Hi,
I must say it's a pleasure to join this informative site.
I have recently been diagnosed with KC but have been fortunate to only have it affect my right eye.
Sadly though my KC in that eye is so bad that I am going to need a cornea transplant. I must say it came as a bit of a shock as I have always assumed it was just a lazy eye rather than something more serious.
I started getting a lot of pain in my right eye during my last year at uni which I have now completed. I am finding though that watching tv, reading and little things like certain lighting are irritating my eye to the point it is rather painful.
My concerns now though is that I feel in a bit of limbo and would really appreciate if someone could answer me a few questions?
Firstly, I have just been put on the NHS waiting list for a transplant and thus wondered how long I could expect to wait for this transplant?
Secondly, how does KC affect ones ability to work? I have tried wearing a patch but cannot get used to it and feel useless as I am unable to do so many simple things for any period of time without discomfort.
After years of study though I really want to get a job and start paying off my student debt for a start. Would I be capable of this and indeed would I be employed knowing that in the near future I am going to have to take time off for surgery?
Thirdly, how long after surgery is it before I will be able to return back to work and how does one survive being unable to work? Would I have to sign on sick for a period of time?
Sorry for the questions, I just need a bit of guidance from those going through or been through what I now face.
Many thanks though for your time, I look forward to getting to know you more over the coming months.
Newbie, would love some help
Moderators: Anne Klepacz, John Smith, Sweet
-
Asif
- Regular contributor
- Posts: 141
- Joined: Wed 01 Sep 2004 5:13 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and spectacles
Hi ChrisK, welcome to the site.
The answer to your first question i think depends on the hospital and how many people they have on their list waiting for a corneal transplant. I was expected to wait 2-3 years but when I explained to them my situation and how keratoconus was affecting my studies I was given one in 6 months.
Keratoconus takes time to get used to when dealing with every day tasks and work. As you can see out of one eye it may not be as difficult. I am affected in both eyes and had to wear Contact Lensess in both eyes ebfore I had a graft in my left eye. As I could not wear my CLs for more than 8 hours I used to alternate monocular vision between left and right eye. I used to wear the right lens for the 1st 8 hours of the day, take it out and wear the left lens for the next 8 hours so I could get a total wearing time of 16 hours as apposed to 8. This is a similar situation to you as this way I could only see through one eye at a time. It was difficult at first but I adapted to it after about 2 weeks with no need for an eyepatch. You will eventually learn to ignore the effects of the poor eye and concentrate on the good eye.
As fot the graft I am almost 3 weeks into my recovery. I now feel fine. My vision is better the prior to the graft but will be getting better hopefully. If I had a job I could return to work in 3 weeks. you would only need to take this much time off work or maybe a lttle more depending on your situation.
The answer to your first question i think depends on the hospital and how many people they have on their list waiting for a corneal transplant. I was expected to wait 2-3 years but when I explained to them my situation and how keratoconus was affecting my studies I was given one in 6 months.
Keratoconus takes time to get used to when dealing with every day tasks and work. As you can see out of one eye it may not be as difficult. I am affected in both eyes and had to wear Contact Lensess in both eyes ebfore I had a graft in my left eye. As I could not wear my CLs for more than 8 hours I used to alternate monocular vision between left and right eye. I used to wear the right lens for the 1st 8 hours of the day, take it out and wear the left lens for the next 8 hours so I could get a total wearing time of 16 hours as apposed to 8. This is a similar situation to you as this way I could only see through one eye at a time. It was difficult at first but I adapted to it after about 2 weeks with no need for an eyepatch. You will eventually learn to ignore the effects of the poor eye and concentrate on the good eye.
As fot the graft I am almost 3 weeks into my recovery. I now feel fine. My vision is better the prior to the graft but will be getting better hopefully. If I had a job I could return to work in 3 weeks. you would only need to take this much time off work or maybe a lttle more depending on your situation.
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Hi Chris,
I will try and answer all your questions one at a time. I've had KC for many years and two grafts, so here goes.
1)How long to wait for a graft?
This many feel here is a postcode lottery, but your consultant should be able to give some idea. 16 years ago, I only waited a couple of months. Two types of corneas are used, fresh which is a case of waiting for material to come available, the other is frozen corneas which have been carfully stored. I have had grafts from both sources and you can not tell the differance. The wait for frozen material I believe is shorter.
2) Will KC affect my ability to work?
