Hi Janet (1254)
Thanks for the advice. I went to see my Doctor today and she has agreed that I can get the steripod blue on prescription. I am releived because I had a look in the chemist and found out its £12 a box - I nearly fell over in shock!
Which supermarket do you get your miraflow in? I have looked in all of them and cant find it. If I can't get miraflow do you think it will be ok to use the Boston cleaner which I use for my corneal lenses.
Thanks
Abbey
Quicktopic posts: Jan 2003
Moderators: Anne Klepacz, John Smith, Sweet
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rosemary@umbilical.demon.
Gabriella said:
One more question. I read that the condition is progressive but tend to stop after about 10 to 20 years.
I have been diagnosed 23 years ago but have the feeling that my right eye got worse during the last few years. According to
that theory the worst should be over for me by now(??? )
I've heard that theory too! - but I think mine have been
deteriorating over the last few years, after maybe a period of
stability before that. I was diagnosed at about 14 and am now
(errrm, cough, mumble mumble) 41.
Rosemary
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Rosemary F. Johnson
One more question. I read that the condition is progressive but tend to stop after about 10 to 20 years.
I have been diagnosed 23 years ago but have the feeling that my right eye got worse during the last few years. According to
that theory the worst should be over for me by now(??? )
I've heard that theory too! - but I think mine have been
deteriorating over the last few years, after maybe a period of
stability before that. I was diagnosed at about 14 and am now
(errrm, cough, mumble mumble) 41.
Rosemary
--
Rosemary F. Johnson
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rosemary@umbilical.demon.
Harpo said:
Its now been 6 weeks and 3 days since I got the "severe" hydrops in my right eye. I last saw the doc just before xmas and he said that there had been no improvement. It was stll bulging outwards a lot and looking blue.
Crumbs, Harpo!! It is taking a long time. I'm not surprised
you're fed up with it!
Looking blue..... oh. I dunno why blue......
bulges. However there may be some slight improvement in terms
that some of the fog seems to have disappeared on the right hand side of my right cornea. Its only a small fraction but i can see how many fingers are on my hand if i put my hand as far right if i look straight ahead. But if i move my hand more central to the eye the hand disappears.
That's what happened to mine - the centre was still fogged over
and the vision started to come back at the edges. It does sound like it is starting to clear at last. At last! indeed. I hope
it does now clear over nicely, now it has started.
I hope your tutor and uni staff are being supportive? I remember how worrying it was when I got a hydrops shortly before exams -
and I'd had one before and "knew the ropes", as it were. Do you have an student union welfare officers who can advise you?
Good luck with your appointment on 16th - hope it brings good
news.
Rosemary
--
Rosemary F. Johnson
Its now been 6 weeks and 3 days since I got the "severe" hydrops in my right eye. I last saw the doc just before xmas and he said that there had been no improvement. It was stll bulging outwards a lot and looking blue.
Crumbs, Harpo!! It is taking a long time. I'm not surprised
you're fed up with it!
Looking blue..... oh. I dunno why blue......
bulges. However there may be some slight improvement in terms
that some of the fog seems to have disappeared on the right hand side of my right cornea. Its only a small fraction but i can see how many fingers are on my hand if i put my hand as far right if i look straight ahead. But if i move my hand more central to the eye the hand disappears.
That's what happened to mine - the centre was still fogged over
and the vision started to come back at the edges. It does sound like it is starting to clear at last. At last! indeed. I hope
it does now clear over nicely, now it has started.
I hope your tutor and uni staff are being supportive? I remember how worrying it was when I got a hydrops shortly before exams -
and I'd had one before and "knew the ropes", as it were. Do you have an student union welfare officers who can advise you?
Good luck with your appointment on 16th - hope it brings good
news.
Rosemary
--
Rosemary F. Johnson
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Janet Manning
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Abigail
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Clare Feary
Gabriella
i was diagnosed when I was about 14 or 15 and am now nearly 30 (crikey!!!) I have found that at the start there wasn't much deteriation with my KC and then after a few years it got quite worse quite quickly then slowed down again. My optician (and I)is now hoping that it won't get much worse in the left eye but about a year ago I found out that it has now started in my other eye although it only showed up on some sort of mapping test that I had done at my local hospital. But I have heard that in many cases it does slow down in people who were diagnosed with KC at an early age. So good luck and don't let it get you down.
