Hi there - to graft or not to graft - that is the question ?

[Darran Smith]

Hi there folks !

I am new to the forum and wanted to share my background with you and hopefully receive some thoughts on my situation.

I was diagnosed with KC circa 15 years ago and have been treated with a variety of contact lenses (hard, hard with soft on top, soft perm and now small rgps) for about 8 or so years. On the whole my vision has been corrected well and I have faced the daily challenges of KC and lens wear i.e. limited wearing time, vision deterioration as the eyes dry up, tired and sore eyes, tearing the epithelial layer of the eye when removing my lenses, extreme tearing, inconsistent vision etc. At present my eyes are adapting reasonably well to the rgps though my vision is terribly inconsistent at times. I have achieved close to 6/6 combined and between 6/12 to 6/9 in either eye.

I have already made steps to make a radical career change. My new career (I hope) will take me back to sea as a Skipper. I have to however meet the Marine and Coastguard Agency (MCA) eyesight standard before I am allowed to command a vessel at sea. At the moment I do not meet either the unaided (6/60 in either eye) or aided standards (6/6 in one eye and 6/12 in the other).

I am currently exploring the corneal graft route and thus researching its implications. The NHS have assessed me for a graft and tell me that I do not meet their criteria - urgent cases only. I have therefore visited Moorfields and had a consultation with David Gartry who is confident that a graft could help me meet the standard. I appreciate there are no guarantees with KC and grafting and wondered if anyone has faced a similar challenge and is willing to share their story ?

Many thanks in anticipation

[jayuk]

Hi Darran

I think the results of a Graft can never be guaranteed....and in all honesty there is no-one out there that can claim that...why?

Well for various reasons including

a) Noone can determine WHEN / IF your Graft will reject in as little as 4 weeks (acute rejection) or longer! (years). If it DOES life can be alot harder

b) The outcome of a graft although is postive in majority of the cases, the definiaiton to POSITIVE varies between the Patient and the Consultant

A consultant will deem a Penetrating Keratoplasty a success if its Clear, not rejecting, and lower level of astigmatism. However many dont take into account the VA (visual acuity)

Whilst I firmly beleive that the structural outcome of the transplanted material is largely to do with the experience and skills of the consultant; the other variables are out of their control. (and in your case you have seen one of the best there is in the UK)

Right now as we speak, we do not have the luxury of having a drug that eliminates the chance of Rejection; and we are some 5-8 years away......however this very issue needs to be considered.

I would be inclined to ask any consultant what his results are?...post graft 12 months, what VA his patients are recieving, % of rejection over maybe 5 years, etc.

Clearly you are thinking of having this procedure for your career to some extent thus I would hate to see you worse off...........

Not trying to sound negative AT ALL....just pointing out the variables involved as you are potentially going to have this for your Career and to progress in it.

I am assuming the requirements for the job are 6/6 and 6/12 ?....corrected thats possible with Graft recipients...however...there are also those that have such high astigmatism as there consultant MAYBE didnt remove stitches on a "required" basis.

This procedure does require skill, and experience! but the rest lays with your body and immune!

Hope that helps!

[Sweet]

Hey there and welcome!

Oh work can sometimes be so difficult with eye conditions i know. I did orginally apply to go in the navy to do nursing as i love the sea but got turned down with my vision, then i was refused entry as a volunteer on a lifeboat as a student nurse in uni, and now to finish it all off i applied last year to join the TA's as a medical officer but was told i'm not allowed because i would need to wear lenses, so i know exactly how you feel!

Sadly there are minimum requirements in most jobs as you need to be able to see what you are doing, and having a graft is sometimes not always a good thing. I know that the army look down on this, TA's included, although i have been told that the air force are not so strict on their eye regulations! However, i'm very happy on land or water, but not really in the air! LOL!

I do hope that whatever you decide works for you, just make sure that you explore all the possibilities before you decide on grafting, as once done it can't be reversed!

Sweet

[GarethB]

In addition to what Jay ans Sweet have put, I used to race cars semi proffesionally and there is a minimum unaided sight requirement.

Post graft I had to wait 9 months before wearing glasses to to able to see well enough to meet the correct sight requirments, but just missed out on the unaided. To achieve that standard took longer, about three years post graft.

18 months ago as my sight deteriorated in my right grafted eye, that eye no longer meets the minimum requirments although the left does. I have ad grafts in both eyes. Post garft I have managed 12 years racing.

