Herein lies a wee bit of a story about my personal experience of a full corneal transplant [penetrating keratoplasty (pk)]. I wouldn’t call it a diary exactly, just a note of notes – the ‘edited highlights’ – in date order with plenty of photos (nothing gory or gooey or with blood – feel free to just look at the pictures!).
My op was through our brilliant NHS at the Princess Alexandra Eye Pavilion in Edinburgh, UK. A personal account – every eye is different! Expect expectations, some preparations and thoughts from before the op; and then realisations… the first few weeks and the beginnings of recovery and healing after my corneal transplant!
I DID IT!
I have no memory whatsoever of this first photo being taken, still in my surgery best – that’s my ‘being brave’ face – the second pic looks a wee bit happier!
Being the very thing I’ve been actively avoiding for 4 ½ years, this corneal transplant has quite probably taken on epic proportions.
My new look – no make up, but making up for it with my stylish safety goggles…
A corneal transplant
– irreversible, the final option. For a keratoconus (kc) eye anyway. I knew it was a last resort after trying every contact lens possible. ‘Exhaust all the possibilities’ – yup, did that. My keratoconus and contact lens intolerance became intolerable – there was nothing left to try. I wrote about that here.
I was told in late December that the waiting list would be around 7 or 8 months, that would mean July or August. I got my head around that okay – it was still far enough away. Until I got the letter telling me it would be in June!
There were tears!
I can’t exactly explain it – fear certainly, and it being too soon, that too. I wasn’t ready yet, it wasn’t supposed to happen now.
It didn’t last too long, my tantrum, and I accepted that it would be sooner than I’d thought.
It was to be the 13th of June. I’m not superstitious, normally! But it just didn’t ‘feel right’. I persuaded myself that it would be fine. However, having come to grips with it all, a few days later I got a 2nd letter. My date had been changed to the 21st! I was much happier – a ‘better’ number, an extra week to prepare!
‘Funny’ how some things stay with you – the words ‘aqueous humour’ and vitreous humour’ are familiar, but I haven’t heard them since 4th year biology!
The calm
At some point between getting the date for my op and a week or two beforehand, I came to the actual understanding that worrying is pointless. A momentous moment! I have control of my thoughts. It is up to me to decide what I spend my time and energy thinking about. Time moves on regardless, so you might as well make the most of it.
I have several theories on this (a few have been suggested to me too):
- I’ve already spent the past 4½ years worrying – there’s no need to worry anymore. I’ve got it all over and done with – there is no worry left!
- What will be will be, and no amount of worry in advance will change that.
- An affirmation – ‘there are no mistakes’. A bit of an ‘it’s meant to be’ type of idea (but it worked).
- I need to create a secure, welcoming environment for this new cornea – the stranger in the room, the outsider, the extra/ different/ other. This gift someone has given deserves a good second start.
Preparations began…
I started to talk to my eye, telling it what was going to happen, inviting it to welcome this new cornea.
Within the ‘safety zone’ of home, I hoovered and dusted, and did it again! The grass was shorn, some weeding was performed and the huge lilac was reduced in size. All strenuous things I’ll be banned from for 6 weeks after. I wanted to go through my wardrobe as well as sort through ‘stuff’, but those jobs still remain on the perpetual list!
I made lists within lists of things to buy (cotton pads, cotton buds, peaked caps, paper hankies, micropore tape, safety goggles). Disposable things that go against a ‘zero waste’ lifestyle, but things that are necessary for the temporary sterile environment needed for a newly transplanted cornea.
My tinned foods stocks replenished, the freezer filled with batched cooking. I dyed my hair (disaster – see pics!) and washed every bit of laundry and bedding I could lay my hands on.
I made up a list of preparations/ to do in advance and another of things to buy/ gather beforehand – see lnks below:
>>>Click here to read >>Cornea Transplant Preparations<<<
>>>Click here >>To buy before Corneal Transplant<<<
The purpose and activity helped the time pass, I’m sure. I packed and repacked my bags. [I never did need my enormous fluffy winter dressing gown… (a dressing gown, not necessarily large and fluffy, was on the hospital list)]
My wee Peppa Pig bag, for drops, eye shield, tape, pills, mirror, hankies, goggles – everything a cornea transplant patient might need!
