My Cornea Transplant - 2 Year Update

Close up photo on eye with stitches 2 years after transplant and remains of subconjunctival haemorrhage

An Update 2 Years On – who’d’ve thought?!

Now 2 years to the day following my transplant – 21st June 2021! So difficult to say whether it’s been a quick 2 years, or the longest 2 years of my life! Quite possibly both!!

There’s several things of note/ potential interest to mention…

My eye – still healthy and well!

All is good in that dept. I have been lucky (though have taken every drop, every day as prescribed, which doesn’t rule out rejection, but means there’s nothing more I could do).

My vision

The secondary thing to eye health, but to me, wanting to see the world and draw it in teensy tiny detail, just about most important. And the reason for embarking on this ‘adventure’!

Due to the issues with my contact lenses, which started this whole thing off, length of weartime remains an unpredictable mystery due to:

Fogging – the lens becoming opaque – like looking through Vaseline at random times – the only solution to remove the lens and try again another day (no amount of cleaning works)
Comfort – after anything between 5 minutes and 4 hours (max), my eye just screams at me to remove the foreign object. That is the only solution, though occasionally removing and filling with lubricating drops has given me a little more time.
But this can lead to another ‘reaction’:
‘Allergy’ – my eye can become ‘itchy’ or ‘irritated’. The inner corner (beside my nose) swells up spectacularly with fluid – another not-so-attractive one of my looks… No idea what triggers this as it can be inside or out, and at any time of year. The only solution is to remove the lens for a couple of days until my eye begins to feel “normal” again.

No improvements really over the six years with my wear time, which still peaks at 4 hours on an exceptionally good day. There are times when the disappointment can be so dire that I don’t put my lenses in in the first place. And I just continue on with my clever brain telling me things are okay as they are.

An observation

Without my lenses in, which is most of the time, my brain adjusts and tells me I can see okay. Clearly this is flawed as I can see many versions of everything, can’t see detail in anything, can’t recognise people I know (v. embarrassing) and need large fonts that folk on the back of the bus can read etc. etc.

Anyway, my brain is good at preserving my sanity. Until I put my lenses in.

Without lenses in, my transplant eye is ‘better’ at seeing distant things than my non-transplant eye. E.g. It can make out that there are individual sandstone blocks that make up the wall opposite (albeit it sees 3 times as many as in reality). When I have my lenses in (a soft and a hard rgp both in one eye – ‘piggy backing’), the improvement in vision isn’t perfect – there are still distortions – but it is comparatively brilliant!

Smoke Screen

With my lenses in, my brain now makes a huge shift in what is ‘normal’! And now, if I close that ‘good’ eye, the vision in my transplant eye (which had been ‘better’) is truly awful!! How on earth I can think that that vision is better is beyond my comprehension, as, having experienced clearer vision with my lenses in, it is like somebody has turned the clarity switch to ‘off’! It is like looking through a scratchy, steamed up shower screen that’s been shattered into fragments and put back together again. With duct tape! A distorted kind of reality.

I don’t wear my lenses when it’s dark. I have big pupils which expand even further, and make lens wearing very uncomfortable. It could be problematic even before all these shenanigans.

Anyway, it is what it is, and I just have to make the most of it – carefully choosing when to wear my lenses, and praying that they behave.

Work/Career Break

My career break in teaching comes to an end this year. A 5 year career break – the only viable option when we met with the High Up Folk in Education 6 years ago… Whilst nobody said it was going to be easy, I don’t think anyone would have anticipated I wouldn’t be in a position to come back to teaching, if I wanted, 5 years on.

I instigated talks with the union who put into motion talks with pensions, HR and an online meeting with the High Up Folk (who were lovely)! I’ve been assessed by Occupational Health who have reported (I really can’t see to teach a class full of children – see above) and suggested I ring the RNIB. And now I’m just waiting to hear back officially. Not sure what is going to happen, nor what I’m going to do.

The typical thing is that my fall-back is Art, but there is just a small problem with that… And The Frustration (with neither being able to see the thing I’m drawing, nor work out which line is the actual line) is real. Thus there have been scant postings to My Portfolio page.

