Keratoconus, my story by Rae, part 4, rejection!

This keratoconus is a long haul eh folks? So for me personally the healing process after the corneal graft was slow. This is normal for me – I bruise really easily and any cuts and bruises take ages to heal- so a corneal graft wasn’t going to be any different. This did mean however that wearing lens in the grafted eye would be a longer wait than for some. My vision in the grafted eye was rubbish, the graft was super clear and smooth but my underlying vision remained poor, with a huge astigmatism. Glasses were still out of the question, and contact lenses were yet to be tried. Pretty frustrating it must be said. I was no better off than before the graft at this point, and often in fits of shocking self pity I would wonder why I bothered with the graft at all blah blah…

I spent the first 18 months keeping the eye shut (not deliberately I might add) it was very light sensitive indeed. Then in August 2010 only a few months after I had started a new job (sigh) my eye was playing up and watering a bit. Nothing new there really.

By the time I went to bed that night it was pretty sore. I had some eye drops, and my usual FML anti rejection eye drops too. I took a painkiller and went to bed.

I woke up in what only can be described as excruciating agony at about 5am. Unbelievable pain of a nature which I had never experienced before, and the feeling that my own eye was trying to force its way out of my face, literally. A most peculiar sensation. I knew then what was going on, I recognised the pain if not the other signs- this was a graft rejection. My eye wasn’t just watering it was filling up with tears and these were just plopping out of the eye like a waterfall, an untamed leaky dam. My OH was pretty freaked out by the whole thing.

Sometimes the body’s immune system may reject the new tissue as it can any ‘foreign body’ which is ostensibly what a donated cornea is. Figures vary but roughly a tenth of corneal transplant patients have problems with rejection in the short term and about a third suffer rejection symptoms within the first five years after surgery. Rejection can occur months or even years after the transplant. Transplants involving both eyes increase the risk of rejection. Oddly older patients tend to have fewer problems with rejection

Signs of corneal graft rejection:


Redness: graft rejection may be associated with eye redness

Sensitivity: rejection may cause increased sensitivity to light

Vision: rejection can cause decreased vision, particularly foggy or cloudy vision

Pain: rejection can cause discomfort, irritation or foreign body sensation

At 7am I went to the Eye Clinic at Worthing Hospital- luckily for me it was a Friday and I knew they were open or I would have been faced with going to my local A&E, which I didn’t fancy- I needed to know that the people I saw knew what was going on and how to deal with it. By now I was in so much pain they could have poked the eye out and I would have willingly let them, but I settled for some mega strength steroids (a jab in the eye) and tablets, and 14 days worth to take home, with the dosage reducing over time.

At this stage when caught early and treated correctly, most corneal grafts that reject are saved and there is no lasting damage. Actual proper rejection remains fairly rare. This was the case for me. I had a week off work, avoided the computer, took the drugs and after two weeks all was well. And this has not happened since either. I am still on twice a day FML drops as recommended by my surgeon.

In fact, in December 2010 my surgeon was so pleased with my recovery and the graft itself (text book he says) that he referred me to the contact lens fitter to see what we could do about the vision in the grafted eye now that I had a stable and keratoconus free cornea…….

Why me?

Most rejection episodes occur in the first year after a graft or transplant, mine was a bit later on, but sometimes a rejection episode may occur many years later, so it is important to always be vigilant for the signs of rejection. I knew what to expect and although it was a shock I knew what to do. About 1 out of 4 cornea transplant recipients experiences a graft rejection episode like this. If the corneal transplant rejection episode is detected early, it can be reversed 9 out of 10 times using medication, and damage to the new cornea will be minimal. Rejection that results in permanent clouding of the cornea transplant occurs in less than 5% of cases. If the graft becomes cloudy due to rejection, it can usually be replaced with a new cornea, although you do then have a higher risk of further rejections.

With 1 in 4 with keratoconus needing a graft, they are the most common and also the most successful of all human transplant operations, some 97% of grafts are 100% successful with no complications. The first one was in 1904, and there have been hundreds of thousands since.

So, it is all OK now and I just had to wait for the contact lens appointment….


3 thoughts on “Keratoconus, my story by Rae, part 4, rejection!

  1. hi rae i am still hanging on to my both K eyez. when i read all stories I just want to say you are all brave indeed.. i manage with gp contacts and the irritation if dust itchiness and dust. even my own cooking purfumes and paint fumes can irritate my eyes until it burn so i try to avoid hanging around thd room for no longer than a few minutes and leave. but i am still gratefull i can see with lenses and not at all. Thank you for your encouragement and support.x

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