A DALK diary

[chad sharp]

Hi folks,
It's DAY 4 following DALK and I thought I'd put up a post describing my experience. Apologies if it rambles.
INTRO BIT...
I was diagnosed with KC in '96, only my left eye was really effected, the treatment offered was a 'rigid' RGP lenses which despite perseverance was intolerable after about 3 hours of use. i left things for a few years then on advice from my optician was referred to QVH E,Grinstead; I was then on cyclosporin for a long time, one of the remarkable improvements back then was curing my light sensitivity (initially I couldn't look at the light on the consultants microscopes without my eyes streaming and had to have my eyelids held open)
5 years ago I had INTACs implanted in my left eye, one of which extruded (worked its way out) a few weeks after insertion. After it healed I had the remaining INTAC re-positioned and my eyesight settled at LH 6/19 and RH 6/4.8 with glasses.
I was always told that I might end up with a graft but was never pushed, I think the consultants were doing some skilled expectation management.
My sight was ok, I had halos and ghost images particularly when night driving but all quite tolerable. My brain was very good at sorting out rogue messages but I noticed that I was squinting at my work PC and straining a fair bit. I am also I'm finding work a constant reminder that my stereo vision is rubbish, I can't use microscopes very effectively and any assembly/soldering is hysterical to watch as I can't get parts to touch.

I was originally given the 9th of Jan as my op date but this was postponed the day before due to lack of material, this was naturally frustrating, I'd spent about a month re-organising project dates at work and delegating stuff and my wife had re-arranged her work and childcare. More importantly I was also mentally prepared for the trip into the unknown, so I had to wait a bit longer.. Last Friday I found out that Monday was go and given my fasting instructions, I got a call on Sunday night to make sure that I was going to be able to get in thru' the snow.

THIS WEEK...
Monday, day of op, Woke at 6am and had last drop of water.
7:45 arrived at QVH East Grinstead, shown my room and unpacked my slippers, PJs and dressing gown (if you don't have these then get them) - went for a quick eye-test and met my surgeon and signed consent form and asked if I had any questions. Back to room and given some fetching green stocking socks and a smock and told to relax, op was expected to be on at 10:30 2 people in front. Told to be ready at 10.
9:30 told to get ready quickly as a previous patient couldn't get in because of the snow.
10am positioned on surgical bed and all wrapped up in blankets by the recovery nurses then talking to the anesthetist, she's keen that I have a couple of puffs on my Ventolin, which I left in my room! (I only use it for my dog allergy and I couldn't see any around) a tube is put into my arm, just a slight prick, the tube is like TYGON, soft and flexible, no discomfort.
Left for a while to stare at the ceiling and listen to the nurses banter, it's dry and witty, a guy that is wheeled out of theatre is told he's lucky - he got first go on the instruments and they'll be blunt for next one in
Wheeled into theater, clipped up to the monitors and sedated, then I'm out.
just gone 2pm. Waking up in recovery, my arms are held by a nurse and I'm being told to be still as I'm trying to rub my eye where they've put in lubrication, I feel groggy but no pain. My mouth feels like Ghandis flipflops - I'm given some sips of water and a cup of tea and biscuits. The tea is fab -the biscuits less so, struggling to salivate.
I'm walked back to my room and given more tea and lots of water. I'm wearing an eyeshield and eyepad
It's suggested that I sleep off the effects of G.A. this is easier said than done, hospitals aren't quiet.
At some point my surgeon visits and tells me I've had a successful DALK operation it took a long time apparently as there are a few methods they can use.
Here's something I never knew - it's difficult to urinate following a G.A. I should have sat down as it took ages
I feel great - even the hospital grub tastes good.
Later, it's more comfortable in a darkened room, I'm given a paracetamol - my eye feels like it's been poked and the nurses pop in now and then to give me eyedrops
After a visit from my lovely wife I settle down to sleep, I'm lucky as I don't have to hold 'posture' meaning I can sleep on my side.
I don't sleep too well, occasionally woken by either my eye or my bladder, I'm offered a stronger pain-killer which I take.
Tuesday.
I'm woken at 7am for eyedrops, my first thought is 'shouldn't I be in pain'?
next it's off for an eyetest - my eyeshield and patch is removed properly for the first time - first impression is of thick white fog, then I realise I can see shapes and colour. My eyes are pressure tested and I can read the first line on the chart although the pinhole test makes no difference. Then a consultant checks them over and I'm told i can go home today.
I go back to my room and chill with some music and even manage to read a little
About midday I'm discharged with a big bag of ointment/eyedrops and a nice timetable prepared by one of the nurses. I'm told to try not to look down and to use my eyeshield for sleep and when the kids are around, the stitches are very fine and not that strong to be able to cope with a child's poking.
I get home and settle down in bed and relax, I take a paracetamol about 7pm.
Wednesday
Awake at 7 to start the eyedrop routine, I have to boil a kettle so that I have sterile water to wash my eye, I spend the day in bed listening to music and reading a bit, no pain in my eye. In the afternnon i decide to open up facebook and let people know I'm OK. It hits me with a force how fortunate I am, as I'm writing my post there is the realisation that someone has gifted me their cornea and that there is also likely a family in grief. I start to well-up then I'm in tears of grief for the donor and their family. Before this moment it had all felt conceptual.
I sleep well with no pain.
Thursday
Wow I'm tired, I spend the whole day drifting in and out of sleep, listening to 6music, and somehow managing to be awake at the right time for my drops.
Friday
Up at 7 to start the eyedrop routine, I wait for the house to empty then following a nice long bath I'm up and dressed and then here I am rambling on.
It's taken a while for me to write this, occasional breaks from the screen, lots of tea and the stops for eyedrops.
Here's the routine:
Maxidex steroid drops 4 times a day for a year.
Chloramphenicol ointment 6 times a day for a month.
Celluvisc lubrication drops every 2 hours during daytime ongoing.

thanks to my friends and family, to all the staff at the QVH and of course to the Donor and their family.

