Corneal Graft

[Alice Blue]

I thought I might add some remarks of my own about provate care as my husband had his graft performed privately although not at the Moorefields.

As he was on a general private ward post -op the nurses didn't actually have much experience of eye operations and had to keep referring to the eye ward.

Since then, whenever he has called the hospital when worried he has been seen, the next day or so but is treated like a bit of a freak as the staff haven't seen a graft before. Getting hold of his consultant is a little more difficult than in your experience.

Also, just lately he has had problems getting hold of his drops - actually a factory problem which is hopefully rectified now.

I think he wishes he had chosen to go to the Moorefield now but as the consultant was available locally he didn't.

Private is not necessarily better, just different.

[jayuk]

Alice

I completley agree with what you said at the end

"Private is not necessarily better, just different."

If you have not done your research on the unit performing the Operation, and where you shall be placed Post-Op it can prove a little awkward...

Also, on the same point, you may have misinterpreted my explanation on going private......the whole reason for it was because the time frames were around me and not vice versa. The very same people who worked on me, are NHS staff; barring the personnel in the post operative ward........just wanted to clear that point up....as I got the feeling from your words and way of writing you may have thought I was putting down NHS medical personnel.......thats definately not the case....!!!

[ChrisK]

Thank you Jay and Alice,

I must say I am impressed with how quickly you were seen Jay.

May I ask one more question?

How do you found out how successful a hospital and indeed a consultant is at performing the operation?

After reading your post, I realise I really need to do some research myself but don't know how to go about it?

Many thanks again
Chris

[jayuk]

Hi ChrisK

To answer your questions

How do you found out how successful a hospital and indeed a consultant is at performing the operation?

You cannot. Unfortunately this is a grey area which Opthams can sit under. See; a consultants view of a success is a clear cornea with no rejection. My view on a success of a cornea is; clear cornea, minimal astigmatism, no rejection, 20/30 or above visual acuity either correction (glasses/contacts)


After reading your post, I realise I really need to do some research myself but don't know how to go about it?

Realy hard to tell you how. When I embarked on my graft one thing I did know was that the person I wanted to do it had to be known in the industry and also performed a minimum of 300 grafts. I basically did the following

1) met with four well known consultants
2) asked them of there experience and how many grafts tey performed
3) got there resume from the web and observed what they had done
4) met them again, and talked further and also spoke with my long standing optician whom is well known in the industry.

TBH there are only a handful of top tier Opthams in the UK..probably no more than 15. Few of these are at Moorefields and the rest all over the UK....but thats my opinion.

But this may not be necessary, there are many who have just gone the usual root, referall and then just let any consultant perform the graft....so dont feel that this is a must......I just really couldnt risk any screw ups......especially if I latter find out I could have avoided it....if you are going to be seen by a respective optham in an eye unit than stay with it tbh

[jayuk]

Hi

Thought Id give all an update

Saw specialist 3 weeks early today as on Monday I had come to the conclusion that I am in serious trouble!..Not with the graft but with my other eye...

After having tried the following in the past 3 months AGAIN

Sclerals
SoftPerms
Intra Lymbals
RoseK2
Soft K
Soft K w Piggy Back
Kerasoft
Kerasoft w/ piggyback

my left eye is basically useless. It will NOT tolerate a lens and thus technically I am now blind. Not a good position to be in......basically I have tried every avenue with the unoperated eye and I only have a few options left which I am pursuing this week, ar a DALK graft.....howoever this I cannot do until my current graft heals!

So saw the specialist who removed a stich which altered the vision.......however still cannot get decent vision (as expected yet). However good thing is, if its good, is that when i slightly squint I can see near perfect......however thats not the solution now. I cant put a lens in ths eye as its still healing so.....am in trouble to say the least!

Have to inform my work of the current situ I guess....not sure whats gna happen..may take sick leave or may leave my job ....not sure what to do right now......see how this week goes.

Foned Moofrefields to tell them of my problem and could I bring my appt forward.?..did they understand or did they listen?....NO....did they understand that Im blind?...NO.....
did I even get a coherent response? NO.....did she even care what I was saying NO.........therefore I foned Ken at his practise to take up his services Privately

Today I saw the good Ken Pullum at his practise who tried every possible thing he could however we just couldnt get any decent vision even with a scleral bearing on the cornea....last resort has been to take an impression of my eye of which a lens will be available on Thursday (why the hell ths all cant be done at Moorefields I dont know!! - well I do....the bloody system sucks!! - but thats a complete different story!...bloody inadequates running the show I tell you!!)....Im just grateful to Ken who tried his level best today and hopefully something can come to avail on Thursday......just good to see some people out there who actually care and know what we go through as KC sufferers!

Well thats all I have to say at this stage.....not a good position to be in!....and Id think for the next 3-6 months Ill probably have to live life semi blind.....and just feel complete useless from not working or not doing things I do in my usual life!.......I know there are ppl out there worse off.....beleive me......but I guess when it happens to you it kinda makes you realise what we take for granted.......last 7 days I have walked about the house with No vision......and its been sooo difficult!........

Have a few hopes this week.....if they work...and can give me even vision of 6/18 or 6/24 I can operate!.....so here is hoping!!

But Ill win in the end!.....

Down but not Out!!...............

[Sweet]

Aww Jay i really really feel for you and completely sympathise after being pretty much blind for the last five months myself as you know. I am sorry that nothing has helped so far and am really hoping that this impression works for you. Sadly it never seems to be the right time to have a graft, and i am going to be in the same place if my right gets any worse, although with a lens on my now grafted eye i didn't get much vision before anyway, so was there any point in waiting?

