a view through my own eyes

Back to the hospital again today. This time for the pleasure of seeing the cornea consultant as a followup to the cornea rejection attempt earlier this year.

Whilst I waited for my appointment the head orthoptist walked past, noticed me, stopped and decided to check out how I was getting on – this was despite the fact that I saw her colleague earlier in the week. But who was I to grumble. Cosmetically things look good, so no complaints there, however there is a very slight wobble motion wise when I am moving the eye. This should sort itself out as the muscles and whatnot heal over the coming weeks. Anyway I have to see her again in early July so that is not a concern.

Anyway on to the cornea consultant, he takes a good look round the left eye, then decides to take a good look round the right eye. He then asks whether I am slightly sensitive to light in the left eye – I confirm that I am and that my night vision is noticeably better in that eye. Then he tells me that I am developing a cataract in my left eye.

The good news is that the cornea graft is looking very good and we can say that the rejection attempt is over, the bad part though is that the steroid eye drops (Pred Forte) that sort out cornea rejections on rare occasions cause cataracts.

At this point the head orthoptist appears and the conclusion is, to get the squint stuff sorted out over the coming weeks, then see the cornea consultant in three months at which point we then sort out the cataract situation. The wait for cataract operations is only a matter of weeks apparently.

Interestingly since I saw the optician a few weeks ago, my vision has changed again in my left eye for the better and there is no longer an asymmetrical astigmatism, this is something that we will keep an eye on. The important bit at the moment is to get the squint stuff finished off.

As the consultant put it, when I saw him in September 2005, I could not see with my left eye, and was advised that I would need a cornea transplant and probably squint surgery. Those two parts are done, I can now see with the eye although things are still being sorted out, the cataract issue is he says not really a worry and are straight forward to do. In my case though it may be best to do it under a general anesthetic due to the cornea situation. One bonus though that the consultant pointed out was that they can put a lens in to match the power of the other eye, so at least any glasses/contact lenses can be the same strength.

Still at the end of the day a cataract is fairly quick and easy to do, otherwise they would not have done around ten of them last tuesday when they were doing my squint op.

The good news is that last week I picked up my new glasses lenses.

The bad news is that the left lens is not right, my operated eye appears to have changed a tad. So talking to the opticians it was agreed that I would wait until I saw the consultant (today) and see what he says.

Well the consultant is happy with how the cornea is settling in, eye drops for another week and then I stop. However he did agree that the vision has changed and is not what it was a couple of months ago. So for the moment it is a return trip to the optician to see if we can get a working prescription.

At this point I had to ask what happens if they can’t sort out a prescription as that could well put me back where I started. To which I was told that most keratoconus sufferers (which the cornea op cannot completely cure – but at that point I was beyond prescription of any variety anyway) end up using contact lenses but it is sensible to try glasses first particularly since I have never used contacts.

So opticians again later this month, back to consultant at the end of June and see how we go. Fingers crossed eh.

Just over a week ago I returned to the hospital for the scheduled followup appointment.

The consultant is happy and consequently so am I. I am now over the worst of the rejection episode and although the eye still hurts it is healing well and astonishingly my vision has improved slightly in my grafted eye – though it has got a bit worse in the right eye but that is due to the joys of keratoconus. I do however have to continue to take two lots of eye drops and return to the consultant at the beginning of May to check on progress.

Anyway in a weeks time I go to the optician (that is the earliest appointment I could get) and get new lenses prescribed.

Of course to add to the amusement mrspao has had conjunctivitis for the last week or so – which is 1. contagious and 2. something I absolutely cannot risk getting.

So the last few weeks have been based around a diet of Radios 4 & 5, listening to quite a bit of music and audiobooks (many thanks to mrspao for the Children of Hurin read by Christopher Lee). All of which has been spent in a darkened room and when I have been outside sunglasses have been to the fore.

The last week though as instructed the room has been getting increasingly lighter and screen (laptop/TV) usage has slowly been increased during the week with only minimal problems (must remember to take a mug to work tomorrow so I can keep having screen breaks and having mugs of tea).

In the meantime I would like to thank those of you that phoned, emailed and came round for a cup of tea.

Yesterday saw the return trip to the consultant.

The cornea is inflammed on the exterior layers and is starting to dry out, this apparently is a sign of attempted rejection. The good news is that the interior layers are fine and if they were having issues then things would be more of a concern.

