Just to say Thanks

General forum for the UK Keratoconus and self-help group members.

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Linda H
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Keratoconus: Yes, I have KC
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Just to say Thanks

Postby Linda H » Sun 08 Mar 2009 10:44 am

I have had KC for over 20 years. I've worn G.P. lens in both eyes. Two years ago I had a Scleral lens fitted in my right eye. In January I experienced my first Hydrops in that eye. This was quite frightening because I didn't know what was happening. My Doctor and Eye casualty were brilliant, but I did have to squeeze information out of them. Thats when I found this site as I needed to know more. I read about Hydrops and felt more in control . On Thursday I saw my consultant ( 6 weeks after the Hydrops happened). He has told me that I need a transplant in that eye. So he's putting my on the waiting list a Bristol eye bank. At the moment I am trying to get my head around it all. That is why I'm back here to find out more information. What I've read makes me feel a lot better and I don't feel so alone. I want to say a BIG thanks to you all. This is my first ever post on a forum. Hopefully now I might come out of the playpen.

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Anne Klepacz
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Re: Just to say Thanks

Postby Anne Klepacz » Sun 08 Mar 2009 11:59 am

Hi Linda and welcome!
I'm glad you've found us and realised you're not alone - there's lots of us out there! As well as all the information you'll find on the website, we do also have various booklets and DVDs about various aspects of keratoconus. So do e-mail me with your postal address and I can send you more information anne@keratoconus-group.org.uk
We also hold meetings in various locations (advertised on the website) so come along if you can. And you can chat to lots of people on the general discussion forum.
I hope the hydrops clears soon. You might even be one of the lucky ones who finds their sight improves after hydrops.
And you can come out of the playpen now!
All the very best
Anne

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Andrew MacLean
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Re: Just to say Thanks

Postby Andrew MacLean » Mon 09 Mar 2009 7:13 am

Linda

I have 'migrated' your string from the playpen to the General Discussion Forum. Thank you for a vary positive post, and all the best.

Andrew
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rosemary johnson
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Re: Just to say Thanks

Postby rosemary johnson » Tue 10 Mar 2009 6:58 pm

Hallo, welcome and congratulations on posting.
SOrry to hear about the hydrops.
As you've probably gathered from earlier reading, I'm a veteran of 4 of the things.
Did your consultant say why he (?) recons you need a graft? - has the hydrops left so much scarring you can hardly see out of it?
There are some parts of the medical world where the line seems to be that "hydrops" automatically means that a graft is next on the agenda - but it isn't always so.
SOme hydrops do heal over vry well (though it can take some time to settle down fully) and a graft is far from necessary.
Others leave lots of scarring and severely affected vision.
And plenty inthe middle - with a it of scarring but nothing you can't live with.
generally, also, it is better to leave the hydrops to heal thoroughly and "settle down" before trying a graft. SO being on a waiting list is actualy a good thing not a bad one - doing a gaft now, so soon after a hydrops has happened, wouldn't be the best idea, or so I gather.
I do hope yours will settle down well enough that before you get to the top of the waiting list, you can decide you don't need a graft. But if not, and you decide it really would bbe better to go ahead, then I hope it all goes very well.
Rosemary

Linda H
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Keratoconus: Yes, I have KC
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Re: Just to say Thanks

Postby Linda H » Fri 13 Mar 2009 10:44 am

Hello Rosemary. Thanks for the welcome. You ask why my consultant is planning to do the graft. I saw him last Thursday, six weeks after the Hydrops happened. I had visited Eye Casualty the week before I saw him and they were pleased that the water logging had gone down, and the clouding had gone. The clouding disappeared all of a sudden. The day before it went I had been moving some shrubs in the garden on a warm sunny day. I wonder if the increased heat inside and outside helped. My Hydrops was not a severe one from what I've read about (no complete white-outs or anything). He said I had a lot of scarring, and distortion which was mostly right in front of the pupil, and that I would not be able to go back to my Sclerel lens. In fact I have to manage with nothing in that right eye until I have the graft ( the sight is pretty usless ). I see him again in two months time so that he can keep a check on me. It has helped so much to read about other peoples experiences. Take care. Linda

