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.

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.

Bad health

I've been a little poorly of late unfortunately, my last post here was mostly focused on Gus, quite rightly too but I was also at the time battling against one hell of a virus and coming to terms with deterioration.

Well I'm glad to say I am feeling a lot better than I did when that was in full swing but I have had more health related issues.

Due to a change in my glaucoma meds and all the other meds I'm on I had to have an ECG last week, luckily that went OK, and my heart appears normal.

Then I started getting really bad nose bleeds, they were literally happening every day I had 2 on Thursday alone, at which point decided there was nothing else to be done but to go and see a doctor.

Luckily I managed to get an emergency appointment that day and after a few people informing me that I was probably wasting the doctors time as it was likely to be exam stress, I was off.

It turned out I was not wasting the doctors time at all. The virus thing I had really affected the blood vessels in my nose a lot, to the point where I had lots of them cauterised at the doctors on Thursday.

Basically they use a chemical on a swab to burn away at the effected blood vessels, its not nice, my nose felt very crispy and sore for ages afterwords!

Unfortunately I had another nosebleed on Saturday morning so it is yet to be seen whether it has really worked and weather the pain was worth it.

I'm still unfortunately getting over the virus it really hit me hard and I'm still finding it hard to talk sometimes and getting really tiered, probably not helped by having to just keep going through it (I'm mid A levels which does not help). I am feeling a lot better though and will hopefully be back to full fighting fitness soon!

A mixture of happenings

I think I already have a post with this title in the blog archive somewhere but really its sums thing sup so well I had to use it again!

First off I have picked up the latest bug that's going around, went down with it on Friday so have been feeling rather rough and had to have a couple of days off college. Talking of college my first exam was on Monday so that was perfect timing in terms of getting ill.

However it’s not really being ill, college or rubbish exams I wanted to blog about today it’s the happenings of Tuesday.

Tuesday morning I had the hospital for an eye check up which I was kind of worried about because of all the stuff the contact lens people.

Well the cornea mystery has been somewhat solved, I have another eye problem to add to the list cornea oedema. In English they a basically tiny little fluid filled cysts on the surface of my cornea that are microscopic, they make my cornea a little bit more cloudy than it should be. Right now they are not really causing a problem apart from I will never be able to wear contact lenses which isn't the end of the world.

Unfortunately my glaucoma was rather sky high in my left eye, it was 28 (18 is the highest it should be) but my right eye was not quite as high. The plan of action is to change my eye drops and luckily it hasn't affected my vision so here's hoping the drops sort it all out! I have to go back in 3 months for a check up; it’s a bit frustrating because my glaucoma has been well under control for about 4 years but meh these things happen.

Then in the afternoon I met Gus he is a black Labrador retriever who is going to be 2 years old this Saturday we went for a walk and it was decided jointly between all three of us, me Gus and the guide dog trainer T that we were a successful mach!

So I will be disappearing off to train on the 23rd of June and I'm counting down the days!

Gus is absolutely beautiful we walk at the same pace and he is lovely and tall I feel like we instantly bonded!

Here is a picture of us at the centre yesterday

Update

Well this is really just a general update of what’s been going on, some good, some very good and some bad. The reason behind it is that generally I have not really said much about what’s going on in my life at the moment so here is your Jemma update starting from just before Christmas.

Well my GP increased my dose of AD's it really didn't work out at all and just made things horrifically worse, so I am on new ones. So far they seem to be working out OK , I have only been on them about 10 days ish, the only downside being that they are a complete no-no with alcohol so I'm back to being a compleate non drinker. The worsted thing about that is that I still have half a bottle of lime tequila left that I got for Christmas, still it’s really nice in fajitas so I will live.

I found out a few weeks ago that I have an interview for a uni, not my first choice uni but its still an interview, I’m currently just trying to work out how I’m going to get there but it should all be ok.

I have my first January exam tomorrow, I’m rather nervous, I don’t like exams but I no that deep down inside I know what its on. so I should do ok, my teacher says she’s expecting an A, but understands how nervous I get!

Then I have another exam next Wednesday, that one will be awful I’m really not looking forward to it, its biology and I no that I am doing ridiculously badly and am bottom of my class, I failed the mock (got a U) so I have no hope in hell of passing first time round pretty much!

Now to finish on a really positive note I’m now in a relationship with my gorgeous hunk Dave, and it’s great. We have known each other for years, the first time we met we hit off really well, (and he hit a guy in the balls with a bean bag, it was an accident!) but for some unknown reason did not swap numbers, then we didn't see each other for years practically then we met up again through Goalball, and things went from there, we have been going out since new year and its great!

Bad week

I have had one of the most ridicules emotional roller coaster weeks ever! Most of which has been on the down side of life. I find it so hard to write and be creative when my depressions taken hold and I am very aware that I want to blog both here and on Ouch! but I just don't have the ideas, or the drive. Here's a day by day account of my week!


