corneal graft..

[Sophie Bull]

Hello,
I am currently waiting for a corneal graft in my right eye. I was initially planning to postpone it until I had finished my degree in the summer. However since then I have had a bad case of hydrops and my left eye isn’t getting any better so im now going ahead with the graft as soon as it is available.

Yesterday I got a letter for a pre-op appt this coming Tuesday. I presume this means the graft will not be far off. I wanted to ask people here for any advice on questions or specifics that I should ask. Obviously I have a few of my own but if anyone can think of helpful things they wished they had asked and only thought of after etc. that would be really appreciated.

Thanks
Sophie

[nawty]

hi sophie, i had mine done yesterday and am so glad i did. now i can get on with recovering. i asked all the usual questions but the biggest help of all was that there was one other guy called duncan who had the op with me on the same day and he was from my home town so we helped each others nerves and settled each other down the whole time . it was great for this reason. we even shared a lift home and are going to be in touch for this reason. maybe you could ask if you are the only one on your day. i know this isnt a phisical question about the op but duncan reallymade me almost forget about it and vice versa. cheers dunc if you are reding and good luck sophie

nawty

[GarethB]

First thing is get a letter from the soecialist detailing what you have had done to your eye so that the university are prepared for meaing special arrangements if you need any for exams and any missed course work.

I started my degree in 1989 just after havingone graft and the second in 1990 when I started the second year. With a letter from the specialist, they were really helpful, especially as I was studying environmental microbiology!!

It is just making the lecturers and tutors aware of any limitations you may have so they can be taken into account. I am sure they will be as helpful to you as they were to me, I got my degree in 1993 and post graft, KC has never held me back.

Good luck.

Gareth

[Kim Remmington]

Hi Sophie,
Well I'm up for a graft as well. I'm terrified. I'm hoping to time the graft so that most of the recovery time is over the Christmas school holidays. I'm really worried about not being able to drive, as its a good 15min car drive to school, with no bus route. My children are 5 and 8 and I don't want to send them off in a taxi by themselves. Does anyone know how long I wont be able to drive for.
I seem to have so many questions flying around my head at the moment. Hope all is well with you and your appt. goes well.

[Susan Mason]

Kim

I am sorry I can't answer any of your questions as Ihave no experience of a graft however I am sure you will get some replies from others on the site.

It is your childrens ages that interests me, my little boy is 7 (8 in March) and before his birth I had no KC or was not aware i had it. I wondered when did yours start?

Best wishes with the graft.

Susan

[John Smith]

My children are 5 and 8 and I don't want to send them off in a taxi by themselves. Does anyone know how long I wont be able to drive for?

Hi Kim,

The answer is of course "it depends". It depends on a lot of things, largely the unoperated eye. If your vision is good enough to drive legally with the one eye, then you could find yourself behind the wheel in a couple of weeks post-op.

Please feel free to get in touch if you want.

John
john@roundel.net

[Kim Remmington]

Hi Susan
I was diagnosed when I was about 22, 23, and had my daughter who's just turned 8, when I was 29. I do remember still wearing glasses after her birth. Since then I've gone through RGP, Softperm, RoseK, Piggy-backing and now Sclerals. I cant remember it getting worse after the births, or if they affected it in any way. I've never really linked the two together. Do you have a nightmare in the morning, getting your lenses in and having to get them ready for school. I get up 2 hours before I can put my lenses in, then of course they never go in first time. My poor children are desperate for me to have the operation as they think I wont be spending hours in the bathroom trying to get my lenses in.
Hi John
Thanks for the reply. I'm in a bit of a muddle here on which eye to get done. My right eye is rubbish and at the moment with a scleral in, I can only just make out the first letter on the chart. However my left eye has all the problems with the lens fitting. I cannot get any saline to stay in the scleral, as it doesn't fit properly anymore and trying to get decent vision out of it is a nightmare, as I do rely on this eye. I have been waiting for new lenses but their having problems making it, they were ordered at the end of August and I still haven't got a date to pick them up. Obviously I'm dying to get these new lenses as it really is my last chance. I do have to say that I LOVE sclerals. They are the most comfortable and wonderful lenses that I have ever had. If the new lenses work, then it would be an easy choice for me to get the right eye done.
I have tried going round the house with my sons pirate eye patch on (I can't believe I'm telling you this) and found that with my right eye out of action I could see better. But to drive with one eye terrifies me. I don't know if I would be any good at judging distances, and would I have a massive blind spot. I'm also terrified of not having all my senses totally working whilst I'm driving as 2 1/2 years ago, someone crashed head on the me at 60 miles ph when I was taking them to school. I'm still on pain killers constantly for that and the children are scared about having another crash. So to drive after the op. with 1 eye worries me.
Anyway sorry for going on.

