Quicktopic posts: Jan 2003
Moderators: Anne Klepacz, John Smith, Sweet
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Gillian Gruder
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harpomatrix@yahoo.co.uk
Hello
Thanks to everyone who posted a reply to another one of my miserable hydrops update. I just hate the waiting game i guess. Appreicate the kind words on here and in e-mail.
Just saw the hydrops section on the website. I mean I have hydrops and reading that even made me like wow thats scary! then looked at the pics and the hydrops freaked me out a little!!! And then it took me a second to realise that I had that!!! (joey style out of friends!!) And then I was like wow it looks like mine! Mine was a little more bulged and whiter but it was weird seeing it like that. Haven't actually seen any hydrops pics before! Scary Stuff!!!
Made interesting reading and its good theres a section up on the site now about hydrops.
Thanks people and see ya later
Thanks to everyone who posted a reply to another one of my miserable hydrops update. I just hate the waiting game i guess. Appreicate the kind words on here and in e-mail.
Just saw the hydrops section on the website. I mean I have hydrops and reading that even made me like wow thats scary! then looked at the pics and the hydrops freaked me out a little!!! And then it took me a second to realise that I had that!!! (joey style out of friends!!) And then I was like wow it looks like mine! Mine was a little more bulged and whiter but it was weird seeing it like that. Haven't actually seen any hydrops pics before! Scary Stuff!!!
Made interesting reading and its good theres a section up on the site now about hydrops.
Thanks people and see ya later
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Susan Mason
Dear All
A little update on my previous messages 1228, 1262 & 1263.
Friday 17/1/03 my latest appointment at the hospital, to try to refit the right eye (or so they had said)to enable me to finally have a pair of RGP corneal lenses that they were happy with and I can see through. I get there and unusually I am by myself (normally my husband is with me however, he had to pick our little boy up from school so had just dropped me off). As usual it was a quick sight test, dye in the eyes, a look for several minutes with the microscope and then the surprise - it seems my eyes always look ok when they see them to fit however, somehow when they send me home things go wrong and my eyes seem to change shape! Just one other type of lens to try I am told, I ask am I to see *** and refer to another optometerist who I know looks at fitting sclerals. I am told no by my present optometerist and asked to wait in the waiting room for a few minutes while they decide if they can try these other lenses today (sclerals I thought although they hadn't actually said)A few minutes later after a lot of bustling around I am back in the room having a lovely yellow plastic apron wrapped around me, messy I am told, involves water however no other advice given. I am told that my present optometerist fitted a chap last week (first go I get the impression)By now I have my optometerist and the head optometerist in the room with me. Two person job I joke, one to hold me down one to put them in I ask. I am told it is tricky as they need to use dye as well as the fluid req to fill them up, needs more than one pair of hands I am told. (fortunately I had read Sue Ingrams text re her speech at the conference, other wise by now I would have been out of the room and on my way home I am not a good patient) I ask them do they practise on each other in training and also tell them I have read of a doctor/consultant at Moorfiels who to put his patients at ease will put one in his own eye. I just seem to get a funny look re this comment (and seeing as I can't see well I am not 100% sure what is next)They tell me it's not so bad and I ask how will I manage at home if it takes two of you here? They say people get used to them quicker than they do. Anyway in they go and its not too bad, however I was disappointed that they did not show me the lens first. First attempt at right eye and they get air bubbles, 2nd attempt still no good and when they tried to take it out it fell on the floor. 3rd attempt and all seems ok. Left eye 2 attempts and it was in. Eye test next then microscope. Then its swap the lens round from left to right/right to left eye to see if the fit is better. Sight test again, microscope etc. Then they ask (after discussion with each other) do I mind seeing their colleague as it is important that they get the fitting right as the lenses are special (very expensive) and if ordered wrongly will be of no use to anyone else. I agree and am told I will need to come back on a Thursday (ok I think)Then its sclerals out, faced wiped, apron off and back to reception with my ticket to request another appointment. 20th February she says, what I say 5 weeks to wait, do they relise I have ceen coming backwards and forward since June 2002 and still am getting no where. Ring the number on the card I am told when I get home if I am not happy, best they can do.
Anyway I get home, after walking through the hospital and it's grounds (about 1 mile) crying my eyes out, what next I think. I find the number for the optometerists direct and happen to get my optometerist answering the phone, I explain and he replies sorry we are very busy best we can do. I ask alright if it all looks ok when I come back in 5 weeks time how long before I get the lenses? Oh about 3 weeks for them to be made them back in to see us.....
When will this end. I am now very fed up and told them so at the appointment. Each time I go they give me a little bit of hope to hold on to that I may be able to see soon then when I go back it is always bad news (well so far anyway)I explain if they told me this is it I would have to learn to make the best of it (after all I am managing after a fashion, i can't give up however difficult it may be, why should I). This doesn't seem to get me a reply just a what can I say look.
