Avastin is go!

Well today’s trip to the eye unit was LONG  over 4 hours long in fact so that was fun, especially as I have developed some form of cold/flu thing.

My pressures (as predicted by me) have gone back down to normal and the opinion of the consultant I saw was that it was they dilating drops that made it read so high on Saturday.

I had to have another Fundus Fluorescein Angiography which is a diagnostic procedure used to look at the blood vessels at the back of the eye in involves injecting a small amount of dye called Fluorescein into the blood stream so it can be watched going through the blood vessels and any leaky ones can be seen and photographed.

Last time the nurse got the cannula into the vein on the inside of my elbow first time, on this occasion however it took 5 attempts involving 2 technicians, 2 nurses and eventually a doctor!

It was a very crowded room and although it is mostly funny (I was trying to laugh about being a pin cushion) things got so desperate that one of the nurses went for the vein that runs kind of down the side of your thumb to wrist area and wowser that hurt a lot more than any of the others and worst still it failed!

So eventually a doctor had to come down because the nurses are only allowed 2 attempts each and after the second nurse they have to go up to doctor level, and the doctor got it first time, I had the test and all was well.

Then I saw a consultant who looked at the test results and had a little look at my eyes and basically there is still an active area of leaking from the blood vessels that should not be there, as the funding has been approved that means all systems are go and I should hear when my appointment is going to be within 2 weeks.

This is all good but there is however a slight down side.

Due to the complications of having glaucoma and Nystagmus (uncontrollable eye movement) and my eye history the consultants got together and decided that it would be better for me to have the injection done in theater. 

Instead of being in and out in 5 minutes as a outpatient I am going to be an in patient spending the majority of a day on the ward and due to it being done in theatre no hand holding companions will be allowed, I will be fine but it adds a whole new dimension to everything and is a little naff.

In total I will have 3 injections directly into my eye of Avastin each one will be 6 weeks apart and then after the last one I will have another Fundus Fluorescein Angiography to see how things stand, the good thing about all this is that hopefully most of that will fall over the summer break so there should not be too much disturbance to next years uni.

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The Eye Unit Continues to Amaze

On Thursday of this week I got a interesting letter through from the eye unit appointments,  it contained 3 letters one saying my appointment was at 1 o’clock on Tuesday another saying it was at 2 o’clock and another saying it was at 3 o’clock now put that into context that I already had an appointment booked for this morning I was rather confused.

So I phoned the appointments line and was told that it was an error on the system, I needed to keep my Saturday appointment and that the appointment on Tuesday is actually at 1 o’clock.

So I got up at 6:30 Saturday morning,  fed Gus Got us both ready and headed out to get the 8:05 bus to Southampton General Eye Unit. Those of you that know me well will be aware that I am not a morning person at the best of times but on a Saturday, getting to the hospital for 8:45 was very difficult. My Bus was unfortunately late so I was about 5 minutes late for my appointment but the receptionist was very nice about it and because it was  a really small clinic with 30 patients and 3 doctors seeing them all they simply swapped me around so I was not late at all!

I’m getting to know the nurses quite well on the eye unit now, we are on first name terms in most cases they all love my dog and we have a bit of a laugh when I read out the lowest line of the eye chart I can see and they have no idea what I am going on about! (Due to the fact that all the letters are wrong)

So I did the distance vision test which is a laugh then went to have drops put in my eyes as normal in a attempt to dilate my pupils, I normally have to have 2 different kinds which normally don’t work to well anyway I told the nurse that I needed 2 different types and she assured me that I did not.

10 minutes later and I am approached and told I was right all along and that I need another lot of eye drops!

Anyhow I went in to see the doctor who was confused as to why I was there on the Saturday when I am going next Tuesday anyway, there where no consultants around because it was a Saturday so the doctor did all the usual checks and discovered that my Glaucoma was sky high in my left eye, the pressure is supposed to be around the 18 mark, my left eye was scoring 30. The doctor then got a bit worried and asked me a million questions and told me not to panic, I was very chilled out about it because I know eye pressures is all ways higher in the morning and after all the eye drops they had put in my eye must have had some effect on the pressure. Quite frankly the Doctor was telling me not to panic but she was more than me she then looked through my notes and pondered.

At the end of the day unfortunately my combination of eye conditions is both rather rare and complicated for this reason these days I all ways see a consultant so poor little registrar was evidently feeling rather out of her depth and did not know what to do. 

So I got a sorry I really don’t get why you are here right now and make sure you keep your appointment on Tuesday because I have no idea what to do!

Bless!

So I got up at 6:30 AM on a Saturday to go to the hospital for no reason, I remain unimpressed!

Seriously the appointments system is both fragile and ridiculously inefficient, 2 appointments in 4 days at the same place, now that’s just bizarre.

