Hi Will,
Before you have transplants, find out whether scleral lenses would suit you. They could save you from having surgery.
I have had transplants in both eyes and would be happy to talk about the experience. Please email me on :-
janetmanning@lineone.net if you would like to chat.
Best wishes, Janet
Quicktopic posts: Jun 2003
Moderators: Anne Klepacz, John Smith, Sweet
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Andrew Bosanquet
Hi Jane
Sorry to hear of your son’s recent diagnosis. I was diagnosed at the age of 10, I am now 51 and have a normal career. Most people who I meet never know I have an eye problem because of excellent care and good lenses fitted initially by Moorfields and for the last 25 years at Bristol Eye Hospital. Until I was 23 it was tough as standard sized lenses were not available for KC. Now my eyes are getting tired of lenses, but I may be able to go back to glasses (not worn for 35 years) again.
My advice after 40 years of KC is to make sure your son has the best lens fitting that you can find, so that they work well for as long as possible. If you can, go to a hospital where the Optometrists fit a lot of KC lenses - the two in Bristol spend about 25% of their time doing KC so they are good at it.
Don't be a builder! Dust and lenses are not a good idea.
Andrew
Sorry to hear of your son’s recent diagnosis. I was diagnosed at the age of 10, I am now 51 and have a normal career. Most people who I meet never know I have an eye problem because of excellent care and good lenses fitted initially by Moorfields and for the last 25 years at Bristol Eye Hospital. Until I was 23 it was tough as standard sized lenses were not available for KC. Now my eyes are getting tired of lenses, but I may be able to go back to glasses (not worn for 35 years) again.
My advice after 40 years of KC is to make sure your son has the best lens fitting that you can find, so that they work well for as long as possible. If you can, go to a hospital where the Optometrists fit a lot of KC lenses - the two in Bristol spend about 25% of their time doing KC so they are good at it.
Don't be a builder! Dust and lenses are not a good idea.
Andrew
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Matt
Practical question for those with scleral lenses:
There appears to be something on an Amidose drought at the moment. Moorfields doesn't even have steripods which themselves are less desirable because they don't have a screw-top. For those wearing sclerals (like me!) what saline options are you resorting to at the moment? What advise are you being given about saline choices for sclerals?
Matt
There appears to be something on an Amidose drought at the moment. Moorfields doesn't even have steripods which themselves are less desirable because they don't have a screw-top. For those wearing sclerals (like me!) what saline options are you resorting to at the moment? What advise are you being given about saline choices for sclerals?
Matt
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John Smith
Here's a question to the scleral-wearers amongst us.
I've finally got my new specs, and can therefore start wearing my scleral lens. I did so yesterday, and the vision is pretty excellent - not as good as the transplanted eye with specs alone, but better than the old RGP lens.
Ken P. suggested that I didn't need to gradually increase the wearing time as I was already wearing an RGP.
Yesterday was my first "proper" day with the scleral, and when I removed it 9-10 hours after insertion, the eye was very bloodshot with a rather prominent blood vessel snaking its way to the iris.
Is this normal? Is this bad enough to avoid wearing the scleral and getting an appointment to see Ken again? Or should I just wait until the bloodshot receeds and gradually increase wearing time from a couple of hours...
Cheers,
John
I've finally got my new specs, and can therefore start wearing my scleral lens. I did so yesterday, and the vision is pretty excellent - not as good as the transplanted eye with specs alone, but better than the old RGP lens.
Ken P. suggested that I didn't need to gradually increase the wearing time as I was already wearing an RGP.
Yesterday was my first "proper" day with the scleral, and when I removed it 9-10 hours after insertion, the eye was very bloodshot with a rather prominent blood vessel snaking its way to the iris.
Is this normal? Is this bad enough to avoid wearing the scleral and getting an appointment to see Ken again? Or should I just wait until the bloodshot receeds and gradually increase wearing time from a couple of hours...
Cheers,
John
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Jeet
Hey Matt,
Try your local Boots, they have their own brand preservative free saline. Unfortunately they too are single use only. It’s been a while since I bought some but you could get a box for about £5. It’s not a bad alternative. I find Amidose drys my eyes, this stuff is a little better for me.
hope this helps.
Try your local Boots, they have their own brand preservative free saline. Unfortunately they too are single use only. It’s been a while since I bought some but you could get a box for about £5. It’s not a bad alternative. I find Amidose drys my eyes, this stuff is a little better for me.
hope this helps.
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John Smith
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Dawn
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harpomatrix@yahoo.co.uk
Hi
I don't know if anyone remembers me but doesn't matter anyway. I was last on here a few months ago. Just to update, I had hydrops from November to about march. After it cleared up my cornea had scarred and as of last month I have been booked for a cornea transplant for sept 8. Scary stuff. Just worried about a lot of things hopefully it won't affect my 3rd year of uni which i begin in oct.
