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21 Months Since Graft

June 5, 2013

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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…

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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

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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

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2 Comments
  1. Amy Smith permalink

    Just wanted to say thank you for writing these posts. I just found out today I am getting the cross linking done and after having my graft done on the other eye about 18 months ago it felt like my fight with keratoconus was never going to end. So thanks for just telling me how you were feeling after it all.

    • Hey Amy, thanks for your comment and glad to hear the posts have helped! The main thing I would say about cross linking is not to worry if the vision takes a while to come back. Mine was blurry for a while afterwards but it did go back to normal in the end. KC can be a horribly frustrating condition, but keep going and you’ll hopefully get to the point I’m at now where I can wear glasses and get almost 20/20 vision in both eyes. Good luck with it all!

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