Hi Folks,
Sorry to be a gloom and doom merchant when bank hols are upon us but I am soooo depressed. 26 days before I go in for my graft and I am not a happy bunny.Hubby has taken himself off for a lads weekend and I've no one to talk to. (it's been planned a year so I'm happy for him to go!)
At the pre op my blood pressure was through the roof and they said if it didn't come down there would be no op.
Went to the GP to have it re done and it was fine no medication required.
although I wouldn't be human if I said that I wasn't scared about the op , and the blood pressure thing shows I was anxious,its not that getting me down. It's what I've learned about what happens after the op that's depressing me.
I have been so lucky when I read other ppls posts on here. Diagnosed with KC - given rigid lenses- took to them no problem- wearing them 16 hours a day- obviously had my ups and downs with crappy vision and lenses falling out and getting stuck but I have never stopped working.
Going from this straight to graft confuses me! I am having a full thickness graft because my eyes are so deeply scarred so don't get me wrong,I do have sight problems and without my lenses I can't see at all, but why can't I just continue as I am until I can't keep the lenses in? Never thought to ask consultant this and I feel I'm too far down the road to ask now! Any way they wouldn't be doing it if they didn't think it was necessary !
I also have other health issues and think I may not even make it through the op. which is stupid cos they wouldn't do it if there was a problem would they?
I'm going to do letters for my kids just in case though, if I can stop bubbling long enough to get something down on paper!
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Pauline Houke
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- Location: North East
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Never cry over spilt milk.It could have been whisky!
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GarethB
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Hi Pauline,
It is never too late to back out or ask questions. I was asking questions all the time before my grafts were done. I only stopped when I had the pre-med.
Having been through grafts twice and the recent grafts stories here, you will be fine. There is little discomfort, but like a small piece of grit in the eye initially, but once the drops kick in a few hours after the op it is more like looking through dry teary eyes.
When the stitches come out, anasthtetic drops are used and you do not feel a thing or see a thing. You get knocked out completly when all the stitches come out after 12 - 18 months.
I know this is not the place to lay all our health issues out to the world, but you have answerd your own yestion regarding making it through the op. It is not a long procedure, abou 60 - 90 minutes I think.
It has been joked about here recently, but hypnotherapy is supposed to be good for all sorts of fears and phobias. Perhaps this might be necessary or counseling through your GP to help you understand and work through your fears regarding the op.
Hope some of this puts your mind at ease.
Gareth
It is never too late to back out or ask questions. I was asking questions all the time before my grafts were done. I only stopped when I had the pre-med.
Having been through grafts twice and the recent grafts stories here, you will be fine. There is little discomfort, but like a small piece of grit in the eye initially, but once the drops kick in a few hours after the op it is more like looking through dry teary eyes.
When the stitches come out, anasthtetic drops are used and you do not feel a thing or see a thing. You get knocked out completly when all the stitches come out after 12 - 18 months.
I know this is not the place to lay all our health issues out to the world, but you have answerd your own yestion regarding making it through the op. It is not a long procedure, abou 60 - 90 minutes I think.
It has been joked about here recently, but hypnotherapy is supposed to be good for all sorts of fears and phobias. Perhaps this might be necessary or counseling through your GP to help you understand and work through your fears regarding the op.
Hope some of this puts your mind at ease.
Gareth
Pauline,
you come here and moan all yyou want.. bank holiday or not... KC is here to stay and so is the SUPPORT!
Can't really advise on the graft issue..
but hope it all goes smoothly and keep in touch and let us know how your getting on..
As for the questions... just gte a piece of paper and a pen... evertime you feel like asking a question.. write it down..
when you next go to the consultant... ask them... don;t be afraid.. the more you empower yaself with the knowledge.. the better it will be to focus on the job and be less worried!
don;t get yaself all worked up!
Hope your feeling better soon!
regards...
you come here and moan all yyou want.. bank holiday or not... KC is here to stay and so is the SUPPORT!
Can't really advise on the graft issue..
but hope it all goes smoothly and keep in touch and let us know how your getting on..
As for the questions... just gte a piece of paper and a pen... evertime you feel like asking a question.. write it down..
when you next go to the consultant... ask them... don;t be afraid.. the more you empower yaself with the knowledge.. the better it will be to focus on the job and be less worried!
don;t get yaself all worked up!
Hope your feeling better soon!
regards...
"Snowflakes are one of Nature's most fragile things, but just look at what they can do when they stick together!"
"Tell me and i'll forget, show me, and i may not remember, involve me, and i'll understand!"
"Tell me and i'll forget, show me, and i may not remember, involve me, and i'll understand!"
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Pauline Houke
- Contributor
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- Joined: Thu 12 May 2005 11:35 am
- Location: North East
Susan thanks for your kind offer. When I read your posts to people you seem like a very caring person but I'm just not in the right place to speak "voice to voice" to anyone at the moment.I feel I can't even talk to my mum at the moment.
Thanks Gareth for your reply. I don't know if I can put it into words but it's not the procedures I'm dwelling on it's the quality of vision afterwards that's concerning me. Obviously making allowances for settling in and such but it seems to be just one big gamblle. do you know what i mean?
