to leon
firstly try not to worry to much and most importantly remember that everyones recovery time differs. for me i was unable to open either eyes for 10 days ( most unusual) and it took 7 weeks to open graph eye. some open straight away.
find out as much infomation as you on any KC web sites.
after op make sure you have plenty of audio books to listen too for company !
if you want to know anything else please feel free to email me on starlight7723366@aol.com
i am just coming up to my first year anniversary on thursday (7th), its been a tough year but now feel alot better about it !
sarah x
Quicktopic posts: Aug 2003
Moderators: Anne Klepacz, John Smith, Sweet
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Sue Ingram
Dear Eamon (1909), I personally would have thought that it was in your best interests to explain to your Course Director that you have KC and what this means to you due to the fact that you have to wear contact lenses all day every day and cannot give your eyes a rest and also that sometimes you may have 'bad eye' days when you cannot wear your lenses at all and therefore would not be able to attend lectures etc. I am sure it would be to your advantage to explain that you probably need to sit at the front of the class and may need to have presentations printed up as hard copy etc, etc. Good idea to mention that red and green pens on flipchart pages are a waste of time - please can they use black on white! I am sure there are many other little things that they could help with in order to make your life a little easier.
I assume the best way to approach it would be to explain that 99% of the time, noone would know that there was anything wrong, but that sometimes you suffer on odd occasions; if they are not aware of this, they could misunderstand and take it to mean that you are skipping lectures etc, etc.
Obviously, you will have to decide what is the best way for you to go. Perhaps wait until you have been there a while and suss it out - you might find that there is no reason to mention it at all if you are coping perfectly well. Good luck and let us know how you get on. SUE
I assume the best way to approach it would be to explain that 99% of the time, noone would know that there was anything wrong, but that sometimes you suffer on odd occasions; if they are not aware of this, they could misunderstand and take it to mean that you are skipping lectures etc, etc.
Obviously, you will have to decide what is the best way for you to go. Perhaps wait until you have been there a while and suss it out - you might find that there is no reason to mention it at all if you are coping perfectly well. Good luck and let us know how you get on. SUE
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Anne K
Dear Eamonn - Just to add that we launched our new information leaflet for schools and colleges at the conference last month. This gives basic info about KC to teachers and tutors, and the idea is that students can give a copy to their college, so that teachers/lecturers know what sorts of problems students may experience, and how they can help. We'll be announcing this in the next newsletter, but if you'd like a copy, just let me know and I'll put one in the post to you. All the best with the course. Anne
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Janet Manning
Hi Eamon,
I used to be Course Director of a PGCE course and would certainly have preferred to know if any of my students had special needs so that I could support them properly, whilst on the course. A PGCE course is very demanding and intense, so it is important to set up any support you need BEFORE things get too rushed.
The KC group has produced a booklet for students with KC to give to their Uni/college/school to explain what the potential problems are. If you would like copies for your Uni and placement school email me your address and I will post you some.
My email is:- janetmanning@lineone.net
If you prefer to chat, do ring me on 01235 528974.
By the way it is quite possible to attend lectures when you cannot wear lenses. You just need to sit at the front and request hard copy of OHP slides. It can be hard work keeping up, but better than not attending at all. I completed a course last year and attended a large proportion of lectures with no lenses as I had transplants in both eyes during the course. Very happy to offer you top tips for course survival - do get in touch.
All the best, Janet
I used to be Course Director of a PGCE course and would certainly have preferred to know if any of my students had special needs so that I could support them properly, whilst on the course. A PGCE course is very demanding and intense, so it is important to set up any support you need BEFORE things get too rushed.
The KC group has produced a booklet for students with KC to give to their Uni/college/school to explain what the potential problems are. If you would like copies for your Uni and placement school email me your address and I will post you some.
My email is:- janetmanning@lineone.net
If you prefer to chat, do ring me on 01235 528974.
By the way it is quite possible to attend lectures when you cannot wear lenses. You just need to sit at the front and request hard copy of OHP slides. It can be hard work keeping up, but better than not attending at all. I completed a course last year and attended a large proportion of lectures with no lenses as I had transplants in both eyes during the course. Very happy to offer you top tips for course survival - do get in touch.