So for now I am steroids to deal with the inflammation every two hours, steroid ointment for at night so I can get six hours sleep (hurrah) and tear substitute drops to help lubricate and rehydrate the eye, these are taken any time it starts to hurt.

It hurts, it hurts probably more than when I had the operation.

For the first time I am starting to worry about it, before and after the op I did not worry as it was a gift of the highest order. Now though I am used to being able to see with my left eye and I really do not want to lose that vision.

I know that things have to get much worse before George is written off but this is the first step on that route and I do not like it one bit.

Anyhow the consultant thinks that the drops should sort matters out and I have to go back and see him in three weeks.

Fingers crossed eh.

There is an episode in Battlestar Galactica (possibly the first), where they are being followed by Cylons. When the fleet does a hyperspace jump they have something like 37 minutes to rest before the Cyclons appear at which point they do another jump and the countdown clock is reset to 37 minutes. After a few days of this the crew are starting to feel ragged and tempers start to fray.

Over the weekend I noticed that my focussing was a tad iffy and that George was starting to ache. At first I put it down to tiredness as I had had the benefit of a few late nights more than I should whilst working on essays for my course. By Monday I had ensured that I had had a couple of really good nights sleep and if anything the eye was getting worse and that bright light was a bigger irritant than usual.

So I phoned the consultant’s secretary as hers is a number which I have been given for anything that could be regarded as an ‘oh shit’ moment. After a couple of calls back and forth and some waiting around I am advised that the consultant is not going to be able to see me but I should head over to the eye unit at Ashford where they will be able to see me.

Getting there I am seen by the registrar who works for the consultant that I see – which is good as I have seen her before and so I have faith and trust in her. She and a junior colleague take a good look, and when I say a good look I mean that between them they spend the best part of half an hour looking around the layers of my eye from the optic nerve at the back through to the new cornea on the front.

Eventually I am given some eye drops – not a prescription – the drops – to save time. I am told that there is definate inflammation in the eye, that the cornea does not appear to be rejecting yet and that I will be seeing the consultant and the registrar on Thursday afternoon as they will make an appointment for me. That if the pain gets any worse to phone the eye unit at Ashford on the directly number that they just gave me and to get it looked at. In the meantime avoid bright light and rest – as apparently I will need it.

Several things about the above struck me as odd: 1. that they spent so long looking in the eye, 2. they gave me the eye drops and not a prescription, 3. that I have an instant appointment made for me on Thursday, 4. that I am not told to wait if it gets worse, that I have to get in contact straight away (subject to normal working hours)

Should I be worried and concerned? Is that a tautology? I don’t know and probably but I really cannot be bothered to look in the OED.

Anyway back to BSG – the drops that I have been issued with (steroids and antibiotics) have to go in fairly frequently – every hour day and night for three days. So my phone having a countdown timer counts down an hour and a klaxon sounds – so far it has been loud enough to wake me up – should I have managed to actually get any sleep. I restart the countdown and bung some eyedrops in.

At the moment I am starting to feel shattered and disoriented. I am struggling to concentrate on anything in particular and my chess playing (against my ageing 1983 model – this was a 50pence bargain at a jumblesale a couple of years back – and is the identical model to the one I had in my early teens) chess computer is almost as appauling at the computer (my better one died when we moved house as the board was crushed – new one has been ordered) itself. Fortunately I am still quite relaxed about this, though I have pondered placing the klaxon sounding phone up Ariel’s arse as she keeps bloody meowing at me.

Mrspao helpfully pointed out that if I could look at a screen for such an extended period (I cannot do much more than 20mins without needing a reasonable rest at the moment) then I would be in an ideal position to watch an entire series of 24 in realtime.

[edit] more detail alert from original version!

Well today was dipping from the fountain of artificial youth day.

Yes I had botox treatment.

The plan is that the muscles behind my left are are tweaked on a temporary basis (a couple of months tops) to see how things work out.

So today I see the optometrist again to repeat the measurements with prisms and to ascertain whether I will suffer from double vision – we don’t think that I will and the measurements came out the same as on the two previous occasions. They then explain the procedure so I know what will be happening.

Then I see the consultant (different one for this job), who explains the potential problems – as he put it the odds of it seriously affecting my eye are at about the same level as a general anesthetic going tits up. Also the reason we are doing this in the left cornea transplanted eye – is that if it does go tits up then only one eye is rogered. So sign off on the consent forms.

So then we wait, its a short simple job so they do several of us one after the other. As we wait the optometrist goes round applying anaesthetic eye drops – 4 in all. Eventually it is my go to be done.

