My Eyes Diary

Four Shots of Avastin

2012-01-19T20:19:00.002+13:00

Since my last post, I've had another four shots of Avastin.

Right eye on 13th September 2011

Left eye on Sunday 23rd October, 2011.

Right eye on Friday 30th December 2011

Left eye on Friday 13th January 2012

Both eyes appear to be leaking quite frequently now which is a bit scary, but on the positive side, the recovery process is becoming a bit easier.

Now my doctor says I don't need to take the Chlorafast eye drops which I used to have to take for 7 days after the surgery. He says there is no research to suggest these drops do anything to prevent infection so there is no point taking them.

The cost of the procedure has also decreased by about 20% and my insurance now covers the full amount which takes care of the financial burden.

Anyway, I hope and pray for trouble free 2012!!

Right eye leaks after 4 years of stable vision

2011-09-08T17:42:00.004+12:00

Four weeks ago my right eye leaked, I had my 11th shot of Avastin and the vision in my right eye only got worse - one of the worse leaks.

It took about 2 weeks this time before it started to get better again, but slowly it got better however about 4 days ago, it has started to get worse again. I'm pretty sure i'll have another shot of Avastin early next week again.

This leak was quite a big deal as the longer my right eye stayed stable, gave me hope that it may never leak again, which meant my left eye could do the same.

Four years between bleeds isn't bad I guess.

UPDATE: Thursday, 22 September 2011.

I had another shot of Avastin 9 days ago as expected.

My eye has actually started to get worse again but it's more localised in a smaller spot, rather than a month ago where it covered almost all my vision.

It's day 9 since my last shot so any day now I should hopefully start to see improvements again. I'm a little bit concerned that the first shot wasn't enough to do the whole job.

I've just finished work and now enjoying a nice large drink of gin and tonic, this stuff is good!

10th Avastin Shot

2011-07-09T12:39:00.004+12:00

On 7th July I made an appointment to see my RS as I noticed the large blind spot to the side of my eye had gotten much bigger and more "wet" looking again. In the past when this has happened, I end up getting bleeds in the center of my eye a few days later.

I made an appointment to see my RS but due to my Nystagmusm, they could not see anything abnormal. Due to the fact this is my only functioning eye in terms of central vision, based on what I was seeing, I was given a shot of Avastin.

This now brings my total number of Avastin shots to 10 since July 2006, 6 of which have been in the last 16 months and all in my left eye. My right eye has now been stable for 4 years but has two central scares due to previous bleeds before Avastin was available.

Today, 48 hours after my shot, I have put my contract lenses back in and the bleed to the side is now very obvious. We again made the right decision getting the shot based on what I was seeing.

In the past, by now I would have noticed central bleeds - this hasn't happened yet. Instead, it looks as if the bleed is spreading out towards my peripheral vision rather than towards the center. I can see the leak much more clearly if I blink my eyes open and closed while looking at a white surface, the shape of the bleed becomes visible.

While it is extremely annoying having this larger blob to the side of my eye, I'm still able to read. The Avastin shot should clear away most of the bleed to the left and I'll just keep my fingers crossed it doesn't spread into the center.

UPDATE: Tuesday, 12th July 2011:

Today I woke to notice the fluid has spread to the center again - two tiny small blind spots.

UPDATE: Wednesday 3rd August 2011

All the noticeable blind spots have now faded away. I'm left with a very small outline but again I'm very happy with the results. Wish this eye would stop bleeding for more than 6 months though.

Common misconception: You're either totally blind or have perfect vision with corrective lenses

2011-03-14T09:58:00.005+13:00

I work in a large office in central Auckland. Everyone I work with are really nice, but I'm sometimes surprised at the response I get from a lot of my colleagues regarding how close I sit to the computer screen.

I have my monitor pushed right up in the front of my desk and when I'm working, my face is about 20cm from it. Sometimes I have to go even closer to read the small stuff and I find myself moving my head around the screen to read different parts of it. I have the screen resolution on 1280x720 while everyone else either has it on 1600x900 or smaller.

I'm happy working like this and don't find it a problem, a larger screen wouldn't make it much easier as I'd then need to physically move my head even further around to see different parts.

I know it's normal to be curious and ask questions when something appears a bit different, but the type of questions I've been asked have surprised me.

One of the managers came up to me and asked why I sat so close to the screen. I advised I had severe short-sightedness, along with a few other eye conditions. The managers response was (and I quote) - "Helloooo... why don't you just get glasses". On this particular occasion I got angry with this response. I had already had a few other people come up to me that week asking the same thing and the way this manager responded incredibly frustrated me. If someone came to work in a wheel chair and a manager asked them why they couldn't just get crutches and walk, it would be considered much more offensive.