Monday- Seems so long ago was OKish to start with but then as I was leaving bumped in to one of my teachers who had a bit of a go at me, informed me that I'm going to fail. Given the fact that I was a bit emotional due to the funeral on Tuesday this didn't go down well. Put me further down in to a deep low. I was so low in fact I couldn't go to guides.


Tuesday- Well Tuesday was expected to be bad I had to contend with going to see my GP which always fills me with fear, and going to the funeral of my godmother.

The GP was terrifying, she did actually remember to come and find me, which was at least one plus. Then I was slightly shocked as she asked me how she could help today and I was like "erm you told me to see you in two months" not the best start, I suppose I needed to feel remembered. Told her how bad things were how I can't concentrate academically and that I rarely sleep before 1 am. Basically the out come was an increase in dose of my med's and shes trying to speed up the counselling referral, other than that I get the impression there is absolutely nothing anyone can do!


The funeral was very sad as expected, it was a lovely service tho they read out a poem written by my godmother sue when she was just ten, i cry'ed from start to finish and I'm not ashamed of that it shows how much i care about her. I still cant quite process that she will never come to stay with us again and I will never hear her call me 'widget' ever again.


Wednesday- I approached with dread, its my busiest college day and was somewhat boring to say the least. the teacher of one of my courses really doesn't like me, or my Friend I don't no why she has to make it so obvious she doesn't like us. I hate to think what my report is going to look like.

Thursday- well that was interesting I have finally finished the immense horror that is the UCAS application form! hurrah!! so I had to pay for that and do all the running round college like a headless chicken trying to sort it out stuff.

Then I had a meeting with the head of LSU I was completely terrified but it went OK, she wants me to be more independent, its all she goes on about, kinda annoys me but never mind. Then the next thing she talked to me about Biology I'm rather behind, so I'm getting a session a week with the head of LSU to try and help me catch up.


Friday- This is where the emotional roller coaster cane in, I was HIGH! seriously I was really like me and I wasn't low, it was just so bloody random don't get me wrong a high is a nice thing when you have been low for so long but it was just so out of the blue, J even said I looked more "animated" I don't really understand what that means. In hindsight I have realised that the high was probably due to the increased dose of antidepressants and the beta blockers!


Basically that was last week.

Contacts two

Well today was my second contact appointment, gosh there strange!

I will only be able to have contacts for distance vision, I will then need reading glasses.

Overall it didn't go to badly, it still might not work out, the latest concern is that after only half an hour of having them in I was getting dry eye, but as the opthermolegist said "suck it and see" there is no way of knowing until it happens.

Today was a little frustrating if truth be told, I was expecting today to be stick lenses in eyes try 'erm for a bit and then learn how to take them in and out and clean them and stuff. Today was only stick 'erm in and see what happens day, kinda feels like we didn't really get anywhere.

So now I have to wait for another appointment before I can actually start getting used to lenses some of the time, its all so slow!

a mixture of happernings

well firstly i need heaps of sympathy and love because i have a really nasty cold and sore throat which is horrid!

on a happier note my dad has just ordered me a DAISY talking book player! i couldn't actually believe it when he did i have wanted one for so long its not gonna arrive for ages but its exciting stuff!

i had a GP appointment today and it confirmed that i have sprained my shoulder and since my Doctor moved it around it hurts so much more!

also decided to keep me on the same AD's and not change them at all i haven't got to go back for 2 months which is a bit amazing.

collage has been a bit rubbish of late but with any luck it will get better, I'm going on two trips next week.

oh and I'm continuing to write for ouch and my podcast mug arrived yesterday.

oooo and i have decided on a degree course i plan to do a combined honors in human rights (major) and journalism (minor)

Hospital visit

Well today was an immensely exciting event in my calender, my eye check up time, lovely stuff. so the day started with being driven to the hospital waiting around for hours then seeing the Doctor which was the most interesting bit.

Shockingly he was actually quite a nice guy, he said I was brave you no, anyway that's a bit off topic, he was looking at my eye test results for both distance and visual field, and informed me that they where below average for my age, well duuuur course they are, hello I'm partially sighted, its not a new thing I've been like this since forever!

Then the next interesting thing happened, before he had even checked my eye pressure he started saying that it was time to try new eye drops because they obviously weren't as effective.... then tested my pressures and to both his surprise and actually mine the where normal, which trust me is shocking, they haven't been normal in a loooooooong time.

Overall despite the doctor's slight insanity the visit went well, did find out that the prescription for my glasses needs changing, and I can try contact lenses but I have to wait 3 months for that.

fun fun fun

As if anyone could forget its my final assessment for a guide dog tomorrow, wish me luck everyone!