To have a transplant or not?

[eye16]

Hi all,
I was diagnosed with keratoconus when I was 16. I'm 27 now and literally have tried everything.
My doctor last week booked me in to have a corneal transplant, only for my left eye. My right eye had the disease but not as severe. I have no vision in my left eye, but I am confused, unsure and don't want to regret having this transplant as I know there are many complications that can occurs

I just some people's opinions as to what they've done.
I am under Moorfields.

Any feedback would be great,
Thank you,
Reena

[Andrew MacLean]

Hello Reena

Welcome to the forum.

Moorfields is pretty much the gold standard clinic, and if they think that a graft is now indicated I wouldn't dismiss their advice out of hand.

I waited for my first graft until i had nothing left to loose. The problem was that I had nothing left to loose in either eye so really couldn't see anything at all. Having had two grafts now (one in each eye), I have absolutely no regrets. That is not to say that I have had no set backs, I did. Things have settled down now and I have very good vision indeed.

Every good wish. This is a big decision for you to make.

Andrew

[eye16]

Thank you for your reply Andrew.

Can I ask how old you were when you got the transplant?

Ive just got a weird gut feeling, and scared. I have just made another appointment in Aug to see my Surgeon Mr Tuft, to get another opinion.

They also suggested collagen cross linking for my right eye. Is this procedure fairly safe? I have read up on it, but real life opinions mean more.

is 27 too young to have a corneal transplant? I dont really have anything to lose, the aftercare i am aware of is the most important, how much time off work did you take?

Only people with keratoconus can understand the frustration behind this horrible disease.

Reena

[Andrew MacLean]

of course you can ask. I was in my early 30's when i was first advised to have a transplant, but I put it off until I was 55 and registered blind.

[Mousework]

Hi all,
I was diagnosed with keratoconus when I was 16. I'm 27 now and literally have tried everything.
My doctor last week booked me in to have a corneal transplant, only for my left eye. My right eye had the disease but not as severe. I have no vision in my left eye, but I am confused, unsure and don't want to regret having this transplant as I know there are many complications that can occurs

I just some people's opinions as to what they've done.
I am under Moorfields.

Any feedback would be great,
Thank you,
Reena

i had a graph done in may, and it was confirmed this week my body has rejected the transplant, now i am in a worse situation than before

[Anne Klepacz]

Hi Reena,
I had transplants (one in each eye) in my 30s at the point when contact lenses were very painful to wear and were no longer giving me adequate vision. So I felt I had nothing to lose. My transplant journeys weren't straightforward - I had several rejection episodes, but fortunately they were reversed each time and more than 25 years later, I still have the original grafts and they are doing well. Like most people post graft, I still need correction with either contact lenses or glasses (and it's great to have the choice!) but personally I've never regretted the decision to have the grafts done.
How fast and how far KC progresses is very different for each individual, but we have quite a few members who had grafts in their 20s and some in their teens. So it's not a question of age, but whether someone can get reasonable comfort and vision with contact lenses. Time off work after a graft again varies on the sort of work people do. I took 3 weeks off after each operation.
If you're not already on our postal mailing list, do e-mail me anne@keratoconus-group.org.uk and I can send you some of our DVDs and other info on both transplants and crosslinking.
Good luck, whatever you decide!
Anne

[eye16]

Thanks for the replies.

How old was everyone else when they received their transplants? Only reason i ask is that I know they will not last the whole of my life, and if this one is successful, i know i will have to have another one in 15-20 years.

I know what risks are involved using long term steroid drops.

I have dealt with advanced keratoconus for the last 3 years.

Does anyone else get severe eye pain and chronic headaches? Feels as though it might develop into and cause hydrops.

Is there anyone else within my age range that has had an transplant? If so how did it go?

Thanks for the input, really appreciate it.

Reena

[Andrew MacLean]

why will you have to have another in 15 - 20 years? They can last longer than that!

[eye16]

oh really? i wasnt aware of that, i thought that was the life spam.

Sorry for the incorrect information.

My eye is quite problematic, and im always having to press down on it, it helps with the pain.

Im still very confused about matters, i think when i see my surgeon ill be able to make a more informed decision.

Everyones input has been great,

thank you so much.

Reena

[Loopy-Lou]

My grafts are 21 and 27 years old, I was 21 when I had my first graft. The first graft healed well, I wear an RGP, the 2nd graft I had episodes of rejection and blood vessels in the graft, it survived but offers no useful vision and can't be fitted with a lens. I wear glasses on top of the RGP for reading [that's middle age].