Simply Day 9

Well have not long returned from my 3rd check up with the consultant who did the operation and pleased to say all going ok.  Before the appointment over the last few days have been bit worried if anything is up as I think its hard not to.  But glad to know everything is going as planned.  This made me think if I had ridiculous amounts of money and could pay for private treatment I would have a daily check up just for the satisfaction that I know its going ok.  I imagine if had infinite money I could pay the consultant to live in a shed at the end of my garden.....no waiting times.....on call 24 hrs.......appointments when I want, it would be rather nice really!

Anyway back to reality, the consultant and the whole NHS are doing a superb job for me yet more people around me there today complaining of waiting times and their anger towards the staff.  I really felt like just standing up and shouting you are getting all this for free and you can see they are rushing around and are busy.  Someone should record these people moaning and then play it back to them later and I am sure they would be very embarrassed.  I have seen far better behaved 3 year olds than some of them.

On a brighter note I am very lucky to have my wife around who has helped a lot and is doing the majority of the household chores.  And also my family and hers both helping us out where they can to take me to the hospital for check ups which I hugely appreciate.  Finally to keep people interested you have to show some photos of each stage and I have not yet got round to that so here's a bunch to make up for it, :)

Pre Op Right Eye, nasty KC lurking there.

First day after Op, nice arrow I know!

Same day, Arrow still looking good :)

Day 2, meh!

Now oddly this is day 9, do not be alarmed by the redness, in previous pics its jut not visible because eye not as open as much and had check up today and all is ok so far, it should disappear in time from what I remember when had my left eye done.

Nearly a week!

Wow a week does go quickly even when you cant really do much or see out of one eye much.  The first 24 to 48 hours were a pain, literally.  But apart from that since then its been fairly pain free and just more of an annoyance really.  From my first experience of the graft in the other eye and from what the consultant says its just the eye getting used to the stitches.  This is all fair enough but when you have spent 28 years giving your eye a good old rub when something gets in it, it is pretty difficult to resist this.  Somehow you do though, its difficult to explain but something in your head just stops you from doing this.  Even with my robocop eye guard I still don't think I would rub it because there's that voice in my head saying you do that and you will be in bigggggggg trouble!

So in terms of vision a lot of people planning to have their transplant will be very eager to see improvements and I am no different.  But have to keep reminding myself takes not only quite a while for it to settle but also then there's no guarantee it will be much better on its own.  But it should improve the ease of fitting glasses and especially contact lenses.  Glasses I am totally ok with and actually like wearing them but contacts are my arch rivals and I will avoid them unless I really have to!  And that's something I know I will least give a go again.  Ironically last time I tried a lense on the left eye the opthamologist asked me if I knew of any new KC friendly lenses we could try and order!  Though don't get me wrong there are lots of amazing lens fitters out there like the world renowned Lynn White, but there are also ones in my experience in the NHS that maybe have the skills but not the resources to back it up which is no fault of their own.   Or maybe more importantly the time to research KC lenses more as they tend to try and get you in and out quicker than Felix the skydiver fell from space!

So what's next? No I am not going to sky dive 5 metres higher than Felix unfortunately, instead I have another check up on Thursday and touch wood all be going ok.  It would obviously be nice if the blurry/cloudiness cleared a bit but Ill deal with this regardless if its an issue that might need sorting in the future or if its just part of the recovery.  I am hoping the latter but either way am extremely grateful for chance to improve my vision from the people who donated their cornea's.  Oh and I have managed to use my laptop to write this so good to know my left eye is up to the job, now here's hoping for the right in time :)

Lazyness Day 3

I'm not sure if its lazyness or just feeling sorry for myself after the op but I haven't been eager to blog much. Having read another persons blog going through a graft too this has given me a bit of a kick up the backside! And reminded me to not just report on how the transplant is going but everything else that goes with it :)

My lovely wife set off into the city centre yesterday to do the simple task of switching the lense in my right side of the glasses for a clear non prescription lense while my sight changes over the upcoming year. Well she would of found it easier to rob a bank it seems. The usual big players of the optician world didn't quite get what she was asking and quoted silly prices for a clear piece of glass! Would of been cheaper to go through zenith windows!!

