What's Going On. My Eye-Opening Experience. And How I Got Through It.

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Latest Updates at bottom of post. Video of this here:

It happened again. In the other eye. But it's OK. I didn't lose that one =] Update here:

So this morning, I left a weird status update on my personal Facebook. 

I know a few friends and family are worried about this, as some of you reading this may be, so I'll explain. An Ophthalmologist is an eye surgeon/doctor by the way. 

2 days ago, just before I slept, I started seeing red dots everywhere in my left eye's vision. You couldn't see it on the outside, later, I'd find out that was because it was deeper down in the eyeball, and I was just about to sleep anyway, so I fell into bed and slept. The next morning though, on the way to some treatment, I noticed it was still happening. 

The red dots were everywhere in my left eye's vision field. They're "dots" and "lines", not flashing or moving around. Similar to these "floaters" below that you may see sometimes, but bright red, usually shorter than the lines seen below, and there are thousands of them all over my eye - so much I could only see outlines out of that eye. Trying to read anything even centimetres away was impossible as the red dots would blur out the word outlines completely. 

So when I arrived at Royal Prince Alfred's Hospital for my treatment, I mentioned it to the nurses, and they agreed that before I get anything done, I should figure out what's up there. We postponed the treatment for the morning and saw an ophthalmologist. 

After a few scans and tests designed to look deeper into the eyeball, at the back of it, called the retina, he proclaimed that I likely had central retinal venous occlusion. What that essentially meant was that the back of the eye, the part responsible for picking up and processing sight and colour, had a vein being blocked by something inside it in the middle. 

 

Digital retinal scans of the back of the eye. Left one is normal, the right shows central retinal venous occlusion (what I have). The bright bit is the optic nerve, which takes signals from the eyes to your brain for processing. The darker patch in front (to the left) of it is the macula, the central part of the retina, the back of the wall, and the red lines around it are all blood vessels. 

In the right, diseased eye, as you can see, the vessels are more defined, they turn more and more on themselves and there's a little bit of bleeding there amongst them too as the blockage in the vessel causes blood and fluid to leak out. Below, if you're confused, is a basic outline of the vision. 

Some eye anatomy and terms in case you're slightly confused. The right is the eyeball side we see if you're wondering.

The eye and vision outside of the venous occlusion was fine. But the fact that it had happened in me, a young person with no other risk factors other than my graft versus host disease (from my bone marrow transplant), made it scary enough as it was. The treatment and outcomes for the disease, including blindness only made it worse... 

But the next morning, at 4am, when I posted that Facebook post, was even scarier than that. When I woke up then, the redness had, if anything, gotten worse, and there was a long black line of black in my left eye's vision too now. A stringy line followed by a ball on the end just above my central vision. My ophthalmologist had warned me that if it had progressed or if other signs had come up - go in and see them as soon as possible, or else, see emergency. And when I got there in the morning, they were concerned it was a retinal detachment; an acute emergency that would require immediate surgical intervention. 

When I saw the eye doctors, they gave me this much relief; it wasn't that.

But the central retinal occlusion was still there. If anything - it had gotten worse. Under scans, the macula was now swollen. And while I saw the specialist the second time, he explained to me the treatment and the outcomes there in more detail too.

First off - I'd have to get an angiogram - a scan which tracks the movement of blood through vessels - of the eye which'll show the extent of damage, and show if my retina was "ischemic", or "not getting enough blood to the point that it was dying" (blood = nutrients and oxygen, which almost all cells in your body need), in some regions. If it was, which, due to the swellings and progressive loss of vision in that eye, was likely at some level, then I'd have to get laser therapy (called laser photocoagulation) to "zap" and force any bleeds that may be there to stop; as well as reduce the progression of scarring. 

On top of that, injections into the eye (OUCH) of anti-VEGF (Vascular endothelial growth factor) - something that blocks the formation of new, in this case, dangerous blood vessels which can occur in some parts of the body if they're not well perfused with blood would also be required.

These therapies are pretty good at reducing the chances of progression and improve people's sights over months of treatment, but there is still a chance of glaucoma; a more serious, chronic disease that can cause blindness.

But the fact that I got it early means that I can likely avoid that, or even if I can't, I'll be able to manage it. Many people catch glaucoma in late symptoms; because it progresses slowly, it's called the "Silent Thief of Sight"; but there are many medications and options I have to reduce its effects if it comes to be. 

