1 WEEK CHECKUP - MONDAY 20/10/08 am

Ooh Hello.

Its Monday morning. Monday the 20th.

Exactly 1 week since the operation and i had my 2nd check up with Mr Anderson today... well i suppose its the 3rd because i had the one on the day after the operation, but hey, whos counting!!

Erm..... Its all good news! Again. Which is good.

He is very happy with how it has continued to heal. The surface of my eye he thinks is healing nicely, its a lot.... its a smoother surface than it was before, erm... and i managed to read the first 2 lines of the chart unaided in my left eye!!!!! And i managed to read the 3rd line when i put the pinhole glasses on, erm... Very only just mind, i moved my head around and managed to make the letters out with the pinhole on.

But never the less i'm on the 2nd line.... within a week which is absolutely brilliant um.. I'm well pleased!

Everything else is good, we are just packing up to go back home to London, its sad to leave here but i am really looking forward to getting back to my own house, my own bed.... (anna gives a nasty look) Sorry, our own house, our own bed!

Oh, i have been given some minor scolding from Anna, sorry from Dr anderson via Anna, She brought it up in the checkup, that i certainly am not allowed to be walking up 2 steps at a time. stuff like that. and that, well he has basicly just said that er.. the initial healing period is the 1st 8 weeks so, its good because it gives me a timeframe in which i need to make sure that i am really carefull for at least the next 7 weeks from now.

My next appointment is booked for 2 weeks time, so will see Dr Anderson in 2 weeks and hopefully it will have got a lot better by then. It just so happens to coincide with the 1st day i am due back at work, Never mind!

Ok. speak again soon

A WIERD BUMP? - SUNDAY 19/10/08

Hello (Tom) Hello (Anna)

Anna thinks i have a wierd bump in my eye, and it's worrying me. Anna's been away for 2 and a half days doing my opera, has come back and tom is not taking it as easy as he should be i dont think?!I think i was taking it easy but, you know it's all relative. Hmmm! So I don't know.....

We are goimng to see Mr Anderson tomorrow morning so, we will have him look at the eye! I'm pretty sure it's ok, I can see better out of it than i have been able to. Not that its the defining factor really! If the edge is bulging out as you say then god knows? There is like some small bubbles around the rim of where the donor cornea is. Maybe it's just scar tissue? Are you supposed to be having any of that? Well it's gonna have to knit together somehow isnt it! Hmmm. Its not just.... I'm sure its fine, its probably not a big problem, it certainly wasn't there when i left you on friday! Ok.

Anyway... So i put his eye shield back on him.... She's Back!! (Laughs (thank god!))

Now i'm gonna tidy up the room. I love it. (Laughs) Ah i'm so much happier with her here it..sort of.. She calmly whips me into shape!..... And i listen to her. Cos i'v promised that i would! You do, you are doing good! Thank you. As long as i'm here to listen to. If im not here you take liberties! I think maybe you are right. I'v not been too bad. I think you've been bored too, bored out of your brain. Out of my brain (sung badly)

Right anything else you want to say to the memo?

Yep......Errrr......Errmmm.............. I havn't had a cup of tea today so; Anna, can i have a cup of tea please? Yes ok, i will make you a cup of tea, i want one as well!

Thats it, oh i spoke to everyone, i'm not sure i said this on yesterdays memo, but i spoke to lots of people on the phone to let them know i was doing ok and it was quite nice chatting to everyone and loads of the guys in london said for me to call back when i'm in london, and they will come and pop round. so i said that will be cool, we can play some cards and stuff and then i suddenly thought, i dont really know how that is going to work, i will have to ask them what cards i have which kinda defeats the point!

You should say that this is the 6th day since the operation. Yeah and i am picking at the stuff. Stop picking! The sticky stuff left on my face from the patch tape!

Yarp! Yarp!

Bye! Byebye!

DAY 5 - SATURDAY 18/10/08

Hey. Its Saturday morning and my eye is hurting more than it has done yesterday and its... i'm feeling that it was a bit due to the extra activity last night, just kinda being downstairs and not resting and relaxing quite as much as i probably should have been doing.

I feel a bit under the weather today and a bit down but then whehay whats new!

Its really cool (My brother in law) Ben's just gone to get my prescription, finally sorted it all out and with 2 months supply, just in time as i nearly ran out, for a Princely, no Kingly, no Sultanly sum of £180, which is kinda ridiculous!

Its like an imense amount of money for eye drops, i had no idea that it was gonna be quite that much. I thought it was going to be the standard price per prescription or per item, not per molecule. I assumed that is would be about £30 at most.