Also demands for a letter from my consultant as proof because after all the world would be mine with that clear piece of glass in the right!! I wonder if half of them know what KC or a transplant consists of?! Anyway we have decided to leave it till I can venture out too and visit a independent opticians who are not trying to take over the world! On a brighter note my check up went ok, all looking as should be and to continue with same drops.

What did really test my patience though was ironically the other patients waiting for their cataracts to be tendered to. Jeeez why do they bring someone with them if they walk straight past the entrance to check in to the wrong side anyway! This is forgetting the fact they have walked past the electronic check in because they assume its a prop from Star Trek. Whilst I am on the subject of these "patients", is it really that difficult to sit and wait for half an hour without moaning about how busy it is or every detail of what their husband is up to today!!! When your eye is irritated and doesn't have the best of vision these are the last things you want and they push you to the very edge! Make waiting rooms library's I say and also try to keep Norfolk people to the minimum because they literally can't stop talking about anything and everything! And breath.............

Post op thoughts

Well it's been over 48 hours since the corneal transplant. I'm writing this from my phone as using the computer is bit too much strain as yet. Apologies if this contains mistakes as only got my vision in my left eye. I was told it went ok and I had a partial graft rather than full thickness which I believe is less likely to reject but vision doesn't meet same standards as full thickness. Only time will tell with that. I was discharged the same day on Tuesday, it was a hard 24 hours of a burning sensation and watering from the transplant, most likely the stitches causing that. Today has been better though, the eye is red in the outer corner and not too bad on the inner.

The vision as expected early on is blurry, I just wish could remember how long that lasted in 2005. My memory is terrible! I have a check up tomorrow and hope all is going as should be. I and my wife especially are doing all we are supposed to do keeping things clean and bacteria free. No bending down or rubbing of the eye etc and generally just resting. Apologies for taking a while to update after the op but just been really tired and as some of you will know it isn't a easy process. I try to put a few updates on twitter when I can @cornealgraft and I uploaded a photo :)

No Man's Land

Before I have my right eye transplant next week I thought I would cover one more area of my first Corneal Transplant and the experience I had so that it might help others about to go through a transplant.  I think most people that have KC who are going through or going to have a transplant cant help but think how good the vision will be after.  In my view this has to come down to being used to seeing with KC.  For example in my teens when my KC started progressing, it wasn't until a good 3 years into it that I was fitted with hard lenses.  Upon being fitted with them I could not stop staring at my hands.  The lines and the colours looked like something I had never seen before, maybe I hadn't!   Either way seeing like that was amazing, and if a corneal transplant could get even anywhere near that I would of been happy.

After having my transplant in 2005 the vision for the first 6 months or so was very variable and I kept telling myself not to think about it too much.  Once it settled down I actually had good vision in my transplant eye and had good enough sight to drive unaided.  The only thing I can remember that was a pain even though could see well was excessive glare from cars at night.  But this could of been a mix with my KC in the other eye.  So for a good 6 to 9 months the vision was very pleasing and then came the time to remove the stitches.

I had read that I should not be surprised if I am left with some level of astigmatism once the stitches are removed but I did not really think much more about that.  I had the stitches removed and that was one of the most painful things I had ever had done.  It wasn't the actual removal of the stitches but the burning pain afterwards and not being able to look into any kind of light.  Luckily this began to ware off not long afterwards but it really does stick in my mind the pain and I am not looking forward to that again.  Unfortunately I was left with quite a high level of astigmatism and this is where "No Man's Land" began.

I was sent to the department in the hospital I had the transplant done for contact lenses fitting to correct the astigmatism.  The first mention of lenses and my heart sunk as I really had enough of them by the time of my graft.  I guess I should not of been naive to think I would not have to wear them again but because I got used to seeing with contact lenses or glasses it really did hit me hard.  I tried multiple lenses and each one I tried over a few weeks I still could not get any decent wear time out of it.  My eye would feel tired and the lens made it constantly go red and blood shot which worried me as did not want to harm the transplant.  I asked about glasses and was told the astigmatism is so high that I would not be able to cope with the strength of the glasses lens and the depth of seeing things would be too difficult.

