Tag Archives: Vision

Corneal Transplant for Keratoconus

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Finally for the first time in over 2 years I am pain free from scleritis (eye pain).  That is amazing and down to the Cyclophosphamide I started taking about 4 weeks ago.  The first week I felt terrible, really nauseas then I came good and felt great for a couple of weeks.  I was thinking this is brilliant, then in week 4 I am getting light headed, dizziness and fatigue.  It’s worth it not to have that awful horrendous eye pain!

Assuming my bloods are ok when I go back to the rheumatologist in 3 weeks I can move on and start thinking about my corneal transplants and where I need to be to be able to have my surgery.  I have severe corneal neovascularisation, the vessels I have are big and deep and there are plenty of them.  They are not ghost vessels either, they are still active and blood filled.  I can’t have my surgery whilst they are active as the graft would reject.  In my doctors words “it would be a disaster”.  One positive thing, in my eye check-up last week my doctor felt like there were less vessels in the right eye and maybe the Cyclophosphamide has got rid of some already.  I hope so that would be amazing.

I had two wishes, 1 was to get rid of the pain – check! and 2 was to be able to see properly.  So I am halfway there!  Point 2 is going to be harder to achieve, every time I see my eye doctor I’m like can I get my graft yet and always the answer is no.  Hopefully one day soon I will get a yes.  I am so desperate to improve my vision, I really struggle in particular at work reading my computer screen.  Some days are really awful and I can hardly see a thing.

I know having a graft doesn’t automatically guarantee good vision but it’s surely got to be better than looking through a forest of blood vessels, even if I have to wear a lens on it I will be ecstatic.

Keeping my fingers crossed that next time I get a check up even more vessels have melted away.

A Very Sore Eye, So Lets Read A Book!

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I have two hobbies, colouring and reading, I adore them both.  Had some treatment on my eye for my scleritis earlier in the week as I am having a very painful flare up. The whole right side of my head was throbbing.

Anyway i’m a bit too sore to colour and my vision isn’t that good this week either so i’m going to read.  I would literally die if I couldnt read so lets hope I never go truly blind! I love my kindle so much, when i’m having bad vision I can make the text huge if I need so I can still read.  

If i’m reading or colouring my wellbeing is good

Corneal Neovascularization (blood vessels in cornea)

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Corneas aren’t meant to have blood vessels growing in them, they are avascular which means they have no blood vessels and they absorb the oxygen they need from the atmosphere. The cornea is the clear window on the front of the eye that gives us clear vision.

Due to the inflammation of scleritis I have blood vessels growing into the cornea on my left eye.  The vision is hazy like looking through a fog.  Problems occur when the blood vessels keep growing and cover the clear portion of the cornea over the pupil, if this happens there can be serious consequences to vision: –

If they grow into the cornea enough they can cause irregularity to the cornea, which in turn will degrade the vision – I already have an irregular cornea due to Keratoconus so don’t want it to warp even more.

In severe cases the cornea will lose its clarity and with further vision degradation only a corneal transplant will clear the vision – don’t really want a transplant either!

I am currently on 5mg oral Prednisone, 25mg Methotrexate and Predforte eye drops.  I see my eye doctor again next week for an Avastin injection into the eye to try and stop the vessel growth.

Having these constant eye problems are really starting to wear me down.  I’m so fed up with the crap vision I’m getting, the pain and having to keep taking time off of work.  I have had chronic scleritis since last November and not a day goes by that I’m not in pain, my eyes look like crap, all red and ugly looking and I’m over it!  There I have had my tantrum think I will pop a couple of pain killers and go and have a cuppa!

As you can tell I’m struggling with it today.  I am so lucky that my mental health has been fairly stable throughout this illness, I can’t imagine how horrible it would be if my bipolar was unstable at the same time as going through this.  I will be fine, as usual I will slap myself around the face and tell myself to toughen up as it could be much worse.

Have a good weekend ☺

Calling All Scleritis People

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My endeavour to find someone to chat to with scleritis has been a big flop.  I know it’s fairly uncommon but I can’t be the only person out there suffering with this horrible disease.  My GP has never treated anyone with scleritis before so that’s a dead end.  I guess I could ask my eye doctor if he knows anyone who might be up for a chat.

