UK Keratoconus Self-Help and Support Association

Hello everyone,

The last time I posted here was around January when was having immense pain in my left eye.

To put it short, it's gotten worse :/ No matter what I tried or the optometrists/specialists tried, the pain is not subsiding. My left scleral lens does not fit any more. It is now extremely light sensitive and to top it all off, it's hay fever season!

I finally got to talk to a surgeon recently and he recommended I have a full thickness corneal transplant *soon* (full thickness because I have a very deep scar in my cornea) and that my condition is progressing very fast (Isn't that abnormal for someone my age? I'm only 18). I'm planning on having it in June after my A Level exams.

I'm quite overwhelmed by this, as it's not something anyone else of my age has to go through. I tend to be depressed very often because of KC and being "different". It just HAD to progress when my life just started getting a little better...

Anyways, I just wanted to ask some questions about the procedure:
-How long does the procedure usually take?
-What are my restrictions (in terms of sport, hobbies like gaming/TV) and for how long?
-The general recovery time?
-What happens if the procedure isn't successful? Do I go blind in that eye?
-How often may I need a corneal graft throughout my life?
-Which lenses are best suited to eyes which have undertaken this procedure?


Thanks to all of you in advance, and sorry if I rambled on for too long.

Amarpreet

Amarpreet wrote:
Anyways, I just wanted to ask some questions about the procedure:
-How long does the procedure usually take?
-What are my restrictions (in terms of sport, hobbies like gaming/TV) and for how long?
-The general recovery time?
-What happens if the procedure isn't successful? Do I go blind in that eye?
-How often may I need a corneal graft throughout my life?
-Which lenses are best suited to eyes which have undertaken this procedure?

Amarpreet

My first graft was 'full thickness'. The procedure itself lasted a little over an hour. I was second on the list that day so went to the OR at about 10. I was back in the ward by lunchtime.

I was told to avoid anything but light exercise, bending etc until the four week clinic. Thereafter I asked each time and was told what my surgeon thought it wise for me to do and wiser for me to avoid.

In terms of getting about my recovery time was brief, but in terms of my vision settling down it was over a year. that said, I did have useful sight in that eye long before the vision had stabilized.

It depends on what you mean by 'not successful'. There is a moment of danger during the operation when your eye is open to the sky (the membrane separating the inside from the outside of your eye has been removed). Ophthalmologists are aware of the potential danger of this moment and will not allow any undue risk to be taken with your sight. That said, once everything is sewn up and in place, the danger of rejection continues. If your graft does fail they will probably offer you a replacement. Others have had this and have been well satisfied with the result.

The duration of your graft is pretty much unpredictable. I do not expect ever to need to have another graft in either of my eyes.

Again, the lens that suits you best after your graft is unpredictable. i have an rgp corneal for my left eye and need no lens at all on my right.

Every good wish.

Andrew

Hello mate, though i cant tell you anything about the graft (and i must say Andrew did a very good job!) i can say your not the only one going through this at your age. I myself am 22 and have know i have keratoconus for around 2 and a half years now.

At first like yourself i found it very hard to deal with and asked myself why me etc but now ive been to the hospital and got my lenses etc i know everything is fine and this can be sorted or at least slown down. I can now think of alot worse things than keratoconus but at first thought it was the end of my world. Dont let it get in the way of anything you want to do mate.

Matt

Hi Amarpreet

Lots of questions there. The first thing is not to worry or panic. You are right 18 is young to be having a graft but that does not mean it is not the correct solution for you. The important thing is that you have tried all the different lens options. If you are not getting on with a scleral lens that may be the case.

I like you was unable to tolerate a lens and had central scarring and my life was hell in the evening, I often came home from work and went straight to bed. I was put on the list at the end of November and had a full thickness graft on Tuesday. Don’t now how long it took. I walked into the preoperative room chatted to the staff and the next thing bang I hear my name being called out and that’s it all done and dusted. I woke up around one ish. They kept me in till about half five and then sent me home. I was amazed how well I felt. i was even on my iphone whilst i was waiting to be collected. There was no pain more a discomfort but nowhere near as bad as a bad day with lenses. The last couple of days it’s been mildly sore but nothing major. I have taken very few tablets.

With regards to sport they say you should not play contact sports again, Rugby for example. There are people here that do all sorts but you would need to talk to your surgeon. As regards to watching TV and computers, well here I am . I could watch TV but to be honest I don’t feel like it I am restless for some reason and don’t know what to do.

Recovery is 18 months to two years but I understand they can start fitting lenses before that. What type is down to the individual but in general it is the same type of lenses they are just easier to fit. Your vision will be rubbish after the op that’s normal. Mine is better than it was uncorrected before the op but it is a better kind of blurry as I have no ghosting.

Don’t think too much about what if it all goes wrong. You will be on a lot of drops to start with. I am taking one lot of drops every two hours and another every four. It’s IMPORTANT that you take these. You will be given some ground rules what you can and cannot do, bending and lifting etc. FOLLOW THESE. They will tell you what the signs are of something going wrong and DON'T DELAY going to them if there is something not right. You may need another graft in the future my brother was grafted 20 years ago and it’s still going strong. Age is on your side as they are already doing trials of artificial corneas. That’s a few years away but the science is advancing all the time.

I have been very lucky since Tuesday others have a more difficult time as may I expect ups and downs. If you feel the time is right for a graft then embrace it. I knew that it was because of the pain and my life was on hold. The last few days and the operation were nowhere near as bad as I thought they would be

All the best
Ian

Hi Amarpreet,
I don't have much to add to what the others have said, except to say that my grafts were done in 1986 and 88 and are still going strong. And I know people who still have their original graft after 40 years although there are also some who have needed a regraft after around 25 years. And of course, transplant surgery is constantly improving. It also has the highest success rate for people with KC (over 90%) whereas the figures for transplants done for other conditions are lower.
As for recovery time, I was back at work 3 wks after each of my grafts - some here have taken less time off, others have taken more. Getting it done in the summer holidays sounds like a very good idea, giving you plenty of time. Of course, it depends what you mean by 'recovery'. Getting usable vision back in the grafted eye can vary enormously. With my first eye I didn't get any benefit until I could be fitted with a contact lens again, whereas with the second the difference in vision was noticeable within a few months. As with everything in KC, we're all different!
All the very best with your A levels. I hope your school/college is supportive and giving you all the help you need. Do download the leaflet on 'Supporting Students with KC' from our home page if you haven't already done so www.keratoconus-group.org.uk/sitev3/publications.html
Good luck!
Anne