Wednesday, October 9

Macular Degeneration & Me

   

Thursday 12 October 2017 is  World Sight Day. WSD is a global event that focuses on bringing attention to blindness and visual impairment. It’s observed on the second Thursday of October each year. I don't need a WSD to remind me of the preciousness of my sight. This is my story of sight loss. And don't be like me: if you think something's not right, go get it checked. Okay?
So, here's what happened with Macular Degeneration & Me...

“Isn’t that rainbow gorgeous?” Loading her shopping in the car next to mine in an Oldham car park, a woman points towards the high moors. Trouble is, she’s pointing to what I am getting used to calling my blind side. Out of politeness I glance around, smile and nod.

She drives away and I test out the rainbow with each eye in turn. My right sees a picture book arc across wet hills; my left a nightmarish smear of jumbled greys. It is Maundy Thursday 2005. I have ‘Wet’ Macular Degeneration in this eye. Shorthand in the media for this condition is usually AMD, with the A standing for Age Related. 40% of sufferers are over seventy-five. Not in my case. I’m thirty-nine years old. I’m going blind because I have very short sight.

Rewind to October 2004. The trip of a lifetime to Disneyland is planned for my husband and I, and our five-year-old daughter. We are due to fly out on a Thursday. Work has been hugely pressurised. I’m exhausted, really need this holiday. I wake late on the Saturday before. In the bathroom, still in the pre-contacts fuzz of the severely myopic, I notice a strange dark patch in the upper right quadrant of my vision. It stays there too long after a blink. It’s like the flashes you see after looking into bright light. But those are reddish and fade. The dark patch stays there, no matter how hard I blink. 

Conscious of a long haul flight in a matter of days, I go to see a local chain opticians to have it checked. The young woman says all is fine, nothing untoward. I leave relieved. I’m just tired. Asked to check some small print figures on a work computer, I find I can’t read them. I must get my contacts checked. Work colleagues faces look a bit strange, as if their right hand features are exaggerated. I’m just tired.

The Mouse and friends live up to expectations. But I’m frantic. The patch seems to have got bigger. When I go to wind down the window of the hire car, the smooth line of the top of the glass seems wavy. I touch it. It’s perfectly straight. On day four, I get up and walk to the kiosk to buy some juice. Through my right eye, the huge palm trees are straight. Through the left, the trunks squiggle in exaggerated curves. Time to tell my husband. As daughter plays around life size Toy Story soldiers, I blurt out what’s happened.

The local hospital is in the Disney Town of Celebration, USA, even more surreal than the theme park. I go to ER (carpets, plants, empty of patients), then to a consultant ophthalmologist (carpets, plants, waiting man in Stetson who offers a game of cards). The consultant examines me, declares he probably knows what it is, tells me to see someone as an emergency when I get back to the UK.

One ruined holiday later, my GP sees me immediately and I am referred to a local eye clinic the same day. They haven’t the equipment to do a full scan so they do a quick exam and make a scan appointment for a couple of weeks’ time at the Manchester Royal Eye Hospital. Returning home, my left eye can no longer see from 12 to 2 on my kitchen clock. It’s a grey patch.

Appointment at the Royal. Fiercely stinging eye drops and injections of fluorescent yellow dye so they can take pictures of my retinas. The nurses are supportive, the technician doing the scan is very thorough. I ask him what he’s seen. He says something can be done, but it must be quick. His report back to the local hospital in Bury will be marked urgent. I am to call Bury in a week. Meanwhile, I pee yellow marker pen for forty-eight hours.

I call Bury. The secretary is sniffy. Nothing urgent about what’s come back. I can wait till December. I wait. More of clock face disappears. Horribly, what I can see of human faces starts to distort. People turn into fairground mirrors, into caricatures with features stretched and twisted.

December appointment at Bury. I am rigid with hope. The middle-aged, arrogant, slightly grubby SHO produces a model of an eye. He explains to me that the eye is a like a jelly and it shrinks as we get older. This is causing my sight loss. There is nothing they can do. Just hope it doesn’t spread to the other eye. Behind him is a twelve-step poster on how to administer bad news. The December afternoon is black with rain. I phone my husband to come and take me home. I’m crying so hard he can’t make out a word.

That evening, I watch my six-year-old daughter as she drinks her supper milk. My right eye sees her soft curls, the perfect peach of her cheeks. She looks up at me with her smile that makes my heart surge. I try with the left. I can only glimpse her at the edges of my vision. I can no longer see her face.