Of course I advised I wear contact lenses but glasses/contact lenses only correct vision so much. I was angry and my tone showed it. The problem I have is that I'm quite self conscious. I don't like to be different and I don't like it when people bring this up. I tend to get embarrassed and sometimes start blushing.

I understand that people naturally have questions, but when I respond advising I have eye problems... which in my opinion is pretty bloody obvious considering how close away to the screen I am, I get frustrated when they then turn around and respond to me like I'm some sort of idiot. What did this manager expect me to say... "ohhh, glasses, of course! How incredibly stupid of me... all this time!".

In my experience, a lot of people assume that if you have bad eyes, simply wear glasses or contact lenses and they'll be back to normal. You're either totally blind, or have perfect vision if corrected with glasses - there's no in-between in many peoples minds.

Considering the eye problems I've had to deal with over the past few years, this doesn't compare at all. I'm just having a good old moan about peoples ignorance. I love the company I work for and enjoy my job - I'm very thankful for this. Human beings in general can just be so stupid sometimes!

Weird temporary central colored spot

2011-03-04T19:38:00.004+13:00

I got such a fright at work about two weeks ago!

I answered a phone call, and just as I was saying my typical intro, a large colored spot appeared in the centre of my eye. It was bright and extremely visible. I had no option but to carry on as normal in this particular instance. I was shaking and started to panic but then after about a minute or two, it went away.

Not sure what it was exactly, but I'm just glad it wasn't another bleed. I also started to worry about possible retina detachment at the time.

I have a scheduled follow-up appointment with my RS on Tuesday related to my latest Avastin shot, just a check-up and a chat.

Blueberries

2011-02-17T18:51:00.003+13:00

Blueberries are said to be really good for eyes, so I've decided to eat lots of blueberries for 1 year and evaluate my eyes after this time.

I found this extract on an article about the benefits of Blueberries:

"A number of studies have shown that blueberries and bilberries (the European cousin of the blueberry) improve eyesight. Blueberries prevent eye damage, preserve eyesight and are helpful in treating myopia (nearsightedness). Blueberry consumption may offer a great deal of protection against retinal degeneration (particularly diabetic retinopathy and diabetic cataracts). Blueberries may also offer significant protection against the development of glaucoma because of its collagen enhancing actions (Kajimoto, Osami, Blueberries & Eyesight, Food Style 21, (3), 3, March, 1999)." - taken from http://www.osteoarthritisremedy.com/herbal-remedies/blueberryextract/blueberry-benefits

I'm eating 1 pallet of blueberries a day which i mix into a health shake every morning, along with a banana, yoghurt and milk. As Blueberries go out of season, i'll replace my fresh blueberries with frozen blueberries. I'm interested to see if this will have any impact on my eyes, or at least keep the bleeding at bay.

New Bleed - Jan 2011

2011-02-15T14:08:00.004+13:00

Last month I had another bleed which behaved exactly the same as the previous bleed with bleeding first occurring to the left side of my eye followed my some central bleeds the day after my Avastin shot.

It appears I've dodged another bullet here - 10 days after the Avastin, my eye started clearing up and within 3 weeks, I could see normally again. I haven't had a second shot of Avastin this time around. I can still see a slight imprint of where the bleeds occurred but i'm so thankful again for the results.

My eye has never been this active before, this was my 5th Avastin shot in less than a year - I'm told this is unusual for Myopic Degeneration.

5 months on from last bleeds

2010-09-12T11:45:00.020+12:00

The last 5 months have been good - no additional bleeds and I got a new full time job in May in Tech support and Billing for an internet/phone company. I'm really enjoying working full time again, I hated being on government support and now we have more money to play with which is great!

Two days ago however I've started noticing that my small blind spot in my left eye, which was the result of a previous bleed a few years ago, appears to be so much more noticeable. I can't look around without missing it and it's really starting to freak me out. I've studied it by holding my right eye closed and blinking my left eye over and over again and I can't see any new spot, but the old spot appears to be a little bigger and much more noticeable.

I first noticed it on Friday at work and just though I was having a bad eye day. I get eye worries all the time and they usually turn out to be nothing so I just left it and tried to forget about it, but I couldn't because I was constantly being reminded of it every time I saw the flicker of distortion as I looked around. Saturday came and I was at work again - went through to whole day worrying - my RS is only open Monday to Friday and at this stage I didn't think it was worth going to the hospital for.

It's now Sunday and it isn't getting any better. I just feel so worried because I don't want to lose more vision and have to leave my job over it - I wish money wasn't an issue!

I may call my RS on his mobile today and ask for some advice, or I may just go to the hospital - haven't made up my mind yet. I'm pretty scared at the moment and I feel sick.