Sue
Am going to get my new lenses on Monday. Am very very excited it's like having Xmas again!!!! Will let you know how I get on.
To anyone who is having trouble finding a good optician who knows KC well. i have only just found one after all these years. I have found that asking your consultant at your local hospital is probably the best way (well that is how it was for me) although I did have to persuade my own GP to refer me to the consultant. it is well worth the fight so don't get disheartened.
i was diagnosed when I was about 14 or 15 and am now nearly 30 (crikey!!!) I have found that at the start there wasn't much deteriation with my KC and then after a few years it got quite worse quite quickly then slowed down again. My optician (and I)is now hoping that it won't get much worse in the left eye but about a year ago I found out that it has now started in my other eye although it only showed up on some sort of mapping test that I had done at my local hospital. But I have heard that in many cases it does slow down in people who were diagnosed with KC at an early age. So good luck and don't let it get you down.
Sue
Am going to get my new lenses on Monday. Am very very excited it's like having Xmas again!!!! Will let you know how I get on.
To anyone who is having trouble finding a good optician who knows KC well. i have only just found one after all these years. I have found that asking your consultant at your local hospital is probably the best way (well that is how it was for me) although I did have to persuade my own GP to refer me to the consultant. it is well worth the fight so don't get disheartened.
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Alison-
I have just recently been introduced to this site through a friend. I am not the one with KC, but to understand, or at least to try and understand a little about the condition, my friend offered me the address to this site. Truthfully, i had never heard of KC before i met my friend. I have known her for about 3 years now, about the same amount of time as she has been diagnosed as having KC.
While i do not pretend to understand about what a person might go through with this condition, i do want to know more about it. If for nothing else, just so that i could offer support to my friend on her “Down” days.
It is hard for someone like me to understand what someone with KC goes through. I am lucky to have such a good friend though, who is patient and will explain things, even when i say the most silly things. Truly i don’t know who offers the most support....... me for her down days, or her for being so patient with me, but patient she is.
My Friend gets on with her life without a complaint, she accepts what she must because i don’t think she sees herself as being different from anyone else. I guess it’s people like me that treat her as being different. This is why i found it important to understand more about KC. It is all too easy to forget that she has trouble seeing something when it’s quite clear to me. Of course, we can make jokes about it now, and that is all to her credit.
Recently she had to go to the hospital for another check up, and new contacts. She was so worried about what would be said , or how bad her eyes had become. This is also a hard time for friends and family, because we want to tell her “It will be alright” but what do we know?. It’s times like this when words sound so cheep, and yet, all we want to do is reassure her. The courage she shows holds no limits.
What i am trying to say in this long winded post is.......... I’ll never sit there and tell her i know what she is going through, because i don’t. I will never sit and tell her everything will be alright, because i don’t know that. But what i will do, is be there for her. She knows where i am, if and when she needs to talk. She knows where i am if she needs to shout and scream. But most of all, she knows where i am when all she wants to do is cry, because soon enough, those tears will be from laughter. For if i can put a smile on her face, then my work, and work i gladly take on, will be done.
For Michelle, my thanks go to you, for being understanding and for taking the time to explain things to me.
While i do not pretend to understand about what a person might go through with this condition, i do want to know more about it. If for nothing else, just so that i could offer support to my friend on her “Down” days.
It is hard for someone like me to understand what someone with KC goes through. I am lucky to have such a good friend though, who is patient and will explain things, even when i say the most silly things. Truly i don’t know who offers the most support....... me for her down days, or her for being so patient with me, but patient she is.
My Friend gets on with her life without a complaint, she accepts what she must because i don’t think she sees herself as being different from anyone else. I guess it’s people like me that treat her as being different. This is why i found it important to understand more about KC. It is all too easy to forget that she has trouble seeing something when it’s quite clear to me. Of course, we can make jokes about it now, and that is all to her credit.
