Saturday, 12 October 2013

Nearly 1 year on!

Well in 4 days it will be a year, yes a whole year since had my right corneal transplant.  It has been a long journey with problems in the first few months of it, that can read about on this blog.  But fingers crossed most of 2013 has been fine.  I had a check up Monday just gone and everything is fine.  The vision is not great but they hoping that might improve when the stitches are removed.  That is the next step, they booked me in for next month to have all the stitches removed.  I know from my own research some consultants do it different, for example may leave them in for a shorter or longer period of time or remove a few at a time.  With my consultant this is his way and to be fair to him he has a superb reputation.  Below the type of stitches I have is on the upper diagram.

In 2006 he removed all the stitches from my graft on the left eye so at least I know what to expect.  And as have discussed in this blog, it is a painful process.  Not so much the time when the stitches are coming out as can not feel that but the initial time afterwards.  It feels like a horrid burning feeling and very sensitive to light. Once the eye get's used to the stitches not being there any more and becomes smooth surface all fine then. What are my hopes for after they are removed?

I would say I am not relying on any great vision coming out of it and anything better than what I did have will be a bonus.  I just count myself lucky that someone who had severe KC before the grafts, I am grateful that I have sufficient vision with my glasses.  Anyway we shall see what happens.  The main thing now is that both eyes are nearly sorted before our little girl or boy arrives in the world.  I know one day I may have to go through the process again but I imagine in 20-30 years time technology will have moved on so much that who knows what they will be capable of doing then?

If there is anyone about to or going through process of a corneal transplant and have any questions feel free to ask me on @cornealgraft on twitter

Saturday, 1 June 2013

Long awaited update on my corneal transplant.

Well its been a long time, nearly 7 months have passed since the transplant.  Is crazy to think that amount of time has gone by.  When there are problems with it time goes so slowly but when the graft is getting on nicely time fly's by as life just goes on.  So where am I now in terms of the graft?  I'm still a good 6 plus months away from having the stitches out.  I am having a check up every 2 months at my local hospital by the surgeon who did the graft (and my other graft back in 2005) and everything is going well.  The eye pressure is normal (fingers crossed), the graft is nice and clear he says.  Vision wise nothing to shout about, is slightly better than my left which has a large astigmatism when I remove my glasses.  But I think is better than it was and obviously in time once had stitches out hope can get a prescription in the glasses that will make it much better than it was.

When it comes to any side affects 7 months down the line there are only a few for me but this can differ from person to person.  Currently a bit gritty at times but seems to clear after a while or once put some drops in.  Eye lashes are very long, a side affect of the eye pressure drops apparently, can be annoying at times.  But apart from that not much else, I don't really suffer from glare too much from the sun.  Driving at night can be a bit unpleasant but able to get by.  In terms of normality I have played football and tennis with no problems but worth noting just to be very careful, I would not suggest playing competitively in football as flying elbows and such like could easily cause a massive problem.  And also consider protective sportsware glasses, a worthy buy.

Anyway nothing annoys me more than unfinished blog's and I nearly did it myself!  Ill do a few more updates, but most likely not have a great deal of news until the stitches come out.  Hope everyone else who has had a corneal transplant is getting along well.  And just added an updated pic of what it looks like, not usually as red in corner but that's working nights for you :/ Also the bit at middle slightly right is just watery from taking the pictures, took a few goes :)

Thursday, 17 January 2013

3 Month Thoughts

Well if I am honest it feels like its been a lot longer than 3 months but maybe that's because of Christmas and all the problems I had in November/December.  I am glad to report since the mist cleared or the haziness I guess you could call it, it seems to have got better every day. Its by no means amazing vision but I knew to never expect that as that is rare.  But seeing a couple lines down on the eye chart is better than what I had previously and this is only 3 months down the line.  After a year I hope it will just be correctable by glasses.