Any tips welcomed, horror stories as well. My fear now is I will get myself all worked up that these sclerals will work and then they wont for one reson or another, after all if RCP corneals did not do sclerals work ok for everyone.
PS Just like Harpo I am no good at the waiting game!!!!
A little update on my previous messages 1228, 1262 & 1263.
Friday 17/1/03 my latest appointment at the hospital, to try to refit the right eye (or so they had said)to enable me to finally have a pair of RGP corneal lenses that they were happy with and I can see through. I get there and unusually I am by myself (normally my husband is with me however, he had to pick our little boy up from school so had just dropped me off). As usual it was a quick sight test, dye in the eyes, a look for several minutes with the microscope and then the surprise - it seems my eyes always look ok when they see them to fit however, somehow when they send me home things go wrong and my eyes seem to change shape! Just one other type of lens to try I am told, I ask am I to see *** and refer to another optometerist who I know looks at fitting sclerals. I am told no by my present optometerist and asked to wait in the waiting room for a few minutes while they decide if they can try these other lenses today (sclerals I thought although they hadn't actually said)A few minutes later after a lot of bustling around I am back in the room having a lovely yellow plastic apron wrapped around me, messy I am told, involves water however no other advice given. I am told that my present optometerist fitted a chap last week (first go I get the impression)By now I have my optometerist and the head optometerist in the room with me. Two person job I joke, one to hold me down one to put them in I ask. I am told it is tricky as they need to use dye as well as the fluid req to fill them up, needs more than one pair of hands I am told. (fortunately I had read Sue Ingrams text re her speech at the conference, other wise by now I would have been out of the room and on my way home I am not a good patient) I ask them do they practise on each other in training and also tell them I have read of a doctor/consultant at Moorfiels who to put his patients at ease will put one in his own eye. I just seem to get a funny look re this comment (and seeing as I can't see well I am not 100% sure what is next)They tell me it's not so bad and I ask how will I manage at home if it takes two of you here? They say people get used to them quicker than they do. Anyway in they go and its not too bad, however I was disappointed that they did not show me the lens first. First attempt at right eye and they get air bubbles, 2nd attempt still no good and when they tried to take it out it fell on the floor. 3rd attempt and all seems ok. Left eye 2 attempts and it was in. Eye test next then microscope. Then its swap the lens round from left to right/right to left eye to see if the fit is better. Sight test again, microscope etc. Then they ask (after discussion with each other) do I mind seeing their colleague as it is important that they get the fitting right as the lenses are special (very expensive) and if ordered wrongly will be of no use to anyone else. I agree and am told I will need to come back on a Thursday (ok I think)Then its sclerals out, faced wiped, apron off and back to reception with my ticket to request another appointment. 20th February she says, what I say 5 weeks to wait, do they relise I have ceen coming backwards and forward since June 2002 and still am getting no where. Ring the number on the card I am told when I get home if I am not happy, best they can do.
Anyway I get home, after walking through the hospital and it's grounds (about 1 mile) crying my eyes out, what next I think. I find the number for the optometerists direct and happen to get my optometerist answering the phone, I explain and he replies sorry we are very busy best we can do. I ask alright if it all looks ok when I come back in 5 weeks time how long before I get the lenses? Oh about 3 weeks for them to be made them back in to see us.....
When will this end. I am now very fed up and told them so at the appointment. Each time I go they give me a little bit of hope to hold on to that I may be able to see soon then when I go back it is always bad news (well so far anyway)I explain if they told me this is it I would have to learn to make the best of it (after all I am managing after a fashion, i can't give up however difficult it may be, why should I). This doesn't seem to get me a reply just a what can I say look.
Any tips welcomed, horror stories as well. My fear now is I will get myself all worked up that these sclerals will work and then they wont for one reson or another, after all if RCP corneals did not do sclerals work ok for everyone.
PS Just like Harpo I am no good at the waiting game!!!!
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rosemary@umbilical.demon.
Sue Ingram:
would just like to put your mind at rest that once you have
sorted out the right solution for you in order to correct your
vision - which is usually contact lenses - you will find that
you can should be able to carry on your life completely as
normal.
Hey, Sue! - it's great to see there's at least one person with
KC who can be very upbeat about being so little affected.... but I do hope you're not giving anyone unnecessary false optimism?!
Yes, it's true, some people with KC are very little affected by
it, and can have good vision (with the contacts) for a long time and don't let it stop them doing much. There are also others of us who do have endless problems: with the contacts, infections,
impact of their lives, etc etc. OK, there are lots of things I
don't let it stop me doing - but equally, I have had to give up
going to lots of places/events (including going to Mass) if
there might be anyone taking photos, because I can't go anywhere near a flashgun. I can't use modern "windows" type computers
without specialist accessibility equipment, which is a great
blow to job prospects and renders most of the web useless.
