What's your story?

[sutts]

Hi all. This is my story...

I was 15 or 16 as I remember and I never had any difficulties with my vision before that age. I remember, with quite rapid onset seeing halo's and blurring around street lights and my vision got progressively worse, so much so that I couldn't identify a person from more than a few feet away. I went to the local hospital and the consultant diagnosed keratoconus, this was when I was about 17. I was then sent to a local contact lens practitioner who fitted hard gas permeable lenses for me. I will never forget the day that he popped in the first lens for me. I couldn't cope with the unbelievable detail that I immediately saw again. I looked around the place and thinking how shabby it looked and I remember looking at the opticians face...a few minutes earlier he had a smooth complexion...now he had skin that looked like the surface of the moon..I think the brain just over-loaded with all of that sudden detail again! I had bright blue contact lenses...well, I was 17 and this seemed like a real bonus back then!

The contact lenses were great for a few years, but I recall how uncomfortable they then came, it was like having grit in the eyes all of the time! I remember losing so many lenses in night clubs, at work...well just about anywhere, it was so bad in the end that if I turned around quickly one would pop out! The practitioner was at the end of what he could do for me as the KC progressd and he recommended to the hospital that I went on the list for a graft.

I think I was on the list for about a year...and then one night at around 4.30, I got the call (it was 1991 and I was 31 at the time). I had to be at the hospital within an hour! I was on a night shift, so at least I was happy about that! I stayed in hospital for an entire week...I'm glad to see that has changed! The graft all went well and a year later I got the call to do the other eye.

I wear glasses now and although I can just about manage without them for general use, I can't manage well enough for driving. My grafts don't ever give me a problem, but I do suffer with Blepharitis, which always makes my eyes look sore! Hopefully the grafts will last a lifetime...but that is one of my questions, does Keratoconus ever 'attack' the grafted corneas? My other questions are, can I have laser treatment if I want to, can I wear contact lenses safely, without affecting the graft? The hospital have never said that I can, but to be fair, I have never asked!

That's me...what about you?

[longhoc]

Hi sutts

Great to hear of a graft success story !

We had a really interesting presentation a few weeks ago at our last meeting in London, one of the ophthalmologists who works out of Moorfields Hospital gave us some data on graft survivability. The first thing was that there's different survivability statistics depending on whether you had a "full depth" graft (technically known as Penetrating Keratoplasty or PK for short) or a "part depth" graft (DALK which stands for Deep Anterior Lamellar Keratoplasty or usually abbreviated to "lamellar graft").

With PK, 10~15 years is about average for graft survivability according to current data. For DALK, 20+ years is an estimate -- and it is an estimate because DALK has only been performed for about 10 years maximum so the survivability time is an extrapolation from what clinicians are observing at the moment.

That all said, such statistical modelling is fraught with issues because of such things as

a) limited sample sizes
b) the necessary use of blanket assumptions e.g. what were the state of patient eyes before they had their graft
c) not capturing different standards of post operative follow-up care

...and so on

So, treat these as a guide, not definitive. Our venerable Anne (do you mind being called venerable Anne ? ) has PK grafts which are over 20 years old, others have even more long-in-the-tooth grafts than that.

For me, with a DALK graft at 40, I'm hoping that the original graft will see me out.

Even if the worse happens, you can have another graft (although graft survivability does tail off with subsequent graft attempts).

As for contact lenses, there's no problem in theory with having RGPs post-graft, or indeed any other type of lens. I'm trying to manage with glasses after my graft a year ago. Very far from perfect but for reasons which are probably more psychological than physiological I'm really really loathed to go back to contact lenses... If I do have to, there's soft lenses for post-graft patients (although I think maybe now lenses such as the latest Kerasoft brand can be dispensed for both grafted and non-grafted eyes using the same basic lens type... I'm guessing now, on my list to investigate at some point !)

Finally, yes, you can have refractive surgery after a graft e.g. LASIK or T-CAT. You can also have implantable contact lenses which try to do the same thing as surgery but in a reversible way. Are you considering these ? Me too... there's a lot of variables to consider, as I'm finding out.

Best wishes

Chris

[Anne Klepacz]

Welcome Sutts,
I may have grey hair, but I don't feel old enough to be called the 'venerable Anne'! But yes, my grafts are 24 and 26 yrs old, and I'm also hoping they might outlive me. Though as Chris says, we had an interesting talk which included this topic. There'll be a summary of it in our next newsletter (I'm just checking some of the figures with the speaker) so do join our mailing list if you'd like a copy of that and other literature/DVDs we produce by e-mailing your postal address to me
anne@keratoconus-group.org.uk
It's very rare (though not impossible) for KC to come back in a grafted eye. But what's more common is for the cells in the back layer of the cornea (the endothelium) to die off more quickly in a grafted eye - hence the need for some people to have a regraft after 20 years or so. And we have several people here with successful regrafts, as well as people whose grafts are 40 years old! So, like everything with KC, it's a very individual thing.
As for contact lenses post graft, lots of people, including me,wear them. And for me, they're certainly a lot more comfortable than they were pre-graft, when my experience was similar to yours. Though if you have blepharitis, contact lens wear may not be so easy for you. But certainly worth a try.
Anne

