Good luck to Rosemary

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Anne Klepacz
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Good luck to Rosemary

Postby Anne Klepacz » Wed 30 Jan 2008 11:40 am

Rosemary (a regular poster here in the past) has asked me to let all her friends know that she's gone in for a graft today. So good luck, Rosemary, from all of us. We look forward to seeing you back on the forum soon!
Anne

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Re: Good luck to Rosemary

Postby John Smith » Wed 30 Jan 2008 12:50 pm

Yes, Good luck Rosemary!

Hope that you get a great result after all the years of wearing lenses. Looking forward to seeing you at a social in the near future.
John

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Re: Good luck to Rosemary

Postby Andrew MacLean » Wed 30 Jan 2008 1:15 pm

Rosemary

Every good wish for your graft. We are all thinking of you.

Andrew
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Re: Good luck to Rosemary

Postby Anne Klepacz » Thu 31 Jan 2008 2:21 pm

Update - Rosemary had her graft yesterday but had a bad experience coming out of the general anaesthetic. She'd be interested in hearing from anyone who's had a similar experience. She probably won't be looking at her PC for a few days, but if anyone wants to ring her to offer a bit of TLC, she says that would be very welcome. I don't want to post her phone number here, for obvious reasons, but will pass it on to anyone who PMs me.
Anne

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dweezil1968
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Re: Good luck to Rosemary

Postby dweezil1968 » Thu 31 Jan 2008 3:21 pm

i had a bad reaction to the stuff they put in you via a drip pre op (something to do with getting the eye ready for surgery) and then after the op I was pretty bad with pain so they kept me in and it was meant to be day surgery. this has happened to me before and did not affect the eye or the healing at all. Just me and general anaethestics I think!
they kept me on morphone for 24 hrs- ace!

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Re: Good luck to Rosemary

Postby rosemary johnson » Mon 04 Feb 2008 2:54 am

Hallo all.
Thanks to Anne for posting the news, and for the good wishes.
Have now given up on finding the old password, and got a new one. This time, I really will change it to something more memorable.
OK
Well.....!
Anne put it very mildly.......

IMPORTANT NOTE: VERY IMPORTANT for anyone reading this and nervous about upcoming graft: the tale that follows stems from the fact I had a previous injury that got exacerbated and much magnified. If you have not had the same injury, the same is not likely to happen to you. Please, do not let this deter you.