But damn... that treatment will not be fun. 

The Laser Photocoagulation, though permanent, and only requiring a few therapies, often causes peripheral vision loss, reduced night vision and eye bleeds; and can rarely cause severe effects too. And the injections can cause severe issues too, including loss of the eye, formation of cataracts and pain too. 

ouch doesn't do this justice...

But I surprised myself by how I took this all. 

First of all:

When I was told the bad news today, I took it all in stock and found myself doing the exact same thing I did to rationalise and focus on the things I could control, when I was coping with the shock of my initial diganosis with a life threatening disease. 

Almost automatically now; from the sheer repetition, the sheer amount of times I've had to do this I guess, I found myself 

(1) taking a step back, detaching myself from the unproductive fear and negative emotions (I had what I had now; and those thoughts, originating from MY MIND, weren't doing anything but making me feel worse about the situation, right?)

(2) focusing on, questioning and analysing my situation and my fears and doubts until 

(3) I could see what the best thing I could do for myself going forward was. 

In this case - yeah, I had this horrible announcement, and these horrible treatments in my future, but what was worrying and stressing about what I couldn't control, the past, and the pain in my future, gonna do other than make me feel bad about myself? Nothing, right? 

So I should focus on the things I could control. My questions of my doctor. Finding out if there's any alternatives I could take. Researching current treatment modalities, familiarizing myself with the treatment and figuring out how I could best cope with it all. 

Being happy and positive in all the occasions I could was another thing I could control. And all the occasions I could meant every occasion, every second of my life, except for moments of shock after bad news and the moments of pain that comes from procedures. Being aware that those moments were coming wasn't leaving me in despair, he fact that I could acknowledge they would come meant I was prepared; I was ready for when they did; and when they did, not only would I cope with their after-affects better because I was ready for it, I'd be able to get through the actual procedures easier too - because I'd be looking at the big picture. Something I talked about here: 

I was already looking at the bright side of this; the things on my side and the things that this could bring me. Despite all the mental preparation I'd done above, I still had a little fear; but when I took a step back and questioned that fear, I realised that the fact I'd caught it early, and been so proactive in getting on top of it (I've even arranged for my angiogram scan to be done even earlier - tomorrow actually - watch my Facebook page for updates) meant I had very high chances of avoiding any major issues like blindness and possibly glaucoma too. Though it may affect my going to uni for yet another year or at least interrupt my study - the fact I'd gotten it now, early into the semester, made taking that year off that much less burdensome - the fact that I'm still young meant I had years to get back into it and even if it did stop me from attending, it could allow me to focus on other things too. And I knew I could control HOW I DEALT with my situation. If there's anything these experiences have taught me - it's that our minds are powerful things. We and only we could control how we felt at any time in our lives; and when you can, why not be happy? I proved this to myself again today. When describing what I was seeing to my doctor the next morning, I realised the black ball with string attached to it" floating around in my left eye looked exactly like a "black semen." I blurted that out and the doctor, my worried mother and I all cracked up at that. 

This mentality - this ability to see things in "a second, better, more constructive way" - it wasn't "brave"; it didn't require "willpower" or "wisdom" to do. All I did to get through this tough time was take a step back, analyse and think deeply about what I was doing and think "What's the best thing I can do for myself going forwards?" And that's something ANYONE - including YOU can do to get through ANY hard experience! It may take some time to do - you may not see it straight away and you may need to TALK to someone to get there but YOU CAN DO IT. For ANY struggle you're going through. 

In this talk I gave, I explained how you can do this for any obstacle you may be facing!

Secondly:

The good that can come of this wasn't easy to see straight away. But I knew that at the very least - this experience would allow me to see how patients of eye diseases feel, every day of their lives. 

As I was driving in to emergency on the second day, and as the emergency doctor told me it may be a detachment and that I had to be seen ASAP, I was scared I could lose one eye's vision... and that was sobering, hell, it was scary at first. I was keeping my left eye closed for the journey into hospital. It was too disconcerting leaving it open and seeing red, and a floating black semen flying around. And when I did - I saw just how little I could see in comparison to having both eyes. Naturally, my left eye is weaker, it can't see as far as the right can. But even then - there's a whole side of me that'd be lost if I lost the vision in that eye. When I was walking around the hospital room, finding the eye clinic, I needed my brother to stay on my left shoulder and guide me the whole time to stop me from bumping into people or signs or structures. 

