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[Pauline Houke]

Thanks everyone for your support I really do appreciate it. Do you really think the specialist would be going ahead with a graft if he thought there was an alternative?
Jay you asked how was my sight with the lens in andby some standards it's probably poor but apart from driving it isn't stopping me from doing most things I just adapt. I can only read to third line on the chart with the lens in. Reading books and paperwork is getting more and more difficult but I'm managing. I use computers at work most of the time and thats easier than reading paperwork. I suppose the question is for how much longer can I manage. The KC has apparently progressed very rapidly.
I feel pathetic. Until this I was quite a confident person. I'm running my own business successfullyand have a lot of people relying on me, but as soon as I get into that hospital I change completely. I listen to everything I'm told but question nothing! I kinda have the attitude that they are the professionals so if they say this should be done or that should be done who am i to question it!
Sorry for going on but I need to get it of my chest.

[Sweet]

(((Pauline)))

Ok TIME OUT!!!!!!!!!! I just have to say something here hun and im not being hurtful. But hun who are they?? Yes, they are very highly trained and have seen many patients and this i am not judging for a second. But you are not just a patient. You are unique and very different to every other person with KC who attends the clinic!

A song comes to mind here by Gem, not sure if you have heard it? Its called 'They' and it questions why we do the things we do because 'they' said to? Who are they?? What is right for one person is not always right for someone else!

I know it is hard to ask questions, we sit there so timid and think that they know exactly what they are doing, which dont get me wrong they do! But we need to be kept in the picture here as well! At the end of the day when you leave the clinic this is your eyesight and your future and you have every right to ask questions! I do not think you are pathetic, far from it, but i do think that you are needing some advice and answers as to whre you go from here.

I never used to ask questions either and im sure that many here have been in the same position. I went along with everything said to the point of having a graft, until terror overtook me and i couldnt go through with it! And then i woke up to the fact that this is MY choice and i took a lot more interest in the condition and what to do about it. Now i think i ask too many questions and im sure that many optometrists reading here are glad i am not their patient!! LOL!! But we do need to be proactive and ask and judging by the many pm's i get here thanking me for saying what they cant i guess i am talkative for a reason!! LMAO!!! All doctors, dentists, optometrists, surgeons etc are there to give us answers as well as treating us.

Please hun im not saying that having a graft is the wrong thing for you and that you are being pushed into it. I am sure that those treating you have thought it through and this is in your best interests. The only worrying thing i see here is that you havent come to think this and so until you are sure that this is in your best interests please ask and learn more. You are more important than anyone else here (i mean as a patient being treated not as a member of the board!! LOL!! Eeek quick correct it before someone tells me they are hurt!! lmao!!!) i really hope that you can go into surgery if that is what you decide knowing that it is what is needed and is the best thing to correct your vision.

Take care and if you want to chat anytime you are free to pm me.

Loads of love, Claire X x X

[Sophie Bull]

Hi Pauline,

I had a graft (full depth) back in december (im only 22), I too had lots of central scarring, lens just wasnt cutting it anymore and then i had an incident of hydrops. I continued to question my consultant right up to walking into the theatre, but for me it really was the only option left, just had cloudy wihte vision and my other eye was ok but also getting worse. Personally for me the graft has been brilliant ( I gave it a nmae..she is called cornelia! and without her I wouldnt be getting anywhere at all!) But with her I have managed to keep going with uni, I had it half way through my third year and now im just about to finnish..two exams and a dissertation to go!

The op itself was fine and the recovery really not very long, some friends that came to visit the day after and i was back at home they were so surprised to see me up and about and looking fine! keep talking to peolpe about how you feel and maybe sit down and go through any other available options with your contact specialist. But as nervous as I was, it has all been fine for me..really did not disrupt my life and although it takes a while to build your confidence up after it and you get a little uber paranoid for a while..still am now whenever it feels slightly odd, but its all been ok so far.

If you have any specific questions, please ask and if I cant help im sure others will.

soph x

[jayuk]

Pauline

Bacause the "Consultant" says it...does not mean it is true....and that there are not other potential solutions. I know that sounds really bad..but its true........there are those consultants that are aware of cutting edge tecjniques and new ways and there are those; sadly more; that are not as up to date and thus are keen to recommend a graft.

Sophie - What do you see now?....how long before you got a lens? or glasses?

[Lynn White]

Pauline.......

Your post has galvanised me to anwser once again on these boards.

What can I say? You have to ask more questions. Any surgical procedure is a major undertaking. Despite scarring..if you are getting along fine with what you have...why chance providence? A graft is a MAJOR undertaking which should only be considered if your life quality is drastically reduced.

If you are fine.. then carry on with what you have now. If you feel your qualily of life is unnaceptably reduced by carrying on as you are - then go for the graft.

Whatever you do - do NOT just let this happen to you. I have no idea of your circumstances but your posts imply that you have been offered a graft when you personally feel you are OK at the moment.

This could be due to you not accepting that you are as bad as you are.. OR that the hospital thinks it is doing the best for you and assumes you know what they are doing.

I do not know what is the correct situation - but I do know you have to have some control.

Please PLEASE do not go ahead without more information! You owe it to yourself and no self respecting NHS staff member would be upset at you asking for more details!

Just ask!

Lynn

[jayuk]

Lynn

Good to see you post here again!...and hope theres going to be many more!!!

J

[John Smith]

Pauline,

Here's a thought for you.

Your consultant thinks the time is right for a graft. Your consultant is most likely a surgeon. Surgeons are more likely to recommend surgery, as it is their own speciality.

Now, your consultant may well be correct - in my case my cornea was too scarred to have useful vision any other way with that eye; but I asked all the questions I could think of, and my other eye is now happily coping with a scleral lens, and I've now been told that I no longer need a graft for the second eye, as I'm doing so well with the scleral.

Just remember that surgery is the last resort. It can't be undone. So if you've tried the other options, then fine. If you're concerned about the surgery (which is only natural) then ask questions, and try other solutions first if appropriate.

Best of luck, and please let us know how you get on!

[Sweet]

Hehehe im sorry but i pushed someone here into coming back to post and im sure that it didnt go unnoticed!!!! Hehe maybe we should have a petition!!!! LMAO!!! Ohhhh ... i cant be that bad ... i am sweet after all!!!!!!!!!!!!!!!!!! And i know i am dead now so gonna run away quick!!!!!! HELP im being chased!!!!!!!!

Seriously though i did it to show we care about what happens to friends here and i didnt twist an arm too badly!!! LMAO!!!!!!!!! Just wanted to help and i hope i didnt upset anyone.

Love Sweet X x X

[Susan Mason]

Hi Pauline

Have been thinking about you and wondered how you were doing?

You can private message me if you like or the offer of a chat still stands.

best wishes and look after yourself

Susan