With that said.... well, yeah, it has all gone completely pear-shaped. From this patient's point of view - and they are MY eyes, and ME that's got to live with the outcome, this is disaster.
Wish I'd never even thought about going this route.
ANd a lot more.
I would rather have lost the eye completely than lose my marbles, which is what I feel is happening.
OK, no names of hospital or consultant, though some of you might guess.
SUmmary - quick as I can: a few years ago I got what I now know is called "hypoxic brain damage" frm an accident at work. Said accident injured my neck somehow, and trapped (a) blood vessel(s) in my neck, so certain parts of the brain were getting a reduced blood supply - and as this went on for SEVEN MONTHS!!! the lack of blood has left lasting damage behind.
Shan't attempt to express opinion of work's Occ Health dept who labelled this all stress and tried to fob me off on a stress councillor!
Effects were like being half-stoned for 7 months - like those strange people who try to half-hang themselves to get a high.
complete with hallucinations, periods of "cutting out", complete foggedness and some very nasty violent bits - including one where I was hallucinating strangling someone and had she really been within range, might easily have really killed her. Needless to say, I was terrified.
Not to mention feeling I was losing my mind, and no-one believed me (see above re Occ Health)
After 7 months, the blood vessel somehow untrapped itself, the "stoned" symptoms vanished, and most of the other problems gradually came right again.
Except for - I presume - the bits of the brain damaged by the long-term oxygen shortage of reduce blood flow. There's a few of those - the ones of relevance here being that my balance was still not right - like the typical case of "the driver doesn't get car sick, his passengers do", I could walk, ride or travel about fine so long as knew where, when, how fast, etc I was going but would start to get dizzy and panicky slidin on slippery ground, or rding a horse who starts shying or spinning round and going the wrong way, or setting off into the distance (!) or over rough and uneven ground (not helped by finding it hard to judge slopes with only one eye and ultiple ghost images).
Plus a hard-to-pin-down feeling that something in my brain was "fragile" and the wrong stimulus could flip it over into full "bad trip" mode in a trice - complete with hallucinations, violent fits, etc.
Needless to say, I was concerned that a general anaesthetic might be such a "wrong trigger" - whether through reaction to one of the chemicals, or just how a groggy, half-woken brain might react to something going on around it.
Sedation completely out of question - if it had caused triggering of a "bad trip" in mid-op, doesn't bear thinking about.
Two anaesthetists discussed all this, understood my concerns, were quite happy it could all be done under local, discussed process, all sounded fine; if having to lie still for two hours is what it takes, fine, I'll do it.
Consultant.....
I will be changing consultant asap. If anyone can recommend their consultant, as soeone who will treat one as an intelligent fellow human being and an equal partner in managing our OWN EYES!! please contact me urgently. Particularly if he/she did your grafts under local with no arguments.
What happened? - I suddenly woke up, from totally out to wide awake and screaming in agony with whole world on move and the already-damaged motion-sensor part of my balance totally overloaded and sending out alarm signals for all it was worth. Took about half a second to realise I was being wheeled along corridor on a trolley, and if motion didn't stop would have complete disaster - damaged brain couldn't cope with movement. Screaming "Stop stop!" at porters (?) who went faster and faster and trying desperately to dive off the trolley as only way to stop motion-sense overload, but muscles like jelly and couldn't.
By the time trolley stopped, already dodgy balance totally screwed up, everything else coming out in sympathy - hallucinations, urge to smash anyone I can get hands on, completely terrified. Also terrified I'll succeed - don't want to spend rest of natural in Broadmoor with murder on my conscience.
Still not possible to keep STILL and try to let balance start to recover - not that I could have balanced on a trolley by then.....
Someone put me on a chair. Can't balance on a chair - balance system knows it and panicking again. Have to get off chair and lie on floor as only possible place where totally ruined balance can balance. Can only manage this by falling off chair - hit ground with quite a thump but far better to do that than alternative.
Surrounded by loadsa people who want me to get up off the floor. Besset all the time with urge to smash any teeth, skulls, etc can reach, and terrified will manage it. Desperately trying to get them to go away before I manage it, but all efforts to push them away all seem to be bringing more. Hear mother's voice sounding like she's talking to naughty 2-year-old. She can thank muscles of jelly she's still in one piece. They want me to get in a chair - can't balance in a chair - or onto a bed - can't balance lying on a bed. Gotta be on the floor; only place I won't freak out about losing balance on.
Apparently consultant is concerned that lying face down on floor is not good for newly-grafted eye. In the circumstances, does he really think I care???? Eye last of my concerns.
Anaesthetist had asked what to do if I have bad reaction. Had told him: get everyone safely out of range so I can't hurt them, keep everyone away, leave me alone till it passes. So why are there more and more all the time, no matter how much I try to push them away. What on earth happened to the instructions?? - where is he?
..... not far away, apparently, and arrived at the double, got the others to back off, sat on fllor and held my hand. SOmehow he gets me sprawled onthe floor leaning against a chair within set off any worse panic alarms from damaged balance and gets others to put up with this. Bless him. Possibly saved my life, sanity remains to be seen if it can be salvaged.
Well before this stage, totally apparent everything has gone completely pear-shaped. All accompanied by thinking "I was afraid something like this would happen, but this is far worse even than I'd feared."
Consultant standing - upright! - above me, trying to enthuse me by telling me the operation had gone very well. This is so far from the truth from patient's viewpoint, and the state of my eye at that time so totally irrelevant, as to be below laughable. Entire force of bad trip inside wants to smash his skull in. Totally wrecked balance and jelly-muscles mean can only sprawl on floor and cough weakly somewhere near his kneecaps.
VERY VERY IMPORTANT: please don't panic this will happen to you. If you haven't had the same injury as I did, it can't be aggravated in the same way.
So - where are we?
First, if anyone reading this was among those on the same ward that day, my sincerest apologies to you. I can only say that I doubt if you were more terrified than I was.
Five days on, my balance is still shot. I can walk up the road in good periods, but it's very clear that the slightest thing will freak it out totally again. I don't know if I'll ever be able to get on a horse again, let alone when.
The hallucinations - including the vioent murderous urges - keep coming thick and fast any time the conscious, rational part of my brain eases up from concentrating intently on anything else. I had one murder-someone hallucination associated with the original injury and it terrified me; I'm getting, oh, 6 or more a night now. Plus the ones about tearing the new piece of cornea out ith my fingernails, because its arrival has been so horrible its presence is anaethema. Inter alia.
[AFAIK, I haven't actually tried this yet, but sometimes daren't taake eyepatch off in case. I know it is a horrible, horrible attitude in view of donor and their family, which also cut me up, of course. Am going to tell hospital at next check up that I will want it removed some time in the future, because I'd rather have a piece of black bin liner across the opening and my sanity. I am not putting money on anyone having the slightest understanding of this. Well, OK, one person maybe.]
As the anaesthetic after-effects themselves are wearing off, these are getting worse because they're even clearer
I feel I'm stuck in the middle of a (recretaional drug) bad trip and I'm losing my marbles.
Needless to say, I'm NEVER!!!!! going to have a general anaesthetic again.
This feels so much like the "bad trip" I was stuck in before that, if it is coincidental, it is a mighty strange coincidence.
If anyone does know anything about other people who've had any similar experiences, or support groups for people who've had severe reactions to anaesthetics, please, please do let me know.
Thanks to everyone who has read this far. Sorry for rabbiting on so long, and thanks for letting me get it out.
Oh, the eye?! - I haven't really got round to caring yet. I suppose it can't hurt too much, as the drops (which I'm still managing to make myself put in) sting noticeably. It - the BIT sewn in - got a nickname: ****'s Folly. Like those Victorian folly ornament castles like landowners built on the hillsides as monuments to their egos. The hospital told me at the post-op checkup that it has all lokking very good and doing very well, which was all they seemed interested in. Guys, this isn't an embroidery exhibition! - this is someone's life here.
Rosemary

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Re: Good luck to Rosemary

Postby Andrew MacLean » Mon 04 Feb 2008 7:33 am

Rosemary

Thank you for that, and well done! I still have to grit my teeth when putting in my steroid drops: they sting!

