One of the key traits of Keratoconus- the aspect it would put in its About Me section on Facebook next to an instagrammed photo of a cornea eating a cornetto on the beach– is its unpredictability. It’s a disease which can coast along quite happily for a number of years with minimal change or effect on a person’s life, before suddenly flipping everything on its head in a matter of weeks.
You could say that life for me has followed this unpredictable path over the last 12 months, although ironically my KC has had little to do with it. In the months following my last post about cross linking in February 2012 I finally flew the family nest after 28 years and headed to the bright lights of London, fell in love, got a new job, was devastated by the loss of a close grandparent to a sudden illness, and finally gained a beautiful new niece in October. After 28 years of minimal disruption or drama my life had changed irrevocably and, much like my KC ravaged cornea, once it had changed it had changed for good.
Looking back, I think a big part of me had known that these changes were about to take place when I decided to have my corneal graft two years ago (is it really two years ago already?!). I’d certainly been planning to move to London for some time and hand the reigns of my grandfather’s leather business, which I had run for the last four years, onto my brother. I wanted to take advantage of the fact that I was living at home and running my own business- for which I could take as much time off as I liked- in order to have the graft and recover from it before plunging headfirst into a completely new city and way of life. It’s a point I think is worth reiterating when it comes to deciding if or when to have a graft- the best judge is your own gut instinct. In hindsight I feel like I had my graft at exactly the right time for me, and I still have no regrets at all about doing so.
Consultation 8 Months Post Graft, 2 Months Post Cross Linking
So ironically while my life was remoulding itself into strange and interesting new shapes, my two corneas remained relatively stable! My last meeting with my consultant Mr Morgan was in April 2012. At this point I was still travelling back and forth from London to home in Sunderland Tyne and Wear and was quite determined to maintain my eye care at Sunderland Eye Infirmary with Mr Morgan rather than changing completely to a new place in London. During my consultation he said that the graft continued to look completely fine, and decided to remove one of the stitches from it- taking the number down from 16 to 15. The procedure was really quick and painless- he basically numbed the eye with some drops before removing the stitch by hand using a pair of tweezers. He then gave me some antibiotic drops which I took for the following two weeks to reduce the risk of infection. He said that he would always advise caution when it comes to removing stitches- he didn’t want to remove them too soon in case the graft should come apart and said that as long as they didn’t present any problems and I was getting reasonably good vision (I managed the fourth line down unaided), there was no immediate reason to remove them.
The left eye was a bit more disheartening, I’d noticed after my corneal cross linking procedure that the vision in my left eye hadn’t regained the acuity that it had beforehand. Mr Morgan said that this could happen in some cases- the surface of the cornea can basically resemble an unironed sheet with tiny little creases after cross linking which can decrease the quality of vision slightly. He said that over time these creases would hopefully iron themselves out and I would regain my vision or even improve slightly. It was still a bit annoying to find that my ‘good eye’ had now lost a line on the chart, although thankfully the improved vision in my right eye made up for this a bit so it wasn’t as debilitating as it could have been a year previously. The good news from this was that the KC hadn’t progressed in that eye, which was the whole point of the procedure.
The rest of 2012 remained pretty uneventful regarding my KC. The vision in my left eye did improve slightly, although I still think I’ve lost a line from the chart and the vision isn’t what it was. My right eye didn’t present any problems either and I continued to travel home whenever I had a consultation (which, due to cancellations on both sides, wasn’t until December 31st 2012)
From Sunderland to The Big Smoke…
The first real change occurred earlier this year, when I decided that since I had now lived in London for nearly a year and it was becoming increasingly difficult to fit scheduled appointments around work and travel home (particularly when appointments would be cancelled and rescheduled with a few weeks notice), it was time to transfer my eye care down to London. It’s a decision that I had put off for as long as possible for a number of reasons. The main one was that I trusted Mr Morgan completely- he had carried out the graft on my eye and all follow up care with amazing professionalism and skill. Everyone I spoke to commented on his successful track record with grafts, and when I had a consultation with him I felt like he was talking to me as a person rather than just an NHS number or case note in a folder. It’s a small touch, but when you have a condition like KC and need regular consultations and care, it’s an important touch. I find it helps to put you at ease and make rational, informed choices on your condition.
I was concerned therefore, that I would transfer my care to London, and suddenly find that the consultant was giving me different advice to Mr Morgan, or that something important would get lost in the transfer. I needn’t have worried. I was transferred to the Watford branch of Moorfields eye hospital at the beginning of April 2013, and my first consultation was fine. My new consultant commented on how good the graft was and praised Mr Morgan for doing such a good job. She also reiterated what he had said regarding stitches- that it was better to be cautious rather than remove them for the sake of it, and that as long as they weren’t causing any problems and I knew to look out for any signs of redness or itching which could signal infection, it would be fine to keep them in. She then suggested that I could begin to get fitted for contact lenses again, and that there was a possibility soft contact lenses could now work for my vision. Having spent the last ten years feeling like I was shoving a piece of grit in my eye with hard lenses, the news that I could perhaps move to soft lenses was a revelation. She pencilled in a date for July to have another consultation and lens fitting session, and I came away feeling really positive about how things had gone.