UPDATE: Thursday 16th September, 2010

I called my RS on Sunday and he saw me first thing on Monday morning and I underwent Fluorescein treatment to try and obtain some steady images of my eye.

He could not see any new leaks from the images.

The next day I called him and made another appointment for later that day as I was not comfortable about leaving the new wet patch I was seeing, I now knew something was going on.

He spoke to some of his colleagues who all looked over the images taken the day before; half of them thought I should wait and see what happens and the other half thought I should have a shot of Avastin. They could not see any new bleeds at this stage but said there potentially could be evidence of a small leak but could not be sure.

With my RS advice, I decided to go ahead with a shot of Avastin as I knew what I was seeing was a new bleed of some sort.

This was different to other bleeds; this was a previous scare that had suddenly gotten bigger and much more wet looking - it wasn't a entirely new bleed as is usually the case.

I had the shot of Avastin and then the very next day, I woke to discover a tiny new sparkle towards to centre of my eye - this was new. I was extremely worried and went through all the typical stages of emotion I go through when I suddenly discover a new bleed - frightened, frustrated, upset and then acceptance. The only good thing about this is that I had already had a shot the day before so I knew there was nothing I could do and that it would hopefully dissolve away.

It's just so weird, it's almost like the previous scare that got bigger was somehow connected to the new tiny bleed. I bet if my RS looked in my eye now, he would see the new small bleed.

I see my RS next on Monday 27th September.

I put my contact lenses back in 36 hours after the Avastin shot - my doctor said this would be ok. I went into work today and had to keep applying eye drops every 4 hours, I was extremely careful around taking my contacts out making sure my hands were thoroughly clean as I am always conscious about the possibility of infection.

Now when I look around, I see a slightly larger more wet blind spot to the left of my good eye and a small sparkle just above my central vision in the same eye - I can still read so I'm thankful for that, I just hope this particular wave of bleeding doesn't continue and that it clears up.

UPDATE: Saturday 18th September, 2010

Yesterday I got home from work and noticed another small tiny sparkle leak just below the other new wet spot, this is getting very close to the center.

Today when I woke up I also noticed yet another small spot not far from the sparkle I noticed yesterday.

I've now just got to work and I can see the new colored spots flashing around as I move from light to dark backgrounds on my screen.

In the past, it appears to have taken between 7 and 10 days after the Avastin shot before I start to notice improvements, it's now almost been four days.

It feels like i'm just hanging in there with my reading vision, i'm so close to losing it.

UPDATE: Sunday 19th September, 2010

Today my vision is even worse than yesterday. It is getting extremely difficult to read. When I look at text on a white screen for example, bits of the black letters are missing.

I have today and the next two days off work but I'm due to go back on Wednesday, I'm really worried.

UPDATE: Friday 24th September, 2010

This morning appeared another huge bleed. I see my doctor on Monday.

UPDATE: Tuesday 28th September, 2010

I visited my RS yesterday, he took another picture of my eye. He can now see a moderate bleed off centre. He was kind enough to give me a copy of this image along with the image they took 2 weeks ago.

Below is the first image that was taken 1 day before I had my Avastin shot. This is when the doctors weren't sure if there was a bleed, but I had a shot anyway as I knew something wasn't right.

This next image was taken just yesterday, about 2 weeks after my shot of Avastin. My RS has dotted around the new hemorrhages. The spot marked as "X" is where he predicts the centre of my vision is.

I think it's strange that my eye hemorrhaged so much after I had the shot of Avastin. I can say that there has been some improvements though, it is getting easier to read but there is still a lot of mess in my eye - alot of large and small blind spots.

I'm really hope the leaking has now stopped - I'll probably have another shot of Avastin in 2 weeks.

UPDATE: Saturday 2nd October, 2010

Some good news - no more bleeding since last Friday. I'm hoping this episode is over.

My vision has improved over the past week, still a long way to go though. I can still see all the new leaks, but they appear to be fading a bit.

UPDATE: Monday 11th October, 2010

No additional bleeding has occurred since my last update which is great news. I have started noticing a sparkle in my right eye right over the previous blind spot - I catch this when moving from dark to light surfaces. I don't think this anything to worry about but will get it checked out.

I see my RS again tomorrow, chances are I'll have another shot of Avastin in my left eye to try and continue clearing up the leaks. I didn't want to take any more sick days at work so luckily was able to shift swap which I'm really happy about.

I'll hopefully be able to get another updated image of my eye which should show the improvements to date.

UPDATE: Monday 14th October, 2010

I saw my RS 2 days ago - I do have an updated image of the eye which I will post over the weekend. My RS can still see the bleed but says it's flattened down a bit and doesn't think another shot of Avastin would be of any benefit. He thinks it will continue to get better on its own, even though the Avastin is no longer working. He explained that MMD is different to AMD and doesn't require as many shots of Avastin to halt the bleeding.