So what happened on the 3 month check up?  I was mostly hoping that the eye pressures would be OK and the eye was clear, which pleased to report that was the case.  What I was not expecting which wasn't bad was that there was a lose stitch which the consultant removed there and then.  Didn't feel too bad as had a drop in to numb the eye.  And was all over in seconds and that's me done for a month.  A month is the longest period yet I (fingers crossed) wont have to go for a check up.  I don't mind going too much but just good to know all going to plan.  Here's the best photo I could do, blinded myself a couple times with the flash just for you :)

I had some questions of my own, 1. Can I go back to the gym?  The consultant was fine with this, obviously no heavy weights for a while now though is a given.  2. Can I play football?  (Soccer for you guys in the US :)  He wasn't too keen on this due to potential of an elbow or arm flying in my face by accident, which is always possible in football.  This is always going to be a risk as the graft is never as strong as original cornea but it will get stronger the closer it reaches a year after the op.  So will leave football for a while longer yet to be on the safe side.  Did make me think though, I never really thought much of it before had the right eye done as played football plenty of times having had a graft on the left in 2005.  I think not long in the future I will invest in a pair of sports protection glasses which would be ideal.

This brings me onto my next my mission which is to get my everyday glasses updated so that I have a balance lens in the right of the glasses as currently it has a prescription in it which was for  pre right eye graft vision.  I keep meaning to get it sorted but as the vision in the newly grafted eye has not settled down yet it doesn't make a great deal of difference and the consultant confirmed wont do any harm currently.  When I do it though I wont be going to a high street chain to be severely ripped off and treated like a numpty that's for sure hehe.

Before I sign off here I would just like to say have met some really nice people along the way who have also had transplants and those who are trying to cope with the everyday strain of KC.  To me it really does look like it is becoming more recognised than it was say ten years ago and I think the internet, forums and such like play a huge part in that.  The people that run the websites and forums really deserve high praise for giving up their time to help others like me.

Friday, 14 December 2012

You only sing when you're winning!

Where to start???  Been the longest and toughest week so far since having the transplant done on October 16th.  3 weeks ago my consultant told me would have to undergo a minor operation to try and get rid of the fluid within the cornea.  It started with a air bubble being inserted into the eye to try and disperse the liquid  but this failed.  I went back the next week for a type of adhesive to be injected into the eye, the idea would be that it would stop fluid leaking into the cornea I believe but this did not work.  With both of these ops it takes a good few days to recover so meant more time off work, but held onto the fact that it is all in an effort to help.

So then came this week, went in on Monday for a check up and the the consultant wanted to inject slightly more glue as could see it was still leaking in.  I was inclined to wait till after Xmas as didn't want to take more time off work but he pointed out the graft is repairable and better to do it sooner rather than later which I agreed with as eyes so important.  So off I went on Tuesday to the day unit and all the usual aesthetic drops.  Least I knew what to expect and it wasn't long before it was over.  However I didn't expect to wake up early hours on Wednesday with really bad aching pains in the eye and looking at it was very inflamed   I rang the on call eye Dr and was asked to come in to the eye clinic first thing.

I was checked over by an Dr who advised was high eye pressure causing the pain and inflammation and he put me onto pressure tablets and back onto stronger anti inflammation drops.  Felt much better by the evening and even noticed that things in general looking through the right eye did not seem as cloudy but at this stage did not want to get my hopes up.  The pressure drops have off side affects, tingles in hands and feet and make any fizzy drink taste like metal, yuck!  Back I went Thursday for another check up and saw a different Dr but one who had sat in on the minor ops of the adhesive being inserted so he knew about me.  And he was happy pressure back to normal and from he could see the eye looking clear hence me noticing things not as cloudy.

