Feeling a little blue...

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Jennie_5678
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Keratoconus: Yes, I have KC
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Feeling a little blue...

Postby Jennie_5678 » Mon 30 Jan 2012 8:22 pm

Hi Everyone

Feeling a little down recently with it all :( . I got a place a uni to study primary education almost 2 and a half years ago. I had to give it up though due to my KC and limited number of contact lens wearing hours.

I thought it would be best if I got a part time local job - I am still looking since I left uni. I can only wear one contact lens because my left eye is so mis-shapen that my opthalmologist cannot get a good enough fit, even though he tried really hard to get a good fit. When I only wear one contact lens it puts a lot of strain on my contact lens wearing eye. It waters and goes very red and hurts like heck. I end up not wearing it!

My opthalmologist says I should try 'Hybrid Lenses'. I just do not want to go through the same process to end up where I am now. Do you think a corneal transplant would be my better option? I have so much support from my lovely family, but I need advice from people who are going through the same!

With all good wishes,

Jennie x

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Anne Klepacz
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Re: Feeling a little blue...

Postby Anne Klepacz » Mon 30 Jan 2012 8:51 pm

Hi Jennie,
sorry to hear you're having a tough time now, especially as you seemed to be doing so well with the SoClear lenses a year or two ago. The thing to bear in mind is that a transplant is no guarantee that you won't still need contact lenses afterwards - something like 60% of us need contact lens corrections post graft. Though on the plus side, for me contact lenses became much more comfortable post graft. So it's not an easy decision to make. There are other lens possibilities - the hybrid lenses your specialist has mentioned, piggy backing (wearing a soft lens underneath a hard one) and scleral lenses (the ones that cover the whole eye and don't touch the cornea at all, so are really good with awkward eye shapes). Of course, until you try them, there's no way of knowing whether one of these options can make a real difference to you. But then a transplant isn't an instant solution either, with months before you know how much improvement in vision there will be. No easy answers I'm afraid. All the best, whatever you decide.
Anne

sarkac
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Keratoconus: Yes, I have KC
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Re: Feeling a little blue...

Postby sarkac » Tue 31 Jan 2012 4:45 am

I guess intacs is the next option when contact lenses dont work. Its worth a try before cornea transplant
hybrid lenses are good. I was able to wear them for several hours .. when I was a newbie.. definitely worth a try .. are you on RGP's?

sarkac
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Posts: 78
Joined: Fri 08 Apr 2011 3:50 am
Keratoconus: Yes, I have KC
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Re: Feeling a little blue...

Postby sarkac » Tue 31 Jan 2012 4:45 am

I guess intacs is the next option when contact lenses dont work. Its worth a try before cornea transplant
hybrid lenses are good. I was able to wear them for several hours .. when I was a newbie.. definitely worth a try .. are you on RGP's?

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Sweet
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Re: Feeling a little blue...

Postby Sweet » Wed 01 Feb 2012 2:54 pm

Hi Jennie,

I felt exactly the same as you and it is such a rubbish place to be, I'm so sorry for you.

I was working in 'A&E' with 12 hour shifts and my only good eye with RGP's had an ulcer and so I had to stop wearing my lenses. I have never had much vision with my other eye so decided to try a corneal graft (DALK) to try to get something out of it. Six years on and my vision is not much better, although I can tolerate a lens now. Surgery is the very very last option, please try all the other lenses first.

In the end, after months without a lens, my ulcer healed and I could try wearing lenses again. I wasn't able to wear a RGP in this eye again as it was too sensitive, but I started piggy backing and am doing really well if I make sure that I don't over wear them.

I tried loads of lenses before I got to piggy backing and it is so worth it in the end. I am not trying to put you off surgery, I just had it done as it was my bad eye anyway and I was desperate as I couldn't see with my good eye. If surgery does work there is a very long recovery time and there is no guarantee that it will work. You can't go back when you have had surgery, so even though it is a pain to keep trying with lenses you can always stop wearing them at any time.

