So, it’s over to Caroline to offer some insight into living with OOKP.
My road on to the decision to have an OOKP, started back in 1995, when I had my first corneal transplant performed at Moorfields Eye Hospital. This was done, not because of any accident or auto-immune problem or SJS, but partly due to an eye condition I have, called Peters Anomaly.
This corneal transplant operation was a great success and I was absolutely delighted and blessed to be able to see 6/6, 6/9, which thrilled me to bits. However, due to the condition, Peters Anomaly, this corneal transplant began failing at around the 2.5 year mark and this began a cycle of multiple corneal transplants over a 24 year period, where I received a new graft, my eye sight was brilliant, the graft started failing, they would re-graft, my eyesight was brilliant and then it would fail again and so the process would just keep going. Every graft I had, enabled me to see excellent. However, by the time of corneal graft number 8, a decision was made, that it was detrimental to keep re-grafting and this is where I had to make a decision regarding the OOKP.
I’m sure, like many of you, this was a decision that was not taken lightly, due to the obvious factors of how it would look, how would people react, was I doing the right thing. In the end, I made my own decision and I knew that I wanted to keep as much vision as was possible, I did not want to go blind.
A referral was made by my wonderful Ophthalmologist, Professor Francisco Figueiredo, who had operated on my right eye for every corneal graft I had, since my first one at Moorfields and I must give him the honour and credit he deserves, as without his input and exceptional gift, I would not be seeing today and would not have had the opportunity to have an OOKP.
After meeting Profesor Christopher Liu over several visits, my first procedure was done November 2019. I left Newcastle Upon Tyne that day, nervous, apprehensive, concerned, however, still determined to go ahead and expect great things. I personally found Stage 1, much harder than stage 2, in that it was more invasive, especially the pain and suffering with regards to the oral procedure. I believe that even though stage 1 proved a challenge for Professor Liu, it turned out to be a success and was able to move on to stage 2.
This took place in January 2020, just before lock-down and although this stage, I felt, was much less painful, it caused me some anxiety, as I was expecting to see well straight away and this was not the case for me. It took a few months before my eye began to improve and I was able to see quite clearly. I was absolutely delighted and even though my vision was not as good as it had been previously, it was still pretty good and I was able to be totally independent, return to work as a Personal Secretary to 5 Consultant Paediatricians, a job I have done now for 38 years. I am sure I don’t need to tell any of you, the feeling of being able to see well again. Seeing well, is such a huge gift, something that, until something goes wrong, we take for granted.
A year after stage 2, out of the blue, I had a retinal detachment and thanks to the great team at Moorfields, they managed to save my vision, however, due to the retina being partially detached around the periphery, (thankfully not central), they had to fill the eye with silicone oil, in order to help keep the retina attached and because that eye has had many, many operations over the years and its fragility, they are unable to remove the oil. This oil has caused my vision to become extremely affected, as if trying to look through steam when opening a door to a steam room in a gym. Depending on the light, etc, my vision can be quite variable, when the sky is blue and the sun is at its highest in the sky and behind me, then I can see the best. If it is a grey day and there is not much contrast, then things are much worse.
I have overcome the problem of losing my independence to a certain degree, by now having the most wonderful Guide Dog called David and he is an absolute blessing. I can go anywhere, do anything with him, nothing stops me and have made many new friends because of him.
I am of course, extremely happy to still be able to see to a moderate degree and thank the Lord every day for the opportunities set before me. I have no regrets, regrets only take you to places you do not want to be and I have a wonderful life and spend special times with friends and family, not taking anything for granted.
A special thank you to Mr Perez and his team, for their unbelievable dedication and care and to all of you out there, having gone through the OOK process, that regardless of what level of vision was achieved, it has hopefully made lives better in some way , both emotionally and physically. Keep your spirits high, believe in all good things and life will be good.
Take care veryone.
Caroline
EDITORS NOTES.
What a fantastic story. As often occurs with OOKP patients, it;s not always plain sailing, there are obstacles encountered, but by addressing these, and talking to others on the OOKP journey, we can still gain a great deal from life.
Thanks Caroline 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.