What to expect?
Though I’ve belonged to a couple of transplant groups online, I really wasn’t sure what to expect for me. Every experience is as different as every eye, which differs with each patient and with every surgeon. Each have their differing ways of doing things. And responses which are different too. I was certainly aware of everything that could go wrong.
It dawned on me then that I hadn’t actually considered that things might, in fact, go right! So, there was my new muse…
This all meant that, by the time ‘the day before’ came along, I was feeling unrecognisably relaxed…
Thursday 20 June 2019 – the night before… [T-Day minus 1]
Still remarkably calm. Just the odd ‘butterflies in my tummy’ feeling. I am delighted to have (finally, at last, why did it take so long?) reached the realisation, total understanding and honest state of mind that worry is completely pointless!
I had been using ‘visualisation’ a lot – imagining this new cornea as a young child, or lost puppy coming into my house – what kind of welcome did it deserve? A nervous, uncertain, anxiety ridden old woman shooing it away? Or a confident, relaxed, warm and open-armed woman welcoming it in?
All packed. Got everything on the list. Questions asked. New ones in phone. [Edit to add: forgot to ask them. “Can I keep my old cornea please?”]
We had parked 20 or so mins walk away from the hospital in Freddie VW. Stayed up too late responding to all the lovely well wishes (but this was good, as there was no time to revisit, or question, my worry).
Rosie doggo remained blissfully oblivious, the epitome of ‘why worry?’!
Friday 21st June 2019 – Notes – Day 1
Woke up around 5am… Bit butterfly-y, had to stop myself eating or drinking anything!
Malcolm took Rosie out, then we left for the Eye Pavilion… Got everything? Tick.
I kept closing my left eye on the walk, trying to remember just how much the vision in my to-be-grafted right eye is really bad. So much overlapping, impossible to see clearly, kaleidoscope kc vision – feels nauseating.
7.30am
I am first on the list – phew! (I don’t have to wait a long time trying not to fret. And I get to eat something soon! Not necessarily in that order…)
Form filling with a nurse, and then taken to my own wee room, into my hospital gown (such a sophisticated look), toilet, brief chat with Dr, pupil constricting drops in, surgical stockings on… I had a longer talk with the anaesthetist who was really quite concerned to hear all about my haemangioblastoma brain tumour op (20 years ago).
I completely forgot about my questions.
Dr marked my head above my right eye, I took the obligatory selfie!
A most unflattering photograph, X marks the spot – the right (right) eye!
8.30am
Was escorted up to the surgical ward and into a room where the anaesthetist and 2 assistants were waiting.
The anaesthetist was very concerned to take time trying out different pillows as don’t want my brain being pressed or compressed (through the hole in my skull).
Hairband escapade
They thought my hair was in dreadlocks, as there was so much of it! (It was all newly washed and brushed aswell!). The anaesthetist didn’t want my hair in a bunch, it would have to go loose in the surgical cap. After much faffing and untangling, they cut the hairband out (at my suggestion)! It was funny though, because it didn’t all fit in the cap, which kept sliding off. Then they struggled getting lines in. We were already running late. Bit disappointed I don’t remember falling asleep… That’s my favourite bit!
The nurse who came to collect me afterwards later told me that she’d come for me at 11.30am – they’d kept me for a long time. Not sure why – I don’t remember any of that bit. [This was one of my questions for my post op check-up, but one of quite a few questions I wasn’t ‘brave’ enough to ask] I do remember asking if they had managed a partial graft, or if I’d had the full transplant – it had been the full penetrating keratoplasty.
On one of my (frequent) visits to the toilet, I took a sideways peek through the shield at my new cornea in the mirror. It was a bright and pale turquoise colour! Quite unexpected! The pupil was tiny due to constricting drops….
Post op exam
Dr said it had gone well. Anaesthetic drops put in – absolute bliss – no pain (it wore off after 20 mins though!).
Another Dr was in the room too (hand over time). After looking at my eye “It’s hazy, but that’s to be expected”, the new Dr was asked “Have you seen a full graft before”?
“No”
Trying not to feel too concerned…
Looking at eye chart, I can make out the top ‘A’ and hazard a guess at maybe an O on the line below. One of the round letters anyway!
