corneal graft advice

[Sophie Bull]

Hello all,

Just looking for some advice really. I have been to see my consulatnt today and he has advised me to be put on the waiting list for a transplant just for my right eye. My left eye is still not so bad and the vision is corrected to a reasonable level with a Rose K2 contact. However, I am very dependent on being able to wear the lens, without it im pretty much out of action. It would be a huge help if my right eye was available as well and give me more flexibility, I recently managed to get a scratch on the left eye which left me unable to wear my lens for a week, very frustarting and a situation that could be changed if my right eye was better.

I have exhausted all other lens types appart from sceleral lenses, which I talked through with my contact lens consultant today, he said he is willing to give it a go and try to fit one, but also thinks I will be disappointed with the results. The main problem being very bad central scarring, which no lens can over come.

I talked through the corneal graft and am looking for some extra advice from anyone willing to help. An appointment may not come through untill about christams time and I'm wondering if I should leave it untill I finnish my degree. I have just done my second year and in september will enter my third year, I am studying history and really need to see and be able to read. However I have made it through this year and perhaps its sensible to pospone the operation untill I have finnished, but I may well go on to study for a masters, perhaps no time is perfect and posponing it wont help.

Any advice would be really appreciated

Sophie

[John Smith]

Hi Sophie,

I know that others will disagree with me, but I feel that if the time has genuinely arrived for a graft, you shouldn't postpone it. At the moment, you still have a "good eye" that will keep you working whilst your grafted eye goes through the healing, changing process.

My graft came at a time where, although it was the "bad" eye that was grafted, the "good" eye was not much better. I ended up not doing things that I wanted to do because my vision wasn't up to it.

Notice though that word "genuinely". Consultant surgeons naturally think about surgery sooner than may be necessary. In my case, because I had scarring, surgery was the right option for me - if in doubt, ask - have you, for example, considered wearing a scleral lens?

Let us know how you get on.

[Janet Manning]

Hi Sophie,
I guess people will get sick of me posting messages about delaying grafts as long as possible, but if I save one person from surgery sooner than they needed it, it's worth it.
Please see my post under the topic graft below.
Main point is that there is no research into the longevity of grafts past 5 years! You must be in your early 20s I'd guess, so a long time to live yet! There's also a limit on how many times you can be regrafted.
It's different for everyone and not even the surgeon knows until afterwards what the outcome will be for you. I was promised improved vision with glasses rather than lenses post graft. My unaided vision is no better, just different, worse with glasses and I have to wear sclerals.
That's another thing. My understanding is that sclerals do not touch the centre of the eye, but rest on the outer edge on the white of the eye. They have a film of saline inside between the central cornea and the lens - hence no risk of scarring to the central area from the lens. If I'm wrong about this perhaps Ken will set me straight! Maybe you need a referral to Moorfields to get fitted by the experts! Sounds like your doc might not be so hot on fitting sclerals! He\she is also wrong about the comfort issue - sclerals are far superior in comfort to other lenses because they are not trying to balance on a pointy cornea - they cover the whole thing. The hospital optometrist at the hospital, where I had my grafts, also told me I'd hate sclerals, that they were big and uncomfortable etc. He only gave me softperms with 6 hours daily wearing time. I insisted on a referral to Moorfields, got my sclerals, learnt to use them in 5 mins flat, wore them 8 hours the first day and now get a regular 12+ hours. I've even managed 12 hours today with bad hayfever! I love my sclerals - please try them too! I felt disabled before I got them because I'm partially sighted without, now I don't feel disabled.
Good luck with whatever you decide.
Janet

[Caroline]

Dear Sophie

After much thought I had a left corneal graft last August. Although I have had KC for 10ish years and am now 29, I was lucky to get through my degree and PGCE course with a reasonable level of vision.
Obviously it is different for everyone but I would suggest that you get it done when you finish your degree. Although time spent in hospital is short, afterwards you will have lots of eye drops, and regular appointments to attend. Although my vision has improved and am pleased with results you may experience fluctuating vision for some time. Even if you go on the list now you will have to wait a while. At Oxford it was about 6 months, but if you tell the consultant of your plans I am sure they will plan appropriately for you. Peronally I would finish degree, book in for graft and then allow some time for yourself and eye to settle before embarking on masters!!
Hope this is helpful, if you want to chat further just let me know
Good Luck
Caroline

[Rob Armstrong]

Hi Sophie,

I found myself in similar circumstances to what you are facing now. Although it may not seem like it, you are in a fortunate position time wise. You should talk to your University about your situation - you'd probably be surprised at how flexible they can be, more than most employers would be later in life.

During my third year I faced increasing problems with my lenses. With only weeks of my course to go, I was told that I couldn't tolerate an RGP in my right eye any more. This came as quite a blow, especially as I couldn't rely on being able to wear my remaining lens at the best of times - never mind hayfever season!

With course deadlines looming, I spoke to my senior lecturer, managing to secure extra time. They were aware of my eye problems, my frequent hospital appointments at least, but had little understanding of what KC was and the impact it was having.

During the summer I was put on the waiting list, and told to expect to wait until December at the latest, as there was a backlog.

It was all a bit off a mess! However, Uni had suggested that I return the following January (2003) to repeat my final semester (all my modules were deferred, so I didn't lose out in anyway or have to pay any additional fees).

During my wait, I learned a lot more about Keratoconus and corneal graft surgery, (how I found this site) and realised that I wouldn't be returning to my studies as planned. (It turned out my surgery wasn't until the January anyway). I kept Uni informed, and they simple said return the following year - not a problem.

I'm glad to say, the graft has been a great success, in fact I couldn't have hoped for better! Although it's been an agonisingly slow healing process - things are still settling down now 18 months later.

