Good luck to Rosemary

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Re: Good luck to Rosemary

Postby Vic » Fri 15 Feb 2008 11:44 pm

Rosemary,
really sorry to hear how tough things have been for you post-graft, it sounds like you've really had an awful time of things. I'm sorry the hospital have been less than forthcoming with information, that doesn't help when you're keen to get to the bottom of things and try to piece together what it might have been that happened above and beyond the previous injury to cause that to happen. I'm glad that things seem to be, albeit slowly, moving in the right direction and given how bad a reaction you've had it sounds like all things considered the progress you've made so far has been very good, even if there is still a way to go. It would be very frustrating if it had to get to the point of you making an official request for information, but you are more than within your rights to do so. From a practical perspective, drug information can be got from http://www.bnf.org - the British National Formulary. It requires you to register with the site but my understanding is that anyone can register. From there, you can look up individual medications including anaesthetics, and it will tell you such things as companies that make them, contraindications and side effects. You mentioned ketamine - is this part of what you were given? Ketamine itself is very bad for causing hallucinogenic effects, it is rarely used in the UK these days.
All the best - I really hope things continue to look up for you in terms of recovery all-round, and that you manage to get back on your horse soon. Your worries with the stitch - I had a mixture of individual stitches and a continuos one, and I had mine taken out under the slit lamp with local anaesthetic drops. It is laborious, but fine. Take good care x
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Re: Good luck to Rosemary

Postby rosemary johnson » Sat 16 Feb 2008 9:38 pm

Vic, thanks for the supportive message.
And thanks for the URL - will look up the BNF pronto!
I don't know what drugs they gave me - no reason to expect it was ketamine, just fell through the floor seeing it mentioned on the google hit lists.
AIUI, it is used by vets to knock out horses....... so it may have been a veterinary journal research paper.
At the pre-op appointment, I was told that the system they "normally" use is something called "TIVA" - standing for Total IntraVenous Anaesthesia. That is, all the putting you to sleep is done from stuff fed into a vein in the back of the hand, and not breathed in through a mask.
They didn't pre-med me - not even the consultant objected to that, maybe because I was being an awkward, non-quiet and obedient good little patient, and he maybe thought they were running late enough already.
TIVA, apparently, usually uses both a "hypnotic" - something to send you off to sleep - and an analgesic (painkiller).
The normal hypnotic, apparently, is osmething called propofol (that's its generic name; it's sold by Astra-Zeneca under the brand nae DIPRIVAN). But propofol isn't a strong painkiller, so they have to use a painkiller with it.
I'm guess it is the propofl that is responsible for the wooziness, dopiness, clumsiness, dizziness, etc sort of symptoms one might normally expect after a GA. Also the hot-sweaty and shivery, fluey-like symptoms, which I've seen mentioned, and I'm guessing the racing heart, high BP and periodic faint dizzy bits still, with odd bits stuck in maybe tight muscles still coming out.
Though it is taking a long time ..... one site I found said it had a half-life of 24 hours in humans.
I don't know which analgesic they used with it - will be going to look at records, and if necessary do an FOIA request too.
The most common one(s) I saw mentioned were fentanyl, and some that sound like related compounds - the names sound like the same family. It's a synthetic opioid. Maybe I just react badly to anything opiate (my sister did when she had a broken leg).
There were a couple more mentioned; I don't know what they are (opiates or what, I mean).
Off to BNF.....
Rosemary

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Re: Good luck to Rosemary

Postby Vic » Sun 17 Feb 2008 1:43 pm

Ah, the joys of google! At risk of sounding slightly condescending, which I in no way intend to be, be careful what google throws back at you, especially when it comes to medical information, and even moreso with research papers. It can often end up in more confusion and anxiety than when you first started out (says she who frequently ignores her own advice :wink: )