Excruciating pain when I ‘hard blink’ – e.g. like a great white shark going in for the kill = me eating my sandwich. I had no idea you blink like that when eating.
Looking up fast with my right eye closed = unbelievable pain. Then v. sore for a good 90 mins later.
“Welcome new cornea”… Overwhelmed thinking of the donor and their family.
Malcolm came to visit in the afternoon, I burst into tears! I remember telling him it was really sore, but not an awful lot after that… I think he stayed until the bitter end of the 2 hour slot. True love!
I have the whole ward to myself! I am the only patient staying overnight! This actually means I have the whole hospital to myself!!
I got moved back to a wee en-suite room anyway, it looks out over the art college, and Simpsons – where Ronan was born – would have been! It all seemed meaningful at the time. I was aware that my heid was ‘in the clouds’ due to the anaesthetic!
The view from my own private suite, in my own ward, in my own hospital for the night! I’ve forgotten how, but the significance of the solstice sunshine reflecting into my room was substantially significant!
Dates
As did the date, along with a few other significant dates (I’d like a few moments back in that dreamy mind-set!):
- 21st June – Cornea transplant on the summer solstice
- 5th November – Always remember we adopted Rosie doggo
- 11/11/12 – met Malcolm for the very first time
- 25th December – Ronan’s birthday
- 24th December – my mum’s birthday
Malcolm tells me that I called him and talked at him for and hour and a half in the evening…
Very sore throat – forgot this happens with a general anaesthetic. Add ‘Tunes’ to the list! Nothing to do with too much talking.
Day 2 – Sat 22nd June
Overnight managed to sleep for 30 mins max…
Remember thoughts like, ‘Talk to cornea like you would a new born baby’/ hearing a blackbird singing outside – its own wee dawn chorus, ask my new cornea to ‘listen” and ‘I feel ‘oot ma face’!’
Trying not to look too ‘oot ma face’! (Transplant eye on the left!)
There were mild hallucinations through the night too, to keep things interesting! Ants on the floor (HD and in 3d. I haven’t seen that well in years!). Then maggots behind my eyelids. Why can’t it be beautiful butterflies and fairies?!!
Apparently insects are a common theme with opiates. Those painkillers were stopped… (though it could also be anaesthetic related).
Vision – very foggy, only dark/ light and shapes
Saw Dr to be discharged. She said everything looked fine. Pain – she suggested that my lid was catching on the ‘cut bit’ of my cornea. And yes, it will be vvv sore. She laughed heartily when I told her my Dr had said it might just feel ‘slightly scratchy’!
These were the comprehendible bits of my notes!
Water in sink, pink and yellow shimmering ‘marbled’ patterns. Lovely!
After lunch, Malcolm came, head home. I have no memory of the 2 hour journey, bar a snapshot of me sitting in the Co-op carpark in Biggar. I remember the windscreen looked all condensation-y and the blur of our orange French marigolds was a lovely contrast to the hazy green/blue.
Hallucinations – sparkling glitter on my bathroom floor – moving and shimmering. Much better than insects! And faint, funky 1970s patterns on my bedroom wall, ever growing…
Vision – terrible!! Much worse than before! Very foggy, completely blurry, light bits/ dark bits/ colour (marigolds).
I don’t remember much about the first few days at home, bar the exhaustion of the exertion of having to get up to go to the loo.
Last drops 9pm (tick).
Day 3 – Sun 23rd June
Slept like a sunken log. 1st drops 9am. I forgot I’d need to clean my eye – bowl, boiled water, cotton pads. Cleaned up nicely, very very gently as seriously sore. Not really messy – just oily from ointment. I was expecting a lot worse! Malcolm took amazing photos –you can see my stitches!!!
The clearest picture of my new cornea from day 3 – you can clearly see it – and the continuous ‘zig zag’ running stitch. Quite incredible. The surface does look quite translucent and ‘rough’ – no wonder my vision isn’t great! And, my eyes have never really gone ‘red’!
2 hours is not long enough to sleep between drops, after replying to messages etc.
Still feel ‘out of it’. Less weak and feeble, but quite wobbly. Just a couple wee ‘ants’ type hallucinations – why are they always on the bathroom floor?
