Hi everyone. My name is Irene and this is my OOKP story,
I was born in Cardiff, a little after the end of the 2nd World War (the dark ages, when you think how much has changed.) I was an only child, as my mother was advised not to have more children due to health difficulties during pregnancy.
Things were fine; until at 5 years old; I was given Phenobarbitone, after concussion caused by a fall, which is when the dreaded Stevens Johnson Syndrome took hold.
I don’t remember much about my stay in hospital, but I do remember being covered with gentian violet, and wearing little waistcoats made from gamgee. The ladies in the medical ward above the children’s ward made the little garments from the rolls of gauge covered cotton wool.
Years later, whilst doing my nursing training, I would work on both these wards! I think my brain has shut down a lot of memories from this time, but I know my mother had a very difficult time taking me from one specialist to another and I even spent time in some sort of convalescence home in Kent!
While I was there, I’m told that I wrote letters to my parents, that looked like code or something, but if you sounded out each letter, they made sense. I’m not good at spelling even today but thank goodness for spell checkers on the PC!
Thankfully my general health improved and I returned to school and enjoyed a normal childhood, apart from flare-ups of inflammation and infections in my eyes. I just scraped through my eleven plus examinations, but was able to sit “O” level GCE exams. By then I knew that I wanted to be a nurse, so it was very important that I got good grades, to prove that I could study and my eye problems would not stop me working.
My sight was fine in my best eye at this time, but gradually; over the years; my cornea became scarred and ulcerated. During the early 70s, I was referred to Moorefields under the wonderful care of Mr Dart. This was a difficult and often painful time; and I even became clinically depressed at one point; and my marriage broke down, with myself and my young son going back to live with my mother. I must say that my husband did nothing wrong, things just got too much for me.
After many corneal ulcers, my left cornea perforated and I received the first of a number of corneal grafts. Some lasted longer than others, but eventually I was advised to have the eye covered with a skin graft, in the hope that if the pressure does not cause problems, I would have an eye ready for science to come up with an answer”. And eventually it did!
We saw the OOKP procedure on a TV program called Tomorrow’s World, and during my next check up, I mentioned it to Mr Dart, who replied that he was going to ask me if I would like to be referred to Professor Liu, to see if I would be a suitable patient. I said “yes” and I was suitable. I was put on the waiting list.
About a year past and I thought long and hard about the operation during that time. I had married again and had two more sons. I had just had guide dog number 3, and I was mobile, busy and useful. What if it didn’t work? All the trauma would be for nothing.
I am a Christian and many years ago, I was prayed over at a healing service for my sight to be restored, but I felt God was saying “in the fullness of time,” which I took to mean in heaven. My Braille was not very good (like you Martin) but I pulled out my Braille copy of St John’s gospel and opened it randomly. I managed to work out which story I’d come across and got my good friend to read it to me.
The story was about Jesus healing a blind man. He sends the man away to wash the mud paste from his eyes and he could see when he did.
I know this wouldn’t work for everyone; but it did for me; and I felt that I must give the operation a try. I had the first part of the procedure in March 1999, and the second part in June. I’ll never forget the moment when Professor Liu took down the dressing for the first time and started to clean my eye,
I realised that I could see his watch. He asked me if I could see the time, which I could! I don’t know who was the happiest; him or me!
It took a while to get used to this wonderful gift of sight. I still have problems with scanning down and to the right when I’m being engrossed with something in the distance, too nosy for my own good. It also took me ages to realise that I didn’t have to go into a room to look for something, when I could see it from the doorway!
I’ve had a few hiccups over the years, such as a detached retina a few years after the OOKP operation, and as the original graft was thinning, I needed to have a new OOKP procedure in 2011.
After a problem with the tooth and optic cylinder not sticking, the second operation was as successful as the first. I can read very small print with the help of reading glasses, enjoy films and TV and am able to travel independently; reading signs and notices etc, but the thing that gave me so much pleasure, was being able to see people returning my smile!
I was able to get a job in social care; which I loved; and worked part time until I was 70. I have also had great joy helping with my 4 grandsons. (We don’t seem to do girls in my family)
Now, we are back in Moorfields, full circle, and it has been a joy to meet Mr Perez, and all the brilliant people who give such great care and kindness when I visit for a check up. I will be eternally grateful to Professor Liu, for giving me 25years of near normal sight. Also all the people who help me in so many different ways at Brighton over the years.
I hope my story will be of help and be of interest to other people considering having an OOKP procedure.
EDITORS NOTES.
What a fantastic story. As many of us find, it;s not always plain sailing, there are obstacles along the way, but if we can deal with these, by talking to others on the OOKP journey, we can still gain a great deal from life.
Thank you Irene and I hope others gain from this story. If you have a story of your journey, please submit it. You never know, it may be just a single sentence in your story, which changes the life of another.