Although the doc didn't think another shot would benefit, I wanted to have another "squirt" as he calls it anyway. We made this decision collectively, I was not comfortable going home with no treatment when I can still see the active bleed. After all, this was my only functioning eye for reading and I had already had multiple bleeds this year. There are no real disadvantage to having another shot; other than the risk of infection which is extremely minimal and financial reasons, but then I'm now lucky enough to pretty much have all the procedure covered by my health insurance plan through work - something I'm very thankful for as I used to have to spend all my savings on these treatments.

Anyway, I had the shot and went home. The next day around lunchtime, as i was laying around with my eye closed all day listening to Oprah and Dr Phil on day time TV, i saw a new massive sparkle. I had another moment of complete devastation - I knew i'd had another bleed which meant my eye was still active and bleeding. I walked in the bedroom and fell on the bleed, still checking my eye over and over. I just prayed, that's all I could do. I just prayed, please God, please not again. I then got up and noticed the sparkle spot had disappeared and had a huge sigh of releaf. I don't care what the reason was for this new sparkle spot appearing and disappearing again, all I know is that it appeared just like every other time this year and after praying, it was gone. I have no other explanation or reason to seek another explanation - I am just so very thankful this scare didn't turn out to me a new bleed. I'm not an overly religious person, but I do thank God for this.

Went back to work today as I was able to put my contact lenses back in, eye was sore and stung when I had to remove my lenses and put in eye drops. To make things worse, I've also got a cold and have had a headache and cough all day. I don't mind though, as long as I have my reading vision I'm a happy chappy.

Will update with new images shortly.

UPDATE: Sunday 28th November, 2010

Just a quick update - my vision is pretty much back to normal. I can still see an imprint of a light area where the bleeds occurred but they are definitely not blocking any vision which I’m extremely happy with.

I appear to have dodged a bullet.... again. Hoping things stay stable again!

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Had another post op check-up today

2010-04-14T20:39:00.008+12:00

Saw my doctor again today, I dislike the bright lights being flashed into my eyes and trying to keep my nystagmus still can be quite difficult at times.

After the dilating eye drops were in and after I get the bright lights flashed in my eyes, I can see the areas affected by the bleeds much more clearly. Today i noticed a long thin line of wetness that wasn't there on my last visit 2 weeks ago. This line isn't visible under normal conditions (yet). I'm hoping it's not the start of another bleed. Will find out soon enough though, I get the feeling I'll be having another shot of Avastin in a week or so.

A side note; why is the cost of parking so expensive at the public hospital? Crazy world we live in!

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Latest update and treating another bleed with a gas bubble?

2010-04-12T20:10:00.005+12:00

Well it's almost been three weeks since my last shot of Avastin and everything is going well. No additional bleeds which is good, I'm really, really hoping my eyes are stable again!

I went to my doctor just under 2 weeks ago and he said that the new bleed I experienced just after my last shot of Avastin, appeared to be further away from the centre of the eye and he didn't think it would bleed again.

He did say that if I experienced a bleed in the dead centre of my eye, that he would consider trying to move the bleed by using a gas bubble. I'm not sure of the details exactly, but as I understand it, the gas bubble surgery is used to try and fix a retina detachment. He says that by doing this procedure, it should hopefully move the bleeding away from the centre and into my peripheral vision and should prevent vision loss in the central macular area.

I see my doctor again this Wednesday for another checkup.

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Third bleed in 5 weeks

2010-03-31T13:17:00.005+13:00

Last Wednesday I had my second Avastin shot for this cycle of bleeding. This has been my sixth Avastin shot overall to date.

The procedure went well as per normal, recovery seems to be easier than I remembered from years ago and I had my contact lenses back in 3 days after surgery.

Unfortunately, on Monday (5 days after my shot) I noticed yet another new bleed, right next to the second bleed which was right next to my original bleed. I haven't yet seen my doctor as I know there isn't anything they can do yet, I have an appointment with him in a few hours so I'll find out more shortly.

The scary thing about all this is that I've never had so many bleeds so close together before so I don't know what to expect, it's really quite stressful. My central visual area is still intact so I'm hoping and praying that this doesn't leak into this year.

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Double bleed in my good eye, even after Avastin shot.

2010-03-11T14:21:00.006+13:00

For anyone that read my previous post, I actually ended up going into the public hospital on Sunday to get my eye looked at.

The doctor on call said that there was indeed another active hemorrhage but due to the fact it was only 2 weeks since my last shot of Avastin, they couldn't do anything. Apparently, the Avastin stays in the eye for about 4 weeks.