Also I used to get my appointment letters in large print,  but since moving to a new appointments system they are no longer able to produce the letters in large print, this is the eye unit the place where pretty much every patient could do with an accessible letter! I asked if my letters could in that instance be emailed through to me and was told that the system would not allow that either.

Happy BADD – Lets all be positive about disability

As you should know by now if you read this on a regular basis today it is Blogging Against Disableism Day, clicking on the BADD banner on the right will take you straight through to the hub and I would recommend it.

If I am completely honest I didn’t know what to write about for todays BADD. I was going to write something positive about the things I am proud of as a disabled person, not in a everyone smile and cheer at the poor little disabled person getting on with there every day lives but looking at the positive things we as disabled people bring to our communities and on a wider level society.

To oftern the media focus on the negatives of disability or use a patronising tone, unfortunatly this negativity oftern extends to the genral public or even worse service providers. Today at work I was asked to put our this statement on to our jobs database, written by the charity themselves

” Transport is a particular problem for people who are blind and partially sighted. Fear and uncertainty of how to get to their destination, often preventing people from going out altogether, which then can lead to isolation and depression.”

So this add would leave every person that reads it to believe that every blind and partially sighted person in the country feels isolated, scared to leave there own home and depressed. Not just that but its not exactly well written anyway is it? I’m not one to talk about grammar but its just not right in lots of ways. I know that there are pleanty of VI people up an down the contry who live happy contented and actives lives

So why am I not writing about the positives then? (and this is where it gets ironic) Today I have had a very bad day with all my impairments, my shoulder was very painful this morning which made me late, my eye has been playing up all day and you know what I am just having a bad day with my depression, I tried to book an appointment to see my GP today and was told that there where no appointments on the system yet so I would have to ring back and can’t be seen till June.

So basically whatever I wrote today would be utter shit, I have been trying to write something good for BADD all day, but today I just can’t.

I’M GOING TO GET A NEEDLE SHOVED IN MY EYE!

First off I’m trying not to actually think about the prospect of having a needle put into my eye whilst I am awake, I know I won’t feel it because my eye will be numbed but still for most people I think it is a fairly horrific prospect.

My consultant has asked my PCT (primary care trust) for funding to treat me with Avastin a drug originally used to treat colon cancer; by injecting it into the eye it can be used to get rid of the blood vessels that should not be there. (it’s the leaky blood vessels that have just caused me to lose some vision in my right eye and will if left untreated result in losing all the sight in my right eye)

Surprisingly I typed in ‘Avastin’ and ‘eye’ into Google and got up a result page that actually talks about the cause of the blood vessels in my case (high myopia) and the fact that it is not just old people who get the probelm, have a look if you get a chance at  www.maculacenter.com/Procedures/Avastin.htm.

A cut down version:

“There are other eye conditions that cause loss of vision due to abnormal growth of blood vessels in the back of the eye.  These can occur even in young patients, and include, but are not limited to, conditions such as high myopia (nearsightedness)histoplasmosis, angioid streaks, and eye injury.  Sometimes there is no known reason for the abnormal blood vessels.  Without treatment, vision loss may be quick and severe.

POSSIBLE BENEFITS AND “OFF-LABEL” STATUS

AvastinTM was not initially developed to treat your eye condition.  Based upon the results of clinical trials demonstrated its safety and effectiveness, AvastinTM was approved by the Food and Drug Administration (FDA) for the treatment of metastatic colorectal cancer.  As a condition of approval, the manufacturer produced a “label” explaining the indications, risks, and benefits.  The label explains that AvastinTM works by blocking a substance known as vascular endothelial growth factor orVEGF.  Blocking or inhibiting VEGF helps prevent further growth of the blood vessels that the cancer needs to continue growing.

 

Once a device or medication is approved by the FDA, physicians may use it “off-label” for other purposes if they are well-informed about the product, base its use on firm scientific method and sound medical evidence, and maintain records of its use and effects.  Ophthalmologists are using AvastinTM “off-label” to treat AMD and similar conditions since research indicates that VEGF is one of the causes for the growth of the abnormal vessels that cause these conditions.  Some patients treated with AvastinTMhad less fluid and more normal-appearing maculas, and their vision improved.  AvastinTM is also used, therefore, to treat macular edema, or swelling of the macula.”

So there we are then I will, if the PCT decide to fund it be getting treatment to hopefully stop me going blind in my right eye very quickly, I have just one question:

Anyone think they can stomach holding my hand while I have it done?

Better Teaching for disabled kids

Teaching children with profound and multiple learning difficulties (PMLD) | Education | The Guardian .

 

Although this artical focus’s on childrens services for children and young adults with PMLD, it throws up a wider issue.

Teachers are not getting enough education to enable them to effectivly teach people of all ages who are disabled.

I have lots of living proof of that in action at all levels of my education.

Often, right through from infant school to university I have been disadvantaged and not allowed to fulfil my full potential because of teaching that is not inclusive.

