It’s been almost four months since my corneal transplant operation. Time for an update! Not that there’s a awful lot to tell… So I’ll talk about life with $h1tT? vision instead. The picture above shows my stitched cornea, taken today. I held the camera away from me, listened for it focusing and pressed the button. The wonders of auto-focus. If only it were that simple with eyes!
Since last time, I’ve had several appointments up in Edinburgh, both at the hospital and optician. Thanks again to Malcolm for taking the time out of his working days to drive me.
My new cornea is ‘clear and healing’, which is good. My consultant is keen to remind me that my vision won’t settle until my stitches come out, in 2 years time. So, I’m 4 months down, 20 to go. My quick as a flash arithmetic skills tell me that’s equivalent to a fifth of the way through. (Please let that be right!)
Drops
My drops have been reduced from every two hours to four times a day, and now three times a day. Much more manageable! They are steroid drops, to reduce the chance of rejection, and as anti-inflammatories. From a ‘zero waste’ point of view, I was pleased when I went from single use vials to a wee bottle. But my last prescription came as the vials again. However, I do find them easier to use.

People are very kind in asking, and I’m happy to talk about it to anyone who’ll listen! But it is not easy to know if my vision is better than before. I would love to be able to nod and say ‘yes, it is getting a bit better every day’, but it’s not. It’s better than it was when my eye was full of antibiotic ointment after the op, but progress is immeasurably slow.
I totally understand that it’s difficult to know what to say in this circumstance. It is human nature to wish for the best. But sometimes things aren’t that black and white. (And if you’ve got keratoconus [kc], or had corneal issues, you’ll maybe know that black/ white is actually several shades of overlapping grey!).
A joke in the keratoconus ‘circles’ goes along the lines of, ‘have you seen the moons tonight’?! A distorted cornea causes untold visual trickeries. There are photos of multiple moons which do the rounds (get it?) but I have yet to see one which depicts anything similar to my vision.
I had a wee go at seeing if I could show what my night vision looks like, but this is as close as I could get.
It’s obviously hard to see what I can’t see to try and draw what I can’t see…
Imagine 3 street lights and a car brake lights:

This is a 2d version of a 3d issue – the rays/ antlers/ spider webs/ snowflake patterns come towards you from every angle. This maybe helps visualise the issue with driving just now! (don’t worry, I’m not!) I can appreciate that it might look like pretty fireworks, if there were an ‘off switch’ I’d agree.
Daytime vision is less obviously distorted, but the same thing is obviously happening. With my piggy back lenses in my left (better/ non-transplant) eye my cornea becomes smoother. But whilst less pronounced than without lenses, the distortions still creep in. Especially around edges and hard/ straight lines.
Lenses
I’ve been having problems with my lenses too. That’s really what started me off on this part of life’s rich tapestry… My specialist optician rang my local optician to find out what kind of material my old lenses used to be made of, because I didn’t ever have a problem with my lenses ‘fogging up’ before. I’m onto my second lens with this new (old) material. The first lens was fine, but as I have large pupils, I could see the edges of it. And it slipped off my cornea a couple of times. Is this interesting? Just checking! So, she ordered a slightly larger lens, with a tiny tucky edge. 10 minutes in, and it had fogged up.
Imagine someone has smeared your eyes with vaseline. Or you’re trying to see the world through a steamy shower curtain. Or through an inpenetrable mist. And it hurts. That is maybe a small way to appreciating the experience of a fogged up lens. And when you rely completely, wholly, soley on your lenses to leave the house, you can maybe appreciate the sheer frustration of this ‘game’.
Allergy
Just this past weak, my eye also did an interesting allergy thing. I’ll not submit you to that photo, but my eye ‘reacts’ to my lens(es) being in my eye, and the whole of my inner eye socket area swells up with fluid. It’s not attractive. And it feels horrid too. Clearly, that means a few days without my lenses to let it settle down again.
On a good day, I manage up to 4 hours with my piggy backs in. If I’m out morning and night, I have to plan if I wear them for a couple of hours in the morning so that I can wear them at night. Or rearrange things, and stay in all day so that I can see when I’m out later on.
Coping Strategies
Frustration doesn’t really go there. With a lens in my better eye, I feel vaguely capable. I can see better to see people, and it’s people that matter. My nearest and dearest are well versed in letting me know that e.g. that’s not a dog it’s a bag, or bring something within sniffing range to read, or having me follow half a step behind, cos I can’t see where I’m going.
I’m told I have excellent coping strategies. This is both a blessing and a bad disguise.
People can’t necessarily tell that I can’t see properly. I can touch type. I work out my surroundings quickly. And recognise voices, listening carefully. I remember what’s where (or supposed to be there). Using touch is another way of coping with what you can’t see. Technology helps too. There’s more than just large print books these days. I’ll certainly put on a good act too. The thought of being seen as ‘less able’ is incongruous to my fierce sense of independence, even if I know that’s really just a thin veil. Come to terms with it? No thank you!
Someone did say that they imagine your other senses become like super powers to make up for the missing sense. But I’d rather have my sight back.
Look into my eye (long overdue a picture):

