hello i am new

[nicola jayne]

hello all. I am Nicola I am 25 and i was diagnosed with KC 4-5 years ago.
I had clinic 3 weeks ago and they have said i need the graft in my right eye as the left is getting much worser quicker than they thought . and that they would do my left in a few years. I am having it done under GA and am quite nervous about it. Any advice would be really good. how long off work can i have a pretty eye patch ETC.
I am in Llanelli south wales dont know anyone else with KC I also have tourettes which can also be fun LOL

BBL have to do some more work BOO

thanks
nicola

[jayuk]

Nicole

Welcome to the forum!

Have you been wearing Contact lenses? How well do you see with contact lenses presently?

Depending on the state of your KC, a graft may or may not be necessary!

With regards to the Graft itself, its pretty underwhelming; however the recovery period can be very long and cumbersome depending on the success of the graft

J

[John Smith]

Hi Nicola, and welcome to the forum.

Don't worry too much about the graft, they are fairly straightforward these days.

You won't have to wear an eye patch after the first night (which will be the bandages), after which you'll be given a clear plastic eye shield to stick to your face whilst sleeping or being around young children.

Time off work can vary, depending on your eye and the work you do, but it's often about 3-6 weeks if your job is not at all physical.

Please tell us about your eyes, as we'd be interested to see how you got to the ready-to-graft stage.

All the best,

[GarethB]

Hi Nicola,

Welcome to the forum.

The first thing I would like to ask as a promoter of grafts is have you exhausted all the lens options?

I mean have you gone throughRGP's, Rose K style, soft perms, piggybacks and sclerals etc?

With the lens options available now it is possible to offset surgery for more than was available to me 20 years ago.

The trauma of a graft is scary, but not as much as you think. Your eye will be a bit tender for a couple of days and you will have a patch at night. Avoid washing too near the eye for a couple of days or so. Eye drops at regular intervals. Ibuprofen or paracetomol as and when if it is uncomfortable. Mainly while you get used to having stitches in the eye. Some are a single running stitch, others favour single sutures in which case you could have upto 20.

Time off work is very much suck it and see. Depends on what you do for a living aswell. If you are making good progress about a week, some take about a month.

Rather than an eye patch you are more likely to wear sunglasses as many are photophobic for a while after eye surgery.

Hope this helps.

By the way, is the Millenium Coastal Park any good where the old power station used to be?

I was the site chemist trying to make the contractors do the right thing with the asboestos I found buried there. Leave it buried, it was safer than digging it up and sending 500 truck loads of ash potentially contaminated with asbestos through Welsh towns.

They fired me although I worked for another company they contracted as I refused to put corperate profits ahead of public safety.

Regards

Gareth

[nicola jayne]

Hi again
well when i was first diagnosed they gave me a hard gas permiable contact lens. I tried that for 2 years but could not tolerate it at all. I have been struggling with glasses for the past 2 years.the last year tho it's got really bad. KC only started about 2 years ago in my left eye but it is developing quite rapidly. my right eye's vision is like opening your eyes under water in the bath. cant see anything out of it even with my nose right next to the pc it's still all blurred. My left eye can see writing on the pc from about 2 inches. This is quite a strange way to explain i know sorry . but with my glasses on i can see it from quite far away away.
driving in the night has become a nightmare because of the headlights on other cars. and it makes my head and eyes hurt .
I work as an assistant scientist in an environment agency lab so i work with chemicals and fine powders and things, so dont be wanting to get acid in my eye LOL!!!
LLanelli costal park is nice was there on the weekend.

nicola

[Andrew MacLean]

Nicola

Welcome. Is your surname French? if so then bien venue!

I have nothing really to add to the posts, except to say that you may still have some lenses to try before you go through surgery.

There are more to try than RGP's: Sclerals, Kerasoft, soft-Perms etc. In the end, after everything elsxe, there is always the option of surgery.

As to time off work post-graft, I thought this was going to be a negotiation, but my ophthalmologist hadn't got to that page in the script, so he wrote to my GP and suggested that he sign me off for six weeks. he was anxious that I might get caught up in the excitement of Christmas parties and put some strain on his embroidery. (he was probably right, but I hope you won't tell him that!)

All the best.

Andrew

[Sweet]

Hi Nicola and welcome to the forum!

It is nice to see a new person from Wales, i'm from Pontypridd which isn't far from you but moved to London two years ago to work as a nurse. I really love it here but there really is no place like home!

I have had KC since the age of 14, am now 29. I never saw anything with my left eye rather like you described with just a blur of colour. I tried lenses but a few years later with too much scarring i had to give up and i couldn't see much with one in anyway. So i carried on with RGPs on the right and only had real problems last year. Then i found my lens a nightmare with pain and a constant redness and so tried piggy backing. Have you tried this? Where you use a soft lens with your RGP on top, i find it a lot more comfortable and my eye is rarely red. It is worth a try.

There are many lenses around but indeed if you have come to the end of the road a graft is a good option. I had one on my left eye six months ago and while i can just about see three lines with pinholes it is going to take a long time to settle and my sight to improve.

I was absolutely terrified of surgery and had a GA. Everything though went really well and the pain was very minimal helped by paracetamol. You just have to take a lot of care with the stitches and there are many follow ups but everything is ok.

Are you going to get a graft done at the Heath in Cardiff? My last consultant is from there and they do have a number of KC patients.

You are welcome to post as many questions here as you want, someone is always around to answer. Take care and wishing you all the best, Sweet X x X

[nicola jayne]

thanks for all your help and advice you are all lovely !!!!!
this is the first time i have ever talked to people about it. only ever doctors ant optition.
i will be having it done in a hospital called glangwilli not cardiff.
my surname is infact greek cypriot (owen bit is welsh tho LOL) the hubby has never been out of wales LOL
thanks
all
nicola

[Andrew MacLean]

Nicola

I was trying to say your surname with a french accent, but it is much easier with a Greek one (even if my Greek is about two thousand years off 'modern')

All the best

Andrew

[jayuk]

Nicola

I would discourage you from having the grafts until you have tried other lenses.....Andrew gave some examples of lenses that are available which may actually suffice in getting your vision back up to functioning standards!

It would be worth mentioning these to your consultants / contact lens fitters

J