RNIB

The Occ Health nurse suggested I call the RNIB Sight Loss Advice Service for advice, help and info on services, groups, guidance and support. I did it before I could think twice, and was amazed by the amount of different ways in which they can help. Why I didn’t think to call sooner? I’ll never know. They have experts in every corner of every field a visual impairment might affect. And gadgets galore for the practical things too.

Delightful photos

At this stage, I’ll give you a wee break with a couple of attractive piccies! I had a subconjunctival haemorrhage – my second since the transplant – which started 8 days ago. It is a bit of an alarming name for something that also looks quite alarming, but is quite harmless. A small bleed between the conjunctiva and sclera. I think that the steroid drops can be to blame, but obviously stopping rejection is the priority. My other one (photo on left) faded away within a few days. This one has left a lingering mark next to my cornea (as witnessed in main pic).

My transplant eye also looks smaller than my other eye now.

Excellent.

I’ll spare you the photographic evidence, though it’s no worse than anything I’ve shared before! (Have I already ruined my chances of supermodeldom?) I think it is in part because the transplanted cornea is behaving better than my ‘bulging’ keratoconus cornea – so a bit of an optical illusion, but also because my eyelid isn’t opening as wide. I believe this can be caused by the implements used to hold your eyelids open during procedures/ operations. If it gets to the stage that my eyelid is affecting my vision more than it is, there is a procedure that can be done to correct it. We’ll see if/ how I feel about asking. I did open my eye as wide as I could for these photos!

“Cheese”!!

Getting in Touch with your Donor Family

Having written my original Cornea Transplant blog, I have had a fair few folk write me lovely emails, and that has been really great! A real surprise and most lovely connections! Most recently, I have been conversing with a recent transplantee who has managed to find out who to get in touch with to send a thank you letter to our donors!

This is huge.

After my transplant, I decided to wait until my vision improved more, so I could write with more positivity about the result. Then Covid happened, and everything shut down. Now, with things opening up again, my ‘pen pal’ has found out how we go about it! I have asked Joanne Galloway, who can facilitate sending a thank you letter/card to the donor family, and she is more than happy for her details and this info. to be shared online:

“When you send your thank you letter/card, it is important that you do not put anything in it that will identify who you are. This is to protect both yourself and the donor family.

There are a few steps that need to be followed in order for me to send your letter/card onto the family:

Please don’t add your name, address or the hospital you had your transplant. If it contains this information I would unfortunately be unable to send it onto the donor’s family.

Please put your letter/card in an envelope addressed to ‘Donor Family.’ Please do not seal this envelope.

Write a separate letter with your name and transplant details on it in order for me to know who the letter is linked to.

Put both the letter with your details and the letter/card for the family inside another envelope.

Send it to myself at the following address:

Jo Galloway
Office Manager
Tissue and Eye Services
NHS Blood and Transplant
14 Estuary Banks
Liverpool
L24 8RB

Email: [email protected]

Phone: 07932 315 795″

In emailing, Jo also mentioned that she can find out the gender and age of the donor.
I have passed on the details she needs, and am awaiting her response. This is not something to be taken lightly, and it has been quite a nervous wait. I am just about calming down from jumping at every email alert.

Fame, at last!

Along with some lovely conversations, I have had a recent offer to appear on the telly!! I politely declined, but it was quite a surprise! I’m hoping that they will find someone:

who can make it, and
who is confident in front of the camera, and
has a really positive outcome to talk about!

It is so important that there are corneas for everyone who needs one. Hopefully the 2019 ‘opt out‘ system in Scotland will help a bit in this respect. I know that Coronavirus and Brexit have both put a huge strain on the system for those who desperately need a new cornea. Awareness through a national TV programme is to be applauded.

What next?

At my last appointment, around the 18 month mark, my Dr said that he would like to see more scar tissue before he takes my ziggy zag stitch out… He doesn’t want it to (and I quote), “pop open”. Whilst I am absolutely dreading getting my stitch taken out – just take a moment to imagine… it will mean that, once healed, my vision will likely change (hope for the better) and we can start the process of fitting for a contact lens!
So, I don’t have another appointment until late August, when my transplant will be 26 months old.