help!!!!

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clairecon
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Keratoconus: Yes, I have KC
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help!!!!

Postby clairecon » Sat 20 Jun 2009 3:52 pm

hi im 18 and have been diagnosed with KC in both eyes but worse in right eye. i have been given an option to have a cornea transplant/graft. i was just wondering if anyone has had this operation and if so how effective it has been and what you have to do after it. can some please help i dont know what to do.

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Andrew MacLean
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Keratoconus: Yes, I have KC
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Re: help!!!!

Postby Andrew MacLean » Mon 22 Jun 2009 10:00 am

Hello, and welcome to the forum.

I have moved your post because I think it is likely to get more 'hits' and therefore more responses in the General Discussion Forum. First of all, let me say this: Don't Panic! I speak from experience, I tried panic as a coping strategy and it didn't really work :oops:

Yes there are lots of people here who have had corneal transplants. I have had one in each eye, but I was a great deal older than you are before I had my first. Have they said why they want to proceed to a graft so soon? It may be that your keratoconus has already become advanced and other options are, therefore, no longer viable.

On the other hand, many people find that contact lens wear can give them good corrected vision and that they can function normally for many years without having surgery.

Every good wish.

Andrew

ps I have benefitted tremendously from both my corneal grafts: I am able to see clearly with glasses for one eye and a contact lens for the other. The recovery period is not quick, but in my case the wait was well worth while.

A
Andrew MacLean

Lizb
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Re: help!!!!

Postby Lizb » Mon 22 Jun 2009 10:39 am

How long have you been diagnosed?

I have found that my local hospital dont have much knowledge of KC and the options available for KC, and i was informed that if contact lenses didnt work then a graft would be the only option where i knew that there were other possibilities available (may not be suitable but at least investigate them). Could this be the case with yours? Have you had a second opinion regarding the graft? it may be worth asking for a referral to a local eye specialist hospital, where the staff may be a bit more informed about options available to you.

Good luck in researching all your options, dont be afraid to ask. My advice would be to take someone with you to appointments as i have found having someone with me means i can double check with them what has been said or they can ask questions that i may forget.
Life is too short for drama & petty things!
So laugh insanely, love truly and forgive quickly!


I´m not strange, I´m just not normal

Every sixty seconds you spend angry, upset or mad is a full minute of happiness you never get back

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: help!!!!

Postby Anne Klepacz » Mon 22 Jun 2009 11:33 am

Hello and welcome!
As I've just said in another post, if you e-mail me anne@keratoconus-group.org.uk with your postal address, I can send you the DVD of our 2007 conference, which covered all the current options for keratoconus.
Like Andrew, I've had corneal transplants in both eyes, though not until my contact lenses no longer gave me good enough vision to function. And these days there are other options, although whether they can be used does depend on how advanced the KC is.
All the best
Anne

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GarethB
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Re: help!!!!

Postby GarethB » Mon 22 Jun 2009 5:37 pm

It never ceases to amaze me how many people are rcently diagnosed and grafts are suggested so soon. Some cases may be genuine but you at least need to consider other options.

Intacs for a start may help give a more regular cornea and I have at least 6 people contact me regarding the fact they gave the silicone hydrogel soft lenses for KC a go and can as well if not better than when they could tolerate RGP's. Through another source I was made aware of one person who had corneal scaring which has since faded now they are on soft silicone hydriogel lenses for KC and they get excellent vision.

Have a look at the information Anne can supply you with and arange to see your consult and ask why each if the different techniques often discussed here won't work and what the grounds for a graft being suggested.

Graft's are very beneficial as I have had one in each eye but I still believe with the many options available now that it is a last resort management because once done it rules out pretty much all other surgical techneques and most graftees require contact lenses or glasses. I think there are more KC people post graft with contact lenses than glasses.

If graft is the only option the good news is that it has a very high success rate.
Gareth

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rosemary johnson
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Re: help!!!!

Postby rosemary johnson » Mon 22 Jun 2009 5:48 pm

Hallo, and welcome to the forum.
I agree with the others - straight from diagnosis to transplant does sound mighty drastic!
And once you have had a transplant done, it can never be undone. And you'd be quite likely to end up wearing contact lenses still after a graft, so if you con't wear them now, you could end up stuck after a transplant.
Good luck.
Rosemary


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