Lying down on the bed they stick in more drops, swab my face with an alcohol swab and apply a couple of electrodes – these allegedly, combined with a sensor on the very big needle go to a box that makes a crackling noise that changes depending on the density of the muscles in the appropriate area combined with the needle.

Anyhow the plan is that the area is numbed, a very big needle is inserted down the side of my eye into the muscle and botox injected and then held in place for around thirty seconds.

Things started getting interesting when I asked if I should still feel the eye drops going in, so they added some more and some more, oh and some more. So gently they poked the side of my eye which I could not feel although I could still feel the drops – which I should not be able to do. After a brief discussion which went along the lines of: if it hurts let us know – we went ahead.

Next stage is to ensure that I cannot close my eye whilst this goes on, the major downside is that I get a ringside seat of the humungous needle and the surgeon peering through mini binoculars strapped to his head. To hold the eye open they use a speculum which fits around the eye and clamps the eyelids open – well it should because it kept slipping loose which was almost a stuff this I am out of here excuse. In the end one of the nurses had to hold the thing still as it was not clamping properly on its own.

So at this point we have a nurse holding the clamp thing still, another nurse who wants to reassure me (more detail on this coming right up), an optometrist applying eye drops to ensure that the eye stays clean and refreshed and another optometrist playing with a box that is wired up to me via the electrodes and the mahoosive needle, and finally the surgeon who from my angle and frame of mind at that moment was the last person I wanted to see.

The needle slipped in most of the way without issue, then it went into the muscle. At which point it hurt, it hurt enough for me to point out that it bloody well hurt – actually I yelled out ‘OW’ rather loudly. The consultant mentioned that he was in as far as need be now, could I live with it for another thirty seconds? So I lived with it, whilst doing the best I could to destruct the bed with my hands that were gripping the sides and gouging into the mattress. The needle came out and to be honest it hurt, I don’t want to think how much it would have hurt without the anaesthetic.

Whilst this was going on, one of the nurses asked me: “would you like me to hold your hand?”! My initial thought was: ‘fuck off you condescending cow’, instead I replied: “actually I would rather concentrate on deconstructing this bed with my bare hands”. She took the hint.

Five minutes later I am off the bed and out into the waiting area with instructions to wait a few minutes before setting off. To be honest there was no way I was staying, so despite the fact I was shaking like a leaf – I legged it and mrspao followed.

So now back home it is late in the evening, my eye is weepy, a bit bloodshot and I don’t think that mrspao has noticed the blood on the outside of my eye. Also it hurts, it hurts rather a bit. The optometrist did warn me that it could be rather sore for a couple of days.

Over the next few days the botox should kick in and my eyes should straighten out. Next week I go back and see the optometrist as a followup to see if it has been successful, in time I can go for full surgery for a permanent correction – that at least will be under general anaesthetic.

All in, I hope that the procedure has worked and that my eyes are straightened out if only on a trial basis, I really detest the panorama vision and mostly I hate the way the vision goes weird when I switch eyes (I just can – I don’t get 3D vision like most people) – this should sort that out as when I switch eyes both eyes move. Most of all I would like to be able to look mrspao in both eyes at the same time.

But as the title said, there is no way I am having the botox done again. How some people have it done on a regular basis I don’t know.

It has been mad of late, being a student part time with uber quantities of reading to do has left me with not a lot of time to play. Still that is my choice and I am enjoying it. More on this another day. However I will no longer mock the humanities students who only have four hours of lectures a week.

Enough procrastination.

Yesterday morning whilst minding my own business George (the transplanted cornea eye) started to ache, then started to water, then the vision did a wierd shift and daylight seemed a tad painfull. This was over the period of a couple of minutes.

That can be regarded as a: Oh shit! moment.

So following instructions I phone the eye consultants secretary and get added to today’s cornea clinic on a need to be seen pretty quickly basis. Then I see my GP to be sanity checked that the cornea is not dropping off and she makes a call to the eye unit at Ashford to sanity check her thoughts that I will live until today.

I did.

Today I saw the eye consultant – who decided to see me straight away and that I could jump the entire queue and not have to sit there for hours and hours.

A good look round the eye, using the pinhole glasses and the snellen chart (the vision is very good) along with taking details of the above symptoms, reveals that I have early stage symptoms of cornea rejection.

That was the second: Oh shit! moment.

However physically it looks very good, the stitches look fine but there is some inflamation, importantly though there is no sign of infection.