(Apologies if any of the following is felt by moderators to be too detailed - my disclaimer being I'm a med student almost qualified as a doctor now so have a moderate idea of what I'm talking about but am only giving out generic info as a lay person so don't take any of it as absolute). There are a lot of drugs which are still out there and which thus frequently pop up in searches and in papers, but which in reality aren't used anymore. Ketamine is an IV anaesthetic, almost never given in the UK these days except occasionally in children. This is possibly why it might have come back in so many of your searches, the intravenous aspect. (Also still widely used in Africa where they don't have any of our high-tech gaseous anaesthetics, I've given it to patients there). The propofol, is more commonly recognised as 'the white stuff'. It's almost always given at the start of anaesthesia these days, especially when it is a planned operation rather than an emergency one as you've done all the things like fasting beforehand. (I am slightly confused at this point - do you mean you were given no gaseous anaesthetic at all? Usually, propofol is used to send someone to sleep and then once they're out, the anaesthesia is maintained with a gaseous anaesthetic). It's usually one of two agents, either isofluorane or sevofluorane. Isofluorane is a lot cheaper but is more likely to cause the common after-effects of anaesthesia, tho most hospitals end up using this even for short ops. Sevofluorane is more expensive but better at not causing the after effects because it's shorter acting. I think it's widely accepted that it does take about 2 weeks in total for the full effects of a GA to get out of your system (i.e. from a tiredness / lethargy perspective), *but* the major effects should have worn off fairly quickly, a few days, and it seems like these have very much persisted with you.

Yes fentanyl is the most common opiod painkiller given with surgery, again mainly because the effects are fairly short lasting. From an analgesic perspective I think unfortunately no amount of speculating is going to solve what you were actually given, as like you say there are so many different ones of different strengths and it often depends on the individual hospital protocol as to which drugs they favour for analgesia, sickness, etc. In terms of getting hold of your notes - most of them are subdivided within the notes folder into outpatient, inpatient, investigations etc. Some have a separate section for operative notes, but wherever they are there should be an accompanying section on anaesthetic record, where it will be recoreded which meds you were given. Also sometimes useful to look at the in-patient drug chart as well (this relies upon the hospital you were at still using paper records for that rather than electronic systems which more and more of them are switching to) but for completeness' sake, having a look at that so you have the full picture. If it was a paper one then that too should be filed somewhere in your hospital notes, but I believe that even if it is an electronic record, you still have the right to be able to request to view it.

Good luck - hope things are still steadily improving for you.
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Re: Good luck to Rosemary

Postby rosemary johnson » Sun 17 Feb 2008 8:20 pm

thanks, Vic; very informative.
Requesting records next on agenda. also at GP
I'm not - and I certainly know I'm not! - a very efficient finder of thiings with google, so won't be taking too much on trust.
A lot of the hits I was getting were veterinary ones - so maybe the mentions of ketamine were about anaesthetising horses. Apparently TIVA is used also with propofol as hypnotic for animals. Well, I can more easily imagine that then getting ahorse to breathe in through a mask over its muzzle. Well, while still conscious, anyway!
If I understand the stuff about TIVA - and if they used their "normal", which I don't see why they shouldn't - it is all intravenous, nothing inhaled. Said to be more expensive (though not by all costing models) but allegedly (!) better recovery, and none escapes round edge of mask etc etc.
I was passed a mask which I was told was oxygen, and apparently jad a tube down my throat at one stage (I was coughing and coughing very badly at one stage, and complaining "my throat hurts!" and have memories of anaesthetist's voice saying "That's my fault" - this while I was sprawled on floor hallucinating madly with him holding my hand, so recollections rather hazy!!
I definitely remember him sticking needles into the bak of my hand just before I cut out.
Apparently, they normally expect people to come round after 15-20 minutes, but I was taking much longer.
Will let you know when I find out more.
Rather suspect the state of extreme dehydration I'd got into must have been a factor. I'm normally a person who drinks glasses of water like a fish, and fasting from 7am and no more than odd sips and then no more after 9 rang alarm bells from the start. But I was more afraid of getting migraine and throwing up everywhere. No migraine, but had headache by the time I arrived at the hospital c 11.20. I complained of dehydration headache and was asking for something for it as soon as I arrived, but no joy for three hours (till they stuck a drip in my arm in theatre). I'm quite sure that a lesser mortal (!! - at least, a less bolshie one) would have fainted from the dehydration hours before.
RWent round to see Duke (the horse I share) today. The muddy path from the gate tot he stables is drying out, and now more gluey than slushy. I managed it better than I'd feared/expected - also walking down the rather steep and uneven path at the side of our field into the farmer's field beyond ours, to go with and keep an eye on one of the young lads who was taking his pony out on his own for the first time. WOuldn't have felt confident about leading a horse down there myself though; still far from right.
Saturday afternoon, I went to Ascot races - i had a free ticket and it was a good day's racing. The new Ascot layout has the parade ring as a sunken bowl with very steeply raked terracing round it. I normally like to go right down to the "ringside seats" as near tot he horses as possible, but climbing down that steep a raking really made me feel dizzy again, and by mid afternnon, what with that and the steeply raked seating where I normally like to watch the races (!!! - a bit vertiginous at the best of times) was feeling rather rough, so gave that up, and stayed at the top, leaning on (shoulder-high) parapet of the bridge where the horses walk under, in and out of the ring, and watching them parade with assistance of binoculars. Finding the tea-and-sweets kiosk helped, and felt up to trekking down again for the last race, but ooh-err!
Not only the binoxulars shoulder strap but also the collar of my coat keep rubbing and feeling uncomfortable - so maybe a trip to the chiropractor wouldn't be out of order.
meanwhile, AFAIK the eye is doing as OK as can be expected. I can read the paper out of it at about 5" distance, though it is still a very unusual sort of fuzziness to work out, and it starts to feel very dry and sore if I try for any length of time.
The sorest part, actually, is a bruise half way along my cheekbone, which apparently is where one of the instruments was resting. (A similar mark on my upper eyelid has faded.) If it was resting hard enough to leave that sore a bruise 18 days on, I'm sure I wouldn't have been moving too much under a local!
Rosemary

