Rainbows Revisited - OH NO!!!!!!

[rosemary johnson]

Very annoyed today.
Went to a committee meeting, in the home of one of the cttee members who has cats.
Asthma in overdrive, wheezing madly, thought the "reliever" inhaler was hardly keeping pace with the tight chest.
Had to go out midway through and sit out by front gate before chest seized up totally.
ALso had to ask cttee if we could deal with my bits first and go home - asthma gaining on inhaler and thought if I stayed longer would need ambulance.
Cats been a problem for years, but not this bad for ages and ages (I vist this address for meetings quite often). And a couple of weeks ago, it seemed the asthma was better under control than it had been for years, and was only needing th reliever inhaler once every other day or so.
Cross and worried. Can't wait for next hospital appointment to have Full And Frank Discussion about changing eye drops again.
Has anyone else eever had eye drops that upset their asthma????
Rosemary
Cross and very worried

[matty_matt]

Hi Rosemary.

I got your PM - re: rainbow edges - and replied tonight (Tues 2nd Sept.) but the message-relay seems a bit vague. Did you get my reply?

(Matty_matt)

[rosemary johnson]

Yes, I did, thanks matty-matt. And I've replied.
Lungs feel a good bit better today - not too keenon having to dig out a load of soaked straw bedding.
Duke had been put into a different stable from normal, with straw rather than wood shavings, and had knocked his water butt over.
I arrived to find him standing in a mess of soggy straw and mud, thirsty and bad tempered.
Bad back nott too pleased with this job, either. And I thought some gentle pulling up of poisonous weeds might be good for it.
eye much the same as ever.
woke up this morning having nasty nightmare about That Certain Surgeon..... I suppose it would have to happen some time.
Rosemary

[rosemary johnson]

Back to hospital for follow-up appointment this am.
This has been a really, really horrible couple of days!!!!!
First,t he technical details:
- IOP in grafted up up to 28 again - this deemed TOO HIGH (normal up to 21, was 36 when first went to A&E with the world going misty a month ago)
- other eye is 13 - actual figure not thought particularly meaningful due to the KC, but it was 12 last time so hasn't changed much at least.
- cause of high IOP blamed on steroid anti-rejection drops, so been given a different, milder type.
- also got two different new types of anti-rejection drops - to see if those have less effect on the asthma.
- don't wear the new contact lens again until further notice
- come back in a fortnight's time and see how the new drops are doing.
I'd steeled myself to ask questions, for the first time ever since the graft op, about how it was doing in general, and what that actually meant. Apparently it is not rejecting and is healing ok - but not very explicit details.
That's the dry details - and enough for me to be rather fed up about it! However .... here's the rest.
Been having some more of those "bad trips" again in last few days - not quite hallucinaiotns, as don't really "see" things - other than the pattern on those stupid nightie things!!!!! But mostly variations on a theme of being back in (a) hospital having some unspeficied other operation and it's all starting to go pear-shaped again ... in a variety of ways.
Was lying awake ost of last night having waves of these.... not all the time, but coming back in waves - or else sitting up sobbing wanting to cry but tears wouldn't come.
Shall spare you horrible details.
Needless to say, not feeling in exactly a good state for getting to a hospital after being awake ost of night with that!
Spent nearly 2 hours sitting in waiting room - a paltry instant in the scale of NHS waiting rooms!!! I hear you all cry - desperately trying to read a book and keep the "bad trips" at bay and not burst into tears in the middle of the waiting rom area.
This is not me!!!!!
What's more - thought I'd seen the last of those with cutting down drastically onthe steroid intake, having identified that as a trigger. SO what brought this back?
Was ling awake inthe throes of them last night and wondering this. Stupid, ridivulous, and just want I do not need! Don't think it's a steroid reaction - and don't know what other substance to suggest. Yet it felt very familiarly like something sweeping back in from somewhere. Like that old overwhelming force grabbing my brain.
Can only wonder if it is the high pressure itself - whether directly triggering something, or by pressing on something that was itself pressured, hurt, triggered or whatever y operation and as a result is triggering all the meurones to create immediate post-op situation.
No idea if this is really possible..... but I suppose it's some incentive to keep remembering to put inthe dratted eye drops.
Eventually called in by, not my new consultant but..... well, I don't actually know who she is or where she'd fit in the organogram! I'm sure she's pretty good at eyes, and eye pressure, and what to do about high levels of the latter......
....... but when I was practically birsting into tears again over her slit lamp, however atypical this is, a response of "I don't be dealing with this now, I've got other patients to see" is less than entirely helpful!
Rescued by nice young woman receptionist, who after I'd been crying over her reception desk while she had difficulty booking me an appointment at as little as 2 weeks notice, got me a drink and a complaints leaflet, managed to get hold of the idea that attempting to call in PALS ould only double every pressure reading going (!!!!), and said that "the doctor you saw" couldn't come and talk to me again now because she'd y then gone off to lunch.
And said she'd put a note in my notes that i wasn't going to see that woman again.
Very very pissed off about all of this, not to mention shiver and shakey.
Eventually shook dust of the place off the jodhpur boots and got out to Essex to see Duke.
Even managed to get enough resolve together to brush him off, saddle up and go for a little potter round the adjoining fields. Nothing very adventurous..... bt at least didn't fall off again, despite feeling pretty dizzy.
Unpacked and started all drops. Will have to see what effect thy have.
Stiff whisky, chocolate cake and anything else comforting very welcome.
Rosemary