[Anne Klepacz]

PS Just got an instant response from our speaker on the figures - he was quoting a recent Australian study which showed 50% of PK grafts surviving till 20 years. After that, the survival rate in the study group went down more quickly, though the good news is that it's now possible to replace just the back endothelial layer, which is a much less invasive procedure than a full regraft. And as Chris said, survival rates for partial (DALK) grafts are predicted to be much higher.
Anne

[sutts]

Thanks for the 'welcomes', guys!

Wow, so much information! I will have to find out what sort of a graft I had, as I really don't know. Given that they are 21 years old, I imagine it was the PK graft as you have said that the DALK is a new-ish procedure. Hopefully mine will last 40+ years like some of the others on here, but with the evidence pointing to 10-15 years, that doesn't seem too likely.

I have never risked contact lenses, always assuming that the graft is rather delicate and fearing infections or irritation from the lenses. Where should I investigate this possibility? Do I need to see the hospital consultant first, or just go to a reputable contact lens practitioner?

As for laser surgery, that would be nice, if I could afford it, but again, where to start? I assume this is a rather specialist operation?

[Anne Klepacz]

Hi Sutts,
I've always assumed that the grafted cornea is a lot less delicate than the thin, stretchy one it replaced! I'm assuming you're in the UK, where most of us get our lenses from a hospital eye dept which is where the optometrists who know about fitting KC or post transplant eyes tend to be concentrated. Though we do have a list on this site of 'KC friendly optoms' so you could go to one of those. www.keratoconus-group.org.uk/optoms/index.php
As far as I know, laser surgery is sometimes done to correct post graft astigmatism. So it would be sensible to talk to a corneal consultant about that. Do you still go to a hospital for monitoring of your grafts? If not, your GP would be able to refer you.
Anne

[sutts]

Hi Sutts,
I've always assumed that the grafted cornea is a lot less delicate than the thin, stretchy one it replaced! I'm assuming you're in the UK, where most of us get our lenses from a hospital eye dept which is where the optometrists who know about fitting KC or post transplant eyes tend to be concentrated. Though we do have a list on this site of 'KC friendly optoms' so you could go to one of those. http://www.keratoconus-group.org.uk/optoms/index.php
As far as I know, laser surgery is sometimes done to correct post graft astigmatism. So it would be sensible to talk to a corneal consultant about that. Do you still go to a hospital for monitoring of your grafts? If not, your GP would be able to refer you.
Anne

Thanks Anne. I am in the UK, but I hadn't seen a consultant about the graft for many years, well, until earlier this year (and that was because of blepharitis, not because of a problem with the graft). The consultant did say that the graft was very good, but also that I should have an appointment every year for the grafts and he said that he would set it up.

Will my doctor refer me to the hospital for a discussion around contact lenses? I guess in my case it is after all about vanity and not necessity.

Thanks for the link.

[longhoc]

Hi sutts

Yes, your GP in Primary Care is the point of entry back into "the system" i.e. an NHS optometrist who can give you advice on lenses. There are of course private operators who also specialise in Keratoconus lens fitting. These can, in theory, offer a wider choice of lens. I say in theory because the NHS should offer all lens types to you and what you get prescribed should only depend on patient choice (and/or if there's any particular indication for a specific type of lens which is determined by the optometrist when they've assessed your eyes). In practice, some NHS eye units are limited to just hard lenses ("RGPs") because they don't have the training and experience needed to dispense all the types of lenses in existence. Cost, again, in theory, shouldn't come into it... but sometimes I've a hunch it does. Sad but true that private operators probably offer the best access to all the lens options for Keratoconus and numerous other advantages too -- the only downside (and it's a biggie!) is it costs.

So, if you're interested in a specific type of lens, might be worth checking that the NHS eye unit which your GP thinks of referring to you does offer that choice (snag is, you might not find out 'til you get there !) If you don't get the sort of options you want, you can always go back to Primary Care and asked to be referred somewhere else.

Anything else you need to know, just ask.

Best wishes

Chris

[sutts]

Great info, thanks Chris. I think I might go to the GP to see what she says about this. My concern would be that she would be reluctant to refer me as my need is out of vanity and not necessity.

[Anne Klepacz]

Well, I'm not sure it's just vanity if your vision isn't up to driving standard and could be with lenses. And if your consultant is going to set up regular graft checks for you, that should be a chance to discuss contact lens options at the hospital you go to.
Anne