Came out of hospital yesterday aster my graft in my lefy eye a bit sore but all is good. I have to say East Grinstead hospital is fantastic and Mr Daya and his team are brilliant. Am on Antibiotic drops at the mo, and ther is a snall sore which they noticed during the graft. Stoop if you are out there hope you are doing well and you can e mail me on leondavis77@hotmail.com
Kepp well all
Regards
Leon
Quicktopic posts: Sep 2003
Moderators: Anne Klepacz, John Smith, Sweet
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KateF
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sarah marsh
thanks for responses on stitches, i havent been on line for a few days due to the fact that my op eye worsened,i was taken in to the hospital that i had eye done. i woke up one morning and the eye was blood shot, sticky and sore and weeping white blobs. i had to go i straight away and managed to see my surgeon. one of the major stitches was lose and actually sticking up into eye causing the problem.after 3 attempts he managed to cut it but had to cut through the nylon (what ever that is ). he told me that i would have to go back in to theatre and have the other 14 stitches out , needless to say i was hysterical and after all the probs i had with hospital i have refused( i know some of u will think that im being silly ) but after everything ( and including my mild heard attack from stress and worry from transplant just before i had surgery ) my surgeon agreed although not too happy but has said that if eye is sore i will have to go in and have them out one by one. i can cope with one by one although he said it would take 2 years so im just buying time really !
but if i hadnt gone in to see surgeon by my appointment on monday eye would have rejected it.
i have to increase my pred forte to 3 times aday till monday and also got different eye drops (EXOCIN) for a week .
surgeon is still trying to convince me to go on list for right eye to be done ( again needless to say ) i am not having it !
does anyone else feel the same? you all seem to happy with your transplant and i dont see it that way ( no pun intended). i am a big chicken and very jumpy which is why surgeon prefers me knocked out ! i even made him jump which he neva done before! although we did laugh about it after wards ! he has the patients of a saint !
anyway hope everyone is ok !
sarah
but if i hadnt gone in to see surgeon by my appointment on monday eye would have rejected it.
i have to increase my pred forte to 3 times aday till monday and also got different eye drops (EXOCIN) for a week .
surgeon is still trying to convince me to go on list for right eye to be done ( again needless to say ) i am not having it !
does anyone else feel the same? you all seem to happy with your transplant and i dont see it that way ( no pun intended). i am a big chicken and very jumpy which is why surgeon prefers me knocked out ! i even made him jump which he neva done before! although we did laugh about it after wards ! he has the patients of a saint !
anyway hope everyone is ok !
sarah
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mark lockhart
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Janet Manning
Hi Mark,
Next May seems like a very long time to wait for an appointment, but you will probably notice little if any change in your vision between now and then. KC usually progresses slowly and can remain stable for years. What you need more urgently is advice on how to get the best correction of your sight. Many people with KC manage with glasses for a long time, whilst others find that contact lenses are the only option. Usually people go to rigid gas permeable corneal contact lenses initially and then if necessary progress to scleral lenses. More info on these on the website. There are loads of options and combinations, depending on the severity of the KC.
What are you using at present? You seem to have a 'switched on' optician who has at least recognised what the problem is.
Good luck with becoming a Dad!
Janet
Next May seems like a very long time to wait for an appointment, but you will probably notice little if any change in your vision between now and then. KC usually progresses slowly and can remain stable for years. What you need more urgently is advice on how to get the best correction of your sight. Many people with KC manage with glasses for a long time, whilst others find that contact lenses are the only option. Usually people go to rigid gas permeable corneal contact lenses initially and then if necessary progress to scleral lenses. More info on these on the website. There are loads of options and combinations, depending on the severity of the KC.
What are you using at present? You seem to have a 'switched on' optician who has at least recognised what the problem is.
Good luck with becoming a Dad!
Janet
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mark
hi janet
i have just changed opticians because i noticed a big change in my right eye and the old optician didn't do anything about it everything is very blurred even with new glasses. i am only using glasses as thats all i have been proscribed at the present time i have just been worrying about how bad it was going to get and roughly how long before it gets bad.
thanks mark
i have just changed opticians because i noticed a big change in my right eye and the old optician didn't do anything about it everything is very blurred even with new glasses. i am only using glasses as thats all i have been proscribed at the present time i have just been worrying about how bad it was going to get and roughly how long before it gets bad.
thanks mark
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Sue Ingram
Dear Jayne (2008), Sorry to hear that your daughter is having problems. I live in the Surrey so do not know of anyone in the Newcastle area. However, I just wanted to suggest that your daughter ensures that she looks into all the options for managing KC before going for the graft (big decision!).
