A New Cornea Is On Order!

​I had a great appointment with Josh my eye doctor yesterday. The blood vessel cauterisation surgery was a success and he has booked me in for my graft.  I was so excited I could have kissed him! LOL

He has put me on to his priority list and ordered the graft from the tissue bank but it could be up to about 2-3 months before one becomes available and gets tested for diseases etc.  Already I am thinking about the poor soul who is going to be in their last few months of life and presumably doesn’t know it.  I am so thankful for everyone who is signed up to be an organ donor.

I wish I could be a blood and organ donor but unfortunately I am not able to as I was living in the UK at the time of the Mad Cow disease crisis so under Australian regulations I can’t be a donor which is such as shame as I would love to help people after my death.  I do understand why I can’t though as I was talking to my doctor and he told me that last year he actually had a patient who died of Mad Cow disease some 30 odd years after the outbreak, which totally blew my mind!

I watched some cornea transplant videos on you tube last night, I found it incredibly interesting, especially the stitches, it’s amazing how they do those tiny delicate stiches by hand. 

In case you can’t tell I am super excited to finally get the green light, I’m not nervous at all I just want it done and to be able to see out of two eyes again as I have pretty much no vision at all in my left eye and the right eye struggles because of the severe keratoconus.  No matter how good the vision in the right eye is it’s still nowhere near as good as a normal eye because of the distortion.

I struggle so much at work and in my day to day life so to be given this gift of sight means so much to me.


So close I Can Almost Touch It! 


​I had some work done in theatre on my left eye to get it in better shape for the cornea transplant coming up.

Because I have a lot of deep blood vessels growing into the middle of the cornea from the inflammation of scleritis my doctor has had to try and get rