Laura
If you've not had a graft yet the flu jab question wont affect you. After you have a flu jab your immune system must work overtime so I was concerned how this raised immunity might affect possible rejection of a graft. In America some docs don't give flu jabs after grafts or recent rejection episodes while others put you on steroid drops to counter any effect for a few weeks. I still cant find out what the UK s Doc thoughts are but im still trying.
Quicktopic posts: Nov 2003
Moderators: Anne Klepacz, John Smith, Sweet
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sarah marsh
for jane
i had an cornea transplant auguust 2002 and for the first 10 days NEITHER of my eyes would open( i was told this was unusual ) and it then took op eye a futher 7 weeks to open ! so dont worry if it hasnt opened properly , my surgeon even had a lady who took 9 months to open her eye!
a year on and its ok, having stitches out isnt too bad ( but for me its a nightmare as im so nervous , prob dont do my surgeons nerves much good). i have 12/14 stitches left and after last visit surgeon wanted to take me into theatre to have them all out at once! to say i flipped is an understatment and managed to convince him it wasnt a good idea to put me back in theatre. he did agree to take them out as and when needed!
im due to see surgeon on friday and was told last time right eye needs doing .( i have decided NOT to have it done ), for me the transplant was a wrong decision ! and determined not to go throught it again !!!!!!!!!but having said that i seem to be the only one who doesnt think i done the right thing in having op !
anyway hope all goes well for u , im sure u will be fine !
feel free to email if u want on starlight7723366@aol.com or on sarahritamarsh@aol.com
sarah
i had an cornea transplant auguust 2002 and for the first 10 days NEITHER of my eyes would open( i was told this was unusual ) and it then took op eye a futher 7 weeks to open ! so dont worry if it hasnt opened properly , my surgeon even had a lady who took 9 months to open her eye!
a year on and its ok, having stitches out isnt too bad ( but for me its a nightmare as im so nervous , prob dont do my surgeons nerves much good). i have 12/14 stitches left and after last visit surgeon wanted to take me into theatre to have them all out at once! to say i flipped is an understatment and managed to convince him it wasnt a good idea to put me back in theatre. he did agree to take them out as and when needed!
im due to see surgeon on friday and was told last time right eye needs doing .( i have decided NOT to have it done ), for me the transplant was a wrong decision ! and determined not to go throught it again !!!!!!!!!but having said that i seem to be the only one who doesnt think i done the right thing in having op !
anyway hope all goes well for u , im sure u will be fine !
feel free to email if u want on starlight7723366@aol.com or on sarahritamarsh@aol.com
sarah
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Jane Webb
Sarah Marsh
Thank you for your reassuring words. I went back for my second check-up today and consultant told me I must keep trying to open my eye and that I could go back to work - I am now in a dilemma because there is no way I can sit at a computer screen all day or drive so I will have to rely on my GP signing me off for a bit longer.
At least the pressure reading has gone from 28 to 18 and he's taking me off one set of eye drops and wants to see me in 4 weeks (although reception could only book me in for 6 weeks). I have puzzled three of the consultants at the hospital as they cannot understand why my eye is still swollen but after 2 weeks, I don't think it looks that bad, and they carried out a scan to be sure everything was okay.
I must admit if I had known all the disadvantages of having a transplant, I probably would have thought twice about it. I only discovered through this site yesterday that you can have a rejection years after a graft, not just in the early stages. As for the stitches - I shall worry about that next year!!
I hope all goes well on Friday for you.
Regards.
Jane W
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< replied-to message removed by QT >
Thank you for your reassuring words. I went back for my second check-up today and consultant told me I must keep trying to open my eye and that I could go back to work - I am now in a dilemma because there is no way I can sit at a computer screen all day or drive so I will have to rely on my GP signing me off for a bit longer.
At least the pressure reading has gone from 28 to 18 and he's taking me off one set of eye drops and wants to see me in 4 weeks (although reception could only book me in for 6 weeks). I have puzzled three of the consultants at the hospital as they cannot understand why my eye is still swollen but after 2 weeks, I don't think it looks that bad, and they carried out a scan to be sure everything was okay.