Life’s A Stitch…
A few weeks after the consultation I woke up one Saturday to find that my right (graft) eye felt a bit gritty and irritated. At first I didn’t think an awful lot of it- since my graft there had been occasional moments where the eye felt slightly gritty or like it had something in it, but this would usually go quite quickly. I soon realised however that this felt different. Every time I blinked my eye would feel irritated, and soon became quite red, inflamed and watery. As the day progressed I became increasingly concerned that I might be having a rejection episode, and by the time I arrived home from work that evening I decided it might be best to get it checked out. The only problem was that a) This was a Saturday on a bank holiday weekend, and b) This was London. I didn’t really know where I should go or how I should go about it. I had always been told to go to A&E if I thought the graft was rejecting, and so I headed off to the local NHS hospital 10 minutes down the road.
I quickly got the feeling when I arrived that regular A&E probably wasn’t the best place to go. The staff seemed unsure what to do, and after a 4 hour wait I was basically told to go to Moorfields eye hospital on the other side of London in the morning. I can’t fault the staff at the A&E department I went to- they were friendly and efficient and did everything that it was in their expertise to do, but I now realise that due to the technical nature of KC and corneal grafts, it would probably be best to go to a special eye A&E clinic rather than a regular one. It’s the kind of thing you just don’t really consider before it happens, but if I experienced any issues in the future I would always try to go to an A&E at a specialist eye clinic first over a regular A&E.
To cut a long story short I went to Moorfields eye hospital the next morning and it turned out that a stitch had came loose, and that was what was causing all of the irritation! I was so relieved when I realised it was something that could be taken care of quite easily. The consultant who saw me basically did exactly the same thing as Mr Morgan had done when removing a stitch, and the relief was immediate. She sent me home with some antibacterial drops which she told me to take four times a day for two weeks to avoid infection (one of the reasons they advise getting a loose stitch taken out as soon as possible is that it increases the risk of infection hugely), and while the eye remained a bit red and irritated for a day or two afterwards, it soon settled back down. Annoyingly the acuity in my right eye decreased very slightly after the stitch had been taken out, but luckily it wasn’t too extreme.
And that pretty much brings us up to date! It’s been a strange old twelve months, and perhaps thankfully most of the drama has come from my personal life rather than the keratoconus. I still have some way to go regarding my KC- the next appointment with my new consultant in July will give me a better idea of how effectively contact lenses or glasses can improve my vision and let me know how the KC has progressed over the last year. I’m still able to live my day to day life quite happily with the unaided vision that I have, but it would be great to gain an extra line or two on the chart as my consultant says I might be able to.
Overall the graft remains fine and, the odd loose stitch aside, hasn’t gave me any problems since I had it done 21 months ago. I’m still more than happy with the results and extremely grateful to Mr Morgan for doing such a good job on it.
The Kerataconus Group
Before I go I just wanted to highlight the great work that all those involved with http://www.keratoconus-group.org.uk. It’s a website with a huge amount of information on keratoconus, and the forums have been invaluable at critical stages in my KC when I’ve been wrestling with decisions on corneal grafts and cross linking. KC is a relatively rare disease and living with it can, at times, be quite a lonely experience. So a big shout out to everyone who has shared their experiences on the forums and provided others with the information and advice needed to help them tackle their KC with a clearer mind.
They also have a monthly newsletter and hold regular meet ups do discuss KC in more depth. Like all charities they could probably do with a little extra cash to keep things running, so give them a little bump up if you can: http://www.keratoconus-group.org.uk/publications/donate_main.html
And as usual, if you have any questions then please feel free to ask or post!
Steve
Hi everyone.
Firstly, apologies for the ridiculous lack of updates over the last few months. I would love to say it was because something dramatic and exciting had happened, but unfortunately it just comes down to a combination of overindulging on alcohol over the festive period, and pure laziness! However, there have been a few developments since I last posted here, so I thought now was a good time to let you know how things are progressing. There have actually been developments with regards to both eyes (I was diagnosed with KC in both eyes when I was 16), but I’ll start with my right eye which is the eye I had the graft in.
So it’s now been exactly six months since I had the graft in my right eye, and everything continues to go as well (if not better) than I could have hoped. I had an appointment with my consultant Mr Morgan early December and as usual he was extremely happy with how the graft was looking- no loose stitches, no sign of rejection and even though the vision was still lacking clarity, he wasn’t too concerned about this. He said that the aim now was to start training the eye to become used to focussing again, and that we would do that by prescribing me with glasses that have a strong prescription in the right eye. I subsequently went for an optometry appointment in which I was prescribed with a pair of glasses, and the optometrist told me he would see me again in six months.
I’ve found that the glasses do definitely make a small improvement in the vision of my right eye. It’s not a major difference at the moment, but they certainly add a bit of clarity to my vision which isn’t there so much when I’m not wearing them. I was also surprised recently at one of my consultations to find that I can now read the fourth line of the chart unaided with my right eye, whereas in October I could only read the second line at best. In the same way that a person’s vision can deteriorate so gradually that they almost don’t notice (a trait often associated with KC sufferers due to the cornea’s shape changing very gradually over time), it seems my vision has been gradually improving over the last few months and I just hadn’t realised.