Take it easy and best of luck, love Claire Xxx
Sweet X x X

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Chris_J
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Keratoconus: Yes, I have KC
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Re: Feeling a little blue...

Postby Chris_J » Fri 03 Feb 2012 11:53 am

Hey Jennie,

I was looking on google as it seems my left eye has changed shape again meaning my left lens (RGP) doesn't not fit very well and causes pain and was feeling a little down about it myself as I'm a bit worried the other options might not work and came across this forum.

I know it can be pretty depressing at times (even when the lenses fit but still end up hurting due to grit, dry eyes etc) but stick with it as I am sure they will sort you out. I'm not sure entirely what's going to happen with me as I am pretty much out of RGP lenses it seems so might need to piggy back or get one of those scary looking Scleral lenses (I know everyone says they are more comfortable to wear but they make me cringe!)

I was offered the option of a graft quite a number of years ago, but decided to stick with lenses and after a bit of effort they did manage to come up with a pretty good RGP fit. However it seems that my eye has changed again, but I have to say I'm really glad I didn't have the graft looking back so I'd say don't rush into that one as there is a good chance they might be able to sort something out before going down that line of resolution.

Oh and a quick hello to everyone else!!

Chris

RichardC
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Keratoconus: Yes, I have KC
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Re: Feeling a little blue...

Postby RichardC » Sun 05 Feb 2012 10:43 pm

Hi,

I just registered on the site this evening, so thought I'd look at a few posts.

Reading your post I felt compelled to say a few words.

I'd strongly recommend that as your eyesight is affecting your quality of life, for you to speak to your consultant and discuss options. Treatments such as intacs weren't available when I was young, so I had a full thickness corneal graft when I was 15 and then one on my other eye at the age of 18 (just a few weeks before starting at university). This made a huge difference to both my uncorrected and corrected vision. The biggest negative consequence of having the transplants was just missing a year or so of contact sports after each operation!

Although I damaged my right eye in an accident a few years ago, meaning a replacement cornea and a loss of much vision in that eye, after 22 years my original transplant in my right eye is going strong. I had some refractive surgery on the left cornea after the transplant which means I now even obtain very good vision in that eye with glasses, though for excellent night vision I need to wear a contact lens (to eliminate flaring from oncoming headlights when driving).

Without the transplants my vision would have been severely impaired and I'm sure I would have found it a struggle. 20 or so years on I have 2 degrees, a professional qualification that took 5 years of study and training, can drive any much lead an entirely normal life.

Any treatment usually comes with a risk, but I took the view that surgery was my path to a normal life.

I hope things go well and you get all the info you need to decide what to do next!

Regards,

Richard

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: Feeling a little blue...

Postby Anne Klepacz » Mon 06 Feb 2012 10:49 am

Hello Richard - just wanted to say thank you for your inspiring post and welcome to the forum!
Anne

mr_skyfarmer
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Keratoconus: Yes, I have KC
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Re: Feeling a little blue...

Postby mr_skyfarmer » Mon 06 Feb 2012 9:33 pm

Hi,
I have been using hybrid lenses in both eyes for 6 months. This gives me great vision and allows me to drive.
They have been a nightmare. They were hard to put in (balancing a lens with 3 fingers with eye drops in them, head down looking in a mirror when you can’t see a thing!) I could cry now when I remember back how I clawed at my eyes to get them out. (They were like sink plungers on my eyes)
I have been having allergic reactions to different types of comfort drops (Which is unusual) so had been using a saline solution in the hybrid lens which is not ideal.
My opticians gave me a free sample of Systance Gel Drops which have changed my life. I don’t get any reactions to the drops and as it’s a gel the lens stays lubricated on my eye all day (16 hours) and makes it easier to remove.
The lenses are hard work but worth it for the great vision I get.
Andy


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