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Re: Good luck to Rosemary

Postby rosemary johnson » Tue 19 Feb 2008 7:30 pm

Oh crumbs, not MORE!!!! NHS bureaucracy!
Is it something to do with having worked in the NHS for 7 years myself that makes me think that the only thing to do when faced with a piece of NHS bureaucratic system is to try to buck that system?!
- or indeed, to think that such a system is in immense need of being bucked?!
grrrrrrrrr.
Off to do some more bureaucracy, then find the chiropractor's phone number.
Rosemary

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Re: Good luck to Rosemary

Postby Andrew MacLean » Wed 20 Feb 2008 7:15 am

I quite enjoy a bit of 'bucking the system'. :D

the thing to remember is that even large bureaucracies are staffed by basically decent people who sometimes see the absurdity of their own procedures.
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Re: Good luck to Rosemary

Postby rosemary johnson » Wed 20 Feb 2008 8:41 pm

Bureaucracies staffed by peple well aware of the problems intheir system?? - oh yes, tell me about it.
I was working at computerising path labs at the time when the NHS was moving, by government decree, from a cash flow accounting system to a full, proper accounting set of rules. That is, instead of having a cash allocation per year, and you had to spend the cash within the financial year, they had an annual budget, and buying stock or equipment merely converted one asset (money) into another (stock holding).
Lab managers used to filling up their stock rooms in Marchto use up any surplus cash - and experts an "working the system" had to work out how they were going to work the new system.
I used to go round the country visiting the labs, giving them coaching sessions in how to use the new computer system that implemented this, and turning up to the training courses in London to introduce myself as available for this role. Ostensibly, it was a job in teaching people which buttons to pushon the computer terminal. In practice, it was a lot of sitting round over coffee talking about new stock control procedures, and watching their faces as they working through the implications that they probably weren't going to discuss with someone from "Head office".
On a less off-topic note: the eye is still reading at about 5", possibly slightly clearer than it was, or maybe my brain is getting more sued to reading with it when the other lens isn't in. It still feels dry and uncomfortable at times, mainly in the mornings or when I've had it open or been trying to red from it for too long. The drops don't seem to sting so much now. Ithat the "seam" healing over, getting used to them, or.....?? Actually, it feels less dry after putting the drops in - is this a bad sign as it is getting in need of all the steroid??????
Balance is still shot-up, and haven't heard a thing from the GP since he last told me not to come and see him again (on the phone, as he'd dealt with it on the phone, he thought). Have found the leaflets a friend gave to me about her chiropractor, and rung her to have a chat about it. It's very near where I'd be changing trains to go to see Duke tomorrow anyway, so am intending to take the leaflets and go and drop in, and book myself in tomoorw morning.
Well, never any harm to get checked out, and it's not impossible I've kinked my neck a bit, whether with the stress and tension, thrashing about on the floor with no balance and massive hallucinations, or having my 15 stone (!!) being person-handled off an operating table - or even running for a train with the binoculars still hanging round my neck....
Meanwhile..... left eye has been feeling rather over-used with all the extra work to do (not surprising; it's only been used roughly every other day for the last year or so). SO this morning, I thought I'd try one of the piggy-backing soft lenses under the scleral to see if it made it more comfortable.