Mr Morgan said that I’m now in a ‘quiet period’ with regards to my right eye- it now just needs time to heal so that when the stitches are finally taken out there’s no danger of it coming apart. Once the stitches are out this should hopefully improve the vision further and then I can begin to get fitted with new contact lenses (or even glasses) to make the vision as good as it can be. It has been a long process, but I was fully prepared for this before I had the graft, and actually with regards to my day to day life there has been virtually no disruption- you can’t see the stitches because they’re so small and most of the time I actually forget I ever had a graft done. I’m also now down to just one steroid drop a day, so even that isn’t a major hassle.
I keep thinking back to where I was at this point last year- the fear that went with knowing I would probably need to have a graft and the uncertainty of how it would turn out. I found that once I’d actually made the decision to go ahead with the graft I immediately felt so much calmer about it all- as if I’d known all along that I’d come to the end of the road with regards to all other options and this was the only way forward. My advice to anyone currently in the same position as me (I must stress- I’m defining ‘the same position’ here as having tried all other available options open to you) would be to research thoroughly, think long and hard, but ultimately to not let the bad experiences or ‘what ifs’ that you read about on the internet scare you away from a graft. I understand that everyone is different, and in a very small percentage of cases things may not go as planned, but in my own case I could not be happier with the decision I made and I’m so glad that I made it.
Ok, now onto my LEFT eye! I mentioned earlier that the nature of KC can often mean that a person’s vision deteriorates very gradually, almost without them noticing. This can be especially worrying when it comes to KC, as a change in vision means that the KC itself is progressing, and if the condition progresses past a certain stage a graft is often the only option. This is why it’s so important to have regular eye checks and- vitally important- topography scans of the surface of the eye to monitor the progression of KC.
I’d been aware for a while that the vision in my left eye was starting to deteriorate. It was a small change- I could still read the same line on the eye chart etc- but it was a change nonetheless. I found that I was having to wear glasses to gain more clarity when reading or watching TV, which I’d never needed to do before. Although I’ve always had KC in both eyes, my left eye has always been my ‘good’ eye, and so I became increasingly concerned about the possibility the KC was progressing in that eye. In January when I went for my consultation with Mr Morgan he requested for me to have a topography scan on the eye, and confirmed what I’d suspected; there hadn’t been a major change in the shape of the cornea, but it was slowly starting to change shape over time.
Having already had a graft in my right eye, Mr Morgan was extremely keen for the same thing not to happen with my left eye, and so immediately suggested that I have Collagen Cross Linking performed- a procedure which aims to strengthen the collagen links in the cornea using riboflavin drops and so effectively halt the progression of KC in its tracks. I was concerned about having the procedure done, purely because I’d read that the vision in the eye after the procedure was really blurry and the vision in my right eye was still nowhere near what I wanted it to be, but I knew that I couldn’t put this off and so we arranged to go ahead with the procedure.
So last Tuesday (February 14th) while everyone else was busy going out for romantic candlelit meals and wading through piles of Valentines cards, I was lying on a bed for an hour having the front layer of my cornea scraped off and staring at a purple light for an hour! The procedure itself was quite uneventful and, dare I say it, relaxing at times. Firstly they put anaesthetic drops into my eye to completely numb the area and make sure I couldn’t feel anything. Then (this is the bit that may cause people to flinch), Mr Morgan scraped away a thin layer off the cornea. The reason they need to do this is so that the Riboflavin drops can absorb into the cornea. Mr Morgan did actually mention while he was applying the drops that a new kind of riboflavin drop is currently being developed that would actually be able to absorb into the cornea without the need to scrape a layer off. Since this is the aspect of the procedure which causes the most pain and discomfort afterwards, and also carries the risk of infection, that kind of riboflavin drop would be ideal and hopefully won’t be too long in reaching the NHS stage.
Having the layer scraped off didn’t hurt, but it was a strange sensation- I could feel the pressure on the front of my eye, but no pain. Once this had been done the next half hour involved me lying as still as possible as Mr Morgan put riboflavin drops in my eye every few minutes. It was a long process, but everyone around me was quite friendly and we just spent the time chatting. It was quite a relaxed atmosphere (and once again I’d like to say that I can’t praise the staff at Sunderland Eye Infirmary enough for their professionalism). After half an hour a lamp beaming UV light was placed directly in front of my eye and the next half hour involved me staring directly at it as Mr Morgan continued to put the riboflavin drops into my eye. At the end he placed a bandage contact lens on the eye to help protect it and reduce the pain. The whole procedure lasted about an hour and I was able to go home as soon as it was over. I was given a set of steroid drops to place into the eye four times a day for 2 weeks, and a course of antibiotic drops to place in the eye four times a day for a week. I was also given some painkiller drops, as I was told the healing process could be quite painful (which it was!).