It made me realise how much even impaired vision, or half vision can be debilitating and hard to manage. 

We take our vision for granted sometimes... and everything we see - no matter how  - its beauty deserves to be recognised. The very ability to combine the data of 120MILLION cones in EACH of our eyes into something comprehensible is amazing on its own. Macular degeneration is something that affects many older people. This is how the world looks if you have it: 

But if I told you there are currently 39million blind people in the world; 80% of whom DON'T NEED TO BE THAT WAY - and that it costs only $35 to give someone their sight back (click here to find out how), wouldn't you wanna do it? 

Even if you can't donate right now, I'm sure you'll appreciate every second of your sight that much more now for it. I know I am. 

And Third:

Some interactions with my family today taught me some things myself. 

When I was told this news, and I told Dad about it, at first he went off at me. He asked me "Why aren't you wearing your glasses? Why didn't you take precautions!" I have a prescription pair, but as my right eye is fine and I can see clearly, and my left is mildly weak, I don't wear it.

My immediate reaction to that was anger. Glasses COULD NOT HAVE POSSIBLY prevented this. There was an occlusion in the veins of my eye. Only a broken off clot, or damage to the veins or other structures of the eye for other reasons could have caused that.

So why was this arsehole blaming me for this????

I was angry - and I let him know it. He always does this. Almost always when something happens - he starts blaming me for it - as if I could have prevented it. Sometimes he's right. "If you hadn't gone bike-riding in the middle of the day... you wouldn't have gotten a sunstroke." Very true... and that was dangerous. "If you'd taken my advice earlier and put on coconut oil before, your skin may be even better now." Yeah... well, maybe.

But other times - like this situation, his always blaming me when I cramp, asking "Have you taken your magnesium I gotten you?" when, on most occasions I had, and both my parents admonishments and accusations ("You didn't put on creme because I didn't see you do it!"), they get to me cause they happen over and over again. They can't possibly help - and often - I already had done those things and they weren't helping.  

So why kick someone when they're down????

But they do have a point sometimes. As do many people who criticize us. And though I never take criticisms from anyone else personally; indeed, I look at them as an opporunity to improve myself and my ideas, those closest to me, my family, I often ignore and get frustrated by... as many of us do. 

When they're wrong - they're wrong and it is frustrating. But not only should I contain that frustration and work on reducing that - I should NEVER let my pride from admitting I was wrong. 

One of my favourite quotes from any book ever was from Christopher Paolimi's Eragon series. Eragon, the hero, had admitted he was wrong. And wisely said;

"Only if you are afraid of looking foolish, [would I continue to maintain I was right when I wasn't] and I would have looked far more foolish if I persisted with an erroneous belief".

NEVER assume you're right. Always stand to be corrected; or else you risk not only being a fool - but harming yourself for your pride. 

I can stand to improve on that aspect with those closest to me. And I will from now on.

This experience - though daunting, and though it'll continue for a while now, can still teach me and make me a better person. In fact any experience in life can. 

But only if we let it.

My angiogram is tomorrow. Wish me luck! But either way it goes - I'm sure I'll be fine. At the very least, I'll be happy. 

An Update:

What's going on now, written on the morning of the second day after I wrote this. 

I managed to expedite my angiogram to Friday (the day after I wrote this) in order to get on top of it ASAP and start getting my treatment. When I went to see him though, I noticed concern on his face. After a few minutes of checking my eyes, he concernedly said,

"I think you need to go to Sydney Eye Hospital emergency." 

"Your optic nerve (responsible for taking signals from the back of your eye to the brain) seems to be a little swollen too now. Either that or it may be affected by it soon, as there is some near there..."

"And the retina, which does the main job of seeing and capturing vision looks pale around the center too..."

"I don't know what is exactly causing it... I don't know if it's bad. But you'll need a high dose of steroids, with constant monitoring I think..."

Obviously, I was concerned. Not only by the tone of his voice, but by what he said.  

