UK Keratoconus Self-Help and Support Association

I was refered to the hospital by my optician and gp, the appointment is tomorrow, so what now? there was talk of rose k lenses. Will I get my lenses tomorrow? Or am I right in thinking there is more to it than that?! I just want to know what to expect and what to ask. Also is there anything likely to be done that would affect me driving home afterwards?

Hi Donna,

If this is your first visit you are correct, there is more to it than that.

You will be seen by the specialist who will probably refer you back to the opticians in the hospital if they have a specialist department.

Then it is probable they will either have a go at fitting lenses or ask you to return in a couple of weeks for a proper lens fitting. They will try a couple of lenses to see what gives the best vision. So at least a month, possible two before you get lenses and then the weight of the lens can cause the cornea to change shape slightly meaning you need a refit. This is quite common as each persons eye react differntly to lenses being in.

Take a freind, make a list of questions and get the friend to write down the answers and anyother information you get. It is quite probable you will get information overload.

Good luck.

Hi Donna,

I hope I can help having been in the 'hospital system' for a few years and recently changing to a new hospital after a move t'up North.

First of all, don't panic. *All* the hospital doctors and staff I've met over the years have been really nice and know what they are talking about - they see KC a lot, be it with lots of different patients or the same patients lots of times

Secondly, take something to read with you. I find it helps to pass the time as you very rarely get seen at the time, or within 5/10 minutes of your appointment. If I don't feel like reading, I just people watch

When you get called in you'll normally have all the usual tests that you've had in the past at your optician and case notes will be started on you. You will also probably have (although I havent had this myself) a test to check the topography of your eyes to show the irregularity of your KC (where the cone or droop are).

If you are suitable for lenses you may well then get fitted with some trial lenses to check fit. These lenses probably wont work for you visually (as in they wont have any power) but they will check the fit on your eyes - fitting lenses for KC can be really hard because of the unusual shape that comes from the KC.

You may be asked at this point to sit for a while in the new lenses to see how you react to them and see how they settle on your eyes. This can take about 20 minutes but differs depending on what lenses you are fitted with.

The doc may then add some die to your eyes (cant remember the name of it) which reacts to UV light so that he/she can check the fitting of the lenses.

If the doctor seeing you can find suitable lenses he/she will then order them for you in the relevant power and sometime in the near future you will be asked back for a fitting.

Note that the first set of lenses the doctor fits you with, even the 2nd, 3rd or 4th may not be the best - its trial and error with KC to find a good fit and everybody is different. What works for me wont necessarily work for you.

As for questions i'd ask everything and anything you want too, and be sure to tell the doc if you are unhappy about anything. Be truthful about comfort too, as it is often is the case that the lenses look great to the doctor but feel like a stick of rock in your eyes - dont be afraid to complain about discomfort.

And for driving home I'd make sure you have a plan b. Generally i've been able to drive home after visiting a contact lens fitting (just end up with sore eyes mostly) but i've started using public transport just in case. Its easier than parking too!

Anyway, hope this helps. Good luck, dont panic and go with the flow.

Ed

Just found a set of notes from a presentation at work.

1) Do not drive to the first appointment; if dilating eye drops are used on you, everything will be too bright and too blured for the next 2 to three hours!

2) Dilating eye drops will also mean you will not have a trial fitting for lenses either.

This may not happen, but best to be prepared, take public transport or get a lift from a friend.

Yes, I cycled home after one appointment when I'd had dilating eye-drops put in and it was very unsettling. I also couldn't work (read computer screen) for a couple of hours. Don't remember anyone mentioning not to drive, but you certainly shouldn't!
Jack

In my experience a referral to a hospital optician was the first step towards many years of goo corrected vision. With some outstanding exceptions, high street opticians tend not to be very experienced at fitting KC eyes.

In hospital clinics they have it down to a fine art; if you get on half as well as I did, you have a lot to which to look forward!

Andrew

Thanks for all the replies! I knew I would get good advice here. Just glad the site was back up in time,I had a few worrying moments over the weekend! I will take the bus and my mp3 player, plus some coffee money. I will of course report back tomorrow night I am sooo nervous!