[cclman]

Good luck you have been through a lot and I hope it gets better! have some cake or drinky poo. I have not had any booze for 2 weeks but I have eaten lots of cake to cheer myself up so don't feel guilty. Ill have a virtual drink with you, cheers

P.S if you ever notice any change and suspect drops or pills are causing a problem always tell the Dr asap. I think your instinct will tell you as well as your eye or eyes This forum is great resource!

[Andrew MacLean]

Rosemary

I think that high IOP is a fairly common result of steroid use following surgery. Like you, when this happened, they took me off the original steroid (dexamethasone) and put me onto a new one (Prednisalone).

All the best with this; you know that you are in all of our thoughts.

Yours aye

Andrew

[Barbara Davis]

OH NO indeed. What a miserable day. Stiff malt coming up.....

Love and hugs,
Barbara

[rosemary johnson]

Thanks, guys.
Got woken up this am by phone call from "financial services" salesman and realised it was 9.42. SO must have slept a lot better. Like, right through all the alarms and Today programme....
Felt much better without the "bad trips" - but a bit like the day after a migraine - the headache has gone the sickness has gone, but just eel all totally washed out.
Got out to 1. riding school to talk to someone who's doing an equine massage training scheme and watch her massage one of the riding school ponies, and 2. to our field to see Duke, pull up lodsa ragwort (!!!) and get some peace and quiet and sunshine in the open air.
Yes, heightened IOP is a known risk of the steroid drops they use as anti-rejection drugs. WHich is why they've been measuring it 9th eIOP) every appointmnet. The person I saw on 2nd trip to A&E didn't seem too worried about it when theit went down the first day.
But when it is creeping back up again after a load of drops that are upsetting the asthma, and making the eye itself red and itchy, that's a bit of a bummer.
ANd having the bad trips wading back in is a real bummer - and makes one wonder how much more of this stuff there might be to come.
The new steroid is one called Lotimax - made by B&L who also make the solutions - sorry, Lotemax, active ingredient loteprednol etabonate which is another corticosteroid, allegedly less strong (dexa is a prtetty potent one, and also long alsting, IIRR).
I'd never heard of it; haven't yet looked them up but will.

The other ones are Lumigan, active ingredient bimatoprost, which is a prostamide; and iopidine, active ingredient apraclonidine hydrochloride which is an alpha agonist. The former increases the amount of fluid in the eyethat is drained out and the latter reduces the amount of fluid produced.
The eye certainly felt vry very dry when I woke up this morning, and very sore with it.
These are apparently "2nd preference" as the first preference would be beta blockers - but they can't give me those, as my asthma inhalers are betas and betas and beta blockers would cancel each other out....... in fact I'm using three different types of betas as I can't rely on steroid inhalers which are more usual, becasue they give me hallucinations again......
Am trying to convince myself that there was once a good reason for deciding to go for this op - bookin git in the first place, I mean, rather thanwhy on earth didn't I put my coat back on and walk out on the day, which I'll always regret.
Incidentally, the person I saw at the hospital yesterday seemed to think that the highest priority need for reducing the IOP was to prevent the pushing-out effect from damaging the transplant! - I'd somehow got it into my head the biggest risk was damage to retina and optic nerve......
And, of course, in my case, the possibility that it is the high pressure itself somehow setting off the bad trips.
Very fed up with all this....
Rosemary