KC can obveoiusly affect some of what you can do in terms of health and safety. Oyur ability to work remains unchanged. If you get in touch with you local job centre and arrange to speak with their disabilities person, they will be able to help with a scheme called Access to Work. Basically this is a government scheme aimed at helping people in our situation get in the work place. This can be help in providing your new employer with funding for computer equipment and any changes to ther work environment. The RNIB are also very helpfull and of course there is this support group which now has an employer leaflet which outlines the conditions and what is available to employers and employees. We have a disability and if it is affecting your ability to work take pride in accepting the help we need.
If you are refused employment because you need time off for an operation, this would be classed as discrimination under the disabilities act.
3) How soon can I return to work after surgery?
Unfortunatly we all recover differently, but certainly after a couple of weeks in most cases. You may well find if you get a job that you can have cover straightaway for 13 weeks sick on full pay, but this may affect your benefits the next twelve months from your employer. This also statatory sick pay which gives some funding and I think the social services can help to in other areas. The Job center and social services would be the best to provide this advice, especially the disabilities officer and the RNIB as this will not be new to them.
Getting used to seeing with one eye is not an overnight thing and takes several months. When I started Uni in 1989, I had just had my first graft and was partially sighted in the other eye and studied enviromental micro biology whilst regisetred partially sighted. This was because I had limited lens wear time in my ungrafted eye! By the time I started my industrial placement year, I had just had my second graft and wore glasses which gave quite good vision in the grafted eye. My year out was working for the government which required me going down mines and sewers and another part of the job was working on oil rigs and up chimneys. As soon as my grafted eye allowed me to make the minimum sight requirments for racing I was doing so again semi professionally! I was only sighted in one eye so you can get used to it, it jus takes time building on what you can do and this helps to adapt further.
Share your concernes here and others will say how they have adapted. Seeing with one eye is doable, I often only see out of one eye at a time now so that I can see long enough during the day. The half hour change over is blurred but I soon recover. This took a couple of months to adapt to. Dark glasses help if brightness is an issue.
Hope this helps, KC only gets in the way of your career if you let it. I continue to fight it and I am still winning.
Regards
Gareth
I will try and answer all your questions one at a time. I've had KC for many years and two grafts, so here goes.
1)How long to wait for a graft?
This many feel here is a postcode lottery, but your consultant should be able to give some idea. 16 years ago, I only waited a couple of months. Two types of corneas are used, fresh which is a case of waiting for material to come available, the other is frozen corneas which have been carfully stored. I have had grafts from both sources and you can not tell the differance. The wait for frozen material I believe is shorter.
2) Will KC affect my ability to work?
KC can obveoiusly affect some of what you can do in terms of health and safety. Oyur ability to work remains unchanged. If you get in touch with you local job centre and arrange to speak with their disabilities person, they will be able to help with a scheme called Access to Work. Basically this is a government scheme aimed at helping people in our situation get in the work place. This can be help in providing your new employer with funding for computer equipment and any changes to ther work environment. The RNIB are also very helpfull and of course there is this support group which now has an employer leaflet which outlines the conditions and what is available to employers and employees. We have a disability and if it is affecting your ability to work take pride in accepting the help we need.
If you are refused employment because you need time off for an operation, this would be classed as discrimination under the disabilities act.
3) How soon can I return to work after surgery?
Unfortunatly we all recover differently, but certainly after a couple of weeks in most cases. You may well find if you get a job that you can have cover straightaway for 13 weeks sick on full pay, but this may affect your benefits the next twelve months from your employer. This also statatory sick pay which gives some funding and I think the social services can help to in other areas. The Job center and social services would be the best to provide this advice, especially the disabilities officer and the RNIB as this will not be new to them.
Getting used to seeing with one eye is not an overnight thing and takes several months. When I started Uni in 1989, I had just had my first graft and was partially sighted in the other eye and studied enviromental micro biology whilst regisetred partially sighted. This was because I had limited lens wear time in my ungrafted eye! By the time I started my industrial placement year, I had just had my second graft and wore glasses which gave quite good vision in the grafted eye. My year out was working for the government which required me going down mines and sewers and another part of the job was working on oil rigs and up chimneys. As soon as my grafted eye allowed me to make the minimum sight requirments for racing I was doing so again semi professionally! I was only sighted in one eye so you can get used to it, it jus takes time building on what you can do and this helps to adapt further.