I returned to Uni last January. With hindsight I now know this was a mistake. At the time my vision was still changeable - fuzzy in the mornings, somedays better than others etc. But as far as I knew that was as good as it was going to get, and I seized the opportunity when I had the chance.

I'm glad to say that my vision has continued to improve and stabilise. But a bit too late - I haven't done as well as I had hoped at Uni, in fact I've had to arrange to complete my dissertation over the summer. If only I'd known how much my vision would improve back in January, I'd have gone back this coming September and repeated my whole final year (I was given this option but refused it).

Ah well, hopefully you can benefit from my experience.

I guess the moral is, don't struggle on and let your work suffer as a consequence. Don't be afraid to take time out from Uni, people do it all the time for various reasons, but if you do, don't rush back too soon.

Find out as much as you can about the operation and other options (such as scleral lenses), so you can make an informed decision.

Now I just need to decide what I'm going to do about my other eye...

Good luck.

Rob.

[Sophie Bull]

Thanks for all the helpful advice and experiences.

Im still unsure what is best, I think I will probably stay on the waiting list and maybe give sceleral lenses a chance. My consultant is more than willing to give them ago just wanted me to know that the results maybe disappointing because I have so much central scarring. I have time to think about it and I will think hard. Its a nightmare being completely relaint on just one eye with a lens which is sometimes more comfortable than others and the fitting has been changed 3 time s in the last few months.It would be good to have a helping hand from the right eye as well. but at the same time I am only 21 and I understand that this is young to start down the corneal graft route. Thanks for the advice about unis and stuff, I will talk to people there, I have a really good personal tutor who seems to understand it better than most.

If I think of anymore questions I will keep asking you people and let you know what happens.

Thanks
sophie

[Drew Radcliffe]

Hi Sophie

Ive got issues other than KC so some of this may not be appropriate but you may find my experience can help - Hope it does.

Im going to Uni next year to retrain as my sight is becoming unmanagable. I spoke to the RNIB they have helped me get information on assistance such as DSA (funding for equipment and to employ a part time reader for me).

I have had a full assesment of my needs and from this I now have a list of special equipment that mean I can access the education system, as fully as anyone without a visual impairment. I will be getting a laptop with Supernova (screan reader magnfication and colour changer software) on it. This allows me to keep the momentum up with my studies without letting the KC get too much in the way.

Im still pursing all the viable treatment options in my own time and at the pace I want to.

This is my way of dealing with My sight issues. I hope you find yours.

Cheers

Drew

[Andrew MacLean]

Hi

I kept on postponing my first graft until I had lost all useful sight in my most coned eye and had gone a long way towards losing the sight of my better eye.

I had my first graft last December. I wear a scleral lens in my non-graft eye. I can only wear this for about three hours a day, and have only "waving hand" sight without the lens (with it I can see the top line of the chart).

Sight in my graft eye is now much better than it was and much better than my "natural" eye. My sight is a bit blurred by the use of Dexamethaxone, but it clears up after an hour or so.

It is not always the case that sclerals make no contact with the cornea. Mine flattens the cornea by pressing against the cone.

End of the day ... your situation is different from anybody else's. For my part I should probably have accepted surgery at a far earlier stage. For your part, take as much advice as you can get and then make up your mind.

The important thing is that you are in control ... nobody else can make the decision for you, neither other contributors here nor your contact lens specialist, nor your opthalmologist.

All the best.

Andrew

[Roy St Pier]

Hello Sophie,

You've already had some excellent advice, but as a new member I wanted to add some words of encouragement of my own. From a KC perspective I've had 2 major life changing experiences, both with excellent outcomes, so far:
1) Graft in right eye in 1988, aged 30. I was living in The Netherlands at the time. I persuaded consultant there to do the op (Moorfields still unwilling). While waiting I had hydrops, became a priority and had op within 3 wks. One week in hospital (it looked like a CIA convention with the dark glasses), went back to work 2 weeks later (a little earlier than advised!) still wearing the eye protector. Immediate dramatic improvement over pre-hydrops vision. Vision fairly stable within months. Started squash, volleyball, 6-a-side football etc again, but stability of corneal lenses still a problem (stitches out 2+ yrs after op), and then.....
2) Some years ago Ken told me about these new generation scleral lenses. Like Janet, I took no time to get used to them, and vision in both eyes improved by several rows on the chart, and the problem of corneal lenses ending up in the corner of my eye is a fading memory. Wear them up to 15 hrs/day when not in air-conditioned environment looking at VDU screen.

So graft or not-to-graft? Well I would say try the sclerals first and if they suit you, and give you good enough vision to lead the life you want, then put off the surgery. After all, the graft may not last for ever, can't have endless number etc etc. However, if this doesn't work for you, go for the second-hand part with confidence.

I wish you as much luck as I have been fortunate to enjoy.
Roy

[Sophie Bull]

Thank you Roy and everyone else for your continued advice and support. I have found it so helpful and the issue is still very much at the front of my mind. At the moment I have decided to give the sceleral lens ago, even if the results are disappointing, I have nothing to lose. I am going to remain on the waiting list for the corneal graft. I have just put my lens back in after a seven day period of not wearing it due to a getting a scratch on my left cornea, something that I seem to have managed twice in the last few months and it has really highlighted the problem with being so reliant on my left eye alone. IÂ’m still not sure how things will work out next year with uni and to graft or not to graft..But I will just take things at my own pace and keep in close contact with my department. I'm still smiling despite continued frustration with scratches in the left eye and just got my second year results a couple of days ago..Two 2:1's and a 1st I couldn't have hoped for more.

Thanks again
Sophie