So surely a day off Friday?  Nope back I went today but am very grateful for having such a good hospital nearby with excellent eye doctors.   Things started well with usual eye sight check with the nurse as for first time could see something through the pin holes, that had not happened at all since the graft.   And today my consultant was back and he checked his handy work out. He advised as far as he can see no fluid is entering the cornea and he's confident it wont return.  Still slightly hazy but he said should start to go and with taking me off dilation drops the vision should start to improve.  Obviously I am not expecting amazing vision but just be so pleased to hopefully be back on the road for eventually having glasses/contacts correcting the sight, which was impossible with old cornea due to the KC.   If I was him I would of been hi-fiving everyone saying I did that, oh yeah whos the man!!  But guess they have to be diplomatic and know its a long road to recovery :)

After all a dreadful week did get better and so many kind people helped including my wife, the whole Keratoconus GB Forum on Facebook, twitter followers, the Drs and Nurses at the hospital and in particular the consultants secretary who has been extremely helpful and made my life much easier helping me sort appointments etc.  With this better luck today I got half way out the hospital and turned around and went back and bought a lotto ticket from the newsagents as luck seems to be turning, touch wood!  So never know might be writing the next post from a Mac Book Pro!!

Tuesday, 27 November 2012

Anyone for a air bubble eye injection?

Well as the title suggests I had air bubble injected into my eye today and no, not just for the sake of it :)  It will hopefully to help clear the liquid which is causing the cloudiness   At this exact point in time it is still blurry but was told to expect this and will take a week or so to see if has helped at all.  In a way I'm fed up the new graft isn't working out like the 1st one did on the other eye but then I realise things like this aren't straight forward and I am lucky enough to have good sight in one eye.  There are people who are far worse off than me and I am grateful for all that's been done for me so far.

Anyhow back to the juicy stuff!  So I turned up for my 10am appointment, at this stage was a bit nervous but thought hey they know what they are doing.  Within not too long was taken through to the operating theatre. Was stopped outside by a nice lady who checked I am the real Oliver Loveless and not some guy pretending to be me to get his hit of air bubble magic in the eye!  Once passing the identity test she proceeded to put drops in my eye, a nice concoction of anaesthetic drops and iodine   She then asked after final drop "Did that sting?"  My reply no, she said well good because usually it would like mad so now you are ready to go in!

Upon walking in there were a few people dotted around doing various things, a man called Tom took the job of handler and told me where to sit and how etc and what will happen. And that would be holding his hand throughout in case I had to indicate I needed to cough or sneeze so the surgeon could stop what he was doing hence preventing stabbing me by mistake!  Once all ready to go, the music was turned up, stereotypically opera, they could of asked me what I preferred and could of stuck The Stereophonics on.  At this point my consultant.surgeon flew in like superman to do the op.  I laid back, two stickers, a clamp and a large blue sheet later I was ready to be operated on.

This was odd, what looked like the largest robotic arm ever hovered above me and then BOOM, a bright white light shone into my eye, jeeeez it was bright!  Toms hand took a bit of a squeeze at this point but advised was just the bright light.  The next think I knew a needle was being inserted and a large bubble began to appear on surface of my eye.  At this point you might be trying to imagine what this is like.  I have an idea, while its raining stand at a window, get your partner or mate to shine a massive torch through the otherside, and press your face against the window so your eye is peering through a large water droplet and hey presto you know!  Well add a bit of pain in there for good measure if you wish!  This beloew photo is not my eye as cant be bothered taking a photo and connecting up to laptop tonight, but it essentially minus the redness looks similar bubble wise

So 15 minutes of lying there looking up and was all done.  Can now sort of see the bubble, looks odd.  I am back in 48 hours for check up, and just another waiting game.  Overall one of the weirdest things been through but I believe from reading about it that it is a widely used procedure for naturally making a donor cornea grip to the new eye, apparently the bubble press's it together so it sticks and no stitches are needed.  Obviously I already have stitches and hopefully isn't going anywhere but this should, well the theory is, that it will clear the unwanted liquid by dispersing it through pressure.  I shall report back soon :)