Now, please don't get the other idea, anyone, and think I'm
trying to depress everyone!! - honestly, I'm not (and I've been
seriously wondering whether I'm now *sooooo* light-sensitive
because I've got something else wrong as well as KC - though if
anyone knows how to get anyone at Moorfields to be at all
interested in checking this out, please, *please* let me know!!)
What I'm trying to say is just this: KC is a very variable
condition, and different people are affected differently, and
may be affected differently at different times in their lives.
We all live with it - but for some it is easier than others.
That's all!
You should find that driving is not a problem as long as your
vision comes up to the requirement for driving when you have
your lenses in
And there's another very big AS LONG AS....!
Rosemary
--
Rosemary F. Johnson
would just like to put your mind at rest that once you have
sorted out the right solution for you in order to correct your
vision - which is usually contact lenses - you will find that
you can should be able to carry on your life completely as
normal.
Hey, Sue! - it's great to see there's at least one person with
KC who can be very upbeat about being so little affected.... but I do hope you're not giving anyone unnecessary false optimism?!
Yes, it's true, some people with KC are very little affected by
it, and can have good vision (with the contacts) for a long time and don't let it stop them doing much. There are also others of us who do have endless problems: with the contacts, infections,
impact of their lives, etc etc. OK, there are lots of things I
don't let it stop me doing - but equally, I have had to give up
going to lots of places/events (including going to Mass) if
there might be anyone taking photos, because I can't go anywhere near a flashgun. I can't use modern "windows" type computers
without specialist accessibility equipment, which is a great
blow to job prospects and renders most of the web useless.
Now, please don't get the other idea, anyone, and think I'm
trying to depress everyone!! - honestly, I'm not (and I've been
seriously wondering whether I'm now *sooooo* light-sensitive
because I've got something else wrong as well as KC - though if
anyone knows how to get anyone at Moorfields to be at all
interested in checking this out, please, *please* let me know!!)
What I'm trying to say is just this: KC is a very variable
condition, and different people are affected differently, and
may be affected differently at different times in their lives.
We all live with it - but for some it is easier than others.
That's all!
You should find that driving is not a problem as long as your
vision comes up to the requirement for driving when you have
your lenses in
And there's another very big AS LONG AS....!
Rosemary
--
Rosemary F. Johnson
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rosemary@umbilical.demon.
-
Kirsty
Hi
I was diagnosed with KC last January and no-one has really explained it to me. But I was provided with my first lenses on Friday. It takes me ages - but I keep putting them in and I am up to 8 hours today with them in. My problem is I do not feel as though I can see with them in. Today is my first day at work (with them in) and I am really struggling to see the computer screen - help! Could they be in the wrong eyes? Am I allowed to swap them around? I am scared to ring my consultant as last time I saw him - and I did the eye test, I told him I did not think I could see as well as with my glasses. He put lots of other lenses in front of my eyes and the original lenses were still best. Does it take a while to get used to the lenses? Should I ring my consultant? My next appointment is not until March. I am worried work will start to suffer as it is taking me so long to read teh screen etc.
I am really grateful for any advice from anyone. I just don't want to come across as though I am over reacting. Thanks, Kirsty.
I was diagnosed with KC last January and no-one has really explained it to me. But I was provided with my first lenses on Friday. It takes me ages - but I keep putting them in and I am up to 8 hours today with them in. My problem is I do not feel as though I can see with them in. Today is my first day at work (with them in) and I am really struggling to see the computer screen - help! Could they be in the wrong eyes? Am I allowed to swap them around? I am scared to ring my consultant as last time I saw him - and I did the eye test, I told him I did not think I could see as well as with my glasses. He put lots of other lenses in front of my eyes and the original lenses were still best. Does it take a while to get used to the lenses? Should I ring my consultant? My next appointment is not until March. I am worried work will start to suffer as it is taking me so long to read teh screen etc.
I am really grateful for any advice from anyone. I just don't want to come across as though I am over reacting. Thanks, Kirsty.
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zulf_22@hotmail.com
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Payne Family
Don't panic.
My daughter was diagnosed with KC 7 years ago when she was just 4 years old. Katherine has tried lots of contact lenses and has now been advised to perservere with glasses for as long as she can becaue of potential damage to the blood vessels in her cornea. My daughter has tried about 6 different sorts of lenses and couldn't tolerate or see through them for more than 1 hour.
After losts of visits to our opticians (he has been very good) we have found some lenses (for her glasses) that have given her the best vision that she has had for several years. We had to wait for several days for lenses to be made as they couldn't be made on site, but it has been worth it.