Share your concernes here and others will say how they have adapted. Seeing with one eye is doable, I often only see out of one eye at a time now so that I can see long enough during the day. The half hour change over is blurred but I soon recover. This took a couple of months to adapt to. Dark glasses help if brightness is an issue.
Hope this helps, KC only gets in the way of your career if you let it. I continue to fight it and I am still winning.
Regards
Gareth
Gareth
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Susan Mason
- Forum Stalwart
- Posts: 414
- Joined: Sat 24 Jan 2004 11:27 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: Bolton Lancashire
Hi Chris
Just wanted to second what Gareth said, "KC only gets in the way of your career if you let it. I continue to fight it and I am still winning"
Remember this and do not allow others to make assumptions for you as to what you can and cannot do and even when it may seem really not worth the effort to answer back or reply to negative comments which may at times be passed to you always make sure you are treated fairly.
The problem with KC is 'others' cannot see what is wrong with you and most people despite telling them several times what the problem is will still fail to comprehend it and ask you the same silly question several times.
If we were in a wheel chair or the KC was more obvious some of the silly comments that are passed maybe wouldn't be.
For me personally I spent too much time trying to be 'thick skinned' ignoring silly comments and missing job opportunities which I now regret and know I should not have done.
You will have studied hard for quite some time and now you should have the same opportunities as everyone else to achieve a rewarding career.
The KC with or without the graft 'you' will learn to cope with (which will of course have it's ups and downs and take some time). You still have a 'good' eye so this should help a little.
Just don't let anyone hold you back!
best wishes
Susan
Just wanted to second what Gareth said, "KC only gets in the way of your career if you let it. I continue to fight it and I am still winning"
Remember this and do not allow others to make assumptions for you as to what you can and cannot do and even when it may seem really not worth the effort to answer back or reply to negative comments which may at times be passed to you always make sure you are treated fairly.
The problem with KC is 'others' cannot see what is wrong with you and most people despite telling them several times what the problem is will still fail to comprehend it and ask you the same silly question several times.
If we were in a wheel chair or the KC was more obvious some of the silly comments that are passed maybe wouldn't be.
For me personally I spent too much time trying to be 'thick skinned' ignoring silly comments and missing job opportunities which I now regret and know I should not have done.
You will have studied hard for quite some time and now you should have the same opportunities as everyone else to achieve a rewarding career.
The KC with or without the graft 'you' will learn to cope with (which will of course have it's ups and downs and take some time). You still have a 'good' eye so this should help a little.
Just don't let anyone hold you back!
best wishes
Susan
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Drew Radcliffe
- Regular contributor
- Posts: 142
- Joined: Tue 30 Mar 2004 9:02 pm
- Keratoconus: Yes, I have KC
- Location: Cardiff
Hi Chris
I notice you say you have only been RECENTLY diagnosed with KC. I have never heard of anyone needing a transplant at an early stage and I have heard of consultants pushing patients in the direction of a transplant when it isn't neccsarily the immediate best option.
Unless you have some specific issues that you haven't mentioned which you consultant has already covered with you I would make sure you are familiar with all the options open to you. Like all your contact lens options. I am blind in my left eye not due to KC. I have problems because the blind eye can see light and dark and the images get mixed up. I tried patches and failed with them. I eventually found an optictian that make me a pair of glasses with an opaque lens to blank the blind eye, the lenses were mirrored to hide this.
You have a choice here and I don't know if you have made it or not yet. Every one on here is at different stages of the disease and we can all share our experiences to help you make an informed choice. Surgery cannot be undone and its not 100% reliable make sure you know what the risks are.
Good Luck
Drew
I notice you say you have only been RECENTLY diagnosed with KC. I have never heard of anyone needing a transplant at an early stage and I have heard of consultants pushing patients in the direction of a transplant when it isn't neccsarily the immediate best option.
Unless you have some specific issues that you haven't mentioned which you consultant has already covered with you I would make sure you are familiar with all the options open to you. Like all your contact lens options. I am blind in my left eye not due to KC. I have problems because the blind eye can see light and dark and the images get mixed up. I tried patches and failed with them. I eventually found an optictian that make me a pair of glasses with an opaque lens to blank the blind eye, the lenses were mirrored to hide this.
You have a choice here and I don't know if you have made it or not yet. Every one on here is at different stages of the disease and we can all share our experiences to help you make an informed choice. Surgery cannot be undone and its not 100% reliable make sure you know what the risks are.