My vision after the procedure was extremely blurry- I couldn’t manage to read any lines on the chart and I had to hold my phone really close to my face to see it. Luckily I found that the vision in my right eye was actually not as bad as I thought it would be, so overall I was still able to cope. I’d been worried that I literally wouldn’t be able to do anything with my good eye out of action, but while it was a bit of a struggle I found I could definitely still read a computer screen etc.
At first the pain wasn’t too bad, but once the anaesthetic had worn off it was pretty bad. It basically felt like I’d had a huge scratch on my eye (which I suppose in a way I had), and as a result the eye was extremely watery and red. The pain came and went over the next 48 hours, but at times it was quite uncomfortable- much more than I’d remembered my graft being. (I actually can’t remember having any pain with my graft). But fortunately the moments of intense discomfort would only last half an hour or so before the painkillers kicked in.
The vision continued to remain extremely blurry for the first four days, and I was starting to get concerned how long it would last, but then suddenly on Sunday I noticed that the clarity had improved dramatically. The pain had completely gone too, and over the last few days the vision has almost returned to what it was before the cross linking. This is probably what surprised me the most, as I’d read that it can sometimes take months for the vision to return. Again, whether I’m a typical case or not I don’t know, but the whole process was nowhere near as disruptive as i thought it would be. Like the graft I’m just glad I’ve had it done now and can start looking forward with regards to getting contacts fitted again etc.
So that’s me pretty much up to date now! I have an appointment with Mr Morgan in two weeks to assess my left eye, and then over the next few months I’ll probably be having more topography scans to see if the cross linking has worked. My right eye will continue to be monitored, but it’s not showing any cause for concern and i think the plan is just to leave it as it is for now and let the healing process quietly do its work.
Apologies for the length of this post! I’ll try and do them more regularly from now on to try and avoid these essay length ones. As usual I’m happy to answer any questions, so if you have any please feel free to get in touch
Hello!
Apologies for the lack of updates recently. It’s for the same reason I’ve explained in previous posts- namely that there hasn’t really been much to report! It’s now 9 weeks since I had my operation, and there still haven’t been any major issues. The eye looks and feels fine.
Today I had my third follow up consultation so I’ll just go through what was said by my consultant Mr Morgan. Before seeing Mr Morgan I had an appointment with an optometrist, who went through the same series of refractive tests that I explained in the last post. As far as I was concerned my vision was basically the same as it had been last time- I could make out the first two lines on the chart (both quite blurry), and not much else. When I had some different lenses in front of me however it turns out I was just about able to read one more line than I could last time. Although it wasn’t a massive improvement, both the optometrist and Mr Morgan said that the vision is going in the right direction and that’s the important thing at this stage.
When I went to see Mr Morgan after my optometry appointment he had a look at the eye and said that it still looked brilliant- the stitches are all still in place etc. He said that I’d probably have the stitches in for another ten months- making it a year in total from them first being put in to being taken out. He said that in the meantime he may remove one or two individual ones at some stage to try and help the eye to start focussing better, and that this is a simple procedure which could simply be done in his room with some anaesthetic eye drops. The important thing is not to take the stitches out too early, as this could lead to the graft coming apart.
He said that it’s still only two months since the graft, and again not to worry too much if the vision still isn’t great- patience is the most important thing about having a corneal graft! He also said that I can now go down to two steroid drops a day, and I’ll be using a slightly different steroid from now on. Up until now I’ve been using individual Dexamethasone drops which are thrown away as soon as they’ve been used. Apparently these are a slightly gentler drop for the eye as they don’t have preservatives etc, so that’s why they’re more suitable for the period of time just after a graft. I’ll now be using a steroid drop called Pred Forte (prednisolone acetate), which comes as a single bottle rather than individual sachets.
Mr Morgan said that he’ll see me again in 4-6 weeks, and that at the next appointment we’ll focus on trying to fit me with a pair of glasses which benefit my right eye as well as my left- at the moment I wear glasses (for reading etc), but only have a prescription in my left eye, as previously glasses didn’t help the vision in my right eye at all due to the ‘cone’ of my cornea being so steep. The idea is to get me to start using the right eye again, because at the moment my brain still focuses overwhelmingly on what my left (good) eye is seeing. He’ll also do a topography scan of both eyes to see how the shape of both corneas are looking.
And that’s about it for now! I can’t quite believe it’s over two months now since the operation. The time has flown by and, as yet, I haven’t experienced any issues. From now on I’ll just report on what is said at my consultations, but if anything happens in between I’ll make sure to post it.
Apologies for the lack of posts recently. It’s actually for quite a good reason, in that there hasn’t actually been anything to report! Things remain pretty much the same as they were in my last post. I’ve been applying 3 steroid drops a day instead of 4 for the last two weeks, and I also recently stopped applying the Lacri Lube gel to my eye at night. I was concerned that the eye would start to become really dry in the mornings again, but it’s been fine.
Vision wise things are exactly the same too. This is the only part that I wish I had more to report on. If I hold something 15cm away from my face I can see it perfectly, but as I move it further away from my face it becomes blurrier. I’m due for my next appointment at the eye infirmary on October 26th, so hopefully they’ll be able to give me an idea of how well the vision is progressing and if anything can be done to improve it.
