ANSWERS AT THE HOSPITAL

So this day I was to go to the hospital. The day after the grief of losing my BB. How could I face anyone being horrible today? This was the first time I was to visit this teaching hospital, first time ever I was to visit an expert for my eye condition in all my life. Before it was just eye Doctors, I’m talking about the times in the UK, not abroad.

My dear friend Geordie took me. Thank God, as you should see the size of it? Oh gosh, it’s more like an airport. Before getting to the hospital, I was to be sociable and not cry in front of my friend and her friend who we visited beforehand.

Bless Geordie; she was anxious about finding the place as its miles away from here. But she did amazingly well. I kind of was num. I didn’t want to be there, but must see what this blur is on my eye and need to see what the future holds for RP treatments and, or, cures?

But how I needed to be home just to be how I felt. I couldn’t act happy Fi this day and I was so afraid to break down in front of my friend, though she is so lovely and understanding. I’m telling you; no way could I do that place on my own. Even to park, my friend went into a multi-story car park. We went up and up to the very top floor, there were two spaces. It was packed.

So we got to the reception after walking outside for about ten minutes and in doors for a couple of minutes. It didn’t have the feeling of a hospital at all, as I said more like an airport, but this was no holiday destination.

In broken English, the receptionist told us kindly we would be seen just to take a seat. My friend and I had a coffee and started to chat about life. She knew I was on the edge and just talked me like I did her to the end of conversations.

What would happen today? What tests would I get but more importantly, what questions would I be asked and how I would feel after them and would my questions be answered?

Then my name was called.

My friend came in with me and never before have I seen such an informative nurse and not only that, but she knew what RP was this is very rare for a blooming Doctor, let alone a nurse.

She asked the same question,

“Can you see?”

When I said no, she still had to do her test; I think this is a stage they can really skip? It’s as though they don’t believe you.

But she explained genes and was great, amazing it was in English that was understandable, unlike some on line sites you can visit where you need a medical degree to comprehend the facts of Retinitis pigmentosa.

 The conclusion was I was just unlucky at birth.

Well, I could have told them that?

She said because I have had RP since birth, it means I have recessive RP. This means     there has to be a fault on both copies of the relevant gene. An infected person inherits one faulty gene from each parent, who is a carrier. Each parent will have one normal and one faulty copy of the gene and they don’t have any symptoms of RP.    In autosomal recessive RP, one copy is enough to keep the retina healthy, so carriers have normal vision, but if that carrier were to have a child with another person with a faulty gene, then they could pass on RP so that child will be effected and could end up facing blindness. I am unlucky, because obviously the oven who had me had the faulty gene and the thing who went with her to create me, also had this gene, hence why I have this condition. Because I have had my sight problems since birth, and my Son doesn’t show early signs of RP, looks like he is going to be OK, but he will be a carrier for sure, so let’s hope his future wife will have normal genes? But the good news is there is hope. So in short, people have good and bad genes, sadly, I was mixed with two bad, so didn’t have a healthy gene to fall back on, or I would be a carrier rather than the infected.

I’m now hoping that I am not as confusing as anything that you may have read? I was exhausted when I came out of the hospital, as there was so much to take in.

 

Good news is I think my Son will be OK, so I can stop being paranoid about his eyes, watching out for how he copes in the dark and how he will be driving and so on. Now when it comes to his children? Well, this is amazing; I went into the Doctors surgery. My friend stayed reading her book in the waiting room. Bless her, she may have been interested but I feared she would be bored, so I went alone. Actually, thinking about it, I bet she would have been interested, as the Doctor who was charming and so very normal, like your mate, not at all condescending but just how he should be.

I was shocked as he looked at my eyes telling me facts and so on, that the door kept opening and closing people coming in and out. Without asking if they could interrupt and they were. It was difficult to concentrate with all the people and an immature girl giggling. She was really annoying but the rest of the people I learned must be students, were respectful.

    Half way through my time with this Doctor, I learned that the nurse was there too, the one who I first saw. Oh God, really, so much to learn about. But you know, he had time, he didn’t rush me at all. He spoke clearly and I was rather sad to learn the blur on my eye is part of my RP condition. So now three diagnoses on that, he said nothing he could do it was just my sight problem. But wait Bloggets, wait for this, he told me that there for sure would be help somehow for my sight, within five ten years. Now I know this has been said before to people with Retinitis pigmentosa, but not in the way he explained. He was real, didn’t build something up just was real. He said there is so much out there now, it’s all down to money though, for example, to get my blood tested and for me to go onto a program for possible future treatments, they are waiting for a grant and would need about £15,000000 just to do run tests? This is before money for treatments. How bad is that? But he did say, if they ever get this grant, he for sure would contact me. Now this is not for a cure, all they can do now is to help to see shapes. So my dream to see like I used to I think is out of the window, but he also said, that in my life time, he is sure that the improvement would be better and bigger. Oh please? This was a breakthrough for me and I pleaded with him to pick me if he needed someone with my Rp. I told him I was fed up to the back teeth of not being able to see and life is tough as I’m sure it is for millions of RP sufferers. To have no one in the family to fall back on for help is hard believe me. A lot of my friends who can’t see, live in this horrible life, but cope so well, as Hub and I do, but their lives are made easier by having parents or helpful other relatives. It’s Hub and myself and one day I want to take him on that river boat and enjoy the views. I dream to go back to Dollywood in America. To relive the wonders of that place and the music. It won’t be the same as we won’t be with our friends from the US, as they live in Mexico now, but it was probably the most amazing holiday I have ever had, and Hub was spending time with teen on the rides so missed out on the wonderful music. I want to read letters with ease. See colours and flowers. To see the faces of my dogs, I never saw BB, I really hope I will see LC and Waggatail? To see my Son before he leaves my life, as I know he will soon if he marries the person he is with now. Talking of that, Teens gf made us some cakes the other day. Teen brought them back for us. That was kind!

 

Sorry that is all I can tell you about that.

So RP sufferers, it’s not the end. We are money and tests away from light.

With love.