UK Keratoconus Self-Help and Support Association

Hi Board,

I have been waiting for a graft for just over six months now, It is apparantly due in early November. So now is the point where I am starting (for the first time) to think about the practicalities of what is involved.

A couple of questions...

I am having the surgery here in Sheffield, does anyone have any experience of a graft performed here ?

What precautions should I take before the appointment ?

What will happen to me, what might i expect to experience ?

What about afterwards ?

What about workwise, I do a deskjob, and stare at a PC all day, will i experience any problems, what should I do to make things easier ?, What should I tell my employer ?

Also, I am due to take a driving test in early November too...(I *might* need to cancel it!), and this is another area of concern.

Does anyone have any experience of taking a test and having to explain your sight to the examiner ?

If any other people with KC want to get in touch who live in Sheffield, would be great to hear from you.

Thanks for your help

Jonathan

JD

Welcome to the forum!

Can I ask you a quick Q? How long have you had KC and what vision hav you been getting aidied and unaided?

To answer your Q;s

What precautions should I take before the appointment ?

Speak with the consultant for the ultimate answer to this; but just ensure you arrive on time, are calm, maybe have someone with you, make arrangements to get picked up, ensure that you wont be doing heavy lifting for at least 4 weeks post -op..etc

What will happen to me, what might i expect to experience ?

Here is a detailed Log which covers what I went though which may help here
http://www.keratoconus-group.org.uk/for ... .php?t=417


What about afterwards ?
A number of checkups / visits, around 10-15 in the first 12 months, and then one every 6 months for another year, and then Yearly checkups....Lots of drops in the initial 3 months to administer in the eye. Take things easy, try not to get stressed and worked up, take plenty of rest in the first 5 days...etc

What about workwise, I do a deskjob, and stare at a PC all day, will i experience any problems, what should I do to make things easier ?, What should I tell my employer ?

Same here....I was back at work in around 5 -10 days.....it all depends on how you feel and the recover. I would inform your work place at the earlies that you are going in for this procedure..as you will need to also take the odd afternoon off here and there for checkups....

Also, I am due to take a driving test in early November too...(I *might* need to cancel it!), and this is another area of concern.

If its too close, Id be inclined to cancel this!...I am now assuming you can see adequately now?...

Does anyone have any experience of taking a test and having to explain your sight to the examiner ?

To be honest, theyll suspect something and ask if you fail the initial "read the numberplace"..but it may be wise to mention your visual acuity...if you think its below par....and obv if it isnt to driving standards...than I guess your already on shaky grounds..

Finally - Graft is for Life!...I hope you have made an informed opinion and are comfortable in going ahead with this; and have exhausted all avenues....

HTH

Jay

Hi Jonathan,

Welcome to the forum.

1) Surgery in Sheffield; Can not answer that sorry.

2) Precation wise is as you do now if you wear lenses in that make sure you do not get any infection as you will do thsi any way post graft. Basically good hygiene is enough. Some here recomend multivitamins and a healthy diet too.

3) You will probably be in surgey for about an hour or so and may be out the same day. Your eye will be sore afterwards for a week or so and you will have loads of drops to put in your eye. An eye shield will have to be worn at night and you will probably be light sensitive for a few days at least.

4) Depending on the type of graft you may get instant improvement or it may take longer. Recovery is very much a case of how long is a piece of string. Full recovery can take 18months to 2 years. However stable vision so you can wear glasses again and see Ok can be as quick as 3 months, usually about 6 I think. If you have single stitches, some will be removed periodically to help keep the astigmatism to a minimum.

5) Anyone working with a pc should have a VDU assesment and always take breaks every 30 minutes for a couple minutes. I have asmall glass of water which lasts about 30 mins plus I have a timer so my break is a trip to the kitchen for a top up or a trip to the loo Working with VDU's lowers your blink rate so you do not circulate tears as much so this may become more apparent post graft. Ask the surgeon about lubricating eye drops.

Tell your employer and occupational health and HR what you have had done and keep them informed of hospital visits. On the homepage is an employers leaflet, print a copy for them as it explains about KC. Do not rush back to work, follow the doctors orders.

6) If your sight in one eye is not upto the legal standard you should of already informed the DVLA. Bottom line however is that as long as you can read a number plate at the required distance and you do not have impaired peripheral vision you should be OK. If in doubt, contact the Driving Standards Agency who are resonsible for driving tests, instructors and examiners.

The closes I have had to this experience was last Christmas when the hospital were going to give up on my right eye. At that point I was clinically blind. I re-took my Advanced Motorists Test (already passed it 5 years earlier) and did not mention my sight impairment (DVLA knew) and passed with flying colours. It was not until the test was over the examiner found out I was blind in one eye at the time of the test and that was only after he asked why i was retaking the test.

Hope this helps.

Regards

Gareth

Hi

Thanks for your reply...

I was diagnosed about 4 yrs ago, but had been wearing glasses since 1993, with worsening eye sight.

I only wear a lens now in the left eye (the right wont accept one these days!). With them I am fine - I struggle a lot with irritation though when taking out/putting in and I do struggle with spotting road signs / reading number plates.

Without the lens, I cant perform at work, I cant read in bed without holding the book really close and then only for a short time. I cant see anything on the optitions eye chart.

I am completly comfortable with the idea of having this surgery done, as I think that ultimately it is the only thing that can help me.

I am keen to get my driving test done before I go under the knife though, as I've heard sight can be initially worse afterwards, plus I've been learning since God were a lad...

With thanks
Jonathan

Hi

Thanks for your thoughts too Gareth.

Thanks for pointing me in the direction of that employers leaflet, I doubt my employer will make time to read it and will view it as being a chore...but I might try it. As for notifying HR, well thats me !, so i *think* i've done that LOL....I dont intend to go rushing back to work either (!)

Previous optitions and the current surgeon I saw said that my eyesight was such that I ought to manage, but that the instructor might need to get his tape measure out (!!).

How should I go about notifying the DVLA?

With thanks
Jonathan

Hi Jonathan,

With respect to driving, it is a legal requirement that you notify the DVLA of your condition, and also it's a good idea to tell your insurers too.

As far as the DVLA is concerned, they will generally ask your consultant/optician what your visual acuity is like; if they're not keen on the answers all they'll do is send you to a driving test centre and read a numberplate anyway.

There are many things to consider about going back to work after a graft. After each of my grafts I was quite photophobic and couldn't stand to look at a PC screen for more than a short while. Also, you may experience headaches after the graft. I was terrible after my first graft (PK) but in little pain after the second (DALK).

Don't feel pressured to going back to work until you feel ready; you may want to consider going back for just a few hours a day inititally.

Jonathan

Are you any further forward with your appointment? Still listed for early November?

Andrew

Hi Board,

I am actually, I have my pre-op assessment on the 23rd, and surgery will follow sometime after...

Jonathan

Jonathan

All the best.

Andrew