And that’s about it for now! It’s now just over 5 weeks since I had the graft, and still no major problems or setbacks. I’ll write a full report on how my next appointment goes and if anything happens in the meantime I’ll let you know.
Hello everyone! Today, as promised, I thought I’d write a report on how my second appointment at the eye infirmary went. I had two appointments this morning- one to see the optometrist and one to see my consultant Mr Morgan.
So first I saw the optometrist. She asked how everything had been going and I said it had all gone really well- there’s no discomfort and appearance wise the eye looks completely normal. She echoed what Mr Morgan had told me in the past, which is that the vision will take a while to settle, and the reason for this appointment was to see how the eye is focussing at the moment so they can get an idea of how well the vision might be in the future.
She asked me to read the eye chart with just my right eye, and I found that I could read the top letter ‘A’, and just about make out the letters on the second line which were ‘O’ and ‘X’. She then put a pair of those infamous plastic glasses on me which allow different lenses to be placed in them. You all know the ones I mean:
Very attractive(!) So once those were on and a lens was in them she asked me to look at the ‘O’ which was on the second line, and did a series of ‘one, two’ tests, where she basically holds a double sided lens in front of my eye and asks if the ‘O’ is clearer with ‘one’ (the first side of the lens) or ‘two’ (the second side of the lens). I’m sure this is familiar to anyone who has been fitted for contact lenses in the past. After trying three or four different lenses the ‘O’ wasn’t really much clearer. She then tried the ‘pinhole test’, which again most of you are probably aware of, in which a lens is placed on the eye which is completely blacked out apart from a tiny pinhole in the centre. With this I could immediately manage the fifth line of the chart easily and the optometrist said this was how she would have expected it to be.
I later learned from Mr Morgan that this was all to do with Refraction, which involves measuring the eye’s need for corrective lenses. Refraction is all about light rays and how they enter the eye- in an eye with a normal, perfectly curved cornea the light rays entering the eye will be focussed perfectly on the retina at the back of the eye (which contains the nerve layer which sends information to the brain), so that a crisp, clear image will be produced.
Obviously in KC patients the distorted shape of the cornea causes light to be refracted differently on the retina, which is why vision becomes blurry and distorted. It’s also why vision becomes blurrier as KC progresses, because the more ‘cone shaped’ the cornea becomes, the more distorted the light waves entering the eye become and the less likely it is that light rays will be focussed successfully on the retina. People who have had a corneal graft do have a cornea which is more normal in shape, but there is still usually a degree of astigmatism, which is why most corneal graft patients still need to use contact lenses or glasses. As with most things KC related, each patient is different and some grafts will have more astigmatism than others. I suppose it all depends on how good the fit is between the donor cornea and your own and also the skill of the surgeon in making the graft as clean cut as possible.
Mr Morgan said that the reason it takes such a long time for vision to settle after a graft is that the cornea is a bit like an un-ironed T shirt. There are tiny little creases or folds in the cornea, which cause light to be distorted as it enters the eye. These creases tend to iron themselves out naturally over a period of months, but this is why people who have had a corneal graft need to be patient- the cornea takes time to settle into a shape which is smooth and at a stage where the light can be refracted successfully onto the retina. The reason I’m only able to manage the top line on the chart at the moment is because there are a couple of tiny creases right in the centre of my cornea, which is the most important area for refracting light. Mr Morgan said that these should iron out over the next few months and that’s when I’ll start to notice an improvement in the vision.
Again he did a quick examination of the eye and said it looked excellent. He seems really pleased with how the operation went. He also said that I can now go down to three steroid drops a day instead of two, and I can also start exercising again. So it’s pretty much business as usual from now on! I’m due to see Mr Morgan and the optometrist again in a month, which I assume will be quite similar to how today’s appointments went, and we’ll see how the vision is then.
Because everything seems to be going fine and there’s probably going to be less and less to write about, from now on I’ll just write a quick weekly update every Monday on how things are going. I’ll continue to write full reports on how my appointments go, but unless anything major changes I’ll just write a quick weekly post to keep people up to date. Part of the reason I’m writing this blog is to make people feel less scared about having a graft, and even though a short ‘business as usual’ post is probably quite dull, it’s probably also quite reassuring to see that things are going ok!
So it’s now exactly two weeks since my operation, although it actually feels longer than that. It’s strange to look back on how nervous I was in the weeks leading up to the op, and how much time I spent deliberating over whether I should have it done at the beginning of the year. Now that the operation is over and everything seems to be going smoothly I find myself asking what all the fuss was about!
There’s not much new to report really- the eye still looks fine and there haven’t been any problems. The vision does seem to be improving- that ‘greasy’ look I described in earlier posts is starting to become clearer, and if I hold something about 15cm away I can see it perfectly. Like I’ve said previously- before the operation I was managing without contact lenses, and the vision in my right eye was terrible anyway, so in a way there could only have been an improvement in the vision of that eye and I haven’t had much disruption in my vision or day to day life as a result. My brain seems to be adjusting to the new improved vision of my right eye and I do feel that my overall vision has improved slightly. I assume that if someone was used to wearing lenses before their op they would perhaps find things a bit more difficult afterwards, as there is a period of a few weeks or months where lenses can’t be worn in the eye and the vision needs time to settle.