All the best, Janet
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Janet Manning
Hi Leon,
I had bilateral transplants in 1999. I had local anaesthetic which was brillaint and was home 45 mins after coming out of theatre. Both times as soon as the patch came off the next morning I could open my eye and also see out of it.
I needed strong painkillers for the first night, but nothing after that. After the second op, I managed the painkillers much better and never really suffered at all. I also used homeopathic remedies and was told at the hospital that they had never seen a graft look so good the day after the op.
If you would like info on the remedies, please contact me. I am now a qualified homeopath. email - janetmanning@lineone.net
After the ops they put a patch over your eye with a plastic eye guard over it. I was advised to wear this at night for a few weeks as this is the time you are most likely to accidentally poke your eye. I also wore it for getting dressed and showered for the same reason.
Get some micropore tape in for this.
Initially I felt rather vulnerable after the op, as I couldn't face putting the lens in the O.K. eye for about 3-4 days. You know how you screw up your eye sometimes getting a corneal lens in the right place - well actually both eyes react the same way, so I couldn't risk that happening while the grafted eye was still tender. So the advice to get in plenty of audio books is very sound. Just be prepared to relax and recover and try and arrange someone to look after you for about three days..
You will also be putting in eye drops at least 4 times a day. It's good to have someone to do this for you while the eye is sore, but you'll soon be able to do it for yourself. My eyes were not constantly painful, just tender to touch for about 10 days and I was afraid of poking them with the dropper.
The outcome of the op is different for everyone. If you are able to see with glasses, you will be able to get back to normal more quickly. I needed a lens, which cannot be fitted for at least 8 weeks, so this made recovery slower, because I couldn't get correction and can see very little without.
The stitches stay in for about a year, though individual ones may be removed to adjust the astigmatism. Painless procedure in out-patients. Steroid drops again after this for a month, so no lenses because they contain preservative.
All in all it takes just over a year for everything to settle down because of the necessity to use steroid drops and thus no lenses, have stitches out, get new lenses fitted etc. It's all a bit up and down, but doesn't mean you cannot do anything useful in this time, it's just harder at times. No one prepared me for this. I was told I could go back to work in 2 weeks! ( But then my surgeon was convinced I could get some glasses and all would be well - I wish!) There are also frequent hospital visits at first.
Hope this helps. I'm a great believer in coping better if you know what to expect. Let us know if there's anything else you want to know.
All the very best and let us know how it goes. Janet
I had bilateral transplants in 1999. I had local anaesthetic which was brillaint and was home 45 mins after coming out of theatre. Both times as soon as the patch came off the next morning I could open my eye and also see out of it.
I needed strong painkillers for the first night, but nothing after that. After the second op, I managed the painkillers much better and never really suffered at all. I also used homeopathic remedies and was told at the hospital that they had never seen a graft look so good the day after the op.
If you would like info on the remedies, please contact me. I am now a qualified homeopath. email - janetmanning@lineone.net
After the ops they put a patch over your eye with a plastic eye guard over it. I was advised to wear this at night for a few weeks as this is the time you are most likely to accidentally poke your eye. I also wore it for getting dressed and showered for the same reason.
Get some micropore tape in for this.
Initially I felt rather vulnerable after the op, as I couldn't face putting the lens in the O.K. eye for about 3-4 days. You know how you screw up your eye sometimes getting a corneal lens in the right place - well actually both eyes react the same way, so I couldn't risk that happening while the grafted eye was still tender. So the advice to get in plenty of audio books is very sound. Just be prepared to relax and recover and try and arrange someone to look after you for about three days..
You will also be putting in eye drops at least 4 times a day. It's good to have someone to do this for you while the eye is sore, but you'll soon be able to do it for yourself. My eyes were not constantly painful, just tender to touch for about 10 days and I was afraid of poking them with the dropper.