It may be that scleral lenses (which cover the whole eye) could help her if she cannot wear corneal lenses any more. I experienced this after wearing corneals for over 20 years and am now very happy with sclerals which are much more comfortable. There is info on sclerals on the KC website http://www.kerataconus-group.org.uk but please email me on sue.ingram@virgin.net if you have any questions. Wishing your daughter luck. SUE
It may be that scleral lenses (which cover the whole eye) could help her if she cannot wear corneal lenses any more. I experienced this after wearing corneals for over 20 years and am now very happy with sclerals which are much more comfortable. There is info on sclerals on the KC website http://www.kerataconus-group.org.uk but please email me on sue.ingram@virgin.net if you have any questions. Wishing your daughter luck. SUE
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Laura Thorne
Ho all havent written in absolutely ages. Was wondering if anyone has any advice to my following situation. Im just about to go to uni in couple of weeks and after putting down that i had a disability on my ucas form i had a couple of interviews at unis to explain my keratoconus. Both of these universtites seemed to believe that I would be able to apply for a DSA ( Disabilities Grant )to help with my studying such as font enlarging software for a computor and also extra photocopying allowances etc, the process on a whole takes about three months, where you are ment to be assessed for your disability. Anyway to cut it short i have been rejected because aparently because i wear contact lenses im like anyother abled body regardless of the fact that some days as you all know it is vertually imposs to wear hard contacts for any length of time, I now have four weeks to prove im eligable ne one have any pointers?
Thanx
Thanx
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Janet Manning
Hi Laura,
How about sending the people making the decision about your grant one of the KC group leaflets for schools and colleges as a starting point. Anne Klepacz will send you one. Address details should be on the website. Or just ask through this discussion page and I'm sure she'll get back to you.
Secondly I suggest you write an exemplar diary of your lens wearing time, the conditions that affect your wearing time e.g. air conditioning, cold/windy weather. If you get eczema around your eyes or have allergies that affect your eyes make a note of these and how they affect lens wearing time. You are used to coping, so probably no longer make a fuss about things that others would find very difficult. Basically you have to present the worst case scenario of how KC could affect your work when you are having a bad eye day and emphasise that. Then hopefully you will get the assistance you deserve, in order to cope on bad eye days.
Remember you'll have to be assertive to get what you deserve.
Good Luck!
Janet
Hi Mark,
How about trying corneal lenses? I was diagnosed in my late 20s, but had probably had KC for years already and had been wearing hard contact lenses for 10 years by then. I managed with these for 30 years before needing anything else.
I don't know where you live, but I used to get my corneals from David Clulow's and they were always very good and even had a KC specialist in Kingston upon Thames. They also provided replacements by return of post - a sore point for me at present if you have read my posting about 2 weeks ago. Clulows also have a practice in Kensington. Very good insurance scheme for replacements even including new prescriptions.
Best wishes Janet
To everyone,
Re my attempts to get a spare set of lenses. I decided I couldn't take the angst everytime I needed a new lens and have bought a spare set through the hospital - £400, (as well as my NHS replacement) but then my glasses cost £320 and I can't even see much with them!! Now at least I'll have some back up when a lens needs replacing. It's just annoying that this expenditure is only necessary because of inefficiency in the system.
Because of the blurry patch on the lens the vision in my left eye was down by at least a whole line on Friday with mistakes higher up the chart too. The hospital claim to understand but it still took them a week to even request my notes from the store. It's interesting that I finally received a phonecall within an hour of asking the administrator about the complaints procedure! Then I was told that there was no record of my prescription in the file - not true. I saw it for myself on Friday. Had Ken not been due on one of his 6 weekly visits last Friday I doubt I'd have made any progress. Ken to the rescue once more!!! (We really will have to get hima big white charger - would probably be more reliable than the train!)
I intend to write some letters despite having solved my personal problem, because not all of us can afford to buy a spare set.
Just waiting to get my replacement lens as I 'm attending a conference next week and will be stuffed without it.
Janet
How about sending the people making the decision about your grant one of the KC group leaflets for schools and colleges as a starting point. Anne Klepacz will send you one. Address details should be on the website. Or just ask through this discussion page and I'm sure she'll get back to you.
Secondly I suggest you write an exemplar diary of your lens wearing time, the conditions that affect your wearing time e.g. air conditioning, cold/windy weather. If you get eczema around your eyes or have allergies that affect your eyes make a note of these and how they affect lens wearing time. You are used to coping, so probably no longer make a fuss about things that others would find very difficult. Basically you have to present the worst case scenario of how KC could affect your work when you are having a bad eye day and emphasise that. Then hopefully you will get the assistance you deserve, in order to cope on bad eye days.
Remember you'll have to be assertive to get what you deserve.
Good Luck!
Janet
Hi Mark,
How about trying corneal lenses? I was diagnosed in my late 20s, but had probably had KC for years already and had been wearing hard contact lenses for 10 years by then. I managed with these for 30 years before needing anything else.
I don't know where you live, but I used to get my corneals from David Clulow's and they were always very good and even had a KC specialist in Kingston upon Thames. They also provided replacements by return of post - a sore point for me at present if you have read my posting about 2 weeks ago. Clulows also have a practice in Kensington. Very good insurance scheme for replacements even including new prescriptions.