In terms of how the eye feels, there is occassionaly a feeling of grittiness, but it’s very mild and most of the time I’m not aware of it.
My next appointment at the eye infirmary is on September 14th, when I’m due to see someone in the optometry department, as well as a review with my consultant Mr Morgan. I’ll write up a full report on how that goes, and if anything happens or changes in the meantime I’ll let you know.
Oh, and if anyone has any questions regarding my experience with Keratoconus or my operation that I haven’t covered in this blog, then please don’t hesitate to ask!
So it’s now 9 days since my operation, and today I had my first post assessment appointment at Sunderland Eye Infirmary. When I arrived a nurse did a routine eye test, as well as a pinhole test which involves looking at the eye chart through a circle of tiny holes. The vision in my right eye had improved in both instances- with the pinholes I could manage to read one more line than I could previously, and without the pinholes I could read the top two lines. Obviously the letters were still very blurry, but before the graft I had no chance of making out any letters on the eye chart, so the fact that I’m now even back in the ‘chart’ club is an improvement in itself!
The nurse also did a Glaucoma test, which involved putting anaesthetic drops into the eye and then very lightly tapping the eye. I’m not sure how it works, but she said that everything seemed fine and the eye pressure was normal. One of the side effects of using steroid drops can be the development of Glaucoma in the eye, which like most things eye (and general health) related, is much easier to treat if caught early.
So then I had my appointment with Mr Morgan- my consultant and surgeon. He asked how everything had been and there must have been a note of surprise in my voice when I said ‘everything’s been fine’, because he laughed and said that a lot of corneal graft patients expect the experience to be a lot worse than it actually is. You imagine lots of discomfort, various things going wrong, the eye looking weird after the op etc, but actually it’s been pretty much plain sailing so far. Over the last few days the gritty feeling in my eye has almost completely gone thanks to using the Lacri Lube gel at night, and the eye itself looks boringly normal. If you were standing right in front of me you wouldn’t be able to tell I’d had an operation on it- even the stitches are very hard to see. I had imagined having to take weeks off work, but actually I would say that after six or seven days I was at the stage where I felt I could confidently start work again.
Mr Morgan then had a good look at the eye, and even bought in a student doctor to have a look (one thing I’ve noticed as a corneal graft patient is that we’re a great training tool for junior doctors!), and after examining it he said he couldn’t be happier with how it looked. He said that at this very early stage I shouldn’t worry about what I can read on the chart, but said that even if I can make out just one or two letters now it bodes well for how my sight will be in the future. He also said that because I’d had a partial graft I don’t need to worry if I get a little knock or bump to the eye (although to obviously try and avoid if possible), because the eye is structurally still quite strong. He said I could probably start exercising again in about two weeks , and to just basically keep taking my steroid drops four times a day. The antibiotic drops only lasted a week, so I’m now just taking the steroid drops, which I’ll be on for about 6- 8 months.
I’m due to see him again in three weeks. He mentioned that the next appointment will be about working on something called refraction, which involves getting the eye to focus properly. Often corneal graft patients have become used to having poor vision in their eye before their operation, so after the graft you need to basically learn how to use the eye again.
And that was the end of my first post assessment! Again, everything seems fine and *touch wood* things seem to be going to plan. It’s only 9 days since the op, but the eye looks completely normal, the grittiness has almost gone and the vision has definitely improved to some degree. Obviously there’s still a long journey ahead with regards to my vision and watching out for any signs of rejection, but so far I couldn’t be happier with how things are going.
It’s now five days since I had my operation, and so far everything seems to be going ok. When I went to the eye infirmary on Wednesday to get the redness checked out, they told me to come back in two days to see if it was ok, so yesterday I went back for my appointment. Again the nurse checked the eye and said everything seemed fine, although it was looking a little bit red. I told her that when i first woke up in the morning it tended to feel very gritty and red, and then as the day wore on the eye would settle much more- the grittiness would go and the whites of the eye would be much clearer. She said that this is probably due to the eye becoming dry during the night- as you sleep the eye tends to rub against the lids and can become quite dry as a result.
She prescribed me a special eye gel called Lacri-Lube which she told me to apply just before going to bed. This is what I did last night, and this morning when I woke up the eye was a lot less swollen and gritty than it had been the previous few mornings. It still looked a bit red, but the redness seemed to reduce more quickly than it had done previously, so it seems like that problem has been sorted for now.
In terms of the vision there hasn’t been much change. I can see things really well from about 10cm away, which is definitely an improvement from what it was previously (my vision was so bad in that eye before the op that the vision could only have improved really). When looking at objects further away I can actually make them out fine, but the image isn’t very ‘crisp’ yet- it still has that ‘greasy cloth wiped over a window’ look to it. However, I’ve fully prepared myself for the fact that this is a long process- the vision isn’t going to be amazing straight away and I will probably need to be fitted for contact lenses once the stitches have been removed. The main thing to note at the moment is that there definitely has been an improvement in the vision of that eye.