Day 4 – Mon 24th June
Slept fitfully and woke at 6am.
Boil kettle, clean eye at 8.45am then full selection of all meds [dexamethasone steroid drops every 2 hours now, wait 15 mins then attempt to apply ointment. That is not easy! Plus pills (last pressure pill taken)].
Eye feels okay.
Still vvv sore with big blinks. Otherwise definitely bearable, but with the odd raw twinge, and feeling better when closed/ ointmented/ not open too long.
Not light sensitive (though not really looked at bright light).
Malcolm took pics of smooth (flat) curve of cornea (right photo below), to compare with pointy kc cone eye from before (on the left)!
Left photo shows before op keratoconus coney eye. Right photo shows after corneal transplant, rounded profile. It doesn’t look like my eye!
Still feel a bit weak, fragile and ‘woozy’. Tried an epic excursion to the kitchen. Got there, had to crawl back to bed again!
Vision before op was awful with multiples of everything, but it was clear. This now is not clear at all. Maybe better now (11.30am) than first thing?
Day 5 – Tues 25th June [Ronan’s 25½ birthday!]
I think my eye looks sore here – my own cornea looks swollen – the light catches where the stitches pull it in… ouch.
Woke at 6 again, OK sleep.
Cleanse eye. Vision less blurry without ointment in eye! Makes sense!
First night without paracetamol/ ibuprofen, feels okay.
Feel shattered, weak and a bit wobbly so staying in bed. Getting hang of drops. Wearing safety specs instead of shield in day. Feels risky to go without protection!
New pain (to add to shark attack/ looking up and big blink) –
Yawning…
Yawning makes your eyes do a different kind of blink. The kind of blink that really, really hurts…
It feels like I’m stopping healing – like picking a scab – every time I do a yawn blink.
Ouch.
At least frequent visits to the loo are keeping my circulation going (how long are you supposed to wear your surgical stockings for?!).
Had a bath, a shallow, careful one – wore goggles.
First sneeze. Hurt a lot…
Day 7 – Wednesday 26th June
‘Garden ready’ with my shades and shady peak…
First expedition outside and sit on the bench. gorgeous day. Opened back door. Air smelled laden with pollen, like breathing in essence of flower! Then hit by wild strawberry scent!!
Wow, wow, wow!
Can make out colours of flowers and shapes of plants with right eye. No detail, but definitely some ghosting…
Wondering about continuous/running/zig zag stitch – does it stay in permanently?
[Edit: It will be removed after 2 years]
[Edit again – having to wait another 6 months after my 2 year check, as there is not enough convincing scar tissue to remove the stitches – we don’t want it to ‘open up’…]
Healing takes time. All about the healing. Rest rest rest, non negotiable!
It feels like I must get contact lens out my eye. Like a badly fitting contact lens/ lens that’s too loose.
Thinking about writing a letter to the donor bank/ Organ Donation Scotland – a Thank You letter.
Stairs are an undertaking – one step at a time, very carefully, holding on.
Sitting in garden, realise I’m ‘giving this cornea another chance to see’ – beautiful colours, lovely things to look at. An opportunity lies ahead…
Looking at the garden through my new eye, I may only see colours and shapes, but I can smell everything!
Day 7 – Thursday 27th June 2019
Organ donation – biggest gift.
Realise that just as I decipher letters on the chart, I also recognise words by their shapes e.g. ‘bed’, ‘elephant’, ‘eye’ – doesn’t mean I can see/read the individual letters, but I recognise the ‘outline’ of the word and the shape it makes on the page.
Feels fine, just like got a lens in. Bit achey, occasional sting (drops) but totally manageable.
Just. Don’t. Sneeze!
Someone else’s cornea. What have they seen? What will we see now? Look for good things.
What kind of needle is used to make such tiny stitches? Are they internal? How do they do that?!!
After 4 1/2 years of avoiding it, I actually had a corneal transplant!
Lying out in garden in the shade. Can see gulls in the thermals (with better eye (not ‘good’ eye). Breeze keeping heat off. Wafting smells, wild strawberries, flowers, fresh air. Gorgeous.
Beginning to feel like healing might be starting… Not as ‘raw’ feeling. Less painful with every blink. In fact I almost don’t notice it! Feels a bit burny dry but not like I’ve got a loose lens in eye anymore.
