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And Then Comes the Iodine – Lucentis treatment for Diabetic Macular Oedema

“Look at the nurse’s finger.” The consultant stated calmly as the nurse waggled her finger gently above my head, “The needle is about to go in, DO NOT move your eye…”

All I could think of, at this moment, was moving my eye. The nurse was waggling her finger. I was following it with my gaze. Surely that meant that I was moving my eye?

“All done,” he stated, confidently, “We just need some ointment in there and then we’ll get that clamp out.”

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I’ve had diabetes for, at the time of writing, about 19 years, give or take. It’s not all been plain sailing. Through my teenage years and early adulthood, controlling my blood sugars seemed a secondary concern to sex, drugs and rock and roll (though I had precious little of the former!) and I’d never really looked into the long term consequences of my condition. Yes, I knew there was a risk of losing limbs, heart disease, blindness and so on, but I sort of assumed they would be sudden. They’re not.

Two or three years ago, I was diagnosed as having proliferative diabetic retinopathy. Essentially this means that the blood vessels in your eye get blocked, new, weaker vessels grow to get around the blockage, and then because they’re weak, they burst. This causes blood to accumulate over the retina and results in, mainly temporary, loss of vision in the areas affected. This is treated by burning the retina with a laser to seal the vessels and reduce oxygen supply to the retina so that new capillaries don’t grow. As a consequence, you lose much of your peripheral vision but can still see straight ahead.

Unfortunately, for me, this treatment has left me with limited vision, and hasn’t wholly worked. A few weeks ago I was diagnosed with Diabetic Macular Oedema (DMO). This is the next stage, where the central vision part of the eye gets pushed away from the nerve due to the blood. It’s this that causes blindness. Your macular changes shape, which is a bit disorientating, and slowly, you lose vision.

Recently, the NHS approved Lucentis for patients with DMO. It’s shown to work in not only halting DMO from getting worse, but in some cases improving vision. Lucentis, however, is expensive. The list price is $1200 per injection. My consultant applied for emergency funding and I was treated 2 days ago. There’s not a whole lot of detail about what the treatment is like, other than you receive an injection into the white of your eye. Once a month, probably for the next 6 or 7 months.

As a huge fan of injections in my eyes I was incredibly excited by this… Terrified might be a better description. But, you know what, the injection part was easy. I’d already received a dose of laser to my retina earlier on that day, so my eye was pretty scratched up. I’ll go into more detail on this in a future post, when I’ve got the pictures (they’re incredible). I went into the treatment room and was told to lay on the bed. That’s when the consultant brought out the clamp.

Assuming you’ve seen ‘A Clockwork Orange’, you’ll know exactly what this clamp does. It isn’t painful, but it is.. weird. You roll your eye around your head to keep it moist. No blinking. No attempting to blink either, that can squeeze out the clamp and then it would hurt. A mild anaesthetic next. But not enough.
Because then comes the iodine…

I cannot describe to you the pain of iodine in your eye when said eye is already red raw. It reminded me of Tyler Durden’s soap kiss in ‘Fight Club’, only on my eyeball. It was on fire, and I wasn’t happy about it. Next came the other cleaning fluids, which depending on their colour alter your vision like an Instagram filter, a quick cleanse with water and then it’s the needle. I barely noticed the needle.

Five minutes. That’s all it took, but it was scary as hell, and my eye hurt too much to open for a short while after. The ordeal was over. For my right eye. For left eye, repeat steps 1 – 4…

I was in a state afterwards. Thankfully I had my wonderful lady to look after me, to guide me back to the car and to give me a hug. It’s not an easy thing to go through. It hurts, and it continues to sting now. It’s worth it though, if it means I get to watch my kids grow up, it’s worth it. The antibiotics I have to put in my eye are probably going to become as much a part of my life as insulin, at least for a while. But it’s worth it.

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