No lenses, no glasses and a high level of astigmatism in my transplant eye left me with poor vision yet again. And no one at the hospital really had any answers, it seemed they were more concerned with how good the graft looked and not the fact I could not see very well at all, they left that to the contact lens department.  So for nearly 2 years from 2006 to 2008 I struggled by wearing contact lenses for as little time as possible as I could not tolerate them.  At this time I was still working for The Royal Mail so I managed as I had done before without the graft.  Again hindsight is a wonderful thing as I should have kicked up a fuss at the hospital.

In 2008 through my own research I came across a specialist in KC called Lynn White who was working at an Opticians around an hour away from where I lived.  So after a few exchanges of email I arranged an appointment.  She was appalled I had been left to cope with poor vision after the transplant and set to work helping me get better vision.  She said there was no reason why I shouldn't get good vision with glasses and after testing my eyes etc, hey presto! we had a new prescription   It took a few weeks to get used to but ever since then have been fine.  I have driving standard vision in the left, the lens in the glasses might be over a centre-meter thick at the side but the main thing is I can see!

I owe a huge amount of gratitude to Lynn White for spending time with me working on my vision and getting me to see again.  It meant I could live my life far easier than before and I am sure there are many other Lynn Whites out there helping people with KC and Corneal Transplants.  I don't have any anger against the NHS for pretty much abandoning my eye sight as they have done so much for me over the years.  I feel it was more a failure of a poor contact lens/glasses department with every changing opthamologist's due to budget constraints.

Anyway second time round I know not to take no for an answer and that nothing is impossible!  Twitter is getting crazy now with 20 followers hehe but if anyone else wants to follow my right eye transplant from the 16th feel free to

@cornealgraft

Thanks

Oli

Me, Myself and Keratoconus

Whilst I am waiting for my transplant next week I thought it might be a good idea to give a bit of my history with Keratoconus aka KC.  As previously described in my first post on this blog I covered in general what KC is.  One thing I didn't mention is that KC generally affects 1 in 1000!  If only my parents had put £100 bet on that before I was born, would of been a tidy sum!  I have been trying to think when I first was told the condition I have is KC.

As far as I can remember I was prescribed glasses from around the age of 10 I think.  And in like most cases with children, the doctors at the time advised if I wear them it was highly likely I would not have to always wear them.  Well they got that completely wrong and there it began.  At the time I was living in Germany within the British Forces due to my parents.  Therefore once I was diagnosed with KC around 13 I think the British Army NHS sent to me to a specialist in Germany.  I was fitted with soft lenses to begin with and they were absolutely fine for around 3 years.  But it got to the point where they had to move me to hard lenses, (RGP lenses)

And WOW putting plastic in your eye for the first time that is hard and not soft is horrid!  I hated it, I really did but after a few weeks of building them up time wise I tolerated them and me and my hard lenses lived a happy life up to around the age of 18 in the year 2000.  During the years of 13 to 18 I visited multiple German Specialist Eye clinics in Munster, Bielefeld and Gutersloh for ones that would fit.  I have lost count of how many maps of my eyes I have had done!  From what I can remember at the age of 18 or so a specialist in one of those places mentioned Cross Linking but for whatever reason it never went any further than that and my memory escapes me as to why.  I do know that if my wife and I ever have children I will have him or her checked early on for the onset of KC as there is so much more they can do now.  Like I have read and heard from others KC is often missed by Doctors by I would like to think awareness of KC is much higher now.

So where did it all go wrong at 18?  I remember this time of my life well as was working for the British Army in my summer after college and before returning to live in the UK.  It had just got to the point where I was really struggling to tolerate the hard lenses, the comfort, the wear time was extremely low.  Most of the time I avoided wearing them when I could.  The final thing I remember being told by one so called "specialist" is that with my severe KC is likely ill never be able to drive!  Not many years after that I passed both my car and Motorbike licences, id like to see him again :)  Upon returning to the UK in 2002 I was sent to the famous London Moorfields Eye hospital for further fitment as at that time the new modern eye hospital in Norwich was not built yet.  They did their best for me at Moorfields and I kept trying new lenses but to no avail.

