Quicktopic posts: May 2003

[Janet Manning]

Hi all you folks avoiding the sunshine!

I seem to remember this discussion happening about this time last year! It's a pain and a nuisance, but use it as a new hat excuse. I have a wide selection of wide brimmed hats of all shapes and colours - one or even two for every occasion!!! Baseball caps with curved peaks are especially good as they keep the light out at the sides as well. M&S are doing a nice range for women this Summer as well as the usual ones for the blokes. (no, I haven't got M&S shares, honest!!)

I also keep a selection of sunglasses, including wraprounds, on the dashboard to suit the changing weather conditions.

What with my regular 'eye stuff' - saline, lens box, cleaner, eyedrops (2 sorts, including one in a cool pack) scissors to get into saline, together with regular and reading glasses, in the Summer with hats and sunglasses, I need a rucksack just for eye kit!

Moaning aside, the main thing is that I can now drive again, thanks to sclerals, I'm independent, have come off Incapacity benefit and have started my own business. Having had to leave my job, because of KC and transplants, I'm now doing a job tailored to what my eyes can manage and thoroughly enjoying it - even with my hat and shades on.

So I'm looking forward to seeing a whole bunch of 'cool doods' in hats at the conference on 14th June!!!!
Janet Manning

By the way, have just discovered today that the saline I've managed to get on the NHS is no longer being manufactured - Steripod. This was not as good as Amidose, which is only available from Moorfields, but at least it cae in rigid tubes. The chemist has substituted Normasol, in stupid, floppy plastic envelopes. Once opened, there's no way of keeping any saline left over, so it will be less economical. Anyone else having this problem or been given something better?

[Rob Armstrong]

Hi Janet,
I always get my saline in a squeezy bottle (Bausch and Lombe) from my local opticians. Its available in 2 sizes, 300ml and 500ml I think. I tried out a saline aerosol spray once too, but found it was too easy to accidently shoot my lenses half way across the room.

I've been asked to try out a new 3 in 1 solution for RGP lenses by my hospital opticion called Unique pH. If it works well it'll make life a lot easier than having to use three solutions.

[Rob Armstrong]

Hi Kenny

I too had mixed feelings when I was told I needed a graft last July, as I had never had an operation before, yet at the same time was relieved that something was being done to improve my vision.
The wait was probably the worst thing, I wanted it all to be over and done with, yet at the same time was dreading it. I admit I did get increasingly worried as the day approached, but on the actual morning (last January) I surprised myself at how calm I felt. I was home again by mid-afternoon, and didn't feel pain, more a mild discomfort, which rapidly decreased over the following days and weeks. Having the op made me much more positive, waking up each morning (for the first couple of weeks) with noticably improved vision is a real moral boost, especially after my vision deteriorating so rapidly. It'll be 4 months tomorrow since the surgery, and I am getting better all the time-the hospital staff are very pleased with my progress. It is still only early days mind, I'm back at the hospital in a month, and it will still probably be a few months (at least) before I'll start having my stitches adjusted/removed, and my vision is stable enough to consider glasses.

As for what to expect when you see the consultant, it is nothing to be concerned about. No doubt they'll test your vision and possibly do a corneal topography, which sounds painful, but basically is just taking a photo of your eye, and having it analysed by a computer (it makes a contour map of your cornea). You might have the pressure of your cornea measured, I've had this done everytime since the op, but I'm not sure if i had it done beforehand.

Try not to be too concerned, just remember to ask lots of questions about anything you're not sure about and you'll feel more confident about it all!

Good luck.

Rob.

P.S. If you are wondering what an actual graft looks like, I have taken some photos which my hospital told me are really good. It is much easier to show a picture than explain it. It also makes it a lot easier to explain to family and friends. Just send me an email to robarmo@btinternet.com and I'll send them to you (that goes for anyone who's interested by the way)

[Kenny G]

Hi, it’s me again

Just a small message to thank all of you that have responded to my message

I do have one question, which probably should be at the back of the list when think about KC, but how long after a transplant, can you return back to work?

There’s just load going through my mind at the moment, and I guess Job security is one of things.

Thanks again for all of your messages

[Dawn]

Hi Janet

I cant get the Steripod either, and last time I was given the saline in the floppy tube - I have been storing any left over standing in a cup in the fridge to use later in the day (a tip from the hospital!) I dont think there is another alternative apart from Amidose or an aerosol one (I have asked the pharmasist).

Dawn

[Andy C]

Hi

Im off to the hospital in an hour for a pre-op review - having only being told ive got KC 2 months ago and given no option other than a transplant - needless to say Im worried...

Like other posters here - Im worried I wont be able to drive after the op, and have to travel 80miles a day to and from work ...

Let you all know how I go on later

[aimee.wilkes@bt.com]

Hi Everyone,

Please can someone give me a recommendation as to the best Tear Drops to use ? My eyes are drying out and have been told to get some drops. Any suggestions would really be appreciated.

Thanks

Aimee

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[Janet Manning]

Hi Dawn, Thanks for the tip - will try the cup in the fridge for the stupid floppy tubes!

Hi Kenny,
The outcome of transplants is different for every individual. They can improve your vision, but not always. Mine is much the same with lenses, but worse than before without correction and with glasses. You won't know until after the op what it will be like for you.

Getting back to work also depends a lot on what you do and whether you can use glasses and what the sight is like in your other eye. The immediate recovery time is relatively fast - about a month for me, but there follows various ups and downs while stitches are adjusted and removed. My stitches were not finally removed until a year later. Because I was relying on lenses for correction, each time there was any intervention requiring the further use of steroid drops, I could not use the lens for about a month.

My consultant told me I would be back at work in 2 weeks! But then he also told me to go and get myself some glasses and go back to work. He appeared to have no understanding of the fact that I can only see the top 2 lines of the chart with one eye with glasses and nothing with the other! I was a Uni lecturer at the time doing a 60 hour week so this made things pretty impossible.

I tell you this story to illustrate the fact that eye consultants do not always have much understanding of optometry, though they may be brilliant with the scalpel. The main thing is to exlore ALL possible alternatives before a transplant. I suggest you look back through the messages on this page. You will see that Sue Ingram and myself wage a campaign to get everyone to try scleral lenses BEFORE considering a transplant. I may not have needed tranplants had I had sclerals before the op.

You will probably have to fight hard for a referral to try sclerals. I was told all sorts of rubbish by the hospital optometrist about how awful sclerals are and how I wouldn't like them. It took me 6 weeks of pestering to get the referral to Moorfields, only to find that sclerals are the most comfortable lenses I've ever had, with the best correction and very easy to look after.

Once you've had transplants, you have to really look after your eyes, avoid strain, too much lens wear etc in order to avoid rejection episodes. Although there are people who have grafts which have lasted 30 years, it is better to put it off as long as possible.

Let us know how you get on.

Hi Aimee,
Refresh eye drops from the supermarket or Boots are good and can be put in while wearing lenses.

Hey it's a sunny day and I'm about to decide which hat to wear!!!
Janet

[aimee.wilkes@bt.com]

Thanks Janet !

I have been reading some of the comments about being sensitive to the sun, I mentioned this to my optician and she said that it was due to KC. After reading some of the messages it does seem to be quite a few people who have this problem. I seem to be wearing my sunglasses all the time at the moment !

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[Dawn]

Hi Aimee

I have dry eyes and use viscotears before bed, and when my lenses are in I use Refresh Opthalmic which are preservative free. Can only get them over the counter from the Pharmasist, not off the shelf.

I have really bad photophobia and permanantly have sunglasses on, so your not alone!

Dawn