New here, introduction and question

[Saffron]

Hey guys! I finally decided to join today after lurking for awhile.

I'm 19 years old and have had KC for around 7 years. I wear a RGP lens in my 'moderate' right eye, which the fit is constantly being tweaked right now, apparently the lens doesn't have any movement and binds to my very dry eye, despite using clinitas. 

The left has been advanced and majorly blurred for as long as I can remember. A lens could not be fitted due to steepness, and I had a graft in January last year. 
Had first half of stitches removed this month and it's not long until the followup to see when the rest can be taken out.

Very excited at the thought of finally being able to wear a lens in my graft eye, just wondering how long you guys had to wait before the eye settles down and a lens can be fitted? 

Manchester eye hospital has helped me so much, very grateful.

[Andrew MacLean]

Saffron

Welcome to the forum.

The issue about fitting a lens to a grafted eye has more to do with the stability of your prescription than the healing of your eye. I waited until all the sutures were removed from my grafts and then a little longer while my vision 'settled' to a stable prescription. Now I see well enough to drive with a mixture of glasses and a contact lens. The eye in which I wear a lens took a little over 18 months to settle enough for a lens to be fitted.

Every good wish.

Andrew

[pally]

Hi Saffron,

Just looked into the forum after a couple of years away and saw your post.

I would be very much interested in your experience since the graft 18 months ago as I am due to have one in October at Moorfields Eye Hospital. I am 26 years old and have KC in right eye for 10 years. Tried all the contact lens solutions but did not like any of them and have managed with good left eye (mild KC) + specs for last 8 or 9 years. The advice I always got from the NHS and private consultations was usually that if you can live with one eye then best to carry on. I spent 6 months in the USA earleir this year and saw a cornea specialist. He was very positive and said that at my age I should be having the graft. I had made it clear to him that if I had a graft it would be in the UK and just wanted independent and honest advice. It was then that I decided to have the procedure.

I am aware of the potential problems of rejection etc but I feel now that I must go ahead. Grateful for any words of encouragement from those that have had the procedure carried out.

Pally

[Andrew MacLean]

pally

Welcome back!

I have never regretted either of my grafts, and see well enough to drive! I was at the clinic today and my vision (corrected) was read at 6/5 in my right eye and 6/9 little less in my left.

All the best

Andrew

[longhoc]

Hi Pally

Just posting on this thread because I'm sitting here pecking away at my smartphone (so appologies that my typing/spelling/general standards of English will not be up to my usual ones !) having had a part-depth (at least, I think it was, that's certainly what it should have beeny anyway) graft at about 11 o'clock-ish today.

Briefly, with regards to my situation, I was in no hurry to have a graft done. In fact, I resisted it all the way because I was absolutely determined to exhaust every other possibily first. So cue a lot of trials of different lens fits and other "last throws of the dice".

But when the most recent "oh for goodness sake, make up your mind Chris" time came a l
ittle under a month ago, I knew the I'd let due process complete and it was the appropriate thing to do.

So if you want some straight-from-the-horses-mouth hot-off-the-press information, well, so far so not-too-bad. Woke of with a little soreness, moderate weepiness and general niggly low level discomfort. But can read a little, watch TV and - hey - post this so I can't be that bad.

Had a general anesthetic (first time so that was probably the most trepidation thing) so don't remember any of the procedure. Which is perhaps just as well.

Only time will prove whether it is/was the right thing to do, but like I say, I think you'll just know in your heart of hearts.

Best wishes, thinking of you at this not-easy time while you're trying to make some pretty big decisions.

Chris

[pally]

Thanks Andrew and Chris, for the encouraging words.

Chris, I hope all goes well for you, let us know how you get on. Do you mind if I ask where you had the graft done, was it NHS or private?

I am having it done at Moorfields on the NHS so cannot pick the surgeon - does this matter? Any thoughts welcome.

Thanks to those who run this forum, it is a great comfort to us.

Pally

[longhoc]

Hi Pally

In the end I opted for Private. I did see the NHS team there at Moorfields who seemed to be skilled and highly professional. They appear to be supported by an excellent set of consultants. I don't think there is much to choose in terms of clinical care and standards between the two sectors. The only big difference is, as you say, you can't pick your surgeon unless you go private. Obvioulsy if you've the means to have it done privately there are some other non-clinical advantages to doing so -- timeliness being perhaps the most noticable. From me agreeing to have the procedure, to going into theatre, was about three and a half weeks. Psychologically, I think that has some real benefits because you simply don't have the months and months of sitting waiting and -- if you're anything like me -- frankly, fretting. Before you know it, it's the day of the op and you're in.

But apart from that, Moorfields is a specialist unit with, as I say, a seemingly first-rate set of resources. The one thing I might not be so sure of was if it was at a smaller regional NHS hospital / trust. There, I would have a doubt or two about exactly how much experience there was to call on. But that's just my almost-certainly unfounded bias and I'm sure I'll now be roundly chastised by those who will say that they had a perfect outcome for their treatment at somewhere you wouldn't have necessarily thought of as seeing a hight level of graft procedure throughput !

Wish I could offer some definitive information on the should I / shouldn't I question you're facing. Sounds like you've made up your mind anyway which is good. The end result will be individual to you and there's no-one -- not even the most experienced consultant -- who can tell you what will happen. That's the uncertainty and that's what makes it such a hard decision. I guess for all of us who opt for the graft, we can definitely say it will be somewhere between space_cadet's and Andrew's range of extremes. Where we end up on that spectrum, though, that's out of our hands... something we just have to live with I suppose.

Keep us posted on how you get on ! The more people tell others how it goes, the more we de-mystify the whole process for everyone else.

Best wishes,

Chris