So it is back on to large quantities of steroid based drops (Pred Forte this time), for the next few weeks – which should sort things out.

That was the: Phew! moment.

If things do not improve or there are any similar turns for the worse I have to call and get added to the next cornea clinic.

So whilst the eye is still painfull, sitting in a gloomy room means that I am not wincing at the light and the eye is not watering so much. The first lot of eye drops are in and most usefully I am not worrying as I was this morning.

Finally a big thankyou to Mrspao for being so understanding at me being a bit narked for the last day or so.

Well back to the cornea consultant yesterday and another two stitches come out, apparently the others are still nice and strong so we don’t need to worry about them going brittle and snapping yet.

Phew – I really did not fancy having them all out at once, having two out at a time is quite enough thankyou very much.

So once again, back on the antibiotic drops 3 times a day for a week and the steroids for three weeks.

Earlier though I saw the orthoptist who measured and monitored my visual tracking, we then played with prisms to try and force my eyes to look in the same direction at the same time so we can guage whether I will suffer from double vision should they be straightened out.

Eventually she advised me that she will make me an appointment to see the consultant who specialises in squint operations.

So in early August I see the consultant and the orthoptist to repeat the measurements. With waits as they are at the moment I can expect to be under the knife within six months and to have the pleasure of looking like a panda for a few weeks afterwards.

Erk!

Today I noticed a crack in the bottle of antibiotics – arse. So I phoned the chemists and explained I have enough for tonight but not after that. Apparently they will get them delivered to me tomorrow morning. We will see.

Is what I have been repeatedly advised by the eye consultant in the last few appointments.

This morning on the way to work I noticed that my eye was sore, not in a gouge my eye out with a teaspoon way but in a really gonna piss me off way.

So I played the game of fight the automated phone system, I won’t go into detail but I think on Monday I will need to check that the phone is still in one piece as I was poking the buttons with a slightly more than moderate level of enthusiasm.

Once I did get through to the secretary I explained the situation and was advised that she would call me back shortly once she had got hold of the consultant. Five minutes later I am advised to come straight down to the hospital as he wants to take a look at it.

Twenty minutes later I have struck gold on free roadside parking and am in the hospital, the clinic is packed, I have a book (Watership Down by Richard Adams – review coming soon) and go and check in. Ah yes they are expecting me, take a seat.

Five minutes later the consultant calls me in, much to the obvious disgust of the other patients who may well have been there for a good hour or so waiting to see him.

The consultant takes a good look round, pronounces that there is a bit of inflamation, that the graft is looking really rather good and that I did absolutely the right thing in phoning in and coming in. He then says that he wants to take a look at the refraction stuff and so he swears at the computer that does the corneal mappings whilst he convinces it to work, all the time grumbling about lack of NHS funding.

Once the mapping is done, he says that one stitch was worked its way into being quite tight which probably explains the inflammation and the soreness, so that is going to come out and whilst he does that he wants to tug another one out as that should improve the astigmatism.

Ten minutes later the stitches are out and I am in a heap on the floor. Apparently I passed out just as he finished – which as he put it was most odd as I am one of his most relaxed patients for stitch removal. Still a couple of nurses fussing over me made it worth it.

So for the time being I am back on the antibiotic drops 3 times a day and the steroid drops three times a day, reducing down to once a day over three weeks.

Oh and the eye bloody well hurts now.

But the good thing is the cornea is not being rejected, the pain I can live with, the loss of sight would be more of a challenge.

A trip this afternoon to the opticians and thence to the eye consultant has been productive, more so than I expected.

I now have a prescription for George (left eye with the cornea graft) from the optician and instructions from the consultant to get lenses made and start to use the eye.

As far as the eye goes, fourteen stitches are still in place and will be staying for a while. There is still some astigmatism but its not bad by any means, removing stitches now whilst the new cornea is still bonding could have three effects: 1. the astigmatism could get considerably worse (most likely) 2. the astigmatism may get better (least likely) or 3. no change at all (probable).

So for now the stitches stay, however they do have to come out at some point preferably before they start to go brittle and snap of their own accord. As the consultant put it: “Its easy getting them out before they snap but we don’t want to affect the astigmatism, if we leave it too late then it will take hours to get them out and will be quite painfull for you”.

So they are going to be left for three months and then he takes another look. At the same time I will be seeing the opthalmetrist (sommat like that – google and dictionary are failing me at present) who will look at the motion tracking etc so the consultant can then decide what muscles to tweak etc behind the eye to straighten it out.