No pretending

I have spoken to my consultant again, turns out the treatment he was telling me about is not a long term option.

The injections only destroy the blood vessels for about 4 weeks, then the blood vessels grow back.

So it's not a long term treatment.

So the long term is;

I am almost defiantly with medical science in its present state going to go blind in my right eye, very little can be done about it.

It's time to stop pretending everything is going to be OK, I'm going blind in one eye, nothing anyone can say or do will make that any better its going to happen, sooner or later.

Of course the great thing about going blind due to haemorrhaging is that there is no telling when, I could have a huge haemorrhage tomorrow, or a tiny little one or I might not have another one for 20 years, by which point there may be some form of cure.

So I have in the last month gone from having an eye condition that is not curable, but not deteriorating any time soon, to having a problem with my right eye that's going to result in having no vision in that eye.

Life will go on, I will get used to the idea.

I am going to fight!

Ok so I am waiting for a consultant to call me and tell me whether the professor thinks it is clinically worth while to treat my eye.

Of course its clinically worth while! I can still See colour and do finger counting, I still have something so lets try and keep it that way. 

Without treatment my right eye will defiantly get worse and eventually I will have nothing left- nada -no vision. Who knows how fast that will happen but its almost guaranteed I will lose all the vision in my right eye.

I am 20 I already have a few problems with my left eye, surly my right eye should be worth saving?

If they decide its not worth saving the vision in my right eye I am going to fight the decision, I possibly have a lot of fighting coming up as even if they decide its clinically worth while they have to apply to the PCT for funding to treat me because of my unique condition.

So I am waiting to hear and getting ready for a fight, it saddens me how much I have to fight sometimes but it simply has to be done.

The consultant calls...

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.

Eye Casualty

After a night of worrying and not hearing anything I got a phone call from my mum who was equally worried, she (with my permission) rang The Eye Unit to find out what was going on.

She was told basically that I needed to get to Eye Casualty as soon as possible.

So I got a few bits together got ready and headed out.

I got as far as the PELICAN crossing outside my halls and had to turn back, someone had smashed a tonne of glass all over the pavement and the crossing, I can't see glass so only knew when I was already stood on it.

Gus cut his paw, he refused to move so I did what I am trained to do in situations such as this, I picked him up, I got a few paces and he decided he was not having any of it so bit me, I dropped him, it was a true comedy moment, he did then decide to move however! I dashed back to halls and the residence manager bandaged up my dog and cleaned the wound, it was very small.

Then there was the frantic OMG I don't know what to do panicked phone call to my mum, who told me to go straight to Eye Casualty because they where very concerned and sort Gus out later on.

So I got a TAXI to Eye Casualty saw the receptionist, who again could not find my notes.

I sat for an hour or 2, had a distance vision test and waited a bit more.

My notes where somehow found and I saw a doctor.

The doctor apologised for me being told to go in to Casualty, and told me that the doctor I saw yesterday had written a letter to a consultant to get him to look at my notes, the consultant would then decide when I needed to be seen and what tests I need and I will get a letter in the post.

In the meantime my macular has been bleeding, and they have no idea why. There is nothing they can do at eye casualty because they only deal with problems at the front of the eye there. 

However if it gets any worse before I get a letter I need to ring them up straight away and head down, they can't do anything about it in eye casualty but they need to know.

So I have to wait for a letter to get loads of tests done, who knows what it is so its still just a worry at this stage.

So I left eye casualty having completely wasted my time and TAXI fare and a whole day I could have spent working on the 3 assignments I have due in eminently and headed for coffee.

Got coffee and rang vet, got  an appointment.

Got the bus into town then got more cash out (TAXI's are VERY expensive) and another coffee and headed to the vets.

Saw the vet who commended the managers first aid skills, he had a good look and discovered that there was in fact some glass in Gus' foot. 

Gus was an angel and laid there rolling letting the vet have a poke around and try and get it out, he kicked the vet a few times, who was incredibly patient with Gus. 

The Glass would not come out so the vet and I decided it would be kinder to sedate Gus to get it out.

2 and a half hours later Gus was still very not with it and now had a lovely Green bandage and we where heading for another TAXI home.

At the time of writing he is a lot more with it, but is not a happy bunny, he is currently sitting on his bed giving me evils asking me to make the bandage on his foot go away.