I also went back to see my retina specialist on Wednesday and he also confirmed another much larger hemorrhage closer to the macular. He was quite concerned that the original shot of Avastin hadn't prevent any further damage and it looks like i'll be getting another shot of Avastin in a week.

The interesting thing he said was that if Lucentis was the same price as Avastin, he would treat all his patients with Lucentis as he now believes Lucentis is much better than Avastin. The issue here is that Avastin costs about NZD$145 per shot, while Lucentis costs at least NZD$3,000 per shot, plus the actual surgical costs of around $1,200. Lucentis is not covered by any health insurance policies in NZ and the public hospital does not cover it either.

He said that if the next Avastin shot doesn't work, he would like to try me on Lucentis. Of course I will do it, but it's a huge cost and will prevent my wife and i starting up our new business later in the year (a doggy daycare), which we have been saving for over the last few years. The financial side of it is nothing compared to the actual condition, but it just makes it that little bit more frustrating.

I'm trying to be optimistic and i'm sure everything will work our just fine, i'm hoping for the best.

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New Colored Spots

2010-02-25T14:05:00.013+13:00

Well this is the post I have been dreading to write since my last bleed around 2 1/2 years ago.

It all happened last Sunday afternoon when my wife and I were getting ready to go to my parents place for dinner and a game of cards. I noticed a tiny color spot in the top right of my left eye, which is my good eye. My heart sunk and I started to feel sick.

The next day I went to my RS and he saw some fluid in the back of my eye and we decided to have a shot of Avastin that very afternoon.

It's now been 3 days since my treatment and i've finally been able to put my contact lenses back in. I haven't noticed much difference but according to my previous blog entries, in the past this has taken about a week before i've noticed any changes.

I'm very upset this has occurred but I'm also very thankful that there is a treatment available and that i have amazing family and a wonderful wife that all help and support me through these tough times. I recently got married and went our honeymoon just over a month ago so i'm also thankful that this didn't occur right before our wedding.

I will update this as progress occurs for all who are interested to follow. These are scary times but I always seem to get through them.

Friday, March 5th, 2010

Progress had gone well, the flashy light I was experiencing before my last surgery was getting better, however yesterday when I was out and about, all of a sudden I noticed the same symptoms I had on Sunday 2 weeks ago before my surgery. It appeared to be in the exact same spot again too.

This morning it was still there so i've made another appointment to see my RS this afternoon. I'm not sure if the flashy spot is occuring in the exact same areaa, or if it's a new flashy spot right next to the old one. It's very difficult for me to tell as I have a nystagmus (not to be confused with astigmatism) and when I attempt to try and look closer at my symptoms, my eyes shake around and cause even more jitters.

The doctors can't even take pictures of the back of my eye because of my nystagmus, it also makes it much harder for them to see bleeds or any other abnormal symptoms to diagnose what's actually going on.

I just have a funny feeling that what I'm seeing now, as well as what occurred on Sunday 2 weeks ago, is not neovascularisation but something different. I've had many eye bleeds in the past and i know what to expect when my eye bleeds, what i'm seeing now is not what i've seen in the past so I'm quite concerned that I may have even been misdiagnosed, due to the fact of my nstagmus.

I'm beginning to think what i'm actually experiencing is posterior vitreous detachment, which is not dangerous in itself but can lead to retinal tears or even retina detachment, which i'm much more likely to get in my lifetime than someone without extreme myopia.

I will see what my RS says this afternoon and update as things change.

Saturday, March 6th, 2010

Just a quick update on what my RS said yesterday regarding my new symptoms; he couldn't find any sign of new bleeding and tried to take some pictures of my eye again. He said the quality of the pictures were 3/10 but he couldn't see any evidence of retinal tears or new hemorrhaging.

I'm a little bit upset about this because I can clearly notice a different, but they can see anything new.

He wants to see me again on Wednesday 10th March next week so i'll update then.

Sunday, March 7th, 2010

Today I've woken up and the new spot I first saw on Thursday has grown overnight and is now fully over my central vision.

I've been dreading this day for so many years and now it's finally come.

I can't read at all now and I don't know what to do.

I can't get hold of my doctors as it's the weekend and even if I could, i don't think there is anything they could do because it's only been 2 weeks since my last Avastin shot and you have to have them a month apart.

I don't understand why the Avastin hasn't worked for me! If anything, i thought it was meant to prevent the eye getting worse?

This isn't fair for my wife, she shouldn't have to go through this! We are both only young and I feel so powerless, I can't do anything to stop it.

I've left a message with the clinic for my doctor to call me as soon as he can, but again I don't see what they can do to help at this stage.

I'm not going to be able to handle living a life without my central vision, how can i make money and support my family? It will be impossible.