Good Luck
Drew
Thank you all for your help and great advice, I really appreciate it.
I shall be paying a visit to the job centre and having a word with thier disabilities person.
Sadly Drew, I guess I have had KC for a number of years but due to having one good eye I guess I just stopped using the other one. The rather silly thing is it never used to bother me as I remembered being told whilst about 10 that I did have a lazy eye. It was only in my last year at uni that it became painful which is something that has become more frequent since. At this point I went to the opticians thinking I was just straining it and needed glasses. It was him who was 99% sure I had KC and after being referred to the hospital tests showed a bad case of KC with alot of scarring. I was told I could hope for around50% vision in that eye if the operation is a success. The risks as I know them is that the cornea doesn't take and I need another transplant and worse case scenerio but very unlikely is blindness in one eye. On the plus side my consultant did tell me that we'll be becoming best of friends due to the amount of time we'll be spending together. One can never have too many friends.
If it wasn't now for the pain which makes reading, going to the movies and being in shops (due I assume to the lighting) painful I probably would have chosen not to go ahead with the operation and continued to rely on the one good eye.
I shall take up the great suggestion of wearing sunglasses as this is something I have never thought about trying before.
One thing that people are noticing I do alot is holding my KC eye (or rather stretching my eye). Is this something that others do?
Now I have been diagnosed with KC I have realised that what I must be doing is attempting to stretch my cornea as this tends to take away some of the discomfort.
But thanks again for all your help.
Something good always comes from something bad and thanks to my KC I have the pleasure of getting to know you all.
Asif, I'm delighted to hear you are feeling fine 3 weeks into your recovery. Keep us informed on how your vision improves. I think I read that each time a stitch comes out the vision slightly improves?
Hope you all have a great day, I shall depart with a smile and just hope it's my lucky week and I win the NHS postcode lottery.
I shall be paying a visit to the job centre and having a word with thier disabilities person.
Sadly Drew, I guess I have had KC for a number of years but due to having one good eye I guess I just stopped using the other one. The rather silly thing is it never used to bother me as I remembered being told whilst about 10 that I did have a lazy eye. It was only in my last year at uni that it became painful which is something that has become more frequent since. At this point I went to the opticians thinking I was just straining it and needed glasses. It was him who was 99% sure I had KC and after being referred to the hospital tests showed a bad case of KC with alot of scarring. I was told I could hope for around50% vision in that eye if the operation is a success. The risks as I know them is that the cornea doesn't take and I need another transplant and worse case scenerio but very unlikely is blindness in one eye. On the plus side my consultant did tell me that we'll be becoming best of friends due to the amount of time we'll be spending together. One can never have too many friends.
If it wasn't now for the pain which makes reading, going to the movies and being in shops (due I assume to the lighting) painful I probably would have chosen not to go ahead with the operation and continued to rely on the one good eye.
I shall take up the great suggestion of wearing sunglasses as this is something I have never thought about trying before.
One thing that people are noticing I do alot is holding my KC eye (or rather stretching my eye). Is this something that others do?
Now I have been diagnosed with KC I have realised that what I must be doing is attempting to stretch my cornea as this tends to take away some of the discomfort.
But thanks again for all your help.
Something good always comes from something bad and thanks to my KC I have the pleasure of getting to know you all.
Asif, I'm delighted to hear you are feeling fine 3 weeks into your recovery. Keep us informed on how your vision improves. I think I read that each time a stitch comes out the vision slightly improves?
Hope you all have a great day, I shall depart with a smile and just hope it's my lucky week and I win the NHS postcode lottery.
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Sophie Bull
- Regular contributor
- Posts: 66
- Joined: Tue 06 Apr 2004 2:42 pm
Hi Chris,
Thought I would reply too as I ahve recently had a graft and i too used to do the funny eye holding thing and developed a habit of pulling a slightly odd expresion, like a lopsided squint that i was not even aware of! but i also used to use my hand to help focus my eye.
I had the graft on the 9th of dec and recovered really very quickly, obviously the drops continue...still using them now, but in myself i felt better a week or so afterwards and my vision improved very quickly, I sat an exam for uni just over a month after the graft and felt perfectly able still to do some revise, but i know i am one of the lucky ones and for some the story is not so good.
Anyway, if you have any questions jsut keep asking!