The paleness possibly meant ischaemia, or cell death. Once cells die in some regions of the body... they don't grow back. And from my recollection... the eye wasn't one of them... And the optic nerve swelling too... that could mean complete vision loss in the left eye...

So we raced over there, were seen, and after a bit of a scuffle, and phone calls made to my haematologists (as they have mainly eye specialists on deck there they were unfamiliar with my condition and what medications I could/couldn't take) - I was admitted and given some methylprednisone. 

That alone wasn't easy... I was up til 3 and woke up at 6:30. 

But the eye doctor's next visit and check-up were much harder.

My worst fear was confirmed. 

There was no blood supply in the central region of my vision. A lot of vision there is nearly completely lost. 

There is still some. I can still see. But only hand movements from a few feet away. My peripheral vision is slightly better - but it's still peripheral vision, I can probably read HUGE letters nearby, and see shapes, which peripheral vision is supposed to do. 

But it STILL sucks. 

I dunno if I can play basketball again, ride a bike safely, drive. I don't know how it'll affect my ability to read or write - probably... well, hopefully, it won't do so too much.

I don't know what caused it...

So I don't know if it'll happen elsewhere. Even in my other eye... sometime in the future.

But at the same time, there are some things I do know... 

I'm a beast. 

What REALLY matters is still there.

I can still see. I can still think and learn.

I can still smile.

It's happened now. I can't change that. Even while I was getting the news... I was taking a step back, asking WHY of my doubts and fear and taking all those negative emotions away. I accepted what had happened, and was thinking about what I could do, what I should ask, instead of doing things that'd only make it worse; panicking and falling apart. I was focusing on what I could control instead of what I couldn't. My future. 

I've become adept at doing that.

You may be thinking, " You're so brave, so courageous, so inspiring to have done that! "

But really... and I've said this before... this attitude, it didn't take bravery, courage, willpower or strength to put on!

All it takes are a few simple steps - a few simple things that everyone does nearly every day too. All I do is apply them to not-so-everyday situations. 

All I did was:

1) Take a step back from my emotions and fear, and just analyse what I did... without emotions blocking my best judgement.

2) All the fears, the anxiety, the panic I had, I questioned, until I saw that most of them weren't really doing anything. The ones that were, I questioned again...
3) Until I could see a better, more constructive way of looking at things and pursuing my future. I asked as many, correct questions as I could of the person that knew; my doctor, as I could to help get me there. 

I talked about this more in that talk I showed above... But I mean you do this kinda thing everyday - every night before you sleep, you probably look over what you did, your interactions, some awkward situations and try to think what happened. You do it when looking in hindsight, and when you learn from mistakes. 

You do it when you think about how to best approach a test, or a job interview, or a game. 

Well, the latter you may not do now... You can do that to get better and achieve what you wanna achieve... but the others you definitely do. 

I didn't do anything special... I just made them work for me instead of against me.

All I did was get MY mind on MY side. 

A talk I did on this in the middle of this crisis

And if there's anything you can take away from this... yourself and to your friends/family (by sharing my experience!) - I hope you use this to get YOUR MIND ON YOUR SIDE too.

Feel free contact me about this, or anything you may be going through - contact details on the side and here:
email: nikhilthegrizzlybear@gmail.com
Facebook: www.facebook.com/musingsofamedstudentpatient

Another update:

So for a while they were suspecting the venous occlusion happened causing all this. But more recently, my ophthalmologists started believing it was my optic nerve that started the issue. It looked especially swollen when I went in to see them the Monday after (6 days after this) and we had to rule out any leukaemia relapse causing this...

So I had 2 MRIs and, more recently, a lumbar puncture to rule out the worst. 

And I'm happy to announce, that it's at least not that causing this all! Which is AMAZING NEWS!!!

Thanks to everyone who's been supporting me through this - especially those amazing strangers, and those I've helped before, who sent very personalised words of encouragement and advice through all this! 

To the amazing doctors and nurses - who not only got me through this medically, but managed to care for me through it all. All you guys, especially those who I bugged at midnight a few nights when it was really a crisis (and all of you messaged back giving me info and advice on what to do - EACH AND EVERY ONE!) - The biggest, most sincere THANKS for being the kind of people I talked about here - the kind of people 

We All NEED to be.

Thanks to my family too - THANKS - something I can never say enough

But I will NEVER STOP SAYING.