It took him forever to come round from the sedation, I got back to halls and dropped a piece of pepperoni on his face and he did not even notice.

Today's visit to The Eye Unit

Well today I had my 4 monthly trip to The Eye Unit in Southampton, its a bit of a sausage factory and has all the issues any eye unit has, its like walking into a day centre or old peoples home, I'm still at the age of 20 the youngest person there by about 30 years but hey-ho its all part of the fun. I planned to get the bus after producing the days news bulletin for our student radio station, unfortunately the studio broke and what with one thing and another I was running late so splashed out on a TAXI. In my complete paranoia of being late, what happens I was an entire hour early! Anyway I signed in, did the distance vision test, which was a bit of an eye opener. They have got new electronic eye charts that are remote controlled, its no longer possible to cheat the eye test how upsetting is that! So anyway eye test done I went to wait to see the doctor an hour and a half winds by, I'm listening to my ipod, a million and one conversations that are going on around me and the sound of Gus moaning with boredom under my seat. Then my ears prick up its now 12:30 ish and I here a man behind me say that his appointment was supposed to be at 9:45 and that he has not been seen yet.

I then have that feeling of dread that tells me I am probably in for the long hall and that I should make myself comfy, maybe even get my laptop (her name is Lilly) out and do some work.

Then a nurse makes an announcement, the doctor I am supposed to be seeing is not in today and his replacement is a medical student, this is what is holding everything up. Then the good news, the other doctors have all finished there clinics now so are helping to clear the backlog.

Great I might actually be out of the eye unit by my next birthday! (October 31st if any one's that interested.)

15 or so minutes later my name is called, it should all be quick and painless from here.

So I'm talking to the doctor she is a little horrified by the presence of my guide dog, she has a VERY quick look at my eyes then measures my Glaucoma score, doesn't check them again, I could tell it was a bit of a quick get her out clear the backlog type examination. I am a bit of a specialist at being examined by eye doctors and medical students and have been round the opthamology block more than a few times. She tells me everything is fine my pressures are great and that there are no causes for concern.

I have a cause for concern, I have a small amount of debris in my right eye, its just remnants of scar tissue and stuff like that, every now and then a bit pops up, floats around a bit and I get a shadow in my vision, sometimes they are even pretty colours. I wasn't really to concerned, but on Friday I got a new little floater.

I still have it now sat here writing this so thought as it has hung around for quite a long time I would run it past the doctor.

Doctor has a slightly better look at my eye and looks very concerned, then announces that the back of my eye has been bleeding, it might still be bleeding, I need to see the consultant and what have I done with my notes. 

It was literally those statements in roughly that order, at this point I got scared, and said that I had not at any point had my notes so didn't know where they where either.

So anyway doctor goes off to ring consultant, she pops back to tell me that she can't get hold of him so is going up to his office because he is probably by now on lunch.

So I'm sitting there and I realise I am completely pinned to my chair by the table that swings round with all the technical stuff on it. I try and push it away a little bit but its locked in place, literally on my lap, the building could burn down and I would be stuck there forever. I'm not a claustrophobic person on the whole but in that minute I was starting to panic.

Luckily a nurse swung by and I was like 'Let me out I'm being claustrophobic' one nice nurse and a glass of water later and all was fine.

Doctor reappears and says she can't find the consultant or my notes. She doesn't know why my eye is bleeding, or if it is still bleeding, or what to do about it, BUT it could be really dangerous and permanently damage my vision and I might need surgery to sort it out. (great, in my head I am shitting my pants)

She takes my mobile number encase they need me urgently, if no one rings me I will get a letter through the post, if I don't get a letter I need to ring up and check I have not been lost in the system.

It all makes me have great faith in our NHS system, don't get me wrong I love the NHS its a great invention and we are very fortunate to have free health care in this country, but wow losing my notes, missing that there is a potentially serious problem with my eye, then not being able to find a consultant to sort it out makes me worry a bit.

So anyway I am left to worry about what the future holds for my right eye and Wait for the phone to ring or a letter thorough the post... or to be lost in the system.

I have decided I am giving them a week if I don't here anything I will chase them up, but of course I am now on red alert as it where, if anything worries me before I hear from them I will be heading to Eye Casualty straight away.

It's all rather worrying really.