Recently she had to go to the hospital for another check up, and new contacts. She was so worried about what would be said , or how bad her eyes had become. This is also a hard time for friends and family, because we want to tell her “It will be alright” but what do we know?. It’s times like this when words sound so cheep, and yet, all we want to do is reassure her. The courage she shows holds no limits.
What i am trying to say in this long winded post is.......... I’ll never sit there and tell her i know what she is going through, because i don’t. I will never sit and tell her everything will be alright, because i don’t know that. But what i will do, is be there for her. She knows where i am, if and when she needs to talk. She knows where i am if she needs to shout and scream. But most of all, she knows where i am when all she wants to do is cry, because soon enough, those tears will be from laughter. For if i can put a smile on her face, then my work, and work i gladly take on, will be done.
For Michelle, my thanks go to you, for being understanding and for taking the time to explain things to me.
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Kate
Hi everyone -
My son has Down's syndrome and keratoconus, currently with acute hydrops. He's 17. Anyone out there who has anything (or a lot!) in common ?!!
e-mail me on kdfarminer@tiscali.co.uk
My son has Down's syndrome and keratoconus, currently with acute hydrops. He's 17. Anyone out there who has anything (or a lot!) in common ?!!
e-mail me on kdfarminer@tiscali.co.uk
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John Smith
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John Smith
Hot on the heels of Robert (as usual), it's my turn to celebrate a year post-graft.
I saw my consultant yesterday, and it's good news.
For those new to the group, I had my graft in January, on hourly steroids and antibiotics 4 times a day. A month later, the antibiotics stopped, the eye was no longer blood red, and vision was stabilising, albeit getting worse. My consultant reassured me that the vision would be correctable with glasses, and that was a very good sign.
Gradual reduction in drops continued until the summer when I started getting giddy spells and loss of vision in the grafted eye when standing up. This was traced to high pressure in the eye, caused by a reaction to the dexamethasone steroids.
Anti-pressure drops and a switch to FML steroid soon solved that problem, and I got right down to 1 drop per day... and then at the end of September I had a rejection scare.
Back to hourly drops of dexamethasone, but with the anti-pressure timolol too as a precaution. A week later the rejection was under control. The graft had stabilised again, and as it happens, into a better shape than previously! Giddy spells returned, but once again, a switch to FML stopped that.
As the first year came to an end, it's all go. On Thursday, my consultant was very happy with the graft. It's very clear and stable. So much so that the stitch is going to remain in place for another 12-18 months. This coming Monday, I'm off to Moorfields for the first time to see about getting a scleral lens for the other eye, which has unfortunately got a lot worse in the last year. On top of all that, I'm moving house on Thursday, so I'd better get back to the packing!!!
All the best,
John
I saw my consultant yesterday, and it's good news.
For those new to the group, I had my graft in January, on hourly steroids and antibiotics 4 times a day. A month later, the antibiotics stopped, the eye was no longer blood red, and vision was stabilising, albeit getting worse. My consultant reassured me that the vision would be correctable with glasses, and that was a very good sign.
Gradual reduction in drops continued until the summer when I started getting giddy spells and loss of vision in the grafted eye when standing up. This was traced to high pressure in the eye, caused by a reaction to the dexamethasone steroids.
Anti-pressure drops and a switch to FML steroid soon solved that problem, and I got right down to 1 drop per day... and then at the end of September I had a rejection scare.
Back to hourly drops of dexamethasone, but with the anti-pressure timolol too as a precaution. A week later the rejection was under control. The graft had stabilised again, and as it happens, into a better shape than previously! Giddy spells returned, but once again, a switch to FML stopped that.
As the first year came to an end, it's all go. On Thursday, my consultant was very happy with the graft. It's very clear and stable. So much so that the stitch is going to remain in place for another 12-18 months. This coming Monday, I'm off to Moorfields for the first time to see about getting a scleral lens for the other eye, which has unfortunately got a lot worse in the last year. On top of all that, I'm moving house on Thursday, so I'd better get back to the packing!!!
All the best,
John
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