UK Keratoconus Self-Help and Support Association

Hi, a first time poster here my name is Nikolay, I'm 22 y/o male from Melbourne, Australia.

I was diagnosed with Keratoconus in my left eye, May 2010. Prior to this, I hadn't experienced or noticed any changes in my vision so it caught me off guard one night, whilst watching an episode of Neighbours, I figured a foreign object probably landed in my eye and I tried to wash it out with water, I then realised I may require medical attention when I looked closer into the mirror and I could see a white cloud like spot on the surface of my cornea. I immediately went to emergency and spent many hours there, they sent me home and told me to come back in the morning when a specialist could check it out. I was absolutely devastated when they were describing what was wrong with me and thought it meant I was going to become blind. Since then, my right eye has been monitored every 5 months and shown no sign of Kerataconus. They put me on a waiting list and I'm now due for a PK corneal graft next month.

After making the informed decision and reading up on the procedure, I'm beginning to doubt more and more whether or not it will actually improve my quality of life (considering the drops, stitches, complications during surgery and high risks involved etc) I'm aware that KC usually affects both eyes and only in some cases (less than 1%) just the one eye. This information is what helped me reach my decision. Because the thought of losing sight in my good eye is terrifying and maybe the graft will allow me to have usable vision in my left eye again... in case of the unexpected, I'd still be somewhat independent.

My question is, was it worth it? can people who have had a corneal graft (full thickness aka penetrating keratoplasty in particular) please share your experience and how you dealt with the pain & suffering, how it impacted your lifestyle?(can you drive?, read and watch tv?) do you have usable vision now? can you have usable vision without the need for contacts or spectacles?

For those who are only affected in one eye, is your good eye still KC free? is there any way they can determine whether or not you will always be KC free in that eye?

Has anyone had KC present itself in one eye, had a graft and later developed KC in the other eye?

Things I almost forgot to mention, the day I was diagnosed my eye was painful and extremely sensitive to light they gave me artificial tear drops and steroids to minimize the scaring. I discontinued the drops after 1-2months. The doctors didn't prescribe any contacts or spectacles. They decided a corneal graft was my only option. I have no allergies and don't rub my eyes, Nobody in my family has KC or any history of related corneal conditions. I did use specs when I was 10-11 y/o and grew out of them.

Hope to hear from anyone who can give me an idea of what to expect or share their experience and give me a better insight on KC and grafts.

Thanks for listening

I can only share my own experience. I was legally blind before I agreed to my first graft. I can now drive again.

I think that my first operation was in the eye that had the most damaged cornea. It was PK as this cornea had damage at the surface and also on the anterior membrane cells.

My other eye had ulceration only on the surface. This eye was KC free longer than its neighbour, and KC had developed more slowly.

Was it worth it? Absolutely yes.

Should I have waited so long before agreeing to surgery? That's a judgement call.

Anyway, welcome to the forum and to this band of the bemused as we try to find our way through the morass of conflicting information.

Every good wish.

Andrew

Hi there Nik

Okay, from the top:

Q. Was it worth it?

A. For me, 6 months post graft, a qualified yes.

Q. Can people who have had a corneal graft (full thickness aka penetrating keratoplasty in particular) please share your experience and how you dealt with the pain & suffering, how it impacted your lifestyle?

A. Well, I had the partial thickness graft (a.k.a. DALK) not PK. Actually, that was one of my questions, do you know if you absolutely have to have PK e.g. because of your hydrops incident which it sounds like you had ? As you might have found out, DALK presents an easier recovery path than PK. So I can comment in respect of DALK if that's any help... After the first couple of weeks, there was no pain. I experienced awful tiredness during the first month or so (probably as a result of the anaesthetic more than the actual procedure) but I wouldn't describe it as suffering as such. Glad it's over now though and wouldn't want to go through it again any time soon. I was lucky with the lifestyle impact -- the amount and frequency of the medication was reduced fairly quickly which limited the quality of life reduction. I was though generally a little anxious and at times prone to stress. It's a major procedure, things can and do go wrong (e.g. I got an infection -- there's nothing you can do but take your prescribed medication, sit and wait hoping for the best -- not easy when the stakes are high). I was lucky, I got through things and now it doesn't really register. If things hadn't gone okay, though, that would be another thing entirely. How good are you at coping when you get a bit of a setback ? That's a good thing to think about in terms of preparing for this decision.

Q. Can you drive ?

A. No, not yet.

Q. Read and watch tv ?

A. Yes, subject to some restrictions about font sizes, taking breaks and not overdoing things.

Q Do you have usable vision now ?

A. No. That's an important consideration -- you don't get your final vision until the stitches are out. This can take a year to 18 months (more in some cases). You do end up having to learn patience...

Q. Can you have usable vision without the need for contacts or spectacles ?

A. TBA

Q. For those who are only affected in one eye, is your good eye still KC free ? is there any way they can determine whether or not you will always be KC free in that eye ?

A. My Keratoconus was / is bilateral so my other eye is still what it always was . No, you can't tell if you're going to never progress / stop progressing / accelerate progression. The "graft or not graft" consideration should, in my opinion, be taken one eye at a time, in isolation.

Q. Has anyone had KC present itself in one eye, had a graft and later developed KC in the other eye?

A. Not me, if anyone else has, they will hopefully comment but if I understand the disease process correctly, what you do to one eye is irrelevant to the other one (any professional who can correct me there, please do !)

Lots of stuff there, do please say if you need any more info on anything at all.

Best wishes, not an easy decision, I should know. Be nice if we weren't put in the position we get put in, it is easy for me to say you have to try and make the best of it, not at all easy to do...

With sympathies,

Chris

Thanks Andrew and longhoc, you've given me a little hope.

"God give me the strength to change the things I can, the courage to accept the things I can not and the wisdom to know the difference" guess this really speaks to anyone but I find it so inspiring and relevant... thought I'd add something positive to my post

All the best to anyone who is going for their graft and those who are recovering from the procedure.