I put a couple of posts out there on old scleritis forum posts and wrote a post on my blog, no likes or comments on either.  I would so love to chat with someone who is going through the same as me right now.  Chronic severe eye pain is such a debilitating thing, it’s hard to describe and it’s hard for my loved ones to understand how painful it can be.  They are so wonderful and are sympathetic but only someone with scleritis will know what I’m going through.

At the moment I have a flare up in the right eye and the left cornea is a little hazy due to the long term inflammation,  it’s like looking through a fog.

If anyone out there knows of anyone with scleritis who would be willing to have a chat, please could they contact me via my blog.  This is my last attempt, if I don’t get any responses I will just leave my scleritis page up on my blog and hope someone finds it one day.

Have a good day all.

Keratoconus & Topographies

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I found these topographies from 2008 showing my corneas affected by Keratoconus.  I wonder how they look now 7 years on.  I reckon it would be really interesting to see updated ones.  The way my eyes feel I think they would look pretty different.

I remember the day these were taken, my partner and I (who also has KC) took part in a study by a university in Brisbane.  They put us through a whole heap of tests to gather data and do research and hopefully help keratoconus patients in the future.

Keratoconus is an invisible disease, it can affect your life in so many different ways but no one knows that you have it.  That can make life so difficult as it can make us behave in ways that can make us look a little odd to non KC people.  People often get the blank stare from me as though no one is home because sometimes it takes me a while to process what I am seeing.

My uncorrected vision is 20/450; legal blindness is 20/200 so my vision is really bad.  With my lenses in I have normal vision (according to the Snellen chart) but I still reckon we see things differently to people with normal eyes.  Only a person with KC would understand that.  I remember one time when I was younger I was calling my cat in from outside.  I was calling and calling and she wouldn’t come in so I walked over to get her and it turned out to be an old chunk of tree truck – not my cat at all!  That’s the sort of thing that we deal with on a daily basis.

I think people with KC miss a lot of detail.  Up close vision is pretty good but distance is hopeless, even with lenses in I don’t see the stars in the sky, the pretty flowers on trees, and the beauty of the colourful Aussie birds.  I see smudges of muted colour not an actual object.  I don’t know what it is like to see crisp clear images it has been so long I have forgotten. 

I am longing for the day when they can do full eye transplants.  That would be so amazing to get a brand new pair of eyes.  Ones that are not always tired and sore and struggling to see.  I wonder how long in the future that is.  In my lifetime I hope because I want them bad!

Highs & Lows Of A Camping Weekend Away

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We had a great weekend of camping at Levuka 4×4 Park near Woodenbong NSW, spoilt by one thing.  Yes you have guessed it, my eyes.

It’s amazing that two tiny pieces of the human body can cause so much misery.  It’s not just the pain; it’s also the loss of vision.  We were sqitting around the campfire and the sky was beautiful and clear.  Everyone was saying wow look at the stars they are so beautiful; they really couldn’t believe it when I said I couldn’t see the stars.  They were pointing out the Southern Cross and the Milky Way and all I saw was blackness.  Nor could I see the trees, birds, or anything else that my fellow campers pointed out to me.

A combination of Keratoconus and Scleritis has really taken its toll on my poor eyes.  They are really damaged and struggling to get any type of useful vision every day.

One thing that did scare me at the weekend was when we were sitting around the campfire.  I kept freaking out thinking that the flames were lapping at my legs about to set my pants on fire.  Everyone was like, settle down the flames are nowhere near you, but to my crazy eyes I was about to become a towering inferno.  It really put a damper on what should have been a fun experience with my family.  At times it became quite scary and stressful.

How I look affects me too, it takes away my self-confidence.  My eyes (one or the other and sometimes both) are always bloodshot and look horrible.  When I meet people I try to keep my sunnies on because I can only imagine what people are thinking when they see my eyes.

It makes me miserable and depressed and I really can’t see an end to it.  I have an appointment with my eye doctor tomorrow.  You know the drill, sit in the hospital waiting room for 3 hours and then either get an injection in the eye or increase the prednisone, neither of which seems to be doing much.  We need to find a solution; I can’t be on the pred long term.  The Methotrexate was meant to do away with the prednisone but that hasn’t worked so where do we go from here?  I don’t know and that really scares me.  What if they can’t do anything and I am left like this long term?

That is my biggest fear, what if they can’t do anything to help me and I am stuck like this forever.  That doesn’t bear thinking about.

Sometimes I lay in bed and cry and wonder what my future will bring, how long will I be able to continue driving, working, reading and doing all the other things I love doing.  I don’t know is the answer and that scares me.