February 2005. A work colleague inquires how I am. I tell him. His response is immediate: get my care transferred to the Royal. If anyone can help, they can. I contact my GP. He listens, as ever, and says he will do what he can.

After I’ve gone, he picks up the phone to the Royal and tracks down the technician who did my scan. The technician explains my condition can be treated but urgency is greater then ever. Brief hiccup while referral gets lost. GP persists with another.

I receive an urgent call from the Royal. Come next week. I do. I am tested by the optometrist. I have lost the last five rows of his chart in my left eye. More drops and yellow dye, more scans. The consultant ophthalmologist confirms I have ‘Wet’ Macular Degeneration. It is caused by the growth of abnormal blood vessels in the retina which can leak and lead to scarring and loss of central vision.  The scan shows the back of my eye as huge red planet, with the leak a tiny white space ship slap bang on the macula. He says he will try Photo Dynamic Therapy, a type of cold laser that works with a dye (Visudyne) to eliminate the new blood vessel. They can probably halt the progress of the sight loss, but not improve it. I ask if I should avoid any risk of pregnancy with such chemicals. He looks startled. To be fair, a nurse had told me the average age in the clinic is seventy-eight.

Monday of Easter week, day of the treatment. I am weighed and measured so they can calculate the correct amount of Visudyne. I am hooked up to the computer that will administer it. My nurse stays with me, a gentle hand rubbing my shoulder as the blue liquid enters my veins. An alarm link tells the consultant exactly when I must have the laser. It is administered for precisely fifty seconds. I leave the clinic covered from head to foot, including hat and gloves. I cannot be in direct daylight for forty-eight hours as it would trigger a reaction with the dye that would burn my skin. By night two, I am utterly fed up and have several large glasses of wine. My liver is already dealing with Visudyne. I have the worst hangover of my life the next day.

I return to work to lots of vampire jokes, relieved to only have two days of work before the Easter break. Shopping at Sainsbury’s, I’m asked to look at that rainbow. I wish.  

Easter Saturday morning, I go to write a note on the wall planner. Hang on. I can see the tip of the pencil on the paper. With my left eye. It’s cloudy, but it’s there. I drive to the shops. Telegraph poles are straightening. Still curvy, but no more zigzags.

It clears. It all clears over the next couple of weeks. Faces come back. Proper, real, faces. No fairground mirrors. In June, I return to the Royal for the next set of treatment. The cheery optometrist goes to assess my sight. I tell him it’s better. He nods, but I can tell he doesn’t believe me. Then tests. I get a ‘gosh’. I’ve regained all five lost lines of the chart. My left eye is now better than my right. The Royal have done it. They fixed me.


Saint Lucy, Patron Saint of the Blind14th C, Public Domain via Wikimedia Commons
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Postscript, October 2017
PDT has since been taken over by more effective treatments. In 2005, it was the best chance. A very special hospital full of experts gave me the best they had, and it worked. Thirteen years on, I can see my daughter’s face, my husband’s. I’ve been able to carry on writing, reading, driving, seeing the most amazing parts of the world. Living. And living to the best quality of life, not condemned to a preventable disability. The only reminders are a very slight wave on straight lines and a twice-weekly check by looking at an Amsler Grid.
Yes, I got lucky. But I also got the right treatment. Your eyes are precious. If something isn’t looking right, get it checked. Okay?


9 comments:

  1. So glad you received the right treatment Elaine. Your message about seeking treatment right away is well taken!

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    1. Thanks Susan! And of course I'm so lucky to have been born in the right part of the world at the right time. If either of those factors were not so, things would have been very different.

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  2. I just had PDT today myopia and central serous retinopathy but not AMD. You say PDT has given way to better treatments. What else have you had?

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    1. Hope you're well on the road to recovery by now, Rebecca. I was lucky enough not to need anything other than that one dose of PDT.

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  3. I'm so glad you got through it as well as you did! Even with all the delays caused by wrong diagnoses.

    I went through quite the eye ordeal 30+ years ago when my daughter poked me and cut my eye.... twice! After cleaning and medication, I wore a blindfold for a week and learned what blind is like.

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  4. Made me cry. I have a lot of trouble with my eyes and my uncle went completely blind, and I'm scared to death of that. I'm so glad you were treated and it worked. Thank you for this post. Sharing x

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    1. Thanks for your lovely comments, Andrea. I'm so sorry to hear you have problems and it is very frightening. One thing we can hold on to is that there are enormous advances all the time. If I had had MD even 15 years ago it would have been a different story. I hope you can be free of your worries, too. Take care. x

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