Blindness Is The New Cancer

As you may know I have an eye condition that effects my Macular in a similar way to Age related Macular Degeneration (AMD), but alas I am not seventy! In March I had a Sub-Macular Haemorrhage caused by sever Myopia (short-sightedness) and a combination of all the other eye conditions I posses (currently about 8).

A few weeks later at a routine appointment (that was nothing to do with my eye conditions) my GP decided to give me an eye test and inform me of a new brand of vitamin that was good for the eyes. Further research showed that it might help but at £60 for a months supply for me (being a poor student) it was never an option, and to be honest I was not sold on the idea that a vitamin pill would even help my condition.

Then I saw this story telling me that a supplement could  ‘slows down blindness’.  Research suggests if you have AMD and consume a diet high in antioxidants or even better high doses of antioxidant supplements it will slow down the rate of deterioration.

That’s it sorted then eat a load of fruit and vegetables and you’ll be fine… NO!

Exactly a week previously the story was “Oily fish ‘can halt eye disease'” . It suggests that  eating Oily fish ‘like mackerel and salmon’ appears to slow down or even halt the progression of AMD.

So if you eat a diet of purely oily fish, with a side of antioxidant rich fruit and vegetables you should be all right… Maybe!

None of the above dietary suggestions will cure AMD and make it all go away they are only theories worked out by scientists who have run trails who’s sole aim is to prove their theory to make money.

To further complicate matters there are two types of AMD, Wet AMD and Dry AMD.

Currently there is no reliable treatment for Dry AMD, wet AMD does have treatment options that can slow down the disease but wont completely eradicate it.

My main point of this long rambling post is this – There are loads of ‘cures’ and preventative measures flying around in the media for cancer we are used to seeing them if we took  every precaution we would live in contaminate free clean rooms, naked and with sterile safe foods shipped in every day. It is not reality nor is it practical do possible everything possible to prevent cancer because we simply don’t (in most cases) know what causes it.

Blindness is the same in this respect there 1001 things we can apparently do to stop us going blind but in reality Ophthalmologists (eye doctors) have not yet identified all the eye conditions that effect the human race yet let alone start on what actually causes them. Thus preventing them and curing them is impossible, but the media will still go for the story of the next cure for blindness to sell its content for a profit.

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Just Giving!

Good evening to you all dear readers, I am forever thankful that you actually look at this stuff and at least some of you apparently like it and come to visit time and time again!

I am however about to beg… In September I am going to be rescued from drowning by a Newfoundland dog.

I’m hoping I won’t actually be drowning but saying that I have not been swimming in  a long time, anyway I digress, I am after sponsorship for this event to raise money for The Guide Dogs For The Blind Association (UK).

As you should by now be aware I benefit from having a Guide Dog (Gus) so this is a charity very close to my heart. Having Gus has boosted my confidence and made me so much more independent, we go everywhere together and are very rarely apart. There are also the benefits that Gus is my companion, I am never alone because he is always their, at hospital appointments, at uni, at Guide Meetings, at cricket… The list would be endless.

Please help me to raise money to insure that Guide Dogs can continue there vital work for years to come.

Click on the button on the right to sponsor me or visit http://tiny.cc/kXB8M

BBC NEWS | Health | System ‘failing autistic adults’

BBC NEWS | Health | System ‘failing autistic adults’.

It’s sad but a very true story that many people are struggling to live with autistic spectrum disorders they don’t know they have.

I personally have a friend who has recently found out that 10 years ago she was wrongly diognosed with Bipolar disorder and placed on a cocktail of drugs to ‘normalise’ her moods. This combination of drugs taken for so long has damaged her body to the point where she had to stop taking them (fully supported by a mental health team and her family).

Since coming off the medication she has been diagnosed as having Asperges and it is very unlikely she ever had Bipolar disorder!

My Day On The Ward

It’s just over a week now since I spent a day on the short stay ward of the eye unit, it was a long day particularly as I was sat there for about 4 hours waiting for it to be my turn.

Then when it was my turn all went well,  I didn’t see the needle coming towards my eye scream cry and then run, I was calm.

The whole op itself was about as horrific as I expected, my eye was numbed with drops and then rinsed out and then numbed and then rinsed a good few times.

Then I discovered there where actually two needles to go in the eye, needle number one was to numb it all and was supposed to sting, I love how oxymoronic that is!

I braced myself for the terror of the numbing needle and it was a complete anti climax didn’t sting at all really.

Then I got told to look left so the big gun, needle complete with Avastin could be inserted.

It hurt a lot!

My surgeon had to apply a lot of pressure to get the needle to pierce through my sclera (the white bit of the eye) and when the needle did get through it hurt a lot and there was a very odd popping sensation, I suppose you would expect that really but it was gross!

I can now conclude that the numbing injection number one did not work!

Due to the amount of pressure the surgeon had to apply my eyeball was very bruised and a lot of the surface blood vessels leaked so I left hospital with the white of my eyeball blood red.

As the numbing drops wore off I gradually got more and more pain in my eye, it streamed with tears constantly (which was irritating).

I had real big problems going outside in the sun and wind and stuff so I ended up having to patch my eye to make it  more comfortable. I can now safely say that I have heard every pirate joke going!

It’s taken a week for it to fully settle down and there is still some discolouration but I look less like a freak now.

I have to go back to see my specialist to discuss how it went and if it needs to be done again 4 weeks after it was done, its been 10 days and so far I have not had an appointment come through  so I think I will be chasing up the appointments system yet again!

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.

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.

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?

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.