Monday, 19 November 2012

1 month check up

Well strictly speaking its a few days over a month since the corneal transplant but whos counting!  Not such a great day today check up wise.  I appears the eye pressure has gone up in the newly grafted eye and is high though he didnt give me a number.  The reason I say this is because back in around 2005/2006 when had the left eye done I was admitted to a ward following a check up because I had ridiculously high eye pressure in its 60s I believe and was at risk of the eye going blind.  At that time I was prescribed new drops to get the pressure down and from my memory that worked.  At this point I thought about sticking a photo of someone's eye pressure being taken but that's boring and for some reason this photo came up on google too and made me laugh so I think that's a better idea!  (Disclaimer-Non star wars fans wont get it though)

The main bonus this time is it hasn't got that high and not high enough to be admitted to hospital to keep an "eye" on it.  So I have been prescribed further eye drops to bring it down like all those years ago on the left.  And me and my little eye drop bottles have been reunited.  I remember them very well, is funny how things like that stick in your mind but I guess when you have to use them 4 times a day they do!  So in all I am now on 5 types of drops.  I wont list what they are as the names are ridiculously long on a couple of them.  But in all we have two types for the pressure, one to stop infections, one for comfort and one more I don't know yet as they didn't have it in stock and I will get it tomorrow.  I imagine it might be pressure related too.  I have been taken off altogether on the anti rejection drops as this is the cause of the eye pressure going up it is believed.  And this is backed up from my experience on the left eye.

All in all its a bit of a set back but at least it was caught now before it got any higher and touch wood the new drops will work.  Ill do whatever I am asked to do by the experts, this is the only thing I can do.  I did again think today it would be nice if had the money for private treatment as did seem like got rushed in and out today even after an hour delay.  But obviously a lot of people to get through and I do understand that.  Now I aim to give my eyes a break for a bit as been using a computer all week at work and I imagine this cant help, so today and tomorrow I have off so I intend to rest!  Oh and treat the wife and me to a nice Chinese to cheer me up!

Wednesday, 7 November 2012

Nearly 1 month

So coming this Tuesday it will be a month since I had my transplant.  Not really much has changed with the eye.  I had a check up on Monday just gone which went fine.  There is still fluid between the new cornea and my eye so this is causing the cloudy/blurriness.  It should apparently clear after a month or so.  Also I was prescribed lubrication drops to help smooth out the surface of the eye and they are a real help, less so bumpy when the eye lid goes over the stitches.

One thing that was odd was I was supposed to see the consultant who did the operation but they put me under one of his registrars to apparently save time.  This was a bad move as they were running an hour late but hey ho I could not do much.  The ironic thing was when I eventually got seen, he had to get the consultant who was next to him behind a 1 inch privacy board to come and check my eye anyway so they might as well as left me with the top man.  He obviously agreed with this because he put in capital letters on appointment request sheet "To See him only" next time.

This coming Wednesday I will be back to work so that will be good to have some more routine back as the 4 walls of the house I know very well now.

Anyway back to the eye, after all this is what the blog is about.  Like I said the lubrication drops are helping, theres no pain or anything but does occasionally feel like something is in there.  This is something that should go away in time.  And over the next few months the vision should improve from what it is at the minute.  There is still a bit of redness on the lower right of the eye and again this should clear in time, isnt massively noticeable.

So anything else that the transplant has affected?  It might seem like not bending over as instructed not to when had a graft would be easy but you would be surprised how many things you bend over to do.  Put the washing up back in the cupboards, picking up the clothes to be washed, picking up shoes to put on, and twice a day in our house, feeding our 2 feline friends and they wont wait for anyone!

So what's the next stage?  Have another check up in 2 weeks, all 3 drops are now 4 times a day so id expect that to stay the same for a little while now.  And touch wood in 2 weeks there might be some vision improvement, who knows, Ill take it day by day like normal.  Thanks to all for reading and hopefully is helping in some way to those thinking about having it done.