Yes i also know entirely how the waiting goes, and have seriously thought about putting my appts at Moorfields on Ebay as i now seem to have a few too many!! Haha i wonder how much i could get for them! LMAO, am just joking but you know it is unfair i think that patients can't change and swap themselves. Wouldn't it be easier to give mine to someone else as it is too early and swap it for one in a few months?! I know that if i cancel it i will be on the bottom of the list again with a three to six month wait. Hhmm ..... obviously this is too much common sense!

Please look after yourself and i'm not even going to go into what you can do with yourself, as boy have i heard it all now. I still think that there is NOTHING near normal you can do as i've managed to get myself run over by a car, slice my fingers opening a tin, burnt myself countless times making a cup ot tea and fallen over nearly every piece of furniture we have! But i am hoping that you don't get into as much trouble, and that your grafted vision improves soon. Am excited for you on that one as i know yours was a few months before me so know mine will get there soon!! LOL!!

Take care and wishing you all the best
Love Claire X x X

[Drew Radcliffe]

Hi Jay

Thought id return the pearls of wisdom as you dish me out so many - ta.

I got to the stage last year where I couldn't work and wondered what my options were. In the end my employer run out of options and made me redundant. Reluctantly I have had to claim benefits to survive, Im retraining to be a physiotherapist right now so I know ill be contributing again soon.

I am glad I waited and stayed working as long as I did even if some days I sat at my desk and listend to my walkman cos thats all I could do. Because I did I have been able to claim on my mortgage protection insurance and get enough survive whislt I fix myself back up.

Because of my other eye conditions I know I have to be in for the long hall on this. Its very probable that not even a graft would sort my eyesight to a point where I can be independant again.

I see no value in jumping ship at work just because it feels right. Your conditions and your employment is their problem and not yours.

Take it Easy

Drew

[jayuk]

Drew

I hear what you are saying...but its like Ive been at the top of my Game in the field of IT im in and have good recognition...yet over the past 15 months due to vision issues I cant do the reading, research etc that I know made me get to the stage of my career where I am at......thats whats the part that kills me. Since my graft I have been into work about 6 times......thats 6 times since May 6th........rest of the time I have been workign from home.......that must sound excellent to most....and beleive me it is...but I know that there is only so much I can do from home!.......and I also know that it will affect work and perception at work of my absense. .....its just a wierd feeling hard to describe......guess kind of like being a perfectionist......and yet right now I know that I cant do certain things like read small text, or do things as fast....hell even sometomes see the test!??!.....

It doesnt help that my work is 2.5 hour drive each way lol....so even by train its gna take me the same rougly......

But I do hear what you are saying...I will not make any hasty decsioons....and to date my Employers have been good.....they dont know the full extent of what my eye condition is but they do know I had a graft..............

Just need to see how this weeks goes.....with Ken and also with another reverse geometry lens fit with the Intra Lymbals.....then thats it....game over.....id have tried every dam last thing!....so its good to prepare for the next stage I think and expect about 3+ months of not being able to work.....if that does happen I think Ill go off sick.....

Its a funni old game!....game of two halves lol

Sweet - thats for the message....indeed all I can do is wait for the graft to heal...and hope for the best.........having spoken to the consultant I think in this case he may allow a lens to be fitted in the 6-8 month range...which would be November or January.

With regards to Moorefleids I am writing a letter to the Chief Optom there this weekend....outlining my issues and concerns....was given some names to take this up with and I am going to now. Its just unacceptable to be told that I cannot be seen by someone for 3 months when I am now legally and tehnically blind!....its a failure of service!....and you know why this happens?..because its NOT a clinical emergency........IF for example I had a rejection episode...id be seen that same day!.....however IF our KC gets worse.....and in MANY cases if it does the lens becomes useless and we are blind......we are told to wait anything from 1 to 5 months for a appt........how the hell does that work?.......

It costs more to support a person who CAN be "fixed" yet has to wait X Months, than it does for them to be seen sooner and let them get on with working and going about there lives.....its just soo poor!......

[Sweet]

Jay yes it is all c**p and i agree with you. i have only been back to work myself for two weeks in the last five months, which as we work twelve hour shifts only relates to five days. I honestly think they have forgotten i even work there! It is not quite the same though as you are top at what you do, but still i did train for three years to be where i am and it's hard that i am out of work again. Hehe, on working at home? No, i don't really intend to do that like you are, as it would mean bringing some patients home with me for them to sleep in the spare room lmao!!

The whole Moorfields issue is rubbish, and i have gotten into enough trouble over that one. I didn't write to anyone though so will wait to see how you get on! I think this is one of the reasons i went private after all, i mean i have spent enough of my time sitting in their casualy dept as it is, i don't really want to live there anymore! Also i think unless it is an emergency and you need to be seen straight away you might as well give up now, as the long wait you will have for an appt is unbelievable really.

I get annoyed with the whole thing, as while work are very understanding i know full well as i work some agency shifts myself, that they are paying an agency nurse four times what i get to work for me! How rubbish is that?? The NHS keep complaining that there isn't enough money, but surely it would be more cost effective for them to get me back to work, as i know the dept and the staff, unlike an agency nurse. Gee, i give up as well!!

Really hoping that you get something sorted though. Keep us posted.

Love Claire X x X

[John Smith]

It really is a shame when the only thing between being blind and having good vision is the system.

Still, I'm glad to hear that you've managed to get round it, and wish you well.