On Tuesday evening I got a call from a consultant at the eye unit, very nice consultant Mr T phoned and apologised for all the mix ups and revealed that they are still unable to find 10 years worth of my notes, the early ones about eye sugary I had at 11 weeks old onwards.
He said he wanted me to go in today (Wednesday) for some tests and to see a different consultant that specialises in the back of the eye Mr S.
So today I dropped everything and headed off to the eye unit/day centre for 1 o’clock.
The bus I normally take is called the U6H and is part of the Uni Link service, this goes round half of the world and then goes to the eye unit taking at least an hour. I took a different route to the bus stop than I normally would to try and save time, on the way I realised I was going to pass the First Buses office so popped in there to ask if there was a quicker bus. Less than 5 Minutes later I was on the number 4 heading to the hospital even better it took less than 20 minutes!
(Oh dear! I have just realised what a sad anorak I sound like sitting here blogging about bus timetables!)
So anyway arrived a bit early and was told to basically go away by the receptionist and come back at my appointment time, so I went for a walk.
Then I did my distance vision test, and only managed finger counting with my right eye. This is where the nurse or whoever stands about a meter away from you and holds up fingers to see if you can count them.
That’s a deterioration because I can normally see the top letter of the eye chart from about 2-3 feet away, so great I have probably lost a bit tiny bit of vision, or quite possibly I am just having a bad day and if I where to do the test again tomorrow would do better who knows!
Then I got sent through to a new waiting room with comfy chairs and a water cooler absolute luxury compared to the other waiting room! I then got a call from a nurse who was tasked with explaining everything to me.
My pupils don’t really get bigger or smaller with changes in lighting condition’s so the nurse was unsure whether there was any point putting drops in my eyes to dilate my pupils so had to go off and ask a few people. 5 minutes later she re-appeared with a tissue for me so immediately knew it was eye drop time. I am indeed special and required 2 different types of eye drops to try and make the muscles in my iris dilate.
Then I had a few tests, a scan of the back of my eye which was like watching a funky laser light show and quite fun.
Then I had the big event as it where a Fundus Fluorescein Angeiography Basically in super easy to understand Jemma speak they inject you with dye and then take loads of pictures of the back of your eye.
The dye is essential so that the doctor who gets the pictures can see the blood vessels and stuff at the back of the eye, its the whole point of the test. I was told about the risks and that it would turn my wee florescent yellow, like the colour of Gus’ harness and that my skin would probably turn yellow too. when the dye hits the blood vessels of the stomach it would probably make me feel sick and quite often people are sick, sometimes people also become breathless and faint, and rarely people have a minor skin reaction such as a rash. Then I got the talk about the possibility of going into anaphylactic shock and death and the need for resuscitation.
At this point I defiantly started to get nervous, I love the way that after telling me that there was a slim chance of having a sever reaction and death the nurse took my blood pressure and heart rate! I’m sure you can guess what that was like.
Then I got injected with the dye, I was very impressed that the nurse managed to find a vein on her first attempt and in the dye went.
You will be pleased to hear that I didn’t die instantly or puke all over them, but I did fell very sick and the room did spin for a few seconds and then all was fine. Oh and the nurse was right my wee is still very very highlighter yellow!
So then I went and sat in the big waiting room with no comfy chairs or water fountains, even worse I was sat with a window behind me that had to be kept locked, it was rather hot! Luckily I was not sat there long and consultant called me in I’m going to abbreviated what he said and simplify it a bit.
Basically because I am short sighted and my eyeball is the wrong shape it has developed weak areas, in these weak areas blood vessels have formed that should not be there. These blood vessels have popped a bit, it might have been a few of them or just one, so there is a collection of blood in the jelly bit of my eye. The blood will take about 6 months to be reabsorbed into my body and go away, but the blood vessels will not go away.
This is the bad news bit, there is every chance that I will have another submacular haemorrhage it could be bigger and completely destroy the vision in my right eye leaving me with nothing in that eye (my left eye is completely fine), Or I could never have another bleed again.
Nothing can be done about the collection of blood already in my eye nature just needs to let it slowly filter away, which means I will have up to 6 months of living with this bloody floater popping in and out of my vision, trust me its annoying.
As for the blood vessels causing the problem, there is a treatment but it is not currently available on the NHS for my condition, so we would have to apply for funding.
It’s very rare for it to happen to someone my age, because it is my most rubbish eye that has been effected the consultant I saw was a unsure as to in his opinion it is worth treating, I informed him that I don’t want to lose the vision in my eye without a good fight first, so he is taking to the professor and will ring me next week.
I need to add quickly that this does not normally happen to people who are short sighted at my age, it sometimes happens to people with other eye diseases when the are over the age of 75 so nobody panic.
So in short I got a lot more info today about whats going on and although it is bad news I intend to fight if the professor thinks the treatment will improve the condition of the back of my eye, it will not get rid of the blood that’s already leaked or make my sight any better but it could stop me having a giant hemorrhage and losing it all.