Thanks Gareth for your reply. I don't know if I can put it into words but it's not the procedures I'm dwelling on it's the quality of vision afterwards that's concerning me. Obviously making allowances for settling in and such but it seems to be just one big gamblle. do you know what i mean?
Never cry over spilt milk.It could have been whisky!
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Pauline Houke
- Contributor
- Posts: 28
- Joined: Thu 12 May 2005 11:35 am
- Location: North East
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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
Hello Pauline
I too have just recently been offered a graft, a DLK - Deep Lamellar Keratoplasty. However, for me I felt it was not the right time and have therefore put it on hold. The hospital have been really good and I have an agreement where I can go back whenever I feel ready or I will be seen again in about 12 months time.
I am currently in scleral lenses and whilst these are not currently as good as I would like I am managing so while I can manage I have decided it is best to do so.
I agree with Gareth's post it is never too late to ask questions or change your mind. Better to clear up all your concerns before the surgery I would feel and I am sure that your consultant will understand this.
As for relaxation and surgery there was a post here some time back about a similar matter, if I can find it I will post you the details.
Best wishes
Susan
I too have just recently been offered a graft, a DLK - Deep Lamellar Keratoplasty. However, for me I felt it was not the right time and have therefore put it on hold. The hospital have been really good and I have an agreement where I can go back whenever I feel ready or I will be seen again in about 12 months time.
I am currently in scleral lenses and whilst these are not currently as good as I would like I am managing so while I can manage I have decided it is best to do so.
I agree with Gareth's post it is never too late to ask questions or change your mind. Better to clear up all your concerns before the surgery I would feel and I am sure that your consultant will understand this.
As for relaxation and surgery there was a post here some time back about a similar matter, if I can find it I will post you the details.
Best wishes
Susan
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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
Hello again Pauline,
Janet Manning previously wrote:-
I used self hypnosis to remain totally relaxed. I went to a hypnotist who made me a tape with which to practise prior to surgery. During the second op I was so relaxed I went to sleep!
Janet's grafts I undertand were done under a local, which it seems some surgeons use.
Why not try posting to Janet to see if she can give you any advice?
best wishes
Susan
Janet Manning previously wrote:-
I used self hypnosis to remain totally relaxed. I went to a hypnotist who made me a tape with which to practise prior to surgery. During the second op I was so relaxed I went to sleep!
Janet's grafts I undertand were done under a local, which it seems some surgeons use.
Why not try posting to Janet to see if she can give you any advice?
best wishes
Susan
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jayuk
- Ambassador
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- Joined: Sun 21 Mar 2004 1:50 pm
- Location: London / Manchester / Cheshire
Pauline
I know this is going to sound typical but do not worry about the op itself if you are. I had ALL the questions you must have last month...even up untlll 10 minutes before I was given the Anaesthetic!
The easiest bit is the Op itself.....and just take advantage of the Deep REM Sleep.....lol....thats what I did...and was excellent!.....
But you are right to have conerns on Post Op. I do/have even now. But you HAVE to be positive and you HAVE to make sure you dont stress yourself post op. Touch wood i have had a good experience so far as detailed in my thread....and daily things are getting better.........the hardest part for me has been to "act like a butterfly" as my consultant told me........IE Do not do anyting for the first 3-6 weeks thats stressfull/strenuous.....I have followed that to the T and each day its so much better....the healing for me has been good thus far......but I am also prepared for the other side of potential problems......
You mention that you have Scarring....I know where you are coming from....if it was NOT for the scarring I would NOT have had the op.....but there is NO cure to reduce corneal scarring...thus I had mine done.
You will find it remarkable the following day.......when the eye opens and you can actually see your hand and things......thats how I felt....its soo truely strange...I, like you, couldnt see anyting clear without my lens....yet now can wake up without my lenses and see things from the healing grafted eye!.......
You are not alone on this, and dont feel like you are......feel free to PM me, or air any questions here......
However, just one thing.....What is yur vision with the lenses in?....with the deeply scared "to be" grafted eye?......I based my decision on the graft as for a year I didnt use that eye as I have extremely large central scar and even with lenses it was misty and I couldnt see a darn thing clear....like looking through clear fog. Dont feel that you still need to go through with it.......if you can still get vision....with lenses and have also explored other avenues relating to lenses..........a CT is not a cure, but a stop gap....some it lasts for 3 months (extreme rejection) others 30 years and over with 20/20 vision, and others the rest of there lifes!
J
I know this is going to sound typical but do not worry about the op itself if you are. I had ALL the questions you must have last month...even up untlll 10 minutes before I was given the Anaesthetic!
The easiest bit is the Op itself.....and just take advantage of the Deep REM Sleep.....lol....thats what I did...and was excellent!.....
But you are right to have conerns on Post Op. I do/have even now. But you HAVE to be positive and you HAVE to make sure you dont stress yourself post op. Touch wood i have had a good experience so far as detailed in my thread....and daily things are getting better.........the hardest part for me has been to "act like a butterfly" as my consultant told me........IE Do not do anyting for the first 3-6 weeks thats stressfull/strenuous.....I have followed that to the T and each day its so much better....the healing for me has been good thus far......but I am also prepared for the other side of potential problems......