I'm now going to be updating my blog with individual entries rather than updating each episode in the current post.

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New Contact Lenses

2010-02-04T16:18:00.003+13:00

For the past 9 or so years I’ve been using Actifresh disposable soft contact lenses with no problems at all. Before Actifresh became available, i was forced to wear hard contact lenses which i tried wearing for a couple of hours a day for a few years but found them to be extremely scratchy and uncomfortable so i was stuck to wearing large thick glasses most of the time.

Actifresh was a massive breakthrough for me; it was the first time in my life when i could chuck away my glasses for good. I wore my Actifresh soft contact lenses from the minute i woke up till the moment i went to sleep without any issues at all.

In December 2009, i went to see my Optometrist, Grant Watters. Unfortunately, my Actifresh contact lenses had started to show signs of over-wear so it was time to seek a better lens.

Fortunately, there was a new lens available called Proclear XR Sphere by TailorMade. This new lens allowed twice as much oxygen to pass through to the eye than my older lens and lasted twice as long (one month as opposed to 2 weeks).

The Proclear lens was larger than the Actifresh lens and for about the first 7 days, it felt scratchy and uncomfortable. After the first couple of days of use, my eyes even showed signs of redness but this passed and now they are just as comfortable as my old Actifresh lenses but i know they are letter more oxygene get through to my eyes which can only be good.

The strength of my lenses are:

Left eye: -14.5

Right eye: -13.5

I’m so thankful these contacts are available; moving from my thick heavey glasses into full time contact lenses was one of the biggest life changing events of my life and i’m glad the technology was available for me throughout that time. If only i could have worn contact lenses throughout school, maybe i would have had a better school life.

If anyone else has anything to add regarding the use of these types of lenses or other lenses, please leave a comment.

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My Vision Stats

2009-10-31T22:44:00.007+13:00

I just wanted to document my exact eye conditions to see if anyone else out there had a similar condition.

I have congenital horizontal nystagmus and extremely high myopia. My right eye refraction is -21.5 – 6.0 x 15 and my left eye is -18.5 – 6.0 x 180. I had approximately 3/60 acuity prior to developing a Foster Fuch’s spot on the right side with central subfoveal haemorrhage in July 2002.

Is there anyone else out there who has a similar condition to me? Be interested to hear from you.

:)

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No New Bleeds

2009-03-02T12:24:00.002+13:00

I’ve been meaning to post here for a while now and finally got around to it.

My eyes have been stable for the past 20 months which is great news. I visited my RS a few weeks ago and he said to see him again in 2 years.

Thanks to everyone who has left comments and shared your stories. I will keep this blog updated from time to time.

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Another bleed...

2007-07-25T23:11:00.002+12:00

Hello everybody on earth!

Over the weekend I had my suspicions that my eye was getting worse, then late on Sunday night I confirmed my worse fears! My right eye has leaked fluid again, in the same place as it leaked earlier in the year.

As per usual, I made an emergency appointment with my RS, he saw me that afternoon and couldn’t see any fluid, but we made a clinical decision to have another shot of Avastin as he trusts my judgment. The fact that I have a nystigmatism makes it harder for doctors to diagnose neovasculisation as the eye is constantly moveing from side to side when they try to look into it.

Anyway, the next day at 11am I had the shot. As usual I’m having to wait 2 days before I can put my contact lenses back in, but that doesn’t bother me. Just waiting to see how well this gets cleared up, I really hope it works again……… I really dislike going through all this!

Saturday, 4th August, 2007

It's been 11 days since my Avastin, there has been a lot of improvements, the whole liquidy blurryness has mostly gone, i'm left with a blind spot area though but it's not as frustrating as when it first happened. Very happy with results, Avastin does seem to work well with Myopic Macular Degeneration. Just hope my eyes stay stable for 5 years or so now!

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Foundation Fighting Blindness

2007-06-21T13:40:00.002+12:00

Driving research to save and restore sight, the Foundation Fighting Blindness (FFB) is a non profit organisation and has an excellent website for people who suffer from or know people who suffer from visual impairment or complete blindness. You can find their website at the following address: http://www.blindness.org/

The FFB needs donations in order to continue to provide funding for important research, the more funding they get, the more research they can fund which means more clinical trials and eventually, better treatments or even cures for the future.

If anyone wants to donate money to an extremely wonderful cause, please consider donating to the FFB. Any amount will help, no matter how small.

Let us continue the research and find some cures for future generations.

To make a donation, visit this website: http://www.blindness.org/donate/default.asp

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Effectiveness of Avastin in Myopic Macular Degeneration

2007-05-27T02:11:00.002+12:00

As some of you may already know, I have been treated with Avastin for Myopic Macular Degeneration.

