Quicktopic posts: Jul 2003

General forum for the UK Keratoconus and self-help group members.

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Steve Jones

Postby Steve Jones » Thu 24 Jul 2003 10:32 am

Hi all.
just a quicky to say that I have recently been told that my eyes are not up to driving standard. ( in fact the opticion was quite blunt, even though i could of been relying on a car !).
All our eyes and focus levels are different, so some people are allright with glasses and some are not. Our eyes focus is flutating so somethimes we are ok , some days or minutes not. Best thing is to be patient and wait till after your fittings for glasses or contacts and see if they come up to scratch or driving standards.
Most importantly is that we have only one pair of eyes, and if we have to have frequent eye tests to see if they are alright then we are doing the responsable thing. ask a blind person if we are the fortunate ones. if we had a full health check as often as an eye check, we would be all healthier. Have patience, and good luck all.

Janet Manning

Postby Janet Manning » Thu 24 Jul 2003 6:04 pm

I totally agree with Steve, both about having patience to see if sight comes up to driving standards and about being better off than someone who is blind.
Post transplant I couldn't drive for nearly 2 years and decided that if I never drove again, I would be able to afford quite a few taxis on what I saved NOT owning a car!!!
I've written this before on this page, but it's worth repeating. My GP told me that if you are involved in an accident and found to be below the required level of sight for driving your insurance is void. In a worse case senario, this could lead to total financial ruin. It was this thought and the fact that I could not live with myself if I was responsible for injuring someone or worse still a fatality, just because I insisted on driving with poor sight, that kept me off the road.

I took a DVL test before driving again and have a letter to say I've passed, but that it remains my responsibility to monitor my sight, which I do at each hospital visit. I count each month I'm able to drive as a bonus and do not drive in situations that I know are problematic for me i.e. in the dark on unfamiliar roads.

I know it's hard to contemplate giving up driving, especially when your work relies on it. I had to give up my job because of it, but it's better than ending up in Court.

No one says you have to be able to see to ride a bike!!! I bought one when I couldn't drive, fell off a few times, but it made me feel mobile and independent!!! I did stick to quiet roads, the park and cycle tracks though.

My advice is try sclerals - they got me back on the road.
Janet

Andrew Thomas MacLean

Postby Andrew Thomas MacLean » Fri 25 Jul 2003 6:04 am

Hi Karen

Let me know how you get on. I've still not given up on lenses. The specialist at my local hospital is trying various different options to see if any of them will give me the correction I need.

Nul desparandum!

Andrew

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>From: QT - Karen <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: Thu, Jul 24, 2003, 3:15 pm
>

< replied-to message removed by QT >

SueB - Hertfordshire

Postby SueB - Hertfordshire » Fri 25 Jul 2003 9:46 am

Hi everyone,
There appear to have been a number of postings in the last few weeks from people with KC who have recently reached the stage where they can no longer drive. I am one of those and would be interested in discussing this further with others currently in a similar position or anyone who has now overcome this restriction. Is there anyone else out there who would like to meet in the chat area to exchange experiences, ideas etc? Contributions from the 'experts' at Moorfields would also be welcome. If you are interested in taking part please e-mail me (SueBurbidge@aol.com) and we can agree a date and time. Thanks

Philip - London

Postby Philip - London » Fri 25 Jul 2003 11:53 am

With reference to the following website and a number of others around. Can anyone advise when the NHS/moorfields or any other UK (Or European) hospital will be offering corneaplasty as a treatment for KC?

http://www.supervisioncenter.com/future ... plasty.htm

Im managing just to work and drive (with lenses) but are getting more intollerent.

ISTA Pharmaceuticals are in the latter stages of FDA approval and that should be all complete by 2005. If I have to I'll be 1st on that plane to the USA!!

Sue Ingram

Postby Sue Ingram » Fri 25 Jul 2003 1:55 pm

Hi Philip (1878), You mention that your tolerance of lenses is getting less and less. I am assuming this is corneal lenses? If this is the case, then you must try scleral lenses. I wore corneals for over 20 years, eyes had enough, now have sclerals and they are the best thing since sliced bread for comfort - wish I had had them earlier! Definitely worth a go. SUE

Gillian

Postby Gillian » Fri 25 Jul 2003 2:09 pm

Hi Philip - I also now have scleral lenses after wearing corneals for 30 years and started to get problems. I have now worn sclerals solidly for a month and after getting used to them - which took time - am delighted with them. I can drive and also swim in them - no dust gets under the eyes either . I intend to go back to corneals and mix and match and this way my eyes have a break from having a lens on the cornea - sclerals don't actually touch the cornea - that is why they are so comfortable - they only touch the white of the eye. Having two types of lenses is like a normal non KC person having a pair of glasses for tired eyes. Good luck

Eleanor Fry

Postby Eleanor Fry » Fri 25 Jul 2003 3:14 pm

in reply to Sarah (1859):

I would definitely speak to your consultant and see if there is any alternative to the Pred Forte drops you are using at the moment. If you explain the situation to them they may be able to advise you that you are only likely to need to use them for another 12 months or something.

The only eye problem I had during my pregnancy was that in the early weeks I found it hard to wear my lenses (RGPs) for any length of time, I understand dryness of the eyes is quite a common side effect. By about 14 weeks this had sorted itself out. As far as I am aware my graft hasn't been affected at all, however, I am due for my annual check up at the hospital next week, so will drop you a line again if the consultant spots any problems.

Take care,
Eleanor

John Smith

Postby John Smith » Fri 25 Jul 2003 6:25 pm

It's now been just over a month since my cornea started rejecting again, and as I saw the consultant again yesterday, I thought I'd give the group an update.

My rejection episode was "simply" four clusters of white blood cells lurking underneath the cornea. Three weeks treatment with FML drops at four times a day, and another two at three times a day and the rejection has stopped.

Of course, the cornea has changed shape again, and I've now discovered that I can see <b>much</b> better, but only if I tilt my glasses forward to an alarming angle. In fact, with the new cornea, a scleral in the other eye and both eyes covered with tilted glasses I could correctly identify some of the letters on the bottom line of the chart!!! I don't remember <b>EVER</b> doing that before, and I've been wearing specs for 29 years!

John

John Smith

Postby John Smith » Fri 25 Jul 2003 6:29 pm

Hi Philip,

Corneaplasty has been mentioned around here before. I think it was called "Keraform" then. The website you linked to was very interesting, but they're certainly marketing it as a LASIK replacement, rather than for those of us with KC. Of course, those vain people who just want to avoid wearing glasses would, commercially, be a far larger market than us.

Personally, I think the idea sounds fantastic, but like LASIK itself, we may find that our thin corneas just aren't suitable.

That would of course, be a great shame.

John


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