Its a ridiculous amount of money, but then again... It's got to be done, what price do i put on my eyesight?

I could have gone with the Preservative option but that is supposed to be not as good for your eye and ......... Oh god, i have got Chloramphenicol dribbling from my eye into the back of my nose and it tastes really discusting and bitter. Eugghhh its horrible!

Yeah the preservative is supposed to be a kind of toxin, so its better for me to not be putting that toxin into my newly transplanted cornea. In the scheme of things £180 is nothing... If it makes the difference in my eye healing better or not! So there we go, its got to be done!

Just had a gorgeous brekky, mum brought me up a full english and some tea, i'm feeling a bit better about spending the weekend here and having to not do stuff. Its a gorgeous day outside and i just.... i dunno..... I'm looking forward to when i can enjoy it!

One day, one day soon.

Cool . Probably speak again later today.

FRIDAY DAY 4 - 17/10/08 pm

Hi, um, its Friday, day 4 in the evening.

Things have been slightly better today. I think that the photo i took earlier (shown above) looks less bloodshot. And i woke up this morning and um.. my eye wasn't stuck together at all, there was a few little bits of gunk i had to take out of my eyelashes and some yellow staining from the apointment last night, but overall it was kinda fine, i was able to open my eyes, it wasn't dry erm.. it was good Throughout the day today the top right hand corner of my eye that has been absolutely almost unbearably painful, has been feeling a little better for the first time since the operation. It's um...Yeah i can still fell its kinda there but it doesnt hurt as much to open and close my eyes anymore. Its not such a sharp pain, its more of a dull pain now. and i can feel it kinda right deep in my eyesocket now, there is a sort of fairly dull, almost bruised pain. All in all it feels like its getting better. I think my vision is slightly better today than it was yesterday, which is nice. I was able to see the numbers on the TV, showing the score on Mastermind. Most of the day i have spent relaxing in bed and then this evening i went downstairs and spent some time sat in the living room with mum and dad and nan. It was too much for me, it was really difficuld because erm... like... Anna has been making sure that i don't do anything and just rest, mum and dad havn't been so strict, like i started doing a bit more than i probably should like bending down to look for my eyepatch when it fell off the sofa and lifting things. It started to make my eye hurt and erm... yeah, it feels quite nasty to say but i feel like thay are taking that i have gone through a tissue transplant fairly lightly. I have to be uber-careful and not do anything and er.. i feel bad for asking them to do stuff for me, i need to get that out of my head really cos i shouldn't, but thats what i'm feeling like. I kinda feel like i have to be very self sustainable here, but i cant as that will be bad for my healing especially as its only the 1st week. I did too much of that this evening, that was my mistake and i'm paying for it now with a bit of a painful eye. I need to calm down and relax.

Anyway, its not long before i have to take that last drop of the day, finally have my medication all sorted, it's been a nightmare trying to get a prescription for more than a days worth, finally got one for 2 months supply. Hopefully mum or dad will get that for me tomorrow. Thats it for today Speak to you again tomorrow

DAY 3 FOLLOW UP - THURSDAY 16/10/08 pm

Hello, Its thursday evening. Day 3.

Just got back from... well had dinner and stuff, but recently got back from Mr Anderson's for my follow up, erm... and everything is going really, really, really well. He seemed very pleased with my progress and he's just said that there is a couple of bits of trauma in my eye at 3 o-clock and 11 o-clock, thats causing the bloodshot bits and there is some bruising. He was very surprised as to how un-inflamed my eye was. which is a positive sign. I seem to be coping with it pretty well.

He also mentioned that he was very pleased with the donor cornea, they managed to pair me with a cornea of similar age, so.... and he also said that the cornea was of an exceptional quality, it just sounds like everything is good. I said that the cornea is not directly on top of the pupil and he said that was normal, they would usually transplant the cornea as being slightly towards the nose, and slightly down because of the way that the eye works, thats the best place, thats where the vision comes through. and thats why he did that.

He mentioned that my eye is a little bit soft, it isn't fully inflated with fluid and he he wondered why that was as usually it's too high pressure. The usual reason is because there is a leak somewhere in the stitches but he had a really really good look and couldn't find anything. He had a good look on the inside of the eye as well, so i have now got a massive dialated pupil.

So everything sounds good and that it went as well as i could hope.

I have another apointment with him on monday, so i have decided to stay close to the hospital at my parents until then, Anna needs to go back to London tomorrow and i will see her again on monday, and go home back to London after the apointment.