< replied-to message removed by QT >
My daughter was diagnosed with KC 7 years ago when she was just 4 years old. Katherine has tried lots of contact lenses and has now been advised to perservere with glasses for as long as she can becaue of potential damage to the blood vessels in her cornea. My daughter has tried about 6 different sorts of lenses and couldn't tolerate or see through them for more than 1 hour.
After losts of visits to our opticians (he has been very good) we have found some lenses (for her glasses) that have given her the best vision that she has had for several years. We had to wait for several days for lenses to be made as they couldn't be made on site, but it has been worth it.
< replied-to message removed by QT >
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harpomatrix@yahoo.co.uk
".Every one on here seems to be confident..and dealing with their problem.. I have just told of my disorder and
it has upset me and dealt my confidenc a blow...
...I am perfectly healthy and yet young..and this has landed on me..
How do you guys do it..?"
>>>>>>>>> You obviously haven't been readin my posts!!!
it has upset me and dealt my confidenc a blow...
...I am perfectly healthy and yet young..and this has landed on me..
How do you guys do it..?"
>>>>>>>>> You obviously haven't been readin my posts!!!
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ali cooper
Hi Zulf (sorry don't know your name, just that name was on your post)
Well I don't know about feeling confident. I have only been diagnosed six months and I have some 'issues' with having KC that I am not dealing with too well. I have a Rose K2 lens to my left eye and that helps a little but I can only tolerate it for 3-5 hours and I have had it two months.
The main issue I have is the transplant issue. I have been on the donor end of the deal when I donated my uncles organs and although I was happy for them to take his corneas my cousin was adamant that they could not have them(to the point to checking his eyes after organ retrieval to check he still had them) I now have a problem with the fact that I may at some point in the future be asking another family to make the decision that my family couldn't. I cannot explain my feelings about this except that I am finding it very difficult and it brings me to tears to think of it.
I am also worried about my job as I am a nurse and I have to be able to read the medications and prescriptions etc. My ward manager has been very supportive so far, but I am only 29 and I worry about my long term job prospects. I also worry that I am not able to tolerate the lens as well as others seem to.
I can empathise with you, Zulf, and all I can say is that so far this support group has been great. I think it will take me a while to fully come to terms with the diagnosis as I am sure it will with you, but at least we have a great support network here to answer any questions and worries and not feel foolish. I hope things work out okay for you and don't be too disheartened as we are all here for you.
Harpo, although I have not replied to your posts before now I have been reading your progress reports with interest and hope that you recover from your hydrops very soon. I cannot imagine what you have been through, must be awful and frightening but I hope it all works out for you and keep us all up to date with how you are getting on.
Take Care Zulf and all,
Ally
>From: QT - zulf_22@hotmail.com
><qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: alicooperuk@hotmail.com
>Subject: Keratoconus
>Date: 20 Jan 2003 13:55:36 -0000
>
_________________________________________________________________ Stay in touch with MSN Messenger http://messenger.msn.co.uk
< replied-to message removed by QT >
Well I don't know about feeling confident. I have only been diagnosed six months and I have some 'issues' with having KC that I am not dealing with too well. I have a Rose K2 lens to my left eye and that helps a little but I can only tolerate it for 3-5 hours and I have had it two months.
The main issue I have is the transplant issue. I have been on the donor end of the deal when I donated my uncles organs and although I was happy for them to take his corneas my cousin was adamant that they could not have them(to the point to checking his eyes after organ retrieval to check he still had them) I now have a problem with the fact that I may at some point in the future be asking another family to make the decision that my family couldn't. I cannot explain my feelings about this except that I am finding it very difficult and it brings me to tears to think of it.
I am also worried about my job as I am a nurse and I have to be able to read the medications and prescriptions etc. My ward manager has been very supportive so far, but I am only 29 and I worry about my long term job prospects. I also worry that I am not able to tolerate the lens as well as others seem to.
I can empathise with you, Zulf, and all I can say is that so far this support group has been great. I think it will take me a while to fully come to terms with the diagnosis as I am sure it will with you, but at least we have a great support network here to answer any questions and worries and not feel foolish. I hope things work out okay for you and don't be too disheartened as we are all here for you.
Harpo, although I have not replied to your posts before now I have been reading your progress reports with interest and hope that you recover from your hydrops very soon. I cannot imagine what you have been through, must be awful and frightening but I hope it all works out for you and keep us all up to date with how you are getting on.
Take Care Zulf and all,
Ally
>From: QT - zulf_22@hotmail.com
><qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: alicooperuk@hotmail.com
>Subject: Keratoconus
>Date: 20 Jan 2003 13:55:36 -0000
>
_________________________________________________________________ Stay in touch with MSN Messenger http://messenger.msn.co.uk
< replied-to message removed by QT >
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