UK Keratoconus Self-Help and Support Association

Hi guys,
The whole way I view my KC and treatment thereof has just been up-ended today...

I have mild KC in my right eye (6/36 and double images). The left is worse, I cannot see an eyechart beyond a series of white rectangles and see 16 extra images. I have been using rgps wich give me something like 6/6 and 6/9 but there are a number of problems:

1. I am really struggling to get more than about two consecutive days lens wear even using non-preseerved solns. Hayfever has been a major problem in this.

2. For my work I really need to get 12-18 hours regularly to be allowed to do the full range of duties. Being unable to do so, I have had to forgoe any chance of career progression and will very possibly loose my job altogether.

I recently attended my NHS eye hospital with respect to my lens wear problems. The Opthamologist is minded to keep going with the lenses. he is not at all keen on C3R and luke warm on intacs. Grafts he tells me arre for "blind or nearly blind". Although, he is very sympathetic about the career issues; he would rather keep plugging away with the lenses. Although I respect his training, knowledge and years of experience; I was a little disappointed because I do not feel that I can rely on lenses, they always let me down when I need them. I also work in a fairly rugged and very wet environment, so I am always worried about loosing the lenses anyway.
Despite all this, the advice he gave me and the stuff I have read here leads me to accept this corporate wisdonm: stick with the lenses!

This was all turned on its head today.

I attended a Naval Hospital Eye Clinic today in Gosport. I work for the Royal Navy and we manage to double up on most NHS specialisations, with our own doctors. The purpose of the visit was obstensibly to define the how the Navy would deal with me long term, ( am looking at possible discharge in November)

However, I was bowled over when the opthomologist strongly recommended a graft. His thinking was this:

-The chance of rejection is very low.
-I will probably get better eyesight and for years to come.
-In my left eye at least: what have I got to loose?

I was amazed at his very quick decision and clarity of judgement. Apparently the individual is very pro-active and has actively challenged Navy policy on these kind of issues all his career. He was the first for example in the Navy to use Laser eye surgery (not for KC). I ahve to say, I am excited by the idea, I never thought it could be on the cards. He will get my Doctor to refer me to Moorfields or Birmingham with his recommendation. He thinks because the Navy will fund it, there could be less resistance. I am worried that when I get to Moorfields / Birmingham I will get the same response as Gartnavel?
Is this a forlorn hope I wonder? My KC is not as bad as those who typically qualify for grafts and there are obviously risks. On the other hand, the current strategy will almost certainly loose me my career and the option of lots of others in similar fields.
Without inflaming the contact lens debate (please), I wonder what the reaction to this is?

Hi Matthew,

This is an interesting one and after following your (recent) story so far, i'm intrigued to follow it from now on so keep posting!

I've had a similar story recently where two specialist's opinions have varied wildly.

I've been unable to tolerate lenses and I'm now to wearing just one. After seeing the same specialist for years, and numerous contact lenses in that time, on recently visiting a new specialist my journey with contact lenses was abruptly stopped (as in no more alternatives) and a few consultations later I am now waiting on an Intacs op (which I too am excited about!)

So it will be interesting to see, as you suggest, what Moorfields/Birmingham have to say. I think I am lucky here in Leicester as they seem to be pro Intacs as my only other alternative would be a graft, which at this point in my life still scares me silly. Unjustified/irrational panic maybe, but still scarey!

No doubt you'll get some opinions from the others here on grafts.. Anyway, keep posting!

Good luck too!

Ed

Hi Matthew

My right eye has always been very good with a RGP. My left eye was grafted 20 months ago at Birmingham. I don't think the KC was severe but I was becoming increasingly intolerant to my lens and I had scarring right on the crucial point. I too needed good vision for my work.
My consultant convinced me to have my transplant by saying "you have no reason not to expect a very good outcome from this". The outcome has been excellent, so far. I have just received a lens for this eye and the vision and comfort are great. But it has been a long haul and is not a decision to be taken lightly. Please do not think if you have a graft that you will not need a lens, many people do, my vision is still terrible with specs.
I hope it works out well whatever you decide.
Keep us informed.

I dont know anything about grafts/intacs etc I am very very lucky in that I get excellent vision and wear times with my lenses,( its still early days for me ) I am heavily relying on them everyday though but can wear them with no probs despite having hayfever. But I know that I would do anything no matter how scary to keep my vision. Your job is important to you so go for it. The specialists have their own opinions but its your sight at the end of the day and you have to go with what you think is right.
Good luck

Thanks for your comments. I will keep you posted. Your thoughts and ideas have been very helpful as usual.
I think I am going to push for it. Having a consultant back me up in my request has got to be good news. I still have to go through the NHS system and I am little worried I will be frustrated in the end. Nevertheless, I see this as an opportunity. It remains to be seen where this road will take me but as has been said, if you have a chance to get good eyesight, you take it; knowing there is risk that it won't happen and that it is a long road. That said, there is a 100% possibility of missing the shots you don't take!
My only concern now is how the NHS consultant will react back. It looks like I have gone behind his back for a second opinion, which is not the case. Actually, I went for vocational advice and got a second opinion instead! I see my normal consultant in a couple of weeks. I am unsure how to handle it but I will have to tell him. He may not like it... I have to put my eyesight first in this case. He is a really nice guy too and very professional. Obviously, professionals don't always agree and we are kind of left in the middle, wondering which one to believe....

Matthew,

As long as you remember that having a graft is not the be-all and end-all; you will probably have to wear contacts or specs post-graft, but these should be easier to fir afterwards.

Yes, it sounds now that you were in the same situation as myself. I've got nothing to lose in that eye, so why not?

My consultant told me that she wouldn't operate on me unless my quality of life was affected. This meant to her that if it stopped me working... well it was close to doing that for me, just as it is for you.

My advice would be to keep your eyes open(!) but to cautiously proceed with a graft (hopefully a DALK).

Please do keep us informed on your progress.

All the best,

Matthew, I think John has hit the nail on the head.

I only have mild/moderate KC and I have always said I would not have a graft unless I reached a stage where I could no longer drive.

My sight did deteriorate to the extent that I could no longer play tennis to a decent standard and I was struggling with my golf, but I could still drive.

I was offered a graft if I wanted it because my KC was affecting my lifestyle (in fact the problem was eventually diagnosed as cataracts).

What I am trying to say is that there is no need to feel guilty about having surgery because you feel you are not deserving. The case is the opposite and if you feel surgery could keep your career/lifestyle intact then go for it once you have investigated all the options and have decided that this is what you want. All the best Matthew

Thanks a lot guys.
I am actually having a bad eye day today as well, so you can guess where I am leaning! I just cannot get the left lens to be nice! I only wore it for about 3 hours yesterday too.
Well, lets see what they have to say!
Thanks for all your help and support as ever. I will keep you posted.
My Naval opthomologist said he wants to see me again when I am a Commodore at least! I don't think a graft is that good!!!!!

when you go to see your consultant just tell him you wanted vocational advice etc

OK

I must have worked in an office for far too long as the first thing I think of when read naval opthomologist is somebody who looks closely at your navel, not somebody who helps the fine peeps in our forces see!

Ok, I'm leaving now ok and I'm taking my sense of humor with me!

Ed