Looking back is ridiculous how I used to cope.  I went to University in 2003 and for 2 years before the transplant I struggled daily with hard lenses, only keeping them in for lectures I knew I had to see the screens at the front.  I recognised the buses I needed to get to University by waiting for them to pull up at the kerb, would then squint to see the number on the side.  There was no way could read the front of the bus.  This next bit is good too, I worked for The Royal Mail from 2002 to 2005 (British Postal Service)  I did not deliver but I sorted mail.  And at that time I could not tolerate lenses, I coped though.  If you can just make out the number 1st Class or 2 Class or International mail there's not a great deal more to it.  If any mail got miss directed I apologise, plus this is also where I met my wife so cant complain too much :)

Pre 2005 socialising was always fun too because I could not tolerate the lenses I essentially was walking around partially sighted.  Before my transplant trying to find your friends in a local pub was not easy and any chance of trying to attempt a conversation with a nice young lady was near impossible as they could of been anything between 18 and 60!  In hindsight I should of made more people aware of my KC and not been worried about asking for help.

In 2005 came the Transplant and even though fingers crossed I have a excellent looking graft, the vision was a bumpy ride, and Ill cover that another day this week.  Hope I didn't bore too many people, good to see more followers on Twitter @cornealgraft

Take care all

Pre Op Hospital Visit

Just a quick update tonight.  I went to my local hospital, which is the Norfolk and Norwich in the UK which has a excellent eye department.  (Cant complain about the NHS, been excellent to me over the years, all for free)  My appointment was with the same surgeon who did my transplant in 2005.  He checked the issue that I had Saturday with the graft and is more than happy that everything is OK and has put me down to 6 drops a day on the drops which stop inflammation.  I am pleased with that as hourly in the only eye I can see in was causing problems with the vision.  My vision is nearly back to normal, still slight affects from the dilating drops.

So what's the next step?  Everything was also good with the right eye which will have the remaining transplant on the 16th.  As long as I stay generally well and no flu or colds it will be fine to go ahead with the transplant.  In a way doing this blog and twitter is helping me not get too worked up about it as that's easily done.  I guess having gone through it before in some ways is good because I know what to expect but also in some ways its not great because I am remembering how much of a long slog the recovery time is.  The main bonus is this time I can see out of the left eye.  In 2005, I had a new cornea which had variable vision for least a year or so and a right eye with severe KC.  That was extremely hard work just doing everyday things.

Anyway if anyone reading this wants to keep up in real time with how things go please follow me on twitter @cornealgraft

I will be tweeting more from the 16th when it all takes place.  Have to say big thanks to my wife also for putting up with me as know I am not the best patient!

That's it for now, thanks for reading

:)

Why am I having a Corneal Transplant?

So where to start?  I don't want this blog to be massive paragraphs that I know myself would sometimes be a chore to read so I will try keep it to shorter stints.  On October the 16th 2012 I will be having a Corneal Transplant aka Corneal Graft on my right eye.  Thankfully it will not be my first as its nervous stuff to go through!  I had my left done in 2005 and although a long process it was worth it.  Before going into the finer details of what it involves you might be wondering why someone would need a Corneal Transplant?

As a teenager I was diagnosed with an eye condition called Keratoconus.  There are many long winded explanations of this, feel free to read more on http://en.wikipedia.org/wiki/Keratoconus  But I find the easiest way to explain it is if you look side on at someone's front part of the eye it would be this shape )  However someone with sever KC like myself it is more >  Obviously this is not viable unless looking with correct equipment and there might be flaws with this explanation but people tend to understand it better I find like that.  The main way they correct this is through hard contact lenses that push the eye back to the correct shape like this )  However it can get so steep that lenses just don't work and pop out.  This photo gives an idea of how people see with KC without correction lenses/glasses

This is what left me in 2005 with the only remaining option of a Corneal Transplant.  I am not saying there are other options out there as there are many but for me my KC was too severe. 7 years later and touch wood everything has been fine with my transplant apart from ironically a minor rejection scare this weekend, a couple days before my pre op appointment for my right eye.  Thankfully due to a great Eye casualty in my city it appears it has been put under control with eye drops.

On Monday I will see the surgeon who did my last transplant and will do my right eye.  As long as everything is ok it will go ahead on the 16th.  So what does it involve?  The long and short of it is that the front layer of the eye, the cornea is cut out of my eye (under anaesthetic)  and then a donors cornea is stitched onto mine.  Next will be a recovery of anything up to 2 years including multiple drops numerous times a day and constant  weekly visits to the hospital for check ups.  Its a long slog but hopefully be worth it and I intend to document it through this blog and twitter, feel free to follow on this blog and @cornealgraft on twitter :)