Best wishes Janet
To everyone,
Re my attempts to get a spare set of lenses. I decided I couldn't take the angst everytime I needed a new lens and have bought a spare set through the hospital - £400, (as well as my NHS replacement) but then my glasses cost £320 and I can't even see much with them!! Now at least I'll have some back up when a lens needs replacing. It's just annoying that this expenditure is only necessary because of inefficiency in the system.
Because of the blurry patch on the lens the vision in my left eye was down by at least a whole line on Friday with mistakes higher up the chart too. The hospital claim to understand but it still took them a week to even request my notes from the store. It's interesting that I finally received a phonecall within an hour of asking the administrator about the complaints procedure! Then I was told that there was no record of my prescription in the file - not true. I saw it for myself on Friday. Had Ken not been due on one of his 6 weekly visits last Friday I doubt I'd have made any progress. Ken to the rescue once more!!! (We really will have to get hima big white charger - would probably be more reliable than the train!)
I intend to write some letters despite having solved my personal problem, because not all of us can afford to buy a spare set.
Just waiting to get my replacement lens as I 'm attending a conference next week and will be stuffed without it.
Janet
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rosemary@umbilical.demon.
dear Laura,
Appeal!
1. Try to get a face-to-face meeting with someone. Turn up - or have them turn up at your door - when you have no lenses in, and can complain bitterly about how sore your eyes are. If they
have any paperwork with them, insist on taking it yourself and
trying to read it yourself, a word at a time and with your nose
brushing the paper, very slowly, however much they want to offer to read it out to you. Keep stopping for a rest, blinking,
putting hands over eyes, etc. Trip over the carpet, ask to be
led around everywhere, and keep stopping at doorways, carpet
edges, etc etc and saying "is there a step here?" Sound
heartfelt about unpredictable this condition is, and how
depressing. If they come to your place, pour them half a cup of
coffee cos you can't see how full the mugs are, or get them to
make their own because you can't see well enough to feel
confident pouring hot water safely. Something like that.
2. concentrate on the bad days, however depressing it is.
3. Contact your student union as soon as you arrive, try to get
hold of their Students-with-Disabilities officer, or whatever
they're called, and ask them for help.
4. Actually, ask SU disabilities people what other help there is - they may know of uni facilities with enlarging/talking
computers, magnifiers, etc etc.
5. If you have to go to any meetings/interviews, try arrange to
have someone meet you afterwards, to take you for a big drink,
chocolate brownies, whatever, and cheer you up again! Lots of
people who have this sort of assessment for funds find it very
hard to do, because they have to emphasise their bad days, and
how little they can do on their bad days - and they find this
very dispiriting and depressing, and therefore hard to do,
particularly as they spend most of the rest of their lives
trying to convince themselves they aren't really so bad as all
that, and can do a lot of the good days .... etc. I think it
just needs a lot of psyching up, having to think yourself into
doing it - and a friend who can be comforting and help you
recover is a great help.
Good luck! Hope you get some funds. Unfortunately, at the end
of the cliche'd day, the "pot" is limited so it is possible they may not give you any. Please don't despair - keep hunting
around and see what other facilities you can find to help. Oh - and enjoy the course.
rosemary
--
Rosemary F. Johnson
Appeal!
1. Try to get a face-to-face meeting with someone. Turn up - or have them turn up at your door - when you have no lenses in, and can complain bitterly about how sore your eyes are. If they
have any paperwork with them, insist on taking it yourself and
trying to read it yourself, a word at a time and with your nose
brushing the paper, very slowly, however much they want to offer to read it out to you. Keep stopping for a rest, blinking,
putting hands over eyes, etc. Trip over the carpet, ask to be
led around everywhere, and keep stopping at doorways, carpet
edges, etc etc and saying "is there a step here?" Sound
heartfelt about unpredictable this condition is, and how
depressing. If they come to your place, pour them half a cup of
coffee cos you can't see how full the mugs are, or get them to
make their own because you can't see well enough to feel
confident pouring hot water safely. Something like that.
2. concentrate on the bad days, however depressing it is.
3. Contact your student union as soon as you arrive, try to get
hold of their Students-with-Disabilities officer, or whatever
they're called, and ask them for help.
4. Actually, ask SU disabilities people what other help there is - they may know of uni facilities with enlarging/talking
computers, magnifiers, etc etc.
5. If you have to go to any meetings/interviews, try arrange to
have someone meet you afterwards, to take you for a big drink,
chocolate brownies, whatever, and cheer you up again! Lots of
people who have this sort of assessment for funds find it very
hard to do, because they have to emphasise their bad days, and
how little they can do on their bad days - and they find this
very dispiriting and depressing, and therefore hard to do,
particularly as they spend most of the rest of their lives
trying to convince themselves they aren't really so bad as all
that, and can do a lot of the good days .... etc. I think it
just needs a lot of psyching up, having to think yourself into
doing it - and a friend who can be comforting and help you
recover is a great help.
Good luck! Hope you get some funds. Unfortunately, at the end
of the cliche'd day, the "pot" is limited so it is possible they may not give you any. Please don't despair - keep hunting
around and see what other facilities you can find to help. Oh - and enjoy the course.
rosemary
--
Rosemary F. Johnson
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