You mention that you have Scarring....I know where you are coming from....if it was NOT for the scarring I would NOT have had the op.....but there is NO cure to reduce corneal scarring...thus I had mine done.
You will find it remarkable the following day.......when the eye opens and you can actually see your hand and things......thats how I felt....its soo truely strange...I, like you, couldnt see anyting clear without my lens....yet now can wake up without my lenses and see things from the healing grafted eye!.......
You are not alone on this, and dont feel like you are......feel free to PM me, or air any questions here......
However, just one thing.....What is yur vision with the lenses in?....with the deeply scared "to be" grafted eye?......I based my decision on the graft as for a year I didnt use that eye as I have extremely large central scar and even with lenses it was misty and I couldnt see a darn thing clear....like looking through clear fog. Dont feel that you still need to go through with it.......if you can still get vision....with lenses and have also explored other avenues relating to lenses..........a CT is not a cure, but a stop gap....some it lasts for 3 months (extreme rejection) others 30 years and over with 20/20 vision, and others the rest of there lifes!
J
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP
(C) Copyright 2005 KP
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GarethB
- Ambassador
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- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Pauline,
Quality of vision, now that is te hardest one of all to answere as we all have different expectations. For me, it was a case that if I could wear glasses afetr the graft regardless of how thick or stupid the lenses looked, then that was fine by me. Just so long as I was legal to drive and could start racing again.
My expectations were far exceeded in that three years later I needed no sight correction for another 5 years. I did need glasses after that period but after initial ivestigations, it was not down to a re-occurance of KC, cornea shape was with acceptable limist for a normal person. I had just become short sighted.
I know I wear lenses now, but that is down to a side of KC so rare that you have more chance in standing in rocking horse poo (as posted on another thread). So I will not go in to that negative.
The grafts are now 18 years old and doing fine, it is the rest of me that is completely wrecked
Hope this helps a little.
Gareth
Quality of vision, now that is te hardest one of all to answere as we all have different expectations. For me, it was a case that if I could wear glasses afetr the graft regardless of how thick or stupid the lenses looked, then that was fine by me. Just so long as I was legal to drive and could start racing again.
My expectations were far exceeded in that three years later I needed no sight correction for another 5 years. I did need glasses after that period but after initial ivestigations, it was not down to a re-occurance of KC, cornea shape was with acceptable limist for a normal person. I had just become short sighted.
I know I wear lenses now, but that is down to a side of KC so rare that you have more chance in standing in rocking horse poo (as posted on another thread). So I will not go in to that negative.
The grafts are now 18 years old and doing fine, it is the rest of me that is completely wrecked
Hope this helps a little.
Gareth
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Sweet
- Committee
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- Vision: Graft(s) and contact lenses
- Location: London / South Wales
(((Pauline)))
Hun it doesnt matter if it is a bank holiday soon. i dont think your eyesight cares about that! You can complain all you want, we are listening!
Im sorry but i cant advise you on grafts as i havent had one, but i know as with any op you can back out right up until the time they knock you out!! If you dont feel ready SAY SO. This is YOUR eyesight and your right to have it done or not.
Personslly i backed out of having a graft done a few years back. I would like to say that i thought there was something better out there, but i think the reality was that i was terrified. Please dont take this as a put off and to worry you, as loads of people have been through this, but even as a nurse i just couldnt do it, daft i know!!
A few years on and i have tried scleral lenses and am waiting for them. I can see four lines on a chart which is one line better than my right! So to say i was impressed is an understatement as i hardly see out of that eye normally. To me having a graft done is the last, last option you cant go back on it. So please while i am sure you understand what you are having done and have read from those here who have been there, please think if this is whst you REALLY want before you go through with it. Nobody will think badly of you if you opt out, and you can always go ahead at a later date if you decide to.
Just know we are all there for you and wish you all the best whatever you decide.
Take care, love Claire X x X
Hun it doesnt matter if it is a bank holiday soon. i dont think your eyesight cares about that! You can complain all you want, we are listening!
Im sorry but i cant advise you on grafts as i havent had one, but i know as with any op you can back out right up until the time they knock you out!! If you dont feel ready SAY SO. This is YOUR eyesight and your right to have it done or not.
Personslly i backed out of having a graft done a few years back. I would like to say that i thought there was something better out there, but i think the reality was that i was terrified. Please dont take this as a put off and to worry you, as loads of people have been through this, but even as a nurse i just couldnt do it, daft i know!!
A few years on and i have tried scleral lenses and am waiting for them. I can see four lines on a chart which is one line better than my right! So to say i was impressed is an understatement as i hardly see out of that eye normally. To me having a graft done is the last, last option you cant go back on it. So please while i am sure you understand what you are having done and have read from those here who have been there, please think if this is whst you REALLY want before you go through with it. Nobody will think badly of you if you opt out, and you can always go ahead at a later date if you decide to.
Just know we are all there for you and wish you all the best whatever you decide.
Take care, love Claire X x X
Sweet X x X
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