again (until I do stretches when they feel like cast iron), no strength, no stamina.
Nearly collapsed in field (at back of the new stables) - first trying to turn my best-bbleoved 40footed friend out to graze without him pulling away from my and galloping off with his reins trailing. Failed. Nearly had asthma attack trying to dash back to yard to get bucket of horse-food to catch him with before he get leg through trailing reins and broke something. (He did, but only the reins not his neck, and I fixed reins again). later, trying to go down field to find horses and bring them in for their dinner. DOn't know way round new place very well, sliding in mud, can't cope with this and get dizzy very easily. Ended up hanging weakly onto fence post in gathering dusk, feeling faint and dizzy and shakey and like i couldn't breathe. And thinking I shouldn't be here groping round a dark field looking for dark-brown horses wearing mud-covered rugs, I should be in hospital getting this sorted out. Eventually recovered enough to stoagger back to tack room and sit down with cup of tea.
Still felt shakey all night so rang new GP in the morning and went to see practice nurse.
She listened sensibly, didn't really know what to do for the best, wrote out form for whole raft of blood tests, said to take it easy.
And booked follow-up appontment for when test results should be back - with senior partner GP who it turns out I am officially registered with.
Good news is: all the blood tests have come back as normal.
Said I wasn't surprised - thought it was a hypersensitivity reaction not actually over-large quantities of the substances floating aroudn the blood stream.
Senior partner GP listened, understood what I was saying, nodded as if he understood rather than thought I was mad when I talked about steroid bad reactions, "Iatrogenic Cushing's", concern my whole endocrine system was getting confused, and also about the damage to those certain brain functions, and trying to get to see the right neurologist for over a year!
He asked if I'd had a brain scan done, and seemed to think I certainly should have done! - I said "No" - no-one's tried to test anything, only the guy who did the same things my chiropractor does, like tickling my toes and checking I can feel it.
He says he's not an expertin those areas, so he's going to consult his colleagues and get back to me, and meanwhile is going to fix an MRI scan, so I'm awaiting a letter with an appointment. And a letter/phone call from him.
Am feeling much more hopeful.
I have heard nothing further from the hospital about the letter to old GP which I hit the roof aout. Am I surprised.....?
Bad news is I put my neck out again - thought I'd pulled a muscle picking up something too heavy or awkward but it got owrse and worse. Taken it to chiropractor twice in last week and now much better. Just waiting for inflammation to go down. HOw I did it, don't know. Mabe Duke pulling away from me in his haste to get out inthe field jerked my shoulder.
Better news is: we are now arrived and settling in to the new stables! - well, new home for our horses; it is quite historic. But OH!!! how ownderful tohave purpose-built stables, with brick walls, concrete floors, electirc lights, powerpoints (electric kettle......), running water, concrete paths - and an all-weather surface arena to ride in! THe old place was basicaly just a field, with a row of wooden, prefab shelters put up at one side on earth floors, and the only water a standpipe on the fence at the far side of the field where a hosepipe came through the fence from the garden centre next door. In summer it was beautiful - in winter, the mud was indescribable!
And the new place has DRAINS!!!!!!!!!!
ANd there is even more space in fields at the back of the stable block than we had before.
Thehorses are settling in, the humans are happy - apart from find the horses are right at the far end of the field when the time comes to bring them in.
ANd I've now even got back up onto Duke - after how dizzy and shakey I felt last week clinging to the fence post, I wondered if I ever would - and been riding him inthe arena and trying to practice some dressage..... ready for the next ressage club competition.
Moving out was an experience! - the horses are OK, they can move themselves (and saddles and bridles) on their own 4feet (only c 3 miles from old place to new) - you 've no idea how much clobber is associated with 6 horses, 7 ponies, 2 goats and a coop of chickens! All to be carried ot dragged on wheelbarrows up from the stables and containers down the side of the field up to the gate through half-calf deep mud. And muggins here feeling so weak and jelly-muscled and exhausted in no time.
Like, I do a fraction of what the othes do, at a fraction of the speed, and am worn out in no time.
Oh well, doing endless washing up and putting the kettle on again with monotonous regularity is a useful job someone else doesn't have to stop to do, I suppose.
Just wait to hear from MRI scan people, new GP again, hospital.......
Right, off for another banana! What was that about odd food cravings?!
ROsemary

[Andrew MacLean]

Rosemary

All the best with the MRI. I hope that this is the first stirring of a new beginning for you.

Andrew