Have stifled sneezes so far (rub nose hard) and it doesn’t feel painful.
Evening (between 7pm and 9pm drops ointment) eye definitely feels… sore. Like I need to get this contact lens out again. Dry. Uncomfortable. Bit head-achey.
Had my 2nd bath! (no judgement!)
A week ago today we were settling down in the camper van on a side street in Edinburgh…
Definitely felt less weak and feeble today, and a bit ‘livelier’… Haven’t come back to bed, though did spend most of the day lying down outside in the shade and fresh air…
Did I mention I yawned? Ffs. Agony…
Day 8 – 1 week in – 28th June 2019
Exactly one week post-transplant (9.46 am, probably would’ve been in operation as I write!)
If I felt drunk last week, today I feel a wee bit tiddly. So much better (didn’t go back to bed yesterday until bed-time!) but still on the ‘taking it easy, just lie down in the garden today’ front.
Malcolm suggested a wee drive to Glencaple. Will see…
Eye looks a wee bit ‘concave’, when taking photos, the top stitches seem to bend in towards the graft, a bit like an upside down cake mould. Will ask Malcolm to have a look/ take pics from the side…
Day 8 – one week old – Corneal transplant 28th June 2019
Prior to putting in antibiotic ointment, my vision wasn’t too bad, considering. Difficult to tell, still got ghosting, but not the same dizzy-making multiple mash as previous vision. Fingers crossed things improve, though I know it’s all about the healing.
Not that it was at any point unbearable (though I’ve experienced an awful lot worse I am glad to be this side of last week!)
Lying out in garden shade again. Gorgeous. I wish I could capture and share the scent of warm ripe wild strawberries in the air!
Malcolm has been making some amazing food – lots of fruit and veg for good health and healing…
Super salads for optimal goodness, certainly good for me – full flavoured food-ness!
From Manchester Eye Bank website
“The only substitute for a human cornea is another human cornea donated at death.”
Out and About
The essential corneal transplant/ kc patient kit – including safety goggles, eye shield, sunglasses, magnifying mirror, drops, more drops, solutions, lenses, peaked cap tape and bags – don’t leave home without it! [Extra points if you spotted Bernard (optional)!]
Chummed Malcolm to Glencaple in the car. Walked from car park, but felt v odd indeed. Stayed in car for Rosie walk, felt wabbit, ate biscuits, bit better. Now a bit shattered…
I read that it can take a good 4 to 6 weeks to feel better.
No photophobia (unless I look directly at a bright light).
So difficult to gauge everything, having had such a hideous experience with a brain tumour, where is the benchmark/ line of ‘normal’ pain tolerance?
My surgeon told me that this is a major surgery, but compared to the haemangioblastoma experience, it has been a breeze (so far). Compared to an ordinary day, its not wonderful by any stretch of the imagination, but then again what is a ‘normal’ day? I don’t think I’ve had one in the 4 years and 3 months since my contact lens intolerance issues started!
My ‘good eye’ is really just my ‘better eye’. It still has multiple distortions, I still can’t see clearly, though I can make out text on my phone etc. (font set to large, and use the magnifier and tripple tap settings).
I can’t see to read a thing with my new cornea, though distance is better than it was this time last week. Though I do think I was trying to look through the antibiotic ointment!
Day 9 – 29th June 2019
Not a kerato-coney profile!
Another 4am wake up (3rd or 4th in a row)…
First day without anti-bacterial ointment, so just dexamethasone drops every 2 hours, and ibuprofen every 4. See how it goes, I found the ointment quite soothing. Hope my eye feels fine without it.
Reminder to wear my safety goggles outside etc. Inthe garden earlier I didn’t realise I was so close to the hedge and the breeze from a leaf that swished past my new cornea was sore. Ouch… Just a wee bit watery (and sore) – a bit like a sneeze sore. Fine again now.
Took photos from the side to recreate the first photo from last week – my new cornea looks so much smoother and clearer! My vision is less like a total blur, but still not great.
Transplant day 3 and day 9 comparison – day 9 looks much clearer and smoother – shiny!
Day 10 – 30 June 2019
Woke up feeling better than I’ve felt since the op. Not waking at 4am may have helped!