Goodnight all.

RESTLESS DAY 3 - 16/10/08

(Anna) So this is day 3, thursday

(Tom) Day 3 Blues!

And Tom's feeling really restless so i'm in on the memo as well.

I'm feeling really restless, really down and i kinda want to get up and do something but i cant obviously and i cant see and it still hurts and it doesnt look like the bloodshot eye has gone down anywhere and its stilll hurting in the top left hand corner of my eye like when i blink or open my eyes and stuff, its the only bit that really does, the rest of the eye feels really fine but this one little area is really really hurting and um and its really annoying and horrible and.... and..... Bleaauugghhh!

And Tom said to me, today he's going to go for a walk, and i said no you are not! That was a bit of a turning point, because i turned around and meekly said....... OK! Ok so yeah, i think this is where my job hets a bit more difficult,cos i have to..... ah the phone is ringing.....

..........Ok, memo resumed after talking to my friend, Andy, asking how it all went, and um......

Its so difficult handing everything over to Anna to do, like, i'm such an indipendant person, i likw doing things myself and everything, Understand that as stubborn! Stubborn, yeah! and like just then i picked up this dictaphone and i went to switch it on and um, i had to tell myself, no, put it down and let Anna do it. and its just so difficult. Cos i want to do these things but then i can't! and it feels horrible!!!

Even getting your drops out of the fridge. Yeah. We have a small bedside fridge, but even so, straining yourself to lean over and open the door and..I wasnt reallty straining to lean over to begin with, it was only the fact that i leant over to take the stuff out of the fridge, i was naked cos my jamas are in the wash, and i thought it was my nan coming up the stairs. by bums showing, and my bits are dangling, i'm trying to get the drops, then had to strain to get the drops and get back into bed and covered up quickly, and it turned out to be just you.

So, anyway..... yeah. Definately day 3 is the day of restlessness! Yep! Tom just wants to flex his muscles and do things. The aneasthetic is kinda wearing off now and....... you know...... I could probably do with some more maybe?! Yes, lets go and get you some more drugs.

I think your eye is healing really well! Well I think it hurts to buggery! Well you did miss your 1st ibuprofen of the day! You know what, i dont think that Ibuprofen does much to stop the pain, its paracetamol that does it, the painkiller. Ibuprofen is an anti-inflamatory drug so it takes down the swelling.

Oh one good thing i suppose. This morning, my eye wasn't stuck together. Yay! I dont know if that because i woke up loads in the night and i kept opening my eyes or not, but it just wasnt stuck together, so i could open it this morning, every other morning, its been properly stuck together, we have had to bathe it and soak it and wipe all the gunk out. The gunk is definately white today which is good.

Memo day 3 over? Yep, why not. I guess you can tell by the depressing tone of my voice how i am feeling really.

Yeah Bye! Bye!

DAY 2 - 15/10/08

JUST GOT HOME - DAY-1 14/10/08 1pm

Hello Just got home and have been sorted out with my bed, and pillows and something to eat. My eye has begun to get a bit more cloudy, i hope this is normal. Anna is taking really good, REALLY GOOD care of me. Its really nice... erm I am of course worrying about my eye, just thinking that it's not supposed to be like that but then its not really my job to do so, i think annas sort of... well.... i've got to listen to Anna.... She's the boss! Yeah so, i'm all settled in, just going to lie down and catch up with some more harry potter audio-book, which is pretty cool. Everyone is happy for me to be back and i'm er really happy with how the operation has gone. It has been really wierd, like with my right eye i can still see all the keratoconic stuff, the... erm... 6x vision and all the bits in between, and with my left eye, although its really going cloudy and fuzzy, i can see that the keratoconus side of things is really depreciated and i can almost see like pin-dots for the lights, instead of all the rings round it and stuff, so i'v got quite good, um quite hopeful for what is going to come of it all. Ooh, there we go (alarm going off in the background) its time for my next dose of Dexa, so i'd better get that done. Bye

PRESERVATIVE FREE DROPS

Hi Before i came in for the operation i heard a doctor talking about drops on the KC conference 2005 (availiable from the keratoconus support group - link below) The doctor said that he would advise against drops with preservative as they are a form of toxin. I decided that if i'm going to all the bother of an invasive PK, i would like the best after care as well. Therefore i would like preservative free drops to aid my best recovery possible. I have been prescribed Dexamethasone every 2 hours and Chloramphenicol 4x a day. The hospital has had trouble finding drops without preservative. They finally found me some this morning (day 1) Before i came into hospital, i aquired a miniature fridge to keep the drops chilled beside my bed, and for when i het back to work, the chlora is supposed to be kept refrigerated.