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rosemary johnson
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Re: Just to say Thanks

Postby rosemary johnson » Fri 13 Mar 2009 10:11 pm

Well, I can imagine a hydrops leaving scarring.
Not sure why you shouldn't be able to go back to wearing a scleral, though - did he say?
I mean.... leaving it for a while if the eye is still sensitive might be sensible. And if the scarring has changed the shape of the eye, the lens may no longer fit as well as it did.
But I was wearing sclerals after all 4 hydrops (some of them pretty soon after!) and no-one ever suggested I shouldn't.
Continued best wishes for everything settling down well.
ROsemary

Linda H
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Keratoconus: Yes, I have KC
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Location: Cornwall

Re: Just to say Thanks

Postby Linda H » Sat 14 Mar 2009 6:13 pm

Hi Rosemary. You ask why the consultant wouldn't let me go back to wearing my Scleral lens. When I asked him, I was told it was because I had so much scarring and distortion which was right in front of the pupil, they would not be able to get me any sort of useful sight with a lens. He also said that he didn't want me to wear it to avoid further damage to the cornea. I had gone to my appointment expecting to be told everything was mending well and I could go back to my lens. I was not expecting to be told I needed a transplant. To say the least my Gob was Smacked !! I will find out more when I go back to him in 2 months and will post the results. Thanks for all of your interest. Regards Linda

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Andrew MacLean
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Re: Just to say Thanks

Postby Andrew MacLean » Sat 14 Mar 2009 6:46 pm

Linda

That makes sense: one of the problems of hydrops episodes is that they do not always leave scarring in convenient places!

All the best

Andrew
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Susan Mason
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Re: Just to say Thanks

Postby Susan Mason » Sat 14 Mar 2009 7:23 pm

Hi Linda

We seem to have some things in common :-)

I have now had two episodes of hydrops (had to be greedy didn't I?). The first one was in June 2008 and was really mild, in my left eye. I too wear scleral lenses and have done so since around 2003. By the end of August they were happy for me to go back to the contact lens clinic and on the 4th Sept I started to wear the lens in the left eye again and sadly on the 16th the hydrops went again however, this time much worse. I too have now been told the only way i will get any useful vision is with a graft and currently whilst still waiting for the hydrops to clear i am a regular visitor at the hospital every 4 weeks or so - pity we can collect reward points I would be well in.
Really fed up with it all now and seem to be having more negative days than positive ones,

If only it was more guaranteed and then the surgery would seem a safer bet. My consultant has indicated that maybe around Sept we will need to start to look at it more definately.

Keep posting, I don't look as much as I once used to, with only one eye and vision not great holding down the job is becoming more of a challenge so often find myself with no vision when at home.

Rubbish really isn't it.

Fingers crossed for you.

Susan x
don't let the people that mean nothing to you get you down, because in the end they are worth nothing to you, they are just your obstacles in life to trip you up!

Linda H
Newbie
Newbie
Posts: 9
Joined: Sun 08 Mar 2009 10:16 am
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Cornwall

Re: Just to say Thanks

Postby Linda H » Tue 17 Mar 2009 5:51 pm

Hi Susan, I don't think your greedy. If you'd have asked you could have had mine too! I'm lucky I had my BUS PASS birthday last August so I don't have to work. I do admire you holding down a job whilst dealing with the Hydrops problems. Chin-up. When I get low or frustrated I just give myself a good shake and think of all of the people out there that have far worse health problems than me. My Hydrops has settled well. I am going threw the info. and DVDs' that Anne sent me. I am feeling more balanced about the graft too. So now I have to play the waiting game, and you never know from what I've read on the forum the graft might not be the final outcome. Wishing you well. Regards Linda


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