One of the things a lot of my friends ask is ‘how does it feel to know you have someone else’s cornea on your eye?’. There seems to be a fascination with the fact that a part of someone else’s body is now a part of you, and I suppose the fact that you can actually see the transplant on your eye kind of adds to the intrigue. The truth is that it doesn’t really bother me. I thought it might- that I’d constantly be aware that someone else’s cornea was now on my eye, and it would be quite hard to get my head around, but what I’ve actually found is that you’re so fixated after the operation on how the eye is looking/feeling/seeing that you don’t really think about anything else. This may change as time goes on, but really when I look in the mirror all I see is my eye looking back at me. I’ve also been very careful not to descend into the ‘ewwww gross!’ idea of having a transplant. After all, someone has made an incredibly unselfish decision to allow parts of their body to be used for the benefit of others after their death, and I’m extremely grateful that people like me can benefit from their kindness.
I’m due to have my first proper assessment on Wednesday, so my next post will report on how that goes. So far, everything seems good!
So it’s now three days since I had my operation, and the eye seems to be ok. I had a bit of a minor panic yesterday when I woke up and immediately felt that the eye was more inflamed than yesterday. The whites of the eye were also much redder than the previous evening. I put in my steroid drops and antibiotic drops to see if it would settle but three hours later it still seemed the same. I’d been told by the nurses to always veer on the side of caution with regards to any apparent change in the eye, so headed to the eye infirmary just after lunch. The nurse had a look at the eye and checked the pressure and said it seemed fine- stitches still in place, no sign of rejection, pressure normal etc. She said that it can just sometimes be the case that the eye becomes a bit inflamed a few days after the operation, and particularly first thing in the morning when there’s been a 10- 12 hour gap between eye drops. She put some kind of anaesthetic drops into my eye and it immediately felt and looked better. By the time I got home it was looking much less red and felt less gritty than it had done that morning.
By the evening it had settled down even more and was pretty much back to how it had been the day after the operation. It was probably just a case of me being over cautious, but the nurse said i was right to get it checked anyway because you always have to be really careful with a graft and any apparent changes in the eye. The sooner any problems are caught, the better.
This morning I woke up and had the same feeling of swelling and grittiness, but again after a couple of hours it seemed to calm down a lot and it’s now looking and feeling fine. I also braved my first hair wash this morning since the op. I’ve had no problems showering since Monday, but I’d been putting off the whole potential ‘water/shampoo in eye’ situation for as long as I could. I basically just kept my eyes shut as tight as possible and dried them as soon as I could and it seemed fine. Like most people who have had a corneal graft I’m probably being over cautious about everything at the moment- not wanting to bend down or pick anything up etc, but I’m finding that I’m feeling more confident about what I can do as the days go on.
Vision wise I would say It’s just about the same as it was on Tuesday. If I hold something about 10cm away from my face I can see/read it perfectly and the vision seems quite clear, which is an immediate improvement from what it was post op. Further away things are still quite blurry, but if, for example, I’m watching the TV and I close my left (good) eye, I can now make out people’s faces with my right eye and general shapes are much more defined than they were pre op. I’m assuming that the vision will continue to improve a bit as the healing process continues.
So because I’ve just ate a Mars Bar and I’m in a good mood, I figured I’d give you all a bit of a present- a big scary photo of my eye! As you can see it actually looks pretty normal- a bit of redness around the whites, but not really that much. You can also see the graft here, although I was standing directly in front of a window with the light shining onto the eye (the window is what you can see reflected in the middle), so that makes it show up a lot more. If you were standing in front of me it would probably be quite hard to spot unless you knew I’d actually had a graft, and overall the eye just looks normal.
So the big day finally arrived yesterday, and it actually went really well. After waking up at Ridiculous O Clock my mum drove me to Sunderland Eye Infirmary and we arrived at 7:30am. I was introduced to the nurse who would be looking after me for the day and she showed me to my bed. My mum left not long after (the ten year old boy in me wanting to shout DON’T LEAVE! as she did so), and the nurse signed me in- confirming that I knew why I was there and asking if i had any allergies etc. My operation wasn’t due until 9:30am, so I had a bit of a nervous two hour wait. The room I was in had four beds, but the other three were empty, so I took the opportunity to just sit and try to collect my thoughts a bit. The ward was really quiet at that point and I appreciated the sense of calm around me, while inside I was growing more and more nervous.
After a while my consultant and surgeon Doctor Morgan arrived and had a quick examination of my eye. He also explained what would happen in the operation- that he was going to aim to make it a partial thickness (DALK) graft, but that sometimes due to the thin lower layers being pierced it was necessary to convert it to a full thickness graft. He said that if that happened it wasn’t the end of the world- full thickness grafts work perfectly well and have a good success rate, and partial graft’s are basically just an improvement of what is already a successful procedure. Still, I was really hoping that it would be a partial thickness graft for the reasons explained in the last post- not only is the recovery time quicker and it massively reduces the risk of rejection, but the eye is less vulnerable to injury (an eye that has had a cornea transplant is always structurally weaker than one that hasn’t, and a heavy blow such as a punch to the face could cause blindness).