Welcome To My Pity Party

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I don’t feel like I am coping too well at the moment.  My eyes are painful, I’m struggling to see and I have a permanent headache.  I feel like I am at the end of my rope and can’t take much more.  Surely it has got to improve soon.

I am doing everything I can to cope with it.  I am getting up and going to work, I’m being as cheerful as I can be, I’m trying my hardest not to let it get me down, I’m doing everything I normally do but today I feel like I am failing.  I feel totally miserable and wish I was tucked up in bed at home on my own to wallow in self-pity.

Today I have a “poor me” attitude, why do I have all this shit it’s not fair.  I don’t mind taking my fair share of crap but I feel that the scales are not balanced at all, I seem to be getting more crap than the average person.

I want someone to give me a sympathetic pat on the back, make me a nice cup of coffee and to tell me it’s going to be alright.  That would be lovely.  I’m fed up with being strong and coping day in and day out.  I want to throw the towel in and say “that’s it you have won, you beat me” I want to curl up into a ball and sleep until it goes away.

But of course I can’t do that, I have commitments and obligations so yet again I have to drag myself out of bed, try to make myself look as normal as possible and just get on with it.  It is really hard to get through my days right now but I do it just like I always do because I have to.

I don’t have any special coping mechanism I cope because I have to it’s as simple as that.

Keratoconus – The Big Fight

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Keratoconus has really shaped my life, to an extent it has dictated what I can and can’t do.  Generally I don’t let it bother me, but thinking back when I was a kid I wanted to be a vet.  Because of the KC I didn’t do great in school, I tried my best but it’s hard when you can hardly see the words written on the blackboard, or read a text book without it being an inch from your face.  We all want to fit in and not stand out from the crowd so I pretended that I was like everybody else and blagged my way through school.  Now I have scleritis too and my eyes are in pretty bad shape I am feeling nostalgic and thinking about the past.

I remember when I was around 12 years old; I asked my dad what the time was because I couldn’t see the hands or numbers on the clock on the wall …. Actually I could barely see the clock.  He assumed I was stupid and couldn’t tell the time.  That moment really sticks in my head.

I struggled all through school and into my late teens wearing glasses that did nothing for my vision.  No one seemed to understand that I couldn’t see through them, everything was still blurred and doubled with streaks and starbursts.  People with advanced KC have really crazy uncorrected vision.

I couldn’t learn to drive until I was 19, the day I got my fist pair of RGP contact lenses was the best day of my life, suddenly I understood what it was like to really be able to see.  I went straight out and booked driving lessons.  After seeing nothing but muted blurs for my entire life I could finally see colours and shapes, the leaves on the trees, the number on the front of the bus, the expressions on people’s faces.  So many times I had walked past people in the street simply because I didn’t see them, they must have thought I was so rude, but I just didn’t see them.

I couldn’t stop staring at things, anything and everything it was so fantastic, things were starting to make sense.  It was like I had missed the first 19 years of my life.  That is so sad, it wouldn’t happen nowadays, parents would be all over their kids eyesight at the remotest possibility that something was wrong.

Pretty soon the RGP lenses stopped working for me; they would just drop out because my cone was too steep.  I remember one time sitting in a meeting at work and both lenses dropped out and rolled across the boardroom table.  After losing a heap of them it was time for a new plan.

I was thinking about a corneal graft when I discovered scleral lenses.  Scleral lenses are huge, the first time you see one you can’t imagine that it would fit in your eye but they do and they are very comfortable.  They vault over the cornea and sit under the eyelids so they can’t fall out.  Prior to insertion you fill them with saline which creates an artificial lens to look out of.  They worked really well and stopped me from having to have transplants.  The first couple of months of wearing them I had a real phobia about taking them in and out, as they really are massive.  It was something that I had to work really hard at overcoming if I wanted to wear them successfully.  They really made it so that I could live a normal life.

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Now many years on I feel like I am facing transplants again.  My optometrist can only get my vision so good in lenses and I have to wear glasses over the top for driving and distance.  The scleritis has made my eyes very sensitive and it makes my lenses very uncomfortable.  I have spoken to my ophthalmologist about my options.  My eyes are too far gone for either intacs or corneal crosslinking so grafts are the way forward.

Just one more hump in that roller coaster called life, wonder where it will take me this time.