Eye felt really good. Bathed and no gunk, no redness, no pain, no nothing. Very pleased. I used the hot cotton wool pad as a gentle ‘compress’ to soften meibum (oils), in case they needed it, and because it felt okay.
Had a fabulous, very gentle walk around Kirkonnell Flow – took some wildflower photos, ate blaeberries [thanks to Malcolm – no bending down for me] and generally enjoyed being out in the fresh air.
Felt really good!
A lovely gentle walk at Kirkonnell Flow
Yawned later on – it hurt a lot… Who knew that your eye had so many different involuntary reflex ‘blinks’?!
Eye a little tired and a wee bit irritable feeling, but nothing more. Vision still pants, but surprised I don’t feel more nauseous with the different vision to before. My poor wee brain!
…left eye has always been dominant, right eye has never really had a ‘look in’ – hah!
Wrote questions for Dr tomorrow, at follow up appt. May be brave enough to ask some of them…
Day 11 – 1st July 2018
Follow up appointment at the Eye Pavilion in Edinburgh
Could cry. Didn’t ask most of my questions! All well though – haze clearing through layers, wrinkles will smooth off (shame the same can’t be said for the non-optical ones…).
Vision 6/60 with 6/12 pinholes, Pressure 6 (right), 8 (left)
Steroid drops reduced to 4x a day (from every 2 hours). Also prescribed lubricating drops – if/ when required
“Must not stop taking steroid drops” (I wasn’t going to!) – “the cornea will reject” if I do…
Mustn’t get water in the eye (I know!).
[See this site if you want to know why contact lenses and water don’t mix.]
Stitch will come out after 2 years.
Cameron Optometry appointment, a quick dash across town to get there for 12pm
Heather very interested to hear everything! Said it will all start ‘knitting together’ soon. Very impressed by Dr Tint’s stitching, such a neat, precise job.
Hopes after next appt, we can start to ‘play with’ finding a prescription for glasses that might begin to help with vision…
Glasses! Now that IS exciting!! [Keratoconus eyes just can’t be corrected with glasses. We need to wear hard contact lenses to create a smooth, curved cornea.]
Looking at an appt in September-ish (4 months post op).
Cornea looking (and feeling) so much better!
Day 12 – Tuesday 2nd July
A bit of a nothing-y day.
Nothing’s changed really, I still can’t go outside without my lenses in, unsupervised. I still can only wear them for a limited time. Just now, my vision is even worse as only got one eye with corrected vision.
Vision is at least as bad as it was with my new cornea (but it’s doing very well with the healing, and that’s what’s important at this stage!).
In fact I’d say my vision is worse, I can’t focus at all on anything. With my old cornea, I could focus on close up things as long as they were about an inch or two from my eye. I’m not joking! That’s where my vision became nice and clear. I could see the tippity end of my nose with pretty crisp clarity!
We took Rosie for theee best (gentle) walk in the summer fields. Lenses (both for left eye) in, sunglasses on (and safety specs when it got darker). A beautiful, still evening watching the sun go down, the colours change, the intoxicating scent of the honeysuckle, the wild flowers in the organic fields, the scenery…
All was well.
Day 13 – Wednesday 3rd July
Washed my hair for the first time since op! Very important not to get water near the eye – bacteria and acanthamoeba keratitis live in water – so wore old swimming goggles (probably Ronan’s ones from when he was 6, as they were too tight!). I was terrified I might ‘ping’ them on my eye, so it was quite a stressful time. I was also worried that they might cause a pressure build up in my eye, so kept removing them between rinses, then got paranoid about seeping water, so quickly put them back on again!
Possibly my worst hair wash ever (in the kitchen sink), but it’s done!
Day 14 – Thursday 4th July
(Malcolm away to Dundee for Becky’s graduation)
It will be 2 weeks tomorrow since my transplant. I’ve spoken to it every day. Amazing to think about this part of someone else who has died, continuing to live! I don’t know enough about DNA to understand it really, but it is quite phenomenal when you think about it. This little piece of someone else is giving me the chance to see properly again. I wonder if someone else is benefiting from the other eye, and other organ donations… How many lives can one body save?