The effect of it all

What’s been the effect of all this new eye stuff on my vision, my life and the way I live?

Bloody hell I was clumsy before but now seriously I am worse than ever,  everywhere I go it seems I cause a trail of destruction!
Any co-ordination I once had has now gone completely, and lets face it hand eye co-ordination has NEVER been my strong point.
Balance to has got worse I wobble a lot more than ever before, I’m falling a lot more than I have in a long time to and I’m rather tired with it all.
Possibly the worst bit is the eye strain, persistent headaches and being tired and grumpy all the time.
So in short I spill everything, walk into stuff, break things and am generally a walking disaster!
Oh well at least its amusing for you all to watch all my mishaps!

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.
Check Spelling
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.

Crazy again

This post is therapy I will say that from the off set it is for my own benefit to get things out there so they are not just in my head.

After 8 ish months of being on antidepressants but psychologically well, I’m depressed and ill again.
If I am honest it snuck up on me covering my world with a big black blanket, removing the colour from my thoughts, I saw it coming so tried to take action, but nothing is immediate and now the situation is deteriorating. Whatever action I take has a waiting list, I have to carry on in the dark and Wait for my turn to get help.
I’m back in a place I thought I had left behind, with behaviours I thought I have left behind.
I am now already struggling with the day to day of university life, my insomnia has got so bad, that when I eventually fall asleep (usually sometime between 4 and 5 am) I literally cannot wake up in time for my 9am lectures. My body says that it is tired and I turn every alarm clock off in my sleep, sometimes walking across my room to accomplish the task.
Assignments seem impossible.
The evaluation assignment we have just been set is terrifying, at a time like this when I am not well I can’t see the things that I am good at, I see every mistake I have ever made, I think I am crap at everything although that is possibly not the case.
In a way its good that I have at least recognised that I am unwell again, that’s part of the battle isn’t it admitting that you have a problem.
How did I get here? Is another part of the battle, I think I have been warn down by stress and recent events reminding me of past negative experiences.
So that it then I’m back to crazy depressed anxious Jemma, waiting for help.

Review of 2009 > Hopes for 2009

It’s 2009  so I wanted to wish all readers a happy new year and wish you all a happy, healthy year filled with great stuff!

I also thought I should write some kind of reflection on 2008 and my hopes for 2009, so here it goes.
2008 started with a new relationship, which at the time was fantastic, however 6 months later it became very apparent that it was wrong for both of us to continue how we where, we where in hindsight simply too different; that was the end of that. At the time devastating but now it was the right thing to happen.
The first half of the year was pretty mundane, I was ticking over at college, with a unconditional offer I didn’t NEED to be there, naturally motivation to continue diminished, leaving me running at tick over, putting in lots of effort was pointless.
Of course lets not forget that for the first half of the year I was in the deep, darkness of major depression trying to find an anti-depressant that worked for me and wondering if I would ever be the same person again. I went on some horrible meds in this time that made me ill or seemed to improve my condition for a few weeks and then caused me to drop back down with a big bump, I remained on the end of a very long waiting list for further treatment on the NHS, and felt rubbish!  
Eventually my fantastic (now former) GP got me on the right medication for me, everyone is different and it takes time to find these things, but things started to look up.
Then in May I got a phone call that has completely changed my life,  a call form Guide Dogs to say they thought they had a match for me, the match of course being Gus who you will all know the story of.
At the end of June, begging of July Gus and I trained and my life changed hugely for the better, he really is guide dog of the year material!
Not only did this mark the start of me and my boy it marked the end of college and time to start preparing for the move to university, big but positive changes where afoot.
September saw the start of university which is fantastic, breaking news day which was utterly terrifying but probably good, and meeting all the new people. Gus and I continue to have a fantastic time at univeristy, I think Gus sometimes wishes there where more dogs at university to play with but over all he loves it.
( HAPPY NEW YEAR TO ALL MY NEW UNI BUDDIES!! see you Monday.)
Sadly 2008 also saw the end of my guest blogging for Ouch! I hope to be able to do more stuff with the team in the future but for now I am incredibly thankful for the opportunities they gave me as a teenager with no idea what to do with there life they helped me to find my path and follow it!
So what about 2009? 
I have many hopes for the year, my first of which is to try and be less of a complete wuss, I need to have more confidence in my writing ability, not something that can be done over night by anymeans but a year should be a start.
I hope to be off my anti-depressants by the end of 2009, I am now in recovery but the medication I am on is rather a high dose and highly addictive, so this is more of a challenge than it may seem to some, I am determined to get there and hope that 2009 will see me in a true state of recovery!
I hope Gus has a healthier new year, that is accident free and good for him.
I all ready have a lot of things planned for the new year, lots of which you will probably hear about here first so I would also like to take a moment to thank you all for reading this crap!