Aged 43 and potentially need graft- terrified

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PJRK20
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Aged 43 and potentially need graft- terrified

Postby PJRK20 » Fri 07 Jan 2022 9:03 am

I have been wearing RGP’s since the age of 21, last year I was fitted with a scleral lens in the left eye as the RGP was causing irritation. It was increasingly watery and so sensitive to light that I couldn’t look upwards for long without it running and being sensitive. The comfort of the Scleral is far better but the vision is worse. Yesterday I went to start the process of having a Scleral fitted in my right eye. The RGP isn’t causing major problems, it can get watery when something blows in the eye but I get good long term wear from roughly 7am until 11pm. It’s not as comfortable as the Scleral but it’s manageable. I drive, work lots on computers etc. The ophthalmologist was unable to get good vision from the Scleral and following a scan informed me that the scarring on both eyes is the reason why the Scleral’s aren’t improving vision. He has ordered the new lens anyway and said I should build up wear even though in his words ‘the vision will be lousy’.

He is not wanting me to continue with RGP’s as he is worried that the rubbing of the lens is damaging the cornea further. He then said he would need to speak to the cornea specialist about next steps and potential for a graft. I was in complete shock as for the last 20plus years I had always been assured that my KC was ‘mild’.

The tough of a graft is terrifying for so many reasons, I read posts on this forum where people have lost their jobs, have terrible life limiting vision and have been registered as legally blind.

If I can continue to maintain decent enough vision from one Scleral and one RGP should I be pushing to stick with it.

I feel very confused and upset right now. I would be grateful for any advice.
Thanks
Emma

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gsward
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Re: Aged 43 and potentially need graft- terrified

Postby gsward » Fri 07 Jan 2022 11:05 am

A lot of us go through most of life with 'mild' KC that is successfully managed with RGP and later Scleral lenses. Mine started to progress again a little older than you and increasingly getting a good fit was more of a challenge for the optometrists and changes in fit and prescription became more frequent.

What's the right thing for your needs to be discussed thoroughly between you and your consultant. The general principle is to put a graft off as long as possible. I'm now on the good side of two grafts (both eyes) and can read and 'live' without spectacles which is remarkable. It is hard to predict outcomes but there are many 'success' stories for grafts which of course go unreported. The statistics show excellent long-term survival rates with over 90% still working well after 10 years.

If you are being told you have got to the end of the road with lenses you certainly need to heed that advice as it is not going to get better. You should find this article a helpful read When to go for the transplant. It is written by a very experienced Scleral lens optometrist at Moorfields.

Do come back to us with specific questions.

Graham

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: Aged 43 and potentially need graft- terrified

Postby Anne Klepacz » Fri 07 Jan 2022 11:13 am

Hello Emma and welcome to the forum. The trouble with forums like this is that people only post when they are having problems, so it's easy to get a very skewed idea about a treatment. There are lots of us who have had corneal transplants which have worked well. But not many people come back to tell us that - they just get on with their lives and disappear from the forum! Having said that, transplants are the last resort for KC and usually done when either contact lenses can no longer correct the vision well enough or if contact lenses can't be tolerated any more. Scarring of the cornea is a common side effect of KC itself and of years of contact lens wear, and optometrists are keen to avoid more damage to the cornea. So the move to sclerals is designed to help with that, although another alternative that's often used is to 'piggy back' - wearing a soft lens under the rgp so it might be worth asking whether that's an option for your right eye if you do find your vision is worse with the scleral when it comes.
When to go for a graft is a very individual thing. I really didn't have to think about it before my first graft. I'd already had to give up driving, my vision with contact lenses was 'lousy' and I was really struggling at work. There's a very good article on our home page about when to have a graft, written by Ken Pullum, Principal Optometrist at Moorfields which you might find helpful. And do watch the video of the talk consultant Bita Manzouri gave to the group about KC which talks a lot about grafts. And of course, do come back with more questions. We can't tell you what to do, but we can share our experiences.
As I was writing this, I see Graham was responding with very similar advice - not a conspiracy, I asssure you!

PJRK20
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Joined: Thu 17 Jun 2021 7:38 pm
Keratoconus: Yes, I have KC
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Re: Aged 43 and potentially need graft- terrified

Postby PJRK20 » Fri 07 Jan 2022 12:06 pm

Thank you both for your replies. It makes sense that people posting tend to be those who have faced challenges. I am due to see my ophthalmologist in about 5 weeks. I will certainly ask him about piggy backing and the long term prognosis for continuing as I am,
Thanks again
Emma


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