THE DAY AFTER THE OP - DAY 1 - 14/10/08

Hello.

Its Tuesday morning, day after the operation and i feel like i'm doing quite well.

The last one, obviously they had just taken the patch off and everything, err vision is a little bit cloudier in that eye today than it was last night. I hope that it's nothing major but, yep not too sure.

Dr Anderson has just seen me and had a good look, he says there is some deposit on the lens but the lens is looking very nice, everything has gone very well.

I'm looking like i have been beaten up, my eye has gone really big and puffy and everything and..... just...... yeah, feeling a bit down so far just cos it's like, the day after and mainly that the vision has gone down a bit but, can't really do much about that.

I have a 1 week check up in a bit, earlier than 1 week in fact its 3 days, so im having thursday evening at another hospital i'v got to go to, they are gonna come up and give me a err... apointment soon.

I still feel very woozy from yesterday, and just really looking forward to spending the next 3 weeks in bed and hopefully this will begin to get better, and sort of stabilise a bit.

Its still amazing that i can sort of see out of it, i wasn't expecting to be able to see anything to begin with, i thought it was gonna be really cloudy and hazy, it wasnt and now its beginning to get that way which is a bit annoying. If Dr Anderson comes to see me before i go, i will have to let him know that.

I forgot to ask him some stuff like what do i need to look out for do i need to make a... sss.... like if it starts to go really bad, do i need to come back in and stuff like that? so. i dunno? I might need to ask some questions, maybe i will ask the nurse next time she comes round, see what she thinks.

Ok

There we go

Its 20 past 9 in the morning, over and out...

THE BANDAGES COME OFF - 10:20pm 13/10/08

Hi Erm something amazing has just happened. They,ve just taken the bandages off for the first time, its about 20 past 10. And err, I can see, my left eye, i can actually see out of it, i can see what time it is on the wall, i was able to see what the numbers were on my err ipod and everything and in the distance i can kind of see the lights without having all the things around it all the distortion and everything, it's all still a bit fuzzy and it will be for a while i guess but, i can... I can see. Like its much better than my right eye. In fact at the moment its not too far off the vision i used to have, with having a lens over the top of it. erm, Its hurting quite a bit on the top, the top eyelid, but apart from that it's really good. oh and its, i'm crying a lot out of that eye cos its quite painful, but she said that there was hardly anything to clean up, its erm all very good and i'm just.... Im just astounded, its amazing its really good, i just cant believe it, i keep looking with it. It hasnt got the keratoconic stuff going on, i'v got a bit of fuzzyness around the lights but thats about it. Whoohoo, Yay. Right speak to you again soon.

POST OP - about 2pm 13/10/08

Hello

I'm back from theatre, like a couple of hours later and um.... Annas here and i'm feeling really groggy, my voice has changed a lot since before the op when i was completely freaking out.

Everything's good, i've got a bit of a headache from um, the err, aneasthetic. I'v still got a needle in the back of my hand from putting me under. An arm band round um to sort out my erm blood pressure. I'v got a big eye patch on, a big like plastic thing. Can you see my eye underneath it? (to anna) Its clear plastic?

Oh, i've got a dressing on......which is why i cant open my eye, of course!

Erm yeah, i havn't opened my eye yet, but every time that i look around with the other eye, my eyeball moves underneath the eyelid on my left eye, and it feels like they havnt done the operation at all, it feels like instead they have lifted up my eyelids and poured the contents of a sandbag in it. I think its the stiches that are rubbing on the inside of it.

And you know when you wake up like completely dry eyed, you cant open your eye to begin with and your eyeball is stuck to the inside of your eyelid? It feels a little like that!

So umm, just lying up, sitting up in the bed at the moment, waiting for a cup of tea, and a sandwich, and anna's here having joined my just about 10 minutes ago.

Recovery continues.......

JUST BEFORE THE OPERATION - 8am 13/10/08

Hello

I'm just about to go and get everything sorted. I've had eyedrops and i'm in my fancy dressing gown, mum is accross the room from me and i'm beginning to feel a bit nervous about it all.

(mum says hello from across the room)

yeah so, everyone seems to be taking really good care of me. Dr Anderson is nice, The ferrero roche hasnt arrived yet ;-) but other than that, its all good.

They recon i'll be on top of the list so, see you on the other side.

You can make out on these photos, the cloudy patch from my hydrops episode, this is 5 months later so it has cleared up a lot since it first happened.