UK Keratoconus Self-Help and Support Association

Well hello everyone....long time since I've visited the forum

I had another appointment last week at the eye hospital and the consultant basically told me its up to me if I want a corneal transplant in my right eye. He said to go and think about it and let him know.

I really don't know what to do. Can the transplant really make that much of a difference. I know I am getting sick of wearing RGP's and all the associated problems with contact lens wear. I guess I am worried if it all goes wrong....what then ?

any advice would be gratefully accepted as I just cant think straight right now

Cheers all

Gary

Hi Gary

Good to know someone else is in my boat! - I was diagnosed with KC when I was 14. I tried RGP's but they were terrible, had all the usual probs KC'ers get! I then got a place at uni to study primary education but I had to give it up because I could only wear my new SO2 Clear lenses for a max of eight hours a day. I have now not been able to get a job for the last 2 and half years and I feel that a corneal transplant is my only option left because my optometrist has said my eyes are so advanced that no other lenses will work. I also feel it will be the only way that I will be able to get work

Take Care,

Jennie x

Hi Gary

Good to know someone else is in my boat! - I was diagnosed with KC when I was 14. I tried RGP's but they were terrible, had all the usual probs KC'ers get! I then got a place at uni to study primary education but I had to give it up because I could only wear my new SO2 Clear lenses for a max of eight hours a day. I have now not been able to get a job for the last 2 and half years and I feel that a corneal transplant is my only option left because my optometrist has said my eyes are so advanced that no other lenses will work. I also feel it will be the only way that I will be able to get work

Take Care,

Jennie x

HI Gary and Jennie I was pulled from pillow to post by the opticion and the surgern both advising me what they thought was best for me and both having devided opinions, been a nightmare few years for me however november of last year i decided to give in to the surgern as contact lens are pretty umbearable for me and though i still wear them and battle on best as i can i feel i have made the right decision regards waiting for the operation and even though after the operation i will still have to wear contact lenses it will be another year before i have the other eye grafted will i find out if everything would have been worth it, my moral being i am finally at the end of my tether and strongly feel this is the only way forward now, it is a big decision to make and all i can say go with what you dtrongly feel, and all the very best for the both of you

Gary...

and anyone else in the same boat...

I am going to take a deep breath and make comments that contradict what you have been told.

Grafting is NOT the best option... it is the LAST option. Before you get there, you have several other things you can try but they are not necessarily on the NHS.

If you find RGPs difficult to wear, then there are other lens options such as sclerals, semi sclerals, hybrids and soft lenses for keratoconus.

If you have corneal scarring, then soft lenses can really work to rehabilitate that.

If you are still progressing, then cross linking - CXL - can stop that, but it is not available on the NHS. Although NICE, the body that assesses new procedures still maintains this is experimental, it is interesting that Sweden now cross links every new KC patient that is diagnosed, no ifs or buts...

CXL can also improve corneal shape significantly and improve vision, although it will not bring your vision back to normal.

CXL can be combined with treatments such as INTACs to improve corneal shape.

If your cornea is very thin or scarred, then there are also new techniques with cross linking that can get round that.

There are a whole host of things that can be done before you get to grafting. Bearing in mind that a graft does not guarantee you will be in any better place than you are now re getting vision you are comfortable with all day, every day, it is definitely worth taking time out to get second opinions and explore other options.

Lynn

Hi all

chris1972as wrote "i am finally at the end of my tether and strongly feel this is the only way forward now"

I too feel I got to that point and now wonder if I was brave and soldiered on for too long (graft done for me 18th Jan 2012 so still very early days recovery wise). Whilst I could manage I managed and found eventually, to the detriment of my mental health, that it was others that had the problem and their discrimination and shortsighted views that compounded my misery and made for me not being able to see clearly all the more unbearable.

We are all so different and whilst surgeons often suggest surgery (its their speciality) and contact lens people want to help with lenses, I wish now I had taken a step back sooner and remembered it was my life and looked at how loss of sight was limiting me. With a condition that is not easily recognised it is so much harder to be treated fairly, work for me has been a nightmare.

Susan

Hi all

chris1972as wrote "i am finally at the end of my tether and strongly feel this is the only way forward now"

I too feel I got to that point and now wonder if I was brave and soldiered on for too long (graft done for me 18th Jan 2012 so still very early days recovery wise). Whilst I could manage I managed and found eventually, to the detriment of my mental health, that it was others that had the problem and their discrimination and shortsighted views that compounded my misery and made for me not being able to see clearly all the more unbearable.

We are all so different and whilst surgeons often suggest surgery (its their speciality) and contact lens people want to help with lenses, I wish now I had taken a step back sooner and remembered it was my life and looked at how loss of sight was limiting me. With a condition that is not easily recognised it is so much harder to be treated fairly, work for me has been a nightmare.

Susan

thanks for all of your input

I am still no nearer making a decision tho'. I was thinking of putting together a 'pros and cons' list of having the surgery or not.

I would be interested to hear your 'Pros and cons' of either going ahead with the transplant or continuing as I am with contact lenses.

BTW I mentioned to my consultant about keraflex and he dismissed it saying that I could not have it done on my left eye as I had a hydrops episode and it would not make any difference to the corneal scarring in my right eye. He also said the longevity of keraflex has not been proven.
I don't have any private medical plan and cannot afford to go private as we have a baby in Nursery.

your thoughts appreciated

Gary

Hi there Gary

Thought I'd do my usual lengthy waffle-a-thon on all the in's and out's of to graft or not to graft ...

But actually I think I can sum it up in a sentence. Others have already said all the points I'd have made better than I could anyway.

For me when it comes to a graft: if in doubt, don't.

The stakes are simply too high to go into it unless you're absolutely sure you're sure. When you get to that point -- like I did -- you'll know. If you never get there, you'll know you were right to hesitate.

Good luck with whatever you decide to do (or not do !)

Best wishes

Chris

Gary,

Just a thought. You say that you are sick of wearing RGPs, but have you been able to try any other types of lenses?

I was having problems with my right lens, although a good fit, it would become intolerable after three weeks' wear. I'm now piggy backing the RGP with a soft lens underneath and the lens is not only tolerable but comfortable. It may worth asking to try piggy backing your RGPs or asking to try other types of keratoconus lenses. RGPs are no longer the only solution.

Lia