KC people living in Scotland

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

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snorkelboy
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Keratoconus: Yes, I have KC
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KC people living in Scotland

Postby snorkelboy » Fri 07 Jan 2011 11:05 pm

Hi,

I hope that this thread is still active and I haven't posted in the wrong place.

My name is Paul and I must confess I found your community purely by accident but it looks like a great place to hang around as like may sufferers you feel pretty alone with no idea where you can get some help/support.
I was diagnosed with KC about 20 years ago in my left eye only. My vision was recorded as 6/60 in this eye but as I had a 'lazy' left eye this loss of vision has never really upset me. This was managed with a gas permeable lenses that I have never really been able to wear due to the associated pain and discomfort.
I have recently now been diagnosed in my right eye, thankfully this is still almost manageable with a 'tauric' soft lens but vision is slowly worsening.
I am currently awaiting an appointment at Gartnavel following referral by my consultant ophthalmologist for some sort of graft to my left eye and Intacs to right. I must admit to starting to get a bit frightened of being almost blind with 2 young babies who I want to see growing up.
Does anybody have any info on the aftercare following these procedures in relation to what I can or cannot do post procedure ie Do I need to take time off work etc?

Thank you in advance of your help.

Warmest wishes.

Paul

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Andrew MacLean
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Re: KC people living in Scotland

Postby Andrew MacLean » Sat 08 Jan 2011 1:16 pm

Paul

Welcome to the forum. I have moved your post to the General Discussion Forum because it will achieve more hits here.

I am another patient at Gartnavel. The surgeons there have performed two cornea grafts for me, and I have been a long term patient of the contact lens clinic (over 25 years). They have also corrected a cataract for me here, and after each surgery there has been a period during which they have advised against any strenuous activity.

The do not like patients attending work for at least the first four weeks after surgery. I think that this is because of the increased risk of infection when you travel around on public transport.

I wish you well with your first appointment, and look forward to hearing how you get on.

Andrew
Andrew MacLean

snorkelboy
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Keratoconus: Yes, I have KC
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Re: KC people living in Scotland

Postby snorkelboy » Sat 08 Jan 2011 3:00 pm

Hi Andrew,

Thank you very much for your prompt reply and information contained within it

I have been attending the contact lens clinic at Falkirk Royal Infirmary since diagnosis. Until recently all that was on offer was hard lenses. I have tried hybrid lenses and whilst much more comfortable I have been unable to get the wearing time much beyond 3 hours before they become too uncomfortable to wear. Thus my consultant refered me to Gartnavel with a view to ? Intacs ?? X linking to the right eye (the most recently diagnosed) the left eye has no useful vision so I guess that is why the chat is about a graft of some kind although I believe the type I have been refered for is not a 'penetrating keratoplasty' I thought that there was only one kind of graft so if anyone has any information on different types of graft I would be grateful.

My appointment is next week so not long to wait.

Paul

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: KC people living in Scotland

Postby Anne Klepacz » Sat 08 Jan 2011 5:20 pm

Hi Paul
Just to add that if you e-mail your postal address to anne@keratoconus-group.org.uk there's more information I can send you (DVDs of a couple of our conferences which cover both corneal grafts and Intacs). It's also possible that Gartnavel could explore more contact lens options with you like piggy backing (wearing a soft lens under a hard one) or scleral or semi scleral lenses.
All the best for your appt next week.
Anne

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Andrew MacLean
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Keratoconus: Yes, I have KC
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Re: KC people living in Scotland

Postby Andrew MacLean » Sun 09 Jan 2011 9:01 am

Paul

In my experience the staff at Gartnavel will not suggest any surgery that is not indicated by your condition. Don't worry too much about the consultation and what they may suggest, but do write down any questions you may have on a notepad and make sure that you have asked all your questions before leaving the consulting room. The doctors like patients to ask questions like this and do not mind in the least if the consultation takes a little longer.

Andrew
Andrew MacLean

snorkelboy
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Posts: 16
Joined: Fri 07 Jan 2011 10:42 pm
Keratoconus: Yes, I have KC
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Re: KC people living in Scotland

Postby snorkelboy » Fri 14 Jan 2011 7:49 am

Hi folks,

Thanks for everyones help and information.

Just a quick update, I attended Gartnavel yesterday and seen the consultant. He has pencilled me in for corneal transplantation in March sometime. I know this is the correct decision but I must confess to being a bit anxious and daunted about this.
Apparently there are 2 type of graft, I didn't quite catch what he said but the one he is doing for me is not the penetrating keratoplasty. Does anyone know where I might find further info on this procedure?

Thanks for taking time to ready post.

Warmest regards.

Paul

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: KC people living in Scotland

Postby Anne Klepacz » Fri 14 Jan 2011 9:20 am

Hello Paul,
25 yrs ago, when I had my grafts, there was only one type of graft - the penetrating one. But now most people have a partial graft (known as a DALK). That involves just taking the top few layers of the cornea off and replacing them with a graft, leaving you with your own endothelium (the innermost layer of the cornea). Partial grafts have a lower risk of rejection. They aren't possible for everyone - they can't be done if there is too much scarring on the cornea or for people who have had a hydrops episode. You'll find more information if you look at the treatments section on the home page of this site. And, as I said before, if you e-mail me your postal address, I can send you the DVD of our 2005 conference where we had a very good talk from one of the surgeons at Moorfields describing the two types of graft.
And there are lots of people here who have had partial grafts and I'm sure will answer any questions you may have.
All the very best
Anne

snorkelboy
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Keratoconus: Yes, I have KC
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Re: KC people living in Scotland

Postby snorkelboy » Fri 14 Jan 2011 9:06 pm

Thanks Anne,

I have indeed got both DVDs but have only had a chance to watch the one about Intacs etc. I shall look for DALK as you suggest.

Thanks again.

Paul

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Anne Klepacz
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Posts: 1940
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: KC people living in Scotland

Postby Anne Klepacz » Sat 15 Jan 2011 9:00 am

Apologies Paul - another senior moment!
Anne

snorkelboy
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Posts: 16
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Keratoconus: Yes, I have KC
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Re: KC people living in Scotland

Postby snorkelboy » Mon 11 Apr 2011 6:54 am

Hi Folks.

Just a quick update to let you know that I underwenta DALK procedure at Gartnavel Hospital on friday past. The surgeon is pleased with how it went and looking in the mirror his handy work looks amazing, except for some redness it is difficult to see that anything has been done to my eye. There is also a fair degree of 'gritty' type discomort.
The vision from my grafted eye is still very haxy and is probably no better than it was prior to the surgery but it is early days. I keep you all up to date with my progress and if anyone wants to ask any questions please feel free.

Warmest regards.

Paul


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