As has been said, the quiality of vision post graft can not be guarenteed and personally I would say wait until a graft is absolutly necessary. This was the case with mine as lenses would no longer correct vision.

I appreciate what you are going through, but if you go for the surgery, it may still be a while before you reach the sight requirments for your choosen career.

I am now glad I followed my mums advice and got qualified in an alternative career as that has got me through the periods I have been unable to race.

Regards

Gareth

[Darran Smith]

Thanks jayuk, Sweet and GarethB for replying and sharing your thoughts - I truly appreciate them.

I agree with all of your sentiments and do not want KC to beat me especially when it comes to my ambitions in life.

My career change comes as I no longer got a "buzz" out of my old career and it was taking me in a direction I didn't want to go....besides the daily challenges of KC weren't helping and I am sure they never will.

I was brought up with the sea and going to the sea for a living - as a fisherman. My family goes back through numerous generations of fisherman. When I was at sea I couldn't pass the MCA Fishing Skippers eyesight test and had to follow a different path. My family and I decided we needed to leave the industry in the early 90's given the way things were going with the industry.

I went as a mature student to University and applied myself best I could (despite KC and having to wear specs) sitting at the front of every lecture, pestering students and lecturers for clarifying every second word or diagram and late nights every night due to my reduced reading and typing capabilities !! Anyway I graduated top of my year and with a 1st Class Hons too.

I spent a long time since then primarily in an office and I have quite frankly had enough. I know I need to do something which challenges me both mentally and physically - I am not built for an office environment !

The ironic thing is that when I began the career change I was within the MCA eyesight standard !

The sea is my first love, though I have a wife and five young children to think about so my decision has to be right for me and my family. I am not too proud to say that the fear of a graft rejection and the lifestyle that it can bring is making me think very seriously about "what next".

You and the members of the KC Group are all an inspiration and I am glad I have found this forum. Thanks for sharing.

I'll keep you posted....best regards for now

[GarethB]

The thing about graft rejection is you need to be aware of it, but most cases are rejetion free.

I used to work down sewers within 12 months after my grafts, never had (heres temping fete) a rejection episode in the 16 years I have had my grafts.

[Darran Smith]

Thanks GarethB that helps keep things in perspective - it's not always doom and gloom !!

What is your aided and unaided acuity like just now i.e. do you get aided 6/6 in your grafted eye ?

[GarethB]

Hi Darran,

In my left eye, unaided I am two lines off of being legal to drive, but corrected is 6/6.

Right eye has an extremely rare problem in that the old cornea the graft is attached to has developed KC again. The graft I had was quite large, 8mm disc. Uncorrected vision, I can not see the eye chart on the wall, but I can just about sea the wall if there is a colour contrast such as a brown door in a white wall. Cannot remember the numbers off the top of my head, but at the moment when the sight is corrected I strugle with the penultimate line on the chart, but lens wear time is very low as it is not in the correct positions. Working with the optom to overcome this and at the moment he thinks scleral would not work, but the RGP might at a puch if we can keep the lens in the right place.

Tried three times this month to get something to work with no luck. Try again in November. Still have the left eye which gets tierd, but has been stable with no prescription change for 18 months now.

Gareth

[Lisa Nixon]

It's a real dilemma having a graft done or not. I had my left eye done in May 2003. Stitches out 12 months later and wow what an improvement with the vision - which was worse with stitches than pre op. Now able to wear glasses which is such a luxury. Left eye vision still blurry without glasses but to my mind being able to wear glasses and not have to force a lens in is a success. However right eye is playing up - have to wear a lens and prescription in glasses that side too. Due to have that eye grafted 25 Nov - creeping closer! Mixed feelings - do I don't I?? But if my left eye rejects I'd be stuffed as my right eye isn't good enough on it's own so think I'm going to go for it and take a chance. To get me through the op and focus beyond (excuse the pun) I've entered the London Marathon next April! No, I've never done one before and no, I can't run! At present doing 3 mins walking, 1 min thundering down the pavement causing damage! 9 miles today and still upright! At present I don't feel able to work - eyes get too sore, but I teach at the local Riding for the Disabled group on Tuesdays. Ideal post op scenario would be to be able to work part time as a special needs class room assistant - once I've recovered from the marathon! Tubs

[jayuk]

Lisa

It may be worth Exploring a partial graft, as this virtually eliminates rejection chances.......thats how I shall play this if I need a graft in my other eye in the future...........

J