I'm going to the conference on sat. feels a little weird going to this thing for the first time. Not sure about what to expect. See ya soon
I don't know if anyone remembers me but doesn't matter anyway. I was last on here a few months ago. Just to update, I had hydrops from November to about march. After it cleared up my cornea had scarred and as of last month I have been booked for a cornea transplant for sept 8. Scary stuff. Just worried about a lot of things hopefully it won't affect my 3rd year of uni which i begin in oct.
I'm going to the conference on sat. feels a little weird going to this thing for the first time. Not sure about what to expect. See ya soon
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Paul Bines
Will,
No problem!
The first graft was a more experimental type, so I was in hospital for a week, and off work for a couple of months. That was 12 or so years ago at Moorfields (Mr Buckley)
The most recent grafts (Southend Hospital, Mr Kasabi), however, went so well that I was able to return to work after a week (I work in IT, with a lot of screen work) though I'm still not supposed to lift heavy weights, or do a lot of bending/stooping. I don't drive, so that is not an issue for me. I take cloramphenicol and dexamethasone 4 times a day (eye drops) and, apart from that, my daily routine is as normal as it can get!
The eyesight does vary from day to day - only to be expencted; the grafts are still in the process of 'settling in'! However, I have yet to have the stitches taken out, so there is still some settling to do!
The main reason for the regraft on my left (and for the relatively wait between the most recent ops) is that I had the complication of corneal ulcers on the Moorfields graft - this is not (as far as I'm aware) anything to do with the grafting procedure, or with rejection, but just my bad luck; however, the ulcers did bump me up the list and onto a research scheme investigating whether matched grafts reduce rejection.
If I can help with any further info (purely from personal experience!) please do let me know!
Au Res.,
Paul
No problem!
The first graft was a more experimental type, so I was in hospital for a week, and off work for a couple of months. That was 12 or so years ago at Moorfields (Mr Buckley)
The most recent grafts (Southend Hospital, Mr Kasabi), however, went so well that I was able to return to work after a week (I work in IT, with a lot of screen work) though I'm still not supposed to lift heavy weights, or do a lot of bending/stooping. I don't drive, so that is not an issue for me. I take cloramphenicol and dexamethasone 4 times a day (eye drops) and, apart from that, my daily routine is as normal as it can get!
The eyesight does vary from day to day - only to be expencted; the grafts are still in the process of 'settling in'! However, I have yet to have the stitches taken out, so there is still some settling to do!
The main reason for the regraft on my left (and for the relatively wait between the most recent ops) is that I had the complication of corneal ulcers on the Moorfields graft - this is not (as far as I'm aware) anything to do with the grafting procedure, or with rejection, but just my bad luck; however, the ulcers did bump me up the list and onto a research scheme investigating whether matched grafts reduce rejection.
If I can help with any further info (purely from personal experience!) please do let me know!
Au Res.,
Paul
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KateF
to Jane
hiya, best wishes to yur son, adjusting to The Knowledge is a difficult thing isnt it?
My son has really bad KC but he has many other problems too being Downs and pretty - ummm- unusual in behaviour!!
I went through real grieving and anger and the whole lot, told evryone my son was going blind (untrue) then left it alone and didnt ask anyone anything for an age, then got my act together, following the KC sites carefully, and tracked down the BEST guy to deal with MUMS AND sons with KC - now I feel cOnfident that although i dont know what KC will bring, I do know I'm doing my very best to meet it. The top guy is Ken Pullum at Moorfields , also sees people privately at Hertford, which is a long way from my house but was worth every minute of the drive.
He's sorted out a means whereby my son (age 17) can have scleral lenses and a huge improvement in vision.
Also wanted to say that on the site you tend to get the severest KC Tales told,eg transplant, whereas actually there are many grades of difficulty but the less severely affected people dont need to rely on the site and dont have so much to say - so dont think that all the things mentioned will have to happen to you.
KateF
hiya, best wishes to yur son, adjusting to The Knowledge is a difficult thing isnt it?
My son has really bad KC but he has many other problems too being Downs and pretty - ummm- unusual in behaviour!!
I went through real grieving and anger and the whole lot, told evryone my son was going blind (untrue) then left it alone and didnt ask anyone anything for an age, then got my act together, following the KC sites carefully, and tracked down the BEST guy to deal with MUMS AND sons with KC - now I feel cOnfident that although i dont know what KC will bring, I do know I'm doing my very best to meet it. The top guy is Ken Pullum at Moorfields , also sees people privately at Hertford, which is a long way from my house but was worth every minute of the drive.
He's sorted out a means whereby my son (age 17) can have scleral lenses and a huge improvement in vision.
Also wanted to say that on the site you tend to get the severest KC Tales told,eg transplant, whereas actually there are many grades of difficulty but the less severely affected people dont need to rely on the site and dont have so much to say - so dont think that all the things mentioned will have to happen to you.
KateF
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