The interesting thing to note here is that unlike Age Related MD where an average of three shots is required to dry up the eye, usually only one shot is needed to have the same effect for patients with Myopic Macular Degeneration. My RS told me this was because the patients are younger and the causes are different. (stretching of the eye rather then old age)

Avastin does its job really well, drying up all the blood before it has a chance to scar. In my case, all the blood was dried up and most of the blind spot had disappeared, but some still remained. So why would I still experience a blindspot if the eye was no longer wet? Well when the eye bleeds, it lifts the outer layer of the eye up slightly, the Avastin then enters the eye and clears away the leakage, however the outer layer that was lifted up due to the leak, doesn’t fully flatten down again, thus causing a slight blind spot.

This may not occur in all patients, some may experience their normal eyesight again after treatment, but the point to raise here is that the Avastin does what its supposed to do and dries up the eye.

Please remember I’m only a patient and this information has just been passed onto me by my RS so may not be 100% accurate, but I just like to let people know what I’ve been told and what has happened to me in case there are others out there about to have this treatment and want more information on it.

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Living with High Myopia and Myopic Degeneration

2007-05-23T16:13:00.002+12:00

I can’t find anyone out there who seems to be experiencing the same vision problems that I’m going through. I have high myopia which had lead to Macular Degeneration and I’m 23 years old.

All the support groups out there are designed for older people who suffer from the more common, age-related kind. In all my years of searching for others like myself to talk to, I have never found anyone.

For me, being shortsighted was annoying because I always had to get up close to read things. Macular Degeneration is just plain horrible because you can’t read things full stop.

I hate not knowing what’s going to happen next, I hate waking up every morning to check and see if I’ve lost anymore vision and I hate that sick feeling I experience when I realise I’ve lost more vision yet again.

All my friends have perfect vision, I’ve always gone through the mainstream schooling system and been brought up like any other child and I’m thankful for that. Out of all my friends and family there is hardly anyone that fully understands what I have to go through. The thing about extreme shortsightedness and macular degeneration is that people can’t tell you have a problem just by looking at you; it’s up to you to tell them.

In most cases I don’t tell the people that I have vision problems. I’m embarrassed of my problem, I don’t like to call it a disability, I don’t like to be treated any different and I don’t want people being nice, polite or especially kind to me because of my problem. I just like to be treated normal like anyone else; this is why I tend to not let people know. The downside to this is that obviously sometimes I’ll make myself look stupid because I wont be able to read that small print or I might completely ignore someone that waves to me across the room, however even if I did tell people, they may not care or chances are, they wouldn’t understand.

David from my MD emailing support group wrote the following in an email to everyone, it illustrates my points perfectly and is so true.

“It takes a person with plenty of wisdom, and understanding, who does not have vision loss, to fully empathize with someone who does have significant vision loss. It is "an invisible disease" - as others have said. When we see Michael J. Fox on TV, doing a spot to support research for Parkinsons Disease, his condition is very obvious and dramatic to behold. His affliction causes very easy-to-see abnormal motions, so it's very easy (and rightly so) to sympathize with him. Christopher Reeves, in a wheelchair, similiar
idea.”

Not being able to drive a car does suck, but to be honest, not driving a car is the very least of my worries, I just want to be able to maintain a stable amount of vision to go through life.

I hate not knowing what’s next! I know it could be worse, I know I should be thankful I don’t have a terminal illness and I am, but my vision is so important to me and it’s just so scary.

I wish we had a cure or at least confirmation that there will be a cure in ten years, that would make my life so much easier to deal with if I knew there would be a cure in 10 years, but that fact is, I don’t and no one does.

I will never admit defeat to my vision and maybe that’s a bad thing, but for me, there isn’t any other way.

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My Initial Avastin Experience (Part 2)

2007-05-23T16:05:00.003+12:00

Unfortunately, 5 years after my first bleed in my right eye, it occurred again.

As per usual, I made an emergency appointment to see my RS and he confirmed what I already knew.

One day later, I had a shot of Avastin (this was my first ever shot in my right eye).

The operation went really well and I was able to wear my contact lenses two days after.

I begun to notice some improvements about a week after surgery. It's now been about 6 weeks since the surgery and my RS says the eye is completely dry.... "as dry as a rock" as he put it. There still is a blind spot but less then it was.

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My Initial Avastin Experience

2006-08-21T15:33:00.003+12:00

Hey everyone, this entry is all about my experience using the drug Avastin to treat Macular Degeneration. I wrote this so other people who are about to have the treatment or want to know more about it, can follow my journey and get the information they require regarding this promising new treatment for MD.