Leaving the house lens-less and unsupervised is a no. Nope, not a good idea. Not at all. Never.
Apart from the obvious safety issues around trip hazards and roads, there’s the hideousness of recognition. Or lack of. A shout out of thanks to the people who offer lifts and come and get me to get me out!
In context, the print studio on a Wednesday night, I know who is there (there’s four of us), I know where they sit, the space is small enough that I can tell who is who. (And obviously there’s a lot of chat going on as well as all the hard work, so that helps). Though the lack of being able to see faces, gestures and lip-reading can also lead to a difficulty in hearing. Just as smell and taste are closely linked, so are seeing and hearing. And I’m not joking, seeing and thinking! My brain is so taken up by trying to work out this crazy world of distortions, there’s sometimes little left for actual thought.
Multiplication
I can see close-up better. Not well, but better. If I look at the letter Y on my laptop keypad for example, I can count at least 6 Ys. If I try to use a ruler, I can’t see which edge of the ruler to use, or which line to mark it up to, as there are many.
Malcolm looked at one of my prints on his big computer screen and asked how I’d managed to achieve the cool 3d effect… I hadn’t, but hadn’t noticed. The plate must have slipped slightly in the press, and printed a second image. Multiply this by 3 or 5 or 7, and you have something close to my vision!
Look from right to left:

It can hurt my brain trying to work it all out.
It’s difficult to explain, but with my nose closer to the table, there is less information for my eye to take in. And a bit like being able to touch type, there is also a certain retained ability in being able to draw. If I let myself think about it too much, I’d cry. There’s nothing more I’d love than to be able to see clearly to draw. A sharp edge. A single line. Clarity, definition, detail.
About time for some pretty pictures…
I get a topography at every hospital appointment. I’ve shared them before – they are images taken by a pentacam machine which show things like the curvature, thickness (or thinness – all important with kc, as it’s the thinning cornea that causes the distortions). I’ve been taking photos.
Here is a typography of a ‘normal’ eye for comparison (did you spot the typo?!):

Nice, even colours, all looking consistent and even and regular!
And here’s mine (from August 2019):

And a wee (spot the difference/ entry level) comparison – from November 2018 on the left, and September 2019 right:

That’s advanced kc, pre transplant on the left, and new cornea, post transplant on the right.
I really don’t understand any of it, but I have an inkling that it makes my tricky vision just now a wee bit more understandable. Little as that makes sense!
And just because it never gets a look in (hahah) these days, even though it is doing all the hard work, lets hear it for the magnificent, ‘good eye’ Ms KC Lefty!

I spoke to an orthoptist (socially) recently. She treats children (on the whole) with squints, wobbly and lazy eyes. She was very interested in my kc, and transplant, and it was good chatting with someone who knew a bit of what I was talking about! She did, however, tell me that the vision in my right (transplant) eye can’t get any better than the vision I had at the age of 7. Up until then, your eye is developing. If it didn’t reach full potential by then, it is too late (to put it bluntly). I can’t pretend that my wee heart didn’t sink. My right eye has always given way to my left, never been as strong, generally lacking. My twin brother Keith has the same issue with a very weak eye (though he doesn’t have kc).
Super specs
She actively advises parents to get their children glasses if she detects a slight imbalance with a child’s vision (amblyopia). There are tests at nursery school nowadays. Ronan must have had a similar eye test, because he wore glasses when he was wee until our optician told him (when he was seven or eight) that he didn’t need them any more – his sight was perfect!
Look after your eyes everyone – they’re the only ones you have (and someone might just need them when you’re gone!).