I must admit if I had known all the disadvantages of having a transplant, I probably would have thought twice about it. I only discovered through this site yesterday that you can have a rejection years after a graft, not just in the early stages. As for the stitches - I shall worry about that next year!!
I hope all goes well on Friday for you.
Regards.
Jane W
>
< replied-to message removed by QT >
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umbilica@umbilical.demon.
David said:
My main problem however is that being my line of work is a typesetter at a local newspaper I have been unable to receive any help with the cost of contact lenses through the company and my prescription has changed three times in this period.
Has anyone out there had a similar problem - my company will
only assist with the cost of lenses/glasses if they are
specifically for use with a VDU.
This is all down to something called the Display Screen
Equipment regulations. These lay down requirements for
workstations to be assessed if they involve use of display
screen equipment (typically computer monitors) and for the
provision of eye tests for assessing one's vision as regards to
using said Display Screen equipment. The rules also specify
assistance with the cost of glasses (or lenses??) if you need
special ones for using the screen.
In other words, if you need different lenses/specs for using the computer than for everyday life, the rules say you must get some financial assistance. There's no provision for assistance with
specs/lenses for everyday life, and this means for those you'd
use for the computer and for everything else.
I think employers would be in rather a lot of difficulty if
everyone they employed who wore glasses/contacts for their day to day living demanded that the employer pay for them!!
Have you tried asking to be referred to Moorfields and/or a
nearer Eye Hospital and asking for contacts at NHS rates? They
aren't free but will be a lot more affordable if you're employed and earning.
Rosemary
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Rosemary F. Johnson
My main problem however is that being my line of work is a typesetter at a local newspaper I have been unable to receive any help with the cost of contact lenses through the company and my prescription has changed three times in this period.
Has anyone out there had a similar problem - my company will
only assist with the cost of lenses/glasses if they are
specifically for use with a VDU.
This is all down to something called the Display Screen
Equipment regulations. These lay down requirements for
workstations to be assessed if they involve use of display
screen equipment (typically computer monitors) and for the
provision of eye tests for assessing one's vision as regards to
using said Display Screen equipment. The rules also specify
assistance with the cost of glasses (or lenses??) if you need
special ones for using the screen.
In other words, if you need different lenses/specs for using the computer than for everyday life, the rules say you must get some financial assistance. There's no provision for assistance with
specs/lenses for everyday life, and this means for those you'd
use for the computer and for everything else.
I think employers would be in rather a lot of difficulty if
everyone they employed who wore glasses/contacts for their day to day living demanded that the employer pay for them!!
Have you tried asking to be referred to Moorfields and/or a
nearer Eye Hospital and asking for contacts at NHS rates? They
aren't free but will be a lot more affordable if you're employed and earning.
Rosemary
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Rosemary F. Johnson
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umbilica@umbilical.demon.
Andrew wrote:
I now get constant headaches and find bright lights difficult to tolerate - am I alone in suffering from headaches or is this a
common symptom.
Sensitivity to bright light is absolutely normal for people with KC. The headaches do sound worrying.
Possible causes, I would think, might be: reaction to the pain
from the bright lights; one eye is corrected better by the
contacts than the other so has better vision and your brain is
struggling to reconcile two different pictures; you've got into
the habit of sitting peering at things at an uncomfortable angle which is putting pressure on your neck.
Please try to make sure you take regular breaks - even
mini-breaks - to rest your eyes and relax, and try to keep in a
straight, good posture position as much as possible. I hope the headahces clear up - a constant headache is sooooo debilitating, isn't it?
Rosemary
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Rosemary F. Johnson
I now get constant headaches and find bright lights difficult to tolerate - am I alone in suffering from headaches or is this a
common symptom.
Sensitivity to bright light is absolutely normal for people with KC. The headaches do sound worrying.
Possible causes, I would think, might be: reaction to the pain
from the bright lights; one eye is corrected better by the
contacts than the other so has better vision and your brain is
struggling to reconcile two different pictures; you've got into
the habit of sitting peering at things at an uncomfortable angle which is putting pressure on your neck.
