UK Keratoconus Self-Help and Support Association

Hi All

Here is my 9 month post graft update.

I am wearing glasses and i have useful vision for the first time in ages, i think i am reading 16:9. I have had them for 2 weeks now and everything is still a little wonky
(i have ASP -5.50 at 120deg) but am doing well with it.

The bad news is that last monday my 'good' eye developed hydrops. It is a much bigger rip than my transplanted cornea had (1 year and 10 days before) and i now have no vision out of that eye . I have been forced to start allowing my grafted eye to take over and be 100% of my sight.
I cant explain or express how totally gutted i am with this, everything was beginning to look up for once then this happened, my specialist told me that i have been extreemly unlucky to have hydrops at all, let alone in both eyes. I am atributing this to a lot of stress and long days at work coupled with the stress of moving house.
I am having to just sit it out for at least the next 2-3 months, and keep putting in my drops before they can look at any solution, but as i am only 9 months post graft in my left, i am unlikely to be looking at the same in my right just yet, more likely i will be put in a lens again. the big bummer is that i was hoping for a partial graft in the right, but now it will have to be another PK

I will let you know how the recovery of this goes.

All the best

Tom

Oh Tom - what a disappointment! And just when everything is going so well with the grafted eye (though I guess it's a blessing that the graft is doing so well and you can now rely on it). Our thoughts are with you - but who knows, perhaps this time you'll be one of the 20% whose vision actually improves after a hydrops? You certainly deserve to have a bit of luck! Take care, and don't overdo things.
Anne

In addition, if the hydrops heals well the scaring may be minimal so a DALK may still be possible, imposible to say until it heals.

Is the vision stable in the grafted eye?

Just wondering if it would be worth exploring a Kersoft silicone hydrogel lens for the grafted eye? My right eye is -7.5 at about 110 degrees 20 years post graft and I get 6/6+ with a Kerasoft lens and the graft is ncie and healthy wearing this lens all my waking hours every day.

Good luck with the continued graft recovery and hope the hydrops heals quickly.

Tom 9 months already!

I am sorry to hear about your Hydrops. Take things easy. Sitting things out is really hard to do, and you have our best wishes as you try.

Do keep us posted.

Andrew

Thanks all for the kind words

I still have the stitches in, they are due to be removed about November time and my contact lens fitter says that the 'bouncy castle effect' in between the stitches is still quite evident and it would be difficult to fit lenses properly until some are removed.
the vision in my grafted eye is quite good in the light, terrible in the dark.
The strangest thing though, when i tilt my head about 5 deg to the left, everything becomes clearer with my glasses on? I cant understand it? my eye and glasses are moving in unison!! Any ideas?

Tom

Tom,

Sounds like rotation of the astigmatism has changed slightly, you can often spot people on the street with astigmatism who don't wear glasses, they tilt their head to one side to see better. May be due to the bouncy castle effect as your eye heals.

Try just rotating the glasses slightly, it was doing this I noticed my vison was changing 5 years ago.

The bouncy castle effect sort of describes what is happening with the demoulding of my right eye coming out of RGP's but the Kerasoft 3 in that eye has the flexibility to move with the cornea to allow it to demould yet I still get excellent vision. In the 4 months I've had the lens the corneal shape has changed three times at least but the original prsecription still gives 6/6+.

Hi all,

So its been 2 months since my Hydrops episode in my non transplanted eye and i finally get to see my specialist on tuesday With any luck i will be back to stereoscopic vision within the month,

Its quite wierd to think, over the last 2 years i have been seeing in Mono the whole time, since my 1st hydrops, having to wear a patch and being known as 'tom the pirate' until the op, 6 months recovery from the op. 1 week of stereo vision when i got my glasses for my grafted eye only to lose it again with hydrops in the other eye going through an awful 2 months where my grafted eye had to suddenly take over, with many trips to the hospital and a lot of eye pain....
I am so looking forward to it all settling down and the stitches coming out in november.

I got really disapointed the other day at the cinema, watching the trailers for 'The Final Destination' in 3D, i have been looking forward to that coming out for ages.... then i realised that i wont be able to watch it yet
We will see..... (no pun intended)

Tom

Sending out healing thoughts your way

Hi Tom

Bummer about the other eye but good news is that your grafted eye seems to be on the road to recovery. Wish mine was, still nowhere near for me unfortunatly. Damn lid margin disease messing everything up!!! I still can;t see a thing out of my grafted eye.

Hope all goes well for your other eye though and keep us updated.

Will do, and i'm sorry that yours is not going so well.
Have you heard from lucy recently? do you know how she is getting on? She stopped 'blogging' so i guess it went ok?

Tom