[rosemary johnson]

Well, here's the latest.
I'll try to be positive..... and start ith the good news: early impressions (bearing in mind it's likely to take a few days to work through fully) are that the new prostaglandin analogue (pressure-reducing) drop is having less of a bad effect on the asthma than the previous one.
Obviously enough, without the little box gadgets that fit on the slit lamps, I can't measure the pressure muself so don't know how it's doing.
The really, really, really bad news is: something in one of those new drops - or a combination of them - is psychoactive; they're giving me "bad trips" again.
Put in the evening drops on Friday, brushed teeth, etc, went to bed - and was lying in bed and could feel it "wearing on" - just like I could feel the adrenaline in the dentist's jab wearing on - and the... things... welling up.
OH NO!! OH NO!!!! OH NO!!!!!!!!!
Still trying to fight them down on the tube on way into London on Saturday morning before gruop meeting - but easier then as more other things to think of.
People who were in the pub after the meeting will have heardabout this...... and special thanks to Sweet for her professional knowledge.
Prime candidate believed to be the anti-rejection steroid - it's supposed to be milder, but it's a different one, not the same one I've got hardened to and of which 2 drops a day are a vast reduction on recent shock overdoeses....
Will ring hospital about this in the morning .... meanwhile after more thought on discussions-in-pub, decided I wasn't brave enough to try the really "scientific" way, so reverted to the old steroid drops from last night.
Did sleep better and went out to Plumpton races today.
WIll have to see what hospital say. Really don't want to have another trek to A&E......
Really, really, really fed up with this!
meanwhile, the drops that reduce eye fluid production are clearly working as I've been waking up with my right eye feeling as dry as the Sahara and nearly as sandy - indeed, with all that side of my face feeling dehydrated and horrible. As have had problems with dehydrating so badly, this pretty unpleasant.....
Been trying to watch the horses today in glorious stereo, ie. using both sides of my big binoculars. easier said than done - the left eye side I can focus as usual with the big adjusting wheel inthe centre and will adjust for closeness/distance - but the image looks fuzzy by comparison to having once got the right eye side in focus.
There is a single eye adjustment onthe right lens that's supposed to compensate for one's eyes being different strengths - but it will not adjust far enough for my extremely short-sighted grafted eye. Nor will the binoculars as a whole adjust enough to focus them for the right eye on anything more than about three-eights of a mile away - and the far side of a racecourse is a lot further away than 3 furlongs.
Ig I get the best focus for the right eye, the left sees very little and tends to shut up, and more than about half a mile away, everything goes fuzzy. If I focus them for the left eye, and adjust the right eyepiece as far as it will go, the right eye picture is ... well, not too bad compared tot he left eye picture, but the combined result is rather odd!!! - and after a while my brain starts to complain about having to try and make sense of it all.
But at least if I do try to look down both sides of the binocs, I do see one rather odd picture.
WHen I first started trying to do that, I used to see two (similar but not quite the same) pictures, overlapping.... and they'd wander around relative to each other....
Very surreal!
And sometimes, ig I concentrated hard enough, and wasn't too tired, the two pictures would after a while very slowly start to wander closer to each other.... and suddenly, click! there was just the one single very odd-looking picture... so long as I kept concentrating like mad.
Totally weird.... and I promise you, I hadn't drunk a drop of alcohol!
HOnestly!! (One can lose enough money at the races when stone-cold sober.)
As in:
Q: how do you make a small fortune out of racehorses?
A: start with a large fortune.
Rosemary

[Hilary Johnson]

Hi
I'm still following this, but I'm now kind of lost for words, besides being in headless-chicken mode as this is Freshers' Week and loads of new students to look after...

I'm glad the transplant itself seems to be OK, but I dunno what more to say about these hallucinations or whatever they are. Do the medics have any theories? Or are they still trying to get you to see a counsellor?

I guess the telesales person who phoned you at 9:42 didn't make a sale...!
H