Please try to make sure you take regular breaks - even
mini-breaks - to rest your eyes and relax, and try to keep in a
straight, good posture position as much as possible. I hope the headahces clear up - a constant headache is sooooo debilitating, isn't it?
Rosemary
--
Rosemary F. Johnson
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Jane Webb
Brian T
My second post op visit went okay - pressure is now down from 28 to 18 but 3 consultants were puzzled as to why my eye was still so swollen. They gave me a scan and the okay for me to return to work but I will ask my GP to give me more time. I cannot bear daylight and find it difficult to keep my eye open so I cannot imagine sitting at a computer screen all day let alone driving.
I certainly feel more positive though.
Thanks for the info on removal of stitches - I think I can handle that.
Regards.
Jane W
>
< replied-to message removed by QT >
My second post op visit went okay - pressure is now down from 28 to 18 but 3 consultants were puzzled as to why my eye was still so swollen. They gave me a scan and the okay for me to return to work but I will ask my GP to give me more time. I cannot bear daylight and find it difficult to keep my eye open so I cannot imagine sitting at a computer screen all day let alone driving.
I certainly feel more positive though.
Thanks for the info on removal of stitches - I think I can handle that.
Regards.
Jane W
>
< replied-to message removed by QT >
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sarah marsh
for jane
thanx for message !
every doctor/surgeon and consultant seem to differ on every aspect of KC and transplants!
my surgeon is a saint ( must be to put up with me ), i was worried about eye not opening and every time i saw surgeon he explained that the eye will open when its ready and not to force it ! i was off work from june 2001 , had transplant august 2002 and went back to work april 2003! although i was told that i could go back to work in the dec of 2002, but had restrictions on what work i should do and driving ! i went back to preschool but i only work 3 morns a week and after driving home eyes get sore.
There is no way that i could go back to my old job as it was 19 miles away and not allowed to drive in rain and dark/dusky condictions so had to find a more local job with less hours! ( reading books to kids was hard unless book in front of me ) my preschool now are great and we must have the BIGGEST books ever printed so that i can read stories to kids !
all i can say is do what feels right ofr u,if u feel u couldnt cope just yet going back to work then explain to doctor,my doc was very understandable and signed me off every 6 months!
hope u sort it out soon .
sarah x
thanx for message !
every doctor/surgeon and consultant seem to differ on every aspect of KC and transplants!
my surgeon is a saint ( must be to put up with me ), i was worried about eye not opening and every time i saw surgeon he explained that the eye will open when its ready and not to force it ! i was off work from june 2001 , had transplant august 2002 and went back to work april 2003! although i was told that i could go back to work in the dec of 2002, but had restrictions on what work i should do and driving ! i went back to preschool but i only work 3 morns a week and after driving home eyes get sore.
There is no way that i could go back to my old job as it was 19 miles away and not allowed to drive in rain and dark/dusky condictions so had to find a more local job with less hours! ( reading books to kids was hard unless book in front of me ) my preschool now are great and we must have the BIGGEST books ever printed so that i can read stories to kids !
all i can say is do what feels right ofr u,if u feel u couldnt cope just yet going back to work then explain to doctor,my doc was very understandable and signed me off every 6 months!
hope u sort it out soon .
sarah x
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David
for rosemary
Thank you for your information about the display screen regulations. I still think that my company could be a bit more lenient in my case, although I understand the point you make about everyone trying the same thing for just everyday spectacles and lenses.
When I went to see the specialist at my local hospital he was unavailable and I had to see his assistant. She however did not make me aware that NHS lenses would be any cheaper than from my High Street optician - in fact she could not even give me any details of cost at all, which I found most odd.
I have had no problems at all with my High Street opticians from the time I started wearing soft contact lenses some 25 years ago and therefore I have every confidence in them, even with my new RGPs. However if the NHS lenses are cheaper I may have to follow it up as money is a premium at the moment.
As in Andrews case I too suffer badly from glare and get headaches but as you say this is probably due to the reaction from the brightness of fluorescent lighting in my workplace.