Four years ago I was diagnosed with Macular Degeneration (Myopic) in my right eye, back then there wasn’t much at all that doctors could do to treat the disease, all they could really do is slow down the progression of the disease. Eventually the leakage scared over and caused permanent central vision loss in my right eye.

One month ago I developed the same condition in my left eye, so I was unable to read because all my central vision in both eyes had now gone. I went on a new drug called Avastin; which is basically the same as Lucentis, both of which are made by Genentech.

Having the Avastin surgery was quick and painless; I was only on the operating table for all of 1 minute. After the surgery they put a patch over your eye which you can take off 2 hours later. I had to return to the doctor the next day so he could check my eye in case of infection, but all was good.

I didn’t notice any difference for about a week and then my eye slowly started getting better. It got to the stage where I could read the computer screen again.

It’s now been about a month since my first shot of Avastin and I’m due back to see my doctor tomorrow (August 22, 2006). My eye hasn’t completely cleared up yet but I would say it has gotten 60% better due to the first Avastin treatment. I’m expecting I’ll have to have another shot in a few days but I will see what the doctor says, he’s optimistic it will fully clear up. I’ll write again after my visit tomorrow.

Tuesday, August 22, 2006

Well today my doctor looked in my eye and couldn't actually see any leakage or fluid. Last time I saw him (three weeks ago) he could see the leakage, but now he can’t, so I guess that is good. Just because he can’t see it, doesn’t mean it’s not still there though, which is the case because I can still see a blob. He told me to leave it two more weeks and if it hasn’t cleared up fully by then, he’ll give me another shot.

I’ll post another update in 2 weeks time, hopefully I wont need another shot and hopefully it will have gone away completely.

Tuesday, September 5, 2006

Went back today to see my doctor again, he asked me how much improvement I had noticed since the first shot of Avastin, I said about 65% improvement. He looked in my eye and said it looked a lot cleaner then it was when he first looked at before the treatment.

He said the blind spot was small and it would be very unlikely to scar over at this point, he also added that with time he would assume it would dissolve away by itself, however we both decided to have another shot of Avastin just to get the job done quicker.

So anyway I’m booked in for surgery on Thursday 7th September at 4:30, I’ll write another post a day or two after my second shot.

Saturday, September 9, 2006

Its been about 40 hours since my second Avastin shot and I’ve just been allowed to put my contact lenses back in! The surgery went really good again, not painful at all. They start off with giving you some Panadole and then an eye drop to numb the eye. Then they put this thick gel stuff into your eye which also acts as a stronger local anesthetic to the drops, that same gel is applied again five minutes later and then the nurse leads you into the operating room.

I lay down on a bed, the doctor asked how my day had been and applied this disinfectant stuff on the skin around my eye and he then used some sort of device to keep the eye open. This didn’t hurt at all because the eye was numb from the local anesthetic. He then quickly inserted the needle and out came the Avastin, I could see if swirl around in my eye and then it dissolves.

The nurse then put an eye patch over my eye and I was told to leave the patch on for two hours. They also gave me some eye drops and I was told to place 1 or 2 drops in my eye every 4 hours for about a week, this just stops infection.

It wasn’t so scary this time around as I knew what I was in for and my sight had improved so much since last time I was there. My eye feels a tiny bit sore at the moment and there is a tiny red dot on the white of my eye where the needle was inserted, but this will go away within the next few days.

Too early to comment on improvements at this stage but I’ll post more in a week with more information on that.

If anyone who is reading this is about to have this surgery, don’t worry about it, it’s going to make your sight so much better and if you don’t have insurance like me, it’s the best investment you could ever make.

Monday, October 30, 2006

It's been almost two months since my second shot of Avastin. Sadly, the second shot did not improve things over the first shot. My doctor says my eye looks clear and is surprised I can still see a blind spot to the side, he was disapointed that it hadn't completely gone away. He says it could still fade away over time and that no further treatments are needed. I have an appointment to see him in late December.

All up, Avastin has been amazing. It has cleared up about 75% to 80% of my blind spot. It has prevented it moving closer to my central vision and above all, has enabled me to read with my left eye again. I'm still able to keep going, as long as I can get up close, I can still do everything.

Will post more after my next appointment.

Tuesday, January 23, 2007

Well its been 6 months since my left eye was blinded and if it wasn't for Avastin, my life would have changed 360 degrees. My blind spot is not in my central vision, there is still a tiny blind spot to the side but my RS says my eye looks cmpletely clear and he thinks some photorecepter cells got moved around a bit and should settle down even still.

This is the end of my Avastin Experience for now. I will write more on this topic only if needed, otherwsie thanks for reading and if you're about to have this treatment, goodluck and be strong, you have something no one had 2 years ago, a treatment that will most likely save your sight.

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