I've got an appointment next Wednesday and will post any news
Chad

[Anne Klepacz]

Many thanks for this, Chad. And it all sounds good! All the very best for an excellent recovery.
Anne

[jay87]

Thanks for sharing Chad. I was really nervous at the thought of a graft, but reading things like this make me feel less nervous. I hope you make a quick recovery

[chad sharp]

Thanks for encouragement
Here's the update I promised...
DAY 8; Everyday has been better than the one before, I've been waking and noticing improvement in my vision every day - not having a chart makes my 'tests' fairly subjective, examples being I can see where the kitchen clock is, I can now make out the hands, now I can differentiate between the big and the little hands, you get the idea.
My eye is completely comfortable, I can sense that it feels different although I would say the chloramphenicol ointment is causing most of the sensation as it is greasy and does things like binding my eyelashes together - really no big deal or problem.
You are told to check your eye everyday for redness or anything unusual - yesterday I noticed that there's a reflective ring around my eye, I wanted a closer look so being a geeky Engineer I ended up taking a picture using a USB endoscope, Wow what an amazing photo, I have 16 individual radial sutures making my eye look like a bit like dartboard.
I visited my local optician and asked how much it would cost to put a plain bit of glass in my specs as I think the prescription will not help my new vision, they told me they'd do it for free - Brilliant they've just got my loyalty for life.
I went back to the QVH today for my first check-up - My wife drove me there and laughed at how excited I was, there is no doubt in my mind that I was stressed in the weeks preceding the operation, I had a spring in my step today and I was anticipating good news.
You probably know the form:-
First tests are eyesight checks on the charts; left eye is already 6/19 without glasses- I knew it was good but this is astounding, the nurse did a doubletake on the date of my op and remarked that my sight was very good for this early in the day. The nurse tells me to take good care of my eye.
Next it's eye pressure, I've learn't to ask for the 'freeze' drops in my left I first as I can only wink with my left eye (means I can open my right eye with my left eye closed but not vica versa) pressure is normal 13 & 14.
Skip topography and the funky laser show.
Finally it's time to see the consultant, I'm pleased to see it's the surgeon, not sure if I can name names so I won't (for what it's worth I've tons of respect for everyone at QVH). The consultant is very pleased with the results, I'm told that it wouldn't be unusual for it to take 3 months post-op for vision to get this good
I ask if there's any reason why my results are so good , the consultant tells me that the donor material was very good quality and that during the operation the process went well with good indications.
I'm asked if it's OK for them to take a few photos, so it's across the corridor to another consultancy room where we join another consultant, the photos are superb and they e-mailed me copies there and then (If anyone can tell me how to post them I'd be glad to).
My vision is as good as it was pre-op so I'm told I can drive again.
I'm signed off for a third week, the consultants both want me to be very cautious - I mustn't traumatise the eye or risk getting anything in it. I can work from home so we agree that I can ease myself back into work as soon as I feel up to it (which will be tomorrow) One thing I won't do for a while is drive at night so when I do go back to work I will flex my hours to avoid this.
More good news - I can reduce Chloramphenicol to 4 times a day (from 6). I'm not sure if it's paranoia but I find that people get squeamish about me putting in eyedrops in front of them - must be my technique.
Today has been a turning point, I haven't really relaxed whilst resting - I guess I've been concerned about when I'd be able to get back to my normal life and work, I felt things were going well but today I've had it confirmed.
I have to go back for a follow up in 4 weeks time. I'll post any news
Chad

[J Hoffa]

Thank you for posting and good luck!

J Hoffa

[chad sharp]

4 weeks post op..
Had the tiniest of setbacks: felt some discomfort and eye became bloodshot. This coincided with stopping using Chloramphenicol ointment. Basically it's dry eye.
I'm fairly certain that celluvisc at 0.5% is pretty useless in my case and that the ointment was providing better lubrication.
I called the QVH and they agreed I should carry on using the ointment until I saw them a couple of days later.
I'm now on lacrilube morning and bedtime and 1% celluvisc every 2 hrs when awake.
My surgeon told me the graft will cause dry eye; the nerves take about a year to sort themselves out apparently.
Back to complete comfort and sight is still improving, still a little blurry but I'm told the surface of the cornea still has some healing to do.
I'm having no trouble night driving, only strain has been driving east to work with the sun directly in front of me - thank goodness for winter clouds :/
I'm working full time with no problems, I mustn't do any heavy lifting and my colleagues have enjoyed ribbing me when I ask for the occasional 'lift' but having 16 stitches in your eye is a good enough excuse it seems.
Chad