Cornea transplant saves Alexandra’s sight – sign up to be an organ donor

After countless wrong numbers being dialled, whilst trying to read telephone numbers in a directory, florist Alexandra Burns realised there was something wrong with her eyes.

 

Alexandra, from Wythenshawe, Manchester, was only 19 when she was told she needed a cornea transplant – or lose her sight! Now she wants to encourage more people to sign up to become NHS organ donors.

 

She said: ‘‘The optician told me to go to the doctors as soon as possible so I could be given a letter to go to A&E to be referred to the eye hospital quicker.’’

 

‘‘I started panicking and going hot and red as I didn’t know what was wrong with me. He believed I had an eye condition called keratoconus which was quite rare at the time. The eye hospital confirmed my diagnosis.’’

 

Keratoconus is a progressive eye disease that affects the cornea, the clear front surface of the eye. The cornea becomes thinner and more cone-shaped, instead of having a rounder curve.

 

The cone-shape deflects light as it enters the eye and causes distorted vision.

 

Alexandra had a cornea transplant in her left eye in the 1990s.  The transplant involved removing the damaged or infected cornea, replacing it with a donated cornea and having it stitched onto the eye.

 

Now, aged 50, and working as a customer assistant at Tesco in Baguley, she also has the condition in her right eye, but it remains stable and her vision is aided by a contact lens.

 

Alexandra said: ‘‘The first option before doing a transplant, is to try lenses. They try hundreds of contact lenses until they get one that fits you. With my right eye that was fine, but my left eye they couldn’t get one that would stay on, they tried different sizes, everything you can think of and nothing was working.

 

‘‘So, in the end the last resort is to do a cornea transplant.’’

 

 

Alexandra said: ‘‘The first transplant didn’t really make much difference, the cornea continued to bulge out and distort my vision. So, I had a second transplant nearly three years ago now.

 

‘‘This transplant is probably better, but I’m still having trouble getting a contact lens that is comfortable, they can get one that fits, but to get the comfort it’s difficult.’’

 

She explained: ‘‘I can’t just go to a normal optician and get them because they are a ridged lens. So, it’s just getting the shape right and I’m still not there yet.

 

‘‘Before the transplant, there was no way they could bring my sight up, the only way I could see through my left eye was through a pin hole.

 

‘‘I have my contact lenses changed every six months, I wear them constantly, so they wear out and they get scratched.

 

‘‘Scratches can cause infections and you can lose your sight.

 

‘‘A few years ago, I had an infection in my cornea and it got right inside a scratch and that was bad. Things like that you’ve just got to buy bimatoprost online and be careful and vigilant.

 

‘‘I have drops that I put in every other day, just to stop any rejection. You can reject, but you usually would have rejected by now. I’ve taken to the donated cornea well.’’

 

The recovery rate after a cornea transplant is around two years. After this the stitches can be taken out, only if everything has healed over, and the cornea has tightened.

 

She said: ‘‘Even when it healed it’s ongoing, I’ll be under a consultant for the rest of my life.

 

‘‘I have good days and bad days, sometimes when I come in work my eyes can play up all day.

 

‘‘People know in work, they will say are you having problems today? My eyes will be bright red, and it can be caused by the smallest bit of dust or from rubbing my eye.

‘‘It is a daily battle sometimes.’’

Alexandra has praised the in-store opticians at Tesco where she works, for helping her on countless occasions.

 

She said: ‘‘The opticians know my condition, they are so helpful. If I need to go and clean my lens or if I need them to look if there’s any scratches, they are always willing.’’

 

Although she still isn’t at the legal requirement to drive, and she has bad days where her eyes are sore, she has learnt to live with the sight she does have.

 

She said: ‘‘If you’ve never had good sight you can never miss it anyway. To somebody else it would probably be frightening to them, but I’ve never known any different, so it doesn’t bother me.

 

‘‘I have adapted to my sight and because I have the lens in my right eye that does all the work really, I can see enough. Sometimes, it’s reading signs and stuff like that I find difficult.

 

‘‘As soon as I wake up, until I go to bed, I rely on my lenses. Without them I wouldn’t be able to come to work. I couldn’t cross a road. I wouldn’t see what’s coming down the road.

 

‘‘It can be better, and it will be better in the future, but I’ve just got to bear with it.’’

 

Being a recipient of two donated corneas has made Alexandra an avid supporter of organ donation.

 

Alexandra said: ‘‘ I always tell my husband Andy, that if anything happens to me, he must donate my organs. I’ve been a recipient twice, I’ve got to give that back.

 

‘‘If it wasn’t for these people who donate, many of us wouldn’t be here now.

 

‘‘In my case I would have lost my sight, but I’d still be alive, I know people who have needed blood and organ transplants and they’ve relied on that to live.’’

 

After her second transplant, the Great North Run was taking place and she heard about a man who was running for organ donation.

 

She explained: ‘‘He was taking thank you letters from people who had been given donated organs and was planning to put all the letters in a box and carrying it with him while he ran.

 

‘‘I sent him a letter to put in his box to run with. I don’t know who donated my corneas, but it felt like something I should do, to say thank you.

 

‘‘I feel so strongly about that, I wouldn’t be able to wake up and look out of these eyes without it.’’

 

For more information about organ and tissue donation click here