It is my sincere hope for you that you have begun a process of steady improvement. There may be an occasional set back, but so long as you average a forward line, you will make progress. Don't give up on the horses yet!

Those eye shields are a great boon. I know that I still wake up with my finger stabbing the shield; I guess that without those plastic shells I might have damaged my eye on more than one occasion.

Every good wish.

Andrew
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melissa
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Re: Good luck to Rosemary

Postby melissa » Mon 04 Feb 2008 8:44 am

wow. what an experience. well done for coping as well as you did. I hope it all gets better for you. My doctor has suggested general anesthetic for my transplant (whenever that happens) which i accepted because i dont really like the idea of being awake. But i should perhaps query this choice? he says I am young and healthy (30yrs old) so it should be fine?
Good luck with your recovery

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Re: Good luck to Rosemary

Postby dweezil1968 » Mon 04 Feb 2008 9:21 am

lots of people have a bad reaction to Generals- i have a few times. To have then the cornea removed deliberately they would have to do a general again- so whats the point? and it s a kick in the teeth for the donors family and anyone waiting for a cornea.
i appreciate that you suffered- but i don't see how this is an answer- and if the cornea is good and not rejecting that would just be a selfish waste- can't see any surgeon agreeing either.
Good luck with your recovery

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Re: Good luck to Rosemary

Postby rosemary johnson » Tue 05 Feb 2008 2:04 am

Hi folks, and thanks for the good wishes.
TO Dweezil: I do - when awake and sane - try to keep remembering the donor and their friends/family! - and dragging myself off to put the next drops in. So far.
Do you - or does anyone - have any stats about numbers and types of adverse reactions?
If there is not a support group/contact network for people who go through things like that, there should be.
TO Melissa: most people prefer to be asleep and know nothing of the gory details! Indeed, many people prefer the nice sleep and and the nice relaxing dozy feeling of being warm and half asleep afterwards.
Or so I'm told. Many friends have been telling me I'm mad for thinking of anything else.
My problems came from the motion sensations setting off an old injury problem when I was semi-conscious. If you've not had the same injury, it won't happen to you the same way, so please don't worry.
The normal reason for worrying about a general, AIUI (nd I am not a medic) is for people who have dodgy hearts. As a healthy 30 year old, your heart should be up to punping blood round even under anaesthetic. They'll do a heart scan at your pre-op appointment.
Do discuss it with your practitioners - but please don't let my experience put you off. Remember, there are pretty self-evident risks to locals too - you have to keep very still or the scalpel could go in very nasty places!
To Andrew: cheers, mate! The horse, alas, is lame, so I couldn't be riding him anyway. The vet came out today, cut a hole in his hoof and let out a load of nasty pus fro a foot infection. Poor chap! He himself is getting very "cabin-fevery" as he's been stuck in his box for days now and not allowed out in the field to graze - but the whole place is so very muddy, we can't let him.
It's going to be a question of who is fit to try going out for a ride first, him or me. Him, I hope - or the poor guy will be in the horsebox to the vets for first Xrays and then an op himself.
Me, I think I'm going to have to go back to the riding school (where the chap I share used to board) and book in for a 10-minute leading rein lesson, like an RDA beginner - get a couple of people to bring (fat lazy) Crystal up to the indoor arena where the surface is flat, level, soft and sandy, leg me up there, and walk round one of each side and tell me it's OK just to plod round, so long as I'm happy there - and if I'm not, help me off and give me a hug and a cuppa.

Phone seems to have been ringing all day. SOme very interesting calls......
My GP is going to refer me to a neurologist, to try to sort out the dodgy balance. Wish me luck. I think it was just coincidental that it was an anaesthetic that I was woozy and incoherent from that sparked this off - that motion sensation could have had the same effect if what made me woozy was a sedative, or a bump on the head falling off a horse!
Interesting exercise now is going to be working out what to put on medical alert armband and in envelope in saddle bag to pwarn ambulance crews if I do fall off and get injured.
ANyone got any experience with concocting such things?
As you'll have guessed, am still feeling like my balance is totally screwed up and could freak out again very easily.
Am trying to keep busy so conscious mind keeps hallucinations at bay. it's getting slightly easier daytime (once awake) but still dread going to bed and having them flooding back in. ANy remaining doziness from anaesthetic rapidly becoming indistinguishable from sheer exhaustion!
Rosemary


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