Good evening Bloggets, oh boy, have I got a blog for you? Seriously, only me. This morning I was getting ready to visit our eye hospital. I was dreading it, but the thought of me going with my friend helped. I had loads of questions in my head and I wanted to remember them all. I took the letter from my drawer to hand over and got the money for the car park. Let my Waggatail out in the dog run and I waited outside as it was a lovely sunny day.
My friend was due, a car pulled up. It was her, well, nope, not quite, but our neighbours. She isn’t always on time, so expected her to be running late and she has such an incredible busy life too, she’s not just waiting to take me places.
Ten minutes had passed by. I text her. Nothing. I rang her a few minutes later. Nothing. Oh, she’s driving so will be here in a moment?
My mobile rang. It was her Mum.
“Fiona, Geordie is running a bit late she is having a disaster at home. But your appointment isn’t till half one!””
I had to say, no, oh, no…. Then my semi broken IPhone cut off. So, from my friends Mums perspective, I was cross and cut her off… Haha. I called her back and I was told that my friend was really stressed and her Mum continued saying so with regards to the hospital, I’m not sure. . ..
Then the phone cut off again.
Oh gosh, this would be the third time I wouldn’t be able to go to the hospital and I was told that if I missed this visit, I would be referred back to my GP…
The first time we were on holiday and it was before we bought our ap for our IPhone called KNFB reader, so by the time we scanned it which was a right hassle, I had missed the appointment. The second time, my neighbour said she would take me but not long before the appointment she had to take her daughter to the train station in our town. So, had to cancel again that was when I was told off…
My friend called me and said she would be here in ten minutes, thank goodness.
Bless her she did have a dreadful situation going on and really, I wouldn’t have blamed her at all if she cancelled. But she didn’t she came and off we went to my eye hospital a forty-five-minute drive away.
Parked up, started the long walk to the hospital really, it’s like a village. It’s massive. But we found out where we were meant to go and handed over my letter. The man went quiet for ages and I thought, oh no, please don’t say I have the wrong day? Our ap on our IPhone is good but not always accurate.
Then he said through broken English to take a seat. Thank goodness. My friend told me it was like the United Nations the staff were from all over the world. The first person I saw was a Nurse. She was very English, and not the most helpful of people. She asked me if I could see. I said no. She said can I see letters? I said no, I’m totally blind. She then asked if I could see how many fingers did she have up? I said I can’t see a thing. Then, she asked if I noticed anything different in the room…. Now this is a laugh, good old NHS. I told her she was turning the lights on and off. She said, great, you can see the difference between light and dark? I said no, I can hear that you are flicking the light switch on the wall. She told me someone had stolen her torch and they were expensive so had to use the wall lights.
Then to sit and wait again for the next room which was a very interesting experience. I got my eyes looked at where you put your chin on the machine but then I was taken to a machine I have never had before. It was a new test.
O
K?
Well, seriously, I didn’t know if the poor guy had Parkinson’s or if he was trying to do some kind of faith healing as his hands shook so badly. My face was gently pushed into a rubber like sheet. It wasn’t a nice experience. He told me to look forward and keep my eye still. I felt for those who actually can’t do this? They should be taught differently at hospitals and think about people who have no control in their eyes. I have so I was OK, though I struggled with the keeping my eyes open for so long as they were still stinging from the drops, and to keep your eye open not to blink for such a long time was a slight challenge.
Another wait and another room where I saw an Indian Doctor who was really a lovely person. Again, he kept telling me how clever I was, haha, same as the last consultant did three years ago. What was more worrying was he also kept saying how young I was… At that point, I did wonder who had the bad sight?
Well I asked loads of questions and got many answers. Some surprised me and others shocked me. Some disappointed me and sadly little excited me.
What I learned today was that things you read on line even if it is from a medical journal, are different to what the top consultants believe.
So, the injection that is being trialled right now I read that not only did it prevent those with RP from deteriorating, but the injected virus brought back to life rods and cones, he said that it only helped those who have X linked RP. And not those who have gone blind and they can only prevent the sight that the person has from getting worse.
So, what if I have x linked RP? He said no, he doubts it because the people who normally have X linked RP are either men or much older people. So, my next question, well if you don’t know what kind of RP I have, how do I find out what kind I do have? He said I would have to have another blood test and it would have to be sent away, it wouldn’t help my sight, but the Government are doing a procedure where we get our blood tested and it would help our kids in the future to decide their chances of having a child with my eye disease.
My Son wants to know the risks of him having a baby with RP. I told him that children who can’t see well or kids who are blind these days don’t have it as bad as we did when we were young. I said they are not sent to boarding school now and technology make it so life is easier. But still he worries. I also said that by the time he has kids, possibly there will be something out there mind you, after today, I’m not so sure.
The consultant told me that they are doing trials with people who don’t see light and dark, again, getting back to the light bulb test. In Oxford, they do an operation which is very complex and you have a wire which goes into your head and it links with the glasses that look like sun glasses. The people who have had this done can see shadows and huge letters under a bright light.
(May be the light bulb nurse took part in this trial?)
He told me he didn’t think this would benefit me. So, what would? He said there are no trials right now that would be any good for me and the RP I have…. Now, let’s remember they don’t know what kind I have, I had so much to take in but I think he said that there are 25 different kinds. So, this blood test to see what strength or kind, would take up to two years.
He said that the best thing I can hope for is stem cell. I told him I had read up on where they take the cells from our own hands and place them in the eyes. He said yes, and that trial is going well in the lab, but not yet used on humans in the UK. I asked him what the best hope was for that? He replied that he believes if that is successful in the future, I will be given sight, but not like a sighted person. He also said that having said that, there are new things coming up all the time. He told me because of a Dr Levy in America who charges the earth to do stem cell work all around the world there have been set backs as a few patients have gone blind after the stem cell procedure where they take the cells from the patient’s hip and place them into the eyes.
As stem cell is my only hope, and its stem cell treatment in America that has gone very wrong, what now?
I learned today that my Son has less than 1 % of inheriting my eye disease, well this is great as when I was pregnant, I was told 50 50, but the blood test I was about to have would help to inform him of his real chances.
So, out of there and a visit with the vampire. She took three bottles and then out of the hospital, my friend was a real gem. We went for a coffee and I tried to remember the information I was given. To put today in short.
There are no trials for my eye disease RP in the UK apart from the microchip and the injection of the virus, neither of which would help me.
Stem cell is my only hope, but in America it’s gone very wrong.
Looks like my boy will be OK? And finally, he told me of a breakthrough in research. Last year they managed to for the first time create an eye. So, they can work on it in the lab rather than eyes that are not human like mice/dogs/monkeys.
So, this will make research much faster he also told me that most research ends up by a mistake. So, I have hope for a mistake but the news today wasn’t really positive apart from him saying that he will be very surprised if I don’t get some sort of sight in my life time… Just have to make sure I live a long time because in reality I don’t think anything will occur in the next ten years. I shall keep praying. I believe in people power, so if you have a spare one minute, please can you ask whoever is in control of our destination to please guide the researchers in the right direction to find a breakthrough for Retinitis Pigmentosa in fact for all blindness would be amazing. Then my loving Husband could teach his brain to see too.
In the meanwhile, Bloggets, keep the muscles moving in your eyes so they don’t die. Keep hoping but keep it real too and don’t cry behind closed doors, get out there and live. There is a blind world and a sighted world. I want and dream to remain the blind soul with the sighted spirit and my windows to my soul to be clear and start to have clear glass rather than muddy pools. X
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