Soph
Thought I would reply too as I ahve recently had a graft and i too used to do the funny eye holding thing and developed a habit of pulling a slightly odd expresion, like a lopsided squint that i was not even aware of! but i also used to use my hand to help focus my eye.
I had the graft on the 9th of dec and recovered really very quickly, obviously the drops continue...still using them now, but in myself i felt better a week or so afterwards and my vision improved very quickly, I sat an exam for uni just over a month after the graft and felt perfectly able still to do some revise, but i know i am one of the lucky ones and for some the story is not so good.
Anyway, if you have any questions jsut keep asking!
Soph
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Chris,
It is worth remebering that a vast majority of grafts are classed a success. For me success meant that a good quality of vision with glasses would mean I could lead a normal life. This I achieved and even went many years without any sight correction.
Only wear lenses for a completely different KC related problem.
Keep us posted as it is good to know what advise we give worked and what did not.
Get the glasses and join the KC Mafia!
Regards
Gareth
It is worth remebering that a vast majority of grafts are classed a success. For me success meant that a good quality of vision with glasses would mean I could lead a normal life. This I achieved and even went many years without any sight correction.
Only wear lenses for a completely different KC related problem.
Keep us posted as it is good to know what advise we give worked and what did not.
Get the glasses and join the KC Mafia!
Regards
Gareth
Gareth
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Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
Chris....
As an optomtrist, I must admit I, like Drew, was a bit surprised that the first reaction to your KC was a graft. Did they try ANY contact lenses on your eye?
I can sort of see why because of your scarring....but on the other hand, you have been used to reduced vision in that eye for years and if they could only stop the pain and discomfort, then this might help you for a few years. Even if contact lenses were not adviseable long term, a soft bandage lens might well help short term while you were waiting for your graft.
One thing you WILL find with KC is that treatment varies according to the area you live in .. the so-called postcode lottery .... so it is wise to look at all your options.
So.. out of interest, which hospital are you being seen at?
Lynn
As an optomtrist, I must admit I, like Drew, was a bit surprised that the first reaction to your KC was a graft. Did they try ANY contact lenses on your eye?
I can sort of see why because of your scarring....but on the other hand, you have been used to reduced vision in that eye for years and if they could only stop the pain and discomfort, then this might help you for a few years. Even if contact lenses were not adviseable long term, a soft bandage lens might well help short term while you were waiting for your graft.
One thing you WILL find with KC is that treatment varies according to the area you live in .. the so-called postcode lottery .... so it is wise to look at all your options.
So.. out of interest, which hospital are you being seen at?
Lynn
Thanks again for the replies.
Sophie, I'm delighted that you've had your graph and all is going so well. It was also nice to know I am not the only one to use my hand and pull rather odd expressions at times. It was just a shame we didn't go to the same uni, everyone would have thought we were sending secret messages to each other.
lol at the KC Mafia Gareth.
If you don't mind me asking what is the other related KC problem that you are suffering with?
Lynn,
I've had the one appointment where I saw the eye specialist at Kent and Canterbury hospital. I know they had alot of difficulty getting any readings from my eye with the numerous tests they performed. I don't recall trying any contact lenses but believe it was due to the amount of scaring that they weren't seen as being beneficial. Now saying this there could be other reasons that I don't recall as at the time I wasn't really prepared for anything.
What would you recommend I do from here Lynn?
I am picking up that a graft should only be a last resort and something that is generally avoided as much as possible? Should I be more concerned at being taken down this route rather than looking forward to getting it over and done with?
Sophie, I'm delighted that you've had your graph and all is going so well. It was also nice to know I am not the only one to use my hand and pull rather odd expressions at times. It was just a shame we didn't go to the same uni, everyone would have thought we were sending secret messages to each other.
lol at the KC Mafia Gareth.
If you don't mind me asking what is the other related KC problem that you are suffering with?
Lynn,
I've had the one appointment where I saw the eye specialist at Kent and Canterbury hospital. I know they had alot of difficulty getting any readings from my eye with the numerous tests they performed. I don't recall trying any contact lenses but believe it was due to the amount of scaring that they weren't seen as being beneficial. Now saying this there could be other reasons that I don't recall as at the time I wasn't really prepared for anything.
What would you recommend I do from here Lynn?
I am picking up that a graft should only be a last resort and something that is generally avoided as much as possible? Should I be more concerned at being taken down this route rather than looking forward to getting it over and done with?
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