Thank you for your information about the display screen regulations. I still think that my company could be a bit more lenient in my case, although I understand the point you make about everyone trying the same thing for just everyday spectacles and lenses.
When I went to see the specialist at my local hospital he was unavailable and I had to see his assistant. She however did not make me aware that NHS lenses would be any cheaper than from my High Street optician - in fact she could not even give me any details of cost at all, which I found most odd.
I have had no problems at all with my High Street opticians from the time I started wearing soft contact lenses some 25 years ago and therefore I have every confidence in them, even with my new RGPs. However if the NHS lenses are cheaper I may have to follow it up as money is a premium at the moment.
As in Andrews case I too suffer badly from glare and get headaches but as you say this is probably due to the reaction from the brightness of fluorescent lighting in my workplace.
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Brian Taylor
Hi Jane
The light sensitivity is normal, you need to buy the darkest pair of sunglasses you can find. When glasses are made they dip the lenses In a tinting liquid to darken them I asked my optician to dip them to the maximum if you find they are to dark they can remove the tint easily and start again. I also wore safety glasses with side shields to block out the light. This will all pass in several weeks and is bad at the moment due in part to your raised pressure.
You may feel at this stage that you should not have bothered but in 12 months time when the eye is settled and you have good vision you will be very pleased you went through with it. I've had 4 and because of a rejection episode in my recent left graft will have to have another sometime soon and I am just grateful I can have them because without them I would have been blind from the age of 26 where as at 52 I only wear glasses to correct my vision.
If you notice any changes i.e. redness or pain ring the hospital and get it checked out they would rather you contact them quickly even if its you over reacting than have a problem develop. I remember doing that 2 or 3 times with each of mine and the Dr said he would rather me squeak up if I was concerned.
Good luck
Brian T
< replied-to message removed by QT >
The light sensitivity is normal, you need to buy the darkest pair of sunglasses you can find. When glasses are made they dip the lenses In a tinting liquid to darken them I asked my optician to dip them to the maximum if you find they are to dark they can remove the tint easily and start again. I also wore safety glasses with side shields to block out the light. This will all pass in several weeks and is bad at the moment due in part to your raised pressure.
You may feel at this stage that you should not have bothered but in 12 months time when the eye is settled and you have good vision you will be very pleased you went through with it. I've had 4 and because of a rejection episode in my recent left graft will have to have another sometime soon and I am just grateful I can have them because without them I would have been blind from the age of 26 where as at 52 I only wear glasses to correct my vision.
If you notice any changes i.e. redness or pain ring the hospital and get it checked out they would rather you contact them quickly even if its you over reacting than have a problem develop. I remember doing that 2 or 3 times with each of mine and the Dr said he would rather me squeak up if I was concerned.
Good luck
Brian T
< replied-to message removed by QT >
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Jane Webb
Sarah M
Although my employers have been very understanding, I do feel guilty being off only 3 weeks as I was told it would only be two!! Fortunately, my GP is very good too and am sure will have no problem extending my sick leave. I just have to shrug off the 'guilts'.
The consultant will not make any comment on whether I am fit to drive and says he will leave that up to me but although I was driving prior to the op with a hydrops in one eye I felt okay driving with good sight in just one eye. Now though, it's a different story because I can't very well drive with one streaming eye as it inevitably sets the other one off.
Thanks for your comments Sarah - it's good to hear the success stories too.
Jane W
>
< replied-to message removed by QT >
Although my employers have been very understanding, I do feel guilty being off only 3 weeks as I was told it would only be two!! Fortunately, my GP is very good too and am sure will have no problem extending my sick leave. I just have to shrug off the 'guilts'.
The consultant will not make any comment on whether I am fit to drive and says he will leave that up to me but although I was driving prior to the op with a hydrops in one eye I felt okay driving with good sight in just one eye. Now though, it's a different story because I can't very well drive with one streaming eye as it inevitably sets the other one off.
Thanks for your comments Sarah - it's good to hear the success stories too.
Jane W
>
< replied-to message removed by QT >
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