I was quite confident that Mr Morgan could achieve a partial graft however. He has an excellent reputation for doing successful cornea transplants and is considered a bit of an expert in the field. The thing with something like a cornea transplant is that because the process involved is quite technical, the more experience a person has had at doing it, the more successful the outcome is likely to be. This is especially true of DALK transplant’s, which require the layers of the cornea to be removed individually without piercing those two crucial bottom layers. Im not sure how many operations Mr Morgan has performed, but I know that he’s been doing them for nearly 30 years and has an excellent success rate. It was knowing this that contributed to my decision to have transplant in the first place.
So at 9:30am the nurse came to lead me to theatre. By this point I had some very sexy DVT stockings, a giant green arrow above my right eye, and some giant dad slippers. It was a great look. When we arrived outside the theatre room I got onto the bed and the nurse attached some heart rate pads to my chest. My heart was beating like crazy, and the sound of it beeping so fast didn’t exactly help to calm me down!. Then the anaesthetist attached the anaesthetic tube to a vein in my hand and started to apply the anaesthetic. I should say that all the staff were lovely- they had a calm, friendly manner to them and were making general small talk with me the whole time to take my mind off what was going on. It took a while for the anaesthetic to work- the man kept asking if I felt any different and I was like ‘erm….no’. The he’d ask a minute later and I’d be like ‘errrrrrm, no’. They wheeled me into surgery anyway, and i think I was briefly aware of Mr Morgan saying hello and some of the nurses walking about.
And then….nothing. I had thought that the anaesthetic would work gradually- you’d start to feel sleepy and then just drift off, but it really is instantaneous. One minute you’re awake, the next minute you’re gone. I do seem to remember dreaming while I was asleep, but i’ve no idea what about. My next memory is of vaulting back into consciousness as quickly as I’d left it. Mr Morgan told me they’d just finished the operation and that it had gone really well- they’d managed to make it a partial graft and there had been no complications. Even though I was still pretty groggy that one bit of info was enough to instantly put my mind at rest. I was wheeled back into the ward and climbed into my bed, and then spent the next hour or so slowly coming round from the anaesthetic. This was probably my least favourite part of the whole day- I had a sort of ‘car sickness’ feeling of nausea, and even though mentally I felt quite alert, my body was still in sleep mode. My eye didn’t actually feel too painful- a bit gritty, but nothing unbearable.
By this time it was about 2pm, and I couldn’t believe how the time had seemed to go. I thought the operation would only take an hour or so, but it seemed to have taken about 3. My parents came to visit just after 2pm and spent about an hour there. I felt quite alert by this point, but then the tiredness hit me again and they left so i could sleep. I spent the rest of the afternoon listening to music on my ipod (thank god for my ipod), and also managed to eat something. By about 5pm I had some dinner (Cornish pasty and mashed potato for those hospital loving foodies out there), and then Mr Morgan came round not long after to look at the eye. He said he was really pleased with how it had turned out- the problem with doing a partial graft is that it’s a bit of an inexact science. You don’t want to go too deep into the cornea in case you pierce the lower layers, but at the same time you need to go deep enough so that you can achieve clear, crisp vision. He said that he’d managed to achieve just that- the connection between the donor cornea and the layers of my own was quite clean cut and therefore the vision should be really good as a result.
He said that I shouldn’t worry if i didn’t notice a massive improvement in vision straight away- the cornea is still quite swollen after the operation and takes a while to settle down. Even then, the presence of the stitches will still cause some distortion in the shape, and it’s only after the stitches have been removed (probably about 6-8 months in my case), that you get a proper idea of how your vision will be. Nevertheless, I could notice an immediate difference in my vision. I had a menu in front of me and I could actually read the larger letters- that would have been impossible before surgery. I could also make out people’s faces- their eyes, mouths, nose which before the graft would have just been a flesh coloured blur.
Even today the vision has improved more. I can read the page of a book with my right eye from about 20cm away, which again would have been unthinkable previously. It’s not really very clear or crisp at the moment- it’s almost like looking through a window that someone has wiped a fine layer of grease over. As the cornea begins to become less inflamed and settles down a bit the vision should continue to improve, although like most corneal graft patients I’ll still probably need to wear contact lenses to give me really good vision. The difference now is that contact lenses will actually be able to fit to the shape of my cornea and be able to improve my vision, whereas before they had no chance.
After giving me the once over I was told i could go home and got back about 7pm. I’d been in hospital just under 12 hours. I went to bed pretty early and wore an eye guard to prevent me from rubbing my eye or sleeping on it during the night. I also have to use steroid drops and antibacterial drops four times a day- the steroid drops reduce inflammation and lower the risk of rejection, while the antibacterial drops prevent infection- something the cornea is quite susceptible to because it doesn’t have its own blood supply.
So that’s the worst part over. I couldn’t really have asked it to go any better. I probably wouldn’t want to repeat the experience, but it’s definitely not as bad as i thought it would be, and I’m just glad that it’s over now and I know what I’m dealing with. The next stage will be to hopefully avoid infection and rejection, and try to get as good vision as possible. Watch this space!
DALK Cornea Transplant 