[Susan Mason]

Kim

It was Nov 2000 when I was told I had KC, I was 32 and my little boy was 3 1/2 years old. I initially didn't need lenses until May 2002 and when RGP corneals were tried and found to be of no use to me I too moved to sclerals. For about 11 months I had few problems with them, other than those you describe. Having to be up at least 2 hours before I put them in and them not usually going in first time however, I sometimes wonder if this is due to me panicing as to if I will be late or not. On days when I don't need to be anywhere I seem to have few problems and also if the lens goes in first time ok I then worry will I get an air bubble just as I get in the car or start work.

When I had no useful vision with lenses or glasses between Sept 2002 and May 2003 I was lucky in that I could walk my little boy to school. It took a lot of time and I could not see where I was going however with no major road to cross if I held his hand tightly i was ok going, it was coming back by myself that took some time. Other peoples comments were quite annoying, watch where you are going etc if only! Then I was visited by the Visual Impairment Team from the hospital. They were not much use but did suggest they could find ways around things for me if I did get any better vision. Maybe the school or your hospital can offer some support. The last thing you want to be worrying about is how you are going to get them to school. When at work I did for some time have a taxi take me and did manage normally to get the same driver, maybe you could look into that or I seem to think that they have after and before school clubs around here that will take children to school, maybe you have something similar where you live.

I hope you get something sorted and all goes well with the op.

Best wishes
Susan

[GarethB]

Do not worry about driving with one eye, but I would say find a quiet industrial estate and start slowly and build your confidence.

I was racing semi-professionally in 1988 - 90 with effective vision in one eye!!! I passed all the health checks to get my race licence. The RAF were surprised I passed there tests too

My sight has changed in my right eye now and the problem I have is pretty unique for someone who has had a graft, so since March 2004 I have been driving with just one eye. On the 1st August the familly went in our 30 year old car to Silverstone (decided not to go on track) before going on a trip to the Nurburgring in Germany, a 14 mile race curcuit where I did four laps reaching a max speed of 110 mph! Total journey was 1120 miles in five days through a total of 5 countries. My wife was the only one who knew I could only see out of one eye, no one else new.

It can be done safely and I think if you know you are relying on one eye you drive safer looking further ahead and taking in more of the surroundings.

Now I can see with both eyes, I am having to get used to driving that way, so far I have avoided rush our, today will be my first test on the school run.

If you pass the sight test to drive with one eye, it is only you that knows if you are safe to drive. If you are unsure, do waht I did when I first had a graft and went to one eye for a while; I booked a driving lesson just to make extra sure.

Good luck with the op, it is not as bad as you might think, I've had grafts in both eyes. As John says we are all different, but be positive, it does make a differance.

Regards

Gareth

[Rob Armstrong]

I was told the legal limit for driving is 6/9, and apparently only required in one eye.

But I still remember almost failing a driving test before I'd even gotten into the car because it took me about a dozen goes to read a number plate down the road. That was back before my KC was even diagnosed!

I still sometimes find myself reading number plates as I walk down the street to test myself. Even though my consultant told me I'm legal to drive, I doubt I could read one at the required distance if I ever had to do my test again.

PS: You'll probably think this is stupid, but it might help someone:

For a while I had seen people mention their level of vision on here (Eg. 6/9) but had never been told mine at the hospital.

Anyway, the other day it dawned on me (here comes the "duh" moment) - there's 9 lines on the chart! I'd always assumed there was 10 for some reason (how would I know any different? - that end of the chart is unknown territory!)

So all you need to do to find out your level of vision is count the number of lines you can read and put a "/9" on the end - simple!

It only highlights the limitations of this system though - it doesn't take into account the quality of vision.

With my left eye and a RGP lens I can get 6/9 when fresh - but there's a halo around the light box and the letters are double. While with my grafted right eye and glasses I reach the same line but the light is white not yellowy, (with no halo) and the letters are really black and sharp - with no double image. A massive difference to me, but they get the same score - how crazy is that?