The outcome of the op is different for everyone. If you are able to see with glasses, you will be able to get back to normal more quickly. I needed a lens, which cannot be fitted for at least 8 weeks, so this made recovery slower, because I couldn't get correction and can see very little without.
The stitches stay in for about a year, though individual ones may be removed to adjust the astigmatism. Painless procedure in out-patients. Steroid drops again after this for a month, so no lenses because they contain preservative.
All in all it takes just over a year for everything to settle down because of the necessity to use steroid drops and thus no lenses, have stitches out, get new lenses fitted etc. It's all a bit up and down, but doesn't mean you cannot do anything useful in this time, it's just harder at times. No one prepared me for this. I was told I could go back to work in 2 weeks! ( But then my surgeon was convinced I could get some glasses and all would be well - I wish!) There are also frequent hospital visits at first.
Hope this helps. I'm a great believer in coping better if you know what to expect. Let us know if there's anything else you want to know.
All the very best and let us know how it goes. Janet
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umbilica@umbilical.demon.
Sue said:
Dear Eamon (1909), I personally would have thought that it was
in your best interests to explain to your Course Director that
you have KC and what this means to you ....
I agree with this - and with what others have said.
If the college know, they can help. If they don't, they can't.
Furthermore, if you tell them up-front, they can never turn
round to you and say "Why didn't you tell us?"
What is the problem about getting up early for placements? - are you expecting placements a long way from where you'll be
living? Is this (getting up in good time and then travelling)
going to be any worse than any other job? Sorry if I've
misunderstood.
Rosemary
--
Rosemary F. Johnson
Dear Eamon (1909), I personally would have thought that it was
in your best interests to explain to your Course Director that
you have KC and what this means to you ....
I agree with this - and with what others have said.
If the college know, they can help. If they don't, they can't.
Furthermore, if you tell them up-front, they can never turn
round to you and say "Why didn't you tell us?"
What is the problem about getting up early for placements? - are you expecting placements a long way from where you'll be
living? Is this (getting up in good time and then travelling)
going to be any worse than any other job? Sorry if I've
misunderstood.
Rosemary
--
Rosemary F. Johnson
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Paul Bines
Leon
Much the same as in previous posts - I've had two grafts in the last 8 months, and an earlier graft was done about 8 years ago.
The op is usually under General Anathestic and is an overnight stay (at least my ops were). I was lucky - I was able to open my eye (on both recent occasions) the next morning - thoug hthe natural inclination is to keep the operated eye closed.
The drops take a little getting used to, but they do become easier with practise - you'll probably be prescribed preservative free, which need to be kept in a fridge - a tip here - if you are going out for any length of time, bring a small coolbag with ice pack - Wilkinsons sell them for a few pounds - decidedly handy, they last a few hours and keep your drops relatively cool.
You might be given the eye guard, I was after my October op but not after the April one. If you DO get one, it's important to keep this clean, and to replace the tape each night.
You will find things a little disorienting for a few days after the op - a combination of the anathetic and the changed vision in one eye - but things do improve relatively quickly (though at a different pace for different people) and gradually settle down. I haven't had my stitches out yet, and my first op was so long ago that I can't actually remember what that was like, but from what I CAN remember it's done under local anathetic, and you're let out the same day.
Good luck with the op and if yo uhave any questions, feel free to ask!
p a u l b i n e s at b e e b .dot n e t
Au Res.,
Paul
http://www.efbenson.co.uk/
http://www.users.waitrose.com/~paulbines
http://www.convergent-diversity.co.uk/
Much the same as in previous posts - I've had two grafts in the last 8 months, and an earlier graft was done about 8 years ago.
The op is usually under General Anathestic and is an overnight stay (at least my ops were). I was lucky - I was able to open my eye (on both recent occasions) the next morning - thoug hthe natural inclination is to keep the operated eye closed.
The drops take a little getting used to, but they do become easier with practise - you'll probably be prescribed preservative free, which need to be kept in a fridge - a tip here - if you are going out for any length of time, bring a small coolbag with ice pack - Wilkinsons sell them for a few pounds - decidedly handy, they last a few hours and keep your drops relatively cool.