WOuld have been fine if I'd got it in straight...... but didn't, and it felt very uncomfortable.
Took it out again to see if the soft lens had slipped. No soft lens to be found.
Tried sticking finger into eye to hoik it out, pulling down eyelids, etc. So nowhere to be found.
Put scleral back in. Hoped if soft lens stuck in eye, would come out with it again.
Still pretty uncomfortable. Could see any sign of soft lens anywhere.
After half an hour, took scleral out again in desperation. Lo and behld, missing soft lens stuck round edge of scleral.
Phew!
Reapplied masses of saline, strightened the pair out, put them both bac in together.
SO far so good...... no noticeable effect on vision and comfort still OK so far. Don't know if its aking any difference, though.
Went out this afternoon and got my hair cut short again. SHould have had it done months ago, was really long and shaggy. Dunno if this is a symptom of starting to feel better or just in hope will be a cause.
Meanwhile, expect plenty of cold weather.
Rosemary

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Re: Good luck to Rosemary

Postby Pat A » Thu 21 Feb 2008 9:28 pm

Rosemary
I haven't been "around" much lately as too much "stuff" going on in my life, and so I have just read this post string from start to finish - and have laughed, cried and despaired for you. Can't offer anything constructive - other than to say I am amazed that you have come through all this with your absolutely wonderful sense of humour intact! :lol: :lol:

Hope things continue to improve - and rest assured NHS bureaucracy is alive well, and will never die! (but I am sure you know that already!)

On a separate point - where does Duke "live"?

Take care - and keep posting

Pat
PS You going to AGM?
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We grow old because we stop playing.

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Re: Good luck to Rosemary

Postby rosemary johnson » Thu 21 Feb 2008 9:39 pm

Pat, thanks for the message. Read all that in one go? - what stamina.
I'm afraid the survival of the sense of humour is probably less of a plus point than it might be - one of the other effects of whatever the hallucinogenic agents was has been to give me periodic fits of hysterical giggles, often about things that aren't really all that funny.
Duke lives in a field near Chigwell, where north-east London turns into Essex. If you can imagine (or find) a tube map, it's where the right hand side of the Central (red) Line goes round in a loop and joins up with itself again.
Yes, I'm planning on going to the AGM - hope to see you there?
I'll probably be the one in jodhpurs, but I promise I'll wash the mud off the green wellies first.
Rosemary

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Re: Good luck to Rosemary

Postby rosemary johnson » Thu 21 Feb 2008 9:50 pm

Just treid to post this and it "got lost".
News:
Good: booked in with chiropractor; had photocopying bill (!) from hospital
Bad: no other news from hospital, nor from GP. Duke's foot is still exuding pus; he's also still anaemic and has started eating his own droppings (why??? mineral deficiency? vet's meds killed all mis gut microbes and he needs bio-yoghurt???!) Went out to see him, gave him pat and some treats, made cup of coffee and did everyone's washing up as usual (!!!), sat and drank coffee and felt very dizzy and shivery. Decided to go home. Went to say "goodbye" to Duke, found he'd pulled the poultice off his foot. Had to call assistance to redo it. Went home and went to bed, feeling hot and flushed and shivery, bit like flu, as well as dizzy. Very fed up with this.
The eye??? - will put on a new thread.
Have promised Duke's owner I'll get and take a load of cans of Guinness at the weekend (for his anaemia; it gets mixed in with his dinner). Think he'll have to fight me for them.
Rosemary


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