I remember watching Esther Rantzen’s That’s Life programme in the early 1980s with the wee boy Ben Hardwick who had a liver transplant, he was the youngest person to have a liver transplant in the UK at that time, and it was mind blowing. That wasn’t so very long ago really…
It still takes up most of my awareness. I am very careful if I don’t have my goggles on. I’ve stifled (nearly) every sneeze. I yawn carefully and blink gently. I’m hoping this will pass with time, whilst being concerned that I don’t become complacent. Eye rubbing is very bad. At the moment I can barely touch my top lid, it’s incredibly sensitive and painful, so I’m hoping I won’t forget… Will be wearing the eye shield at night for some time to come!
3 weeks in
There’s not an awful lot to report. My vision hasn’t really improved since last week, but I’m not concerned at this early stage. It’s the healing that matters just now.
A new baddy blink – frights. I get quite a lot of them, and who knew, you blink when you get a fright. Rosie’s tail swishing close to my face (goggles on) is enough for me to fright-blink. Pfffft!
I noticed earlier that my transplant eye was actually more comfortable than my other eye with contact lenses in… Obviously nothing has changed in that dept (though I have a new hard lens to wear over the soft – made from a different material). I can still only wear it for a very limited time each day. The juggling act of deciding daily which hours to spend with improved vision continues…
I also seem to have lost all concern/ self respect – posting ridiculous photos of myself online no longer poses any bother!
We did take Bruce II (the tandem) for a very gentle cycle this evening (I checked with my surgeon who approved a gentle pedal)! Mostly down hill to Glencaple, I got to wear the super duper safety ski goggles I bought in a charity shop in Keswick a good few years ago now (in a moment of inspired fore-thinking – when I suspected a transplant would be on the cards). Pre-loved/ second-hand/ once-worn stuff has always appealed!
Thank you
I am hugely thankful for the kindness of friends and neighbours, with offers of help and company and chocolates and flowers. The funny thing is you wouldn’t know to look! The receptionist at the doctor’s surgery gave me ‘the raised eyebrow’ to beckon me forward; my neighbour laughed when I said I almost wished it were bloodshot and bruised! There is no scar or cast or aid or apparatus, nor badge. Everything looks normal. And yet I am living with the cornea of someone who has died, who I didn’t meet and will never know.
I asked both nurses and doctors at the hospital if there is a way of passing on a thank you card, within the understandable confidential anonymities of organ donation. None had ever been asked before… I shall pursue it with the National Eye Bank in Manchester.`
[Edit – see this post for an update and ‘how to get in touch with your donor‘.]
In the meantime, know that if one of your friends or family have donated their organs, the gift is appreciated beyond words.
An extra couple of photos from this past week, enjoying the sites and sights and smells, though ‘couldn’t find’ the chocolates for a photo…
**UPDATE**
It’s one year to the day since my cornea transplant – 21st June 2020. I can’t quite believe it – I remember the years of fear, and walking to the hospital with distinct clarity (though not visual clarity, haha!).
Things have gone well in terms of my transplant health – it is healthy, it hasn’t rejected – though that can happen at any time. I’m still taking one drop of dexamethazone steroid a day to keep it that way. However, my vision remains appauling!
It’s difficult to say whether it’s better or worse than before – sometimes I think it’s better – there’s not the same multiple images – but at night time, the flaring and rays and distortion of lights is undeniably worse. I used to be able to use my kc eye very close up for drawing, like a magnifying glass, but I can’t read a thing with my transplant eye now.
My surgeon was ‘alarmed’ at the prescription my optician wrote just prior to lockdown. He likes to get a vague guestimate of where the vision is at. But he said it will be due to the stitch which is holding my cornea drum-skin-like taut. For the first time, instead of 24 months for stitch removal, he mentioned 18 months – another 6 to go.
Though with the delays on everything due to the coronavirus, who knows… ‘Watch this space’!
One year on – healthy eye with stitch still intact.
I took this photo using this advice from my optician practice.
*UPDATE 2 YEARS ON*
After starting writing it down here, I decided that a separate post would be more appropriate, as it’s likely you’ll be desperate for a cup of tea/ the toilet if you made it this far!
So, to find out what has happened in the last year, and for (most importantly ) information on *how to get in touch with your donor family in the UK* – click to read my 2 year update, here!