You might be given the eye guard, I was after my October op but not after the April one. If you DO get one, it's important to keep this clean, and to replace the tape each night.
You will find things a little disorienting for a few days after the op - a combination of the anathetic and the changed vision in one eye - but things do improve relatively quickly (though at a different pace for different people) and gradually settle down. I haven't had my stitches out yet, and my first op was so long ago that I can't actually remember what that was like, but from what I CAN remember it's done under local anathetic, and you're let out the same day.
Good luck with the op and if yo uhave any questions, feel free to ask!
p a u l b i n e s at b e e b .dot n e t
Au Res.,
Paul
http://www.efbenson.co.uk/
http://www.users.waitrose.com/~paulbines
http://www.convergent-diversity.co.uk/
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Rob Armstrong
Hi Leon,
I had my graft in January, and am just at the stage where they start removing stitches (and luckily in my case) start talking about trying out glasses. I was really nervous as the operation approached, but I'm glad to say everything went well. My operation was performed under general anaesthetic, but I was still home the same day, going back 24 hours later to have the bandages removed. I found it more comfortable to have both eyes closed as much as possible for the first few days, but this is different for everyone. I often wore sunglasses for the first couple of weeks, (low winter sun-nightmare!) and an eye shield at night for the first couple of months. I was given antibiotic drops to take for the first week , as well as steroid drops to help fight rejection. (I'm gradually coming off these at the moment). Its not painful (for me at least) more a discomfort, which rapidly fades over the days and weeks. Just remember its a gradual healing process, and that it will be worth it!
Rob.
I had my graft in January, and am just at the stage where they start removing stitches (and luckily in my case) start talking about trying out glasses. I was really nervous as the operation approached, but I'm glad to say everything went well. My operation was performed under general anaesthetic, but I was still home the same day, going back 24 hours later to have the bandages removed. I found it more comfortable to have both eyes closed as much as possible for the first few days, but this is different for everyone. I often wore sunglasses for the first couple of weeks, (low winter sun-nightmare!) and an eye shield at night for the first couple of months. I was given antibiotic drops to take for the first week , as well as steroid drops to help fight rejection. (I'm gradually coming off these at the moment). Its not painful (for me at least) more a discomfort, which rapidly fades over the days and weeks. Just remember its a gradual healing process, and that it will be worth it!
Rob.
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Leon Davis
Hi all,
Many thanks for the advice, it is a real help and it is also nice to hear people talking about their experiences and to know I am not alone. My nerves have subsided somewhat and I know I have some preperation to do pre-op (sunglasses, audio book, micro pore tape - very important by all accounts)
Well if there are people out there who are willing to share their expreciences, please keep them coming, I really have found them so useful
Take care all, and I will post a message - once I can see on the outcome.
Kind Regards
Many thanks for the advice, it is a real help and it is also nice to hear people talking about their experiences and to know I am not alone. My nerves have subsided somewhat and I know I have some preperation to do pre-op (sunglasses, audio book, micro pore tape - very important by all accounts)
Well if there are people out there who are willing to share their expreciences, please keep them coming, I really have found them so useful
Take care all, and I will post a message - once I can see on the outcome.
Kind Regards
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Kevin Griffiths
Hi all
I have had grafts done on both eyes and am still in the process of getting a lens fitted on my left eye, my problem is that my contact lens specialist here in Wrexham Mr R K Nelson has fallen out with the hospital and stopped practicing here, does anyone know if he is practicing in a nearby location, maybe North Wales or Cheshire.
Also i am considering being refered to St Pauls hospital in Liverpool, does anyone have any experience on that hospital?
many thanks
Kev
I have had grafts done on both eyes and am still in the process of getting a lens fitted on my left eye, my problem is that my contact lens specialist here in Wrexham Mr R K Nelson has fallen out with the hospital and stopped practicing here, does anyone know if he is practicing in a nearby location, maybe North Wales or Cheshire.
Also i am considering being refered to St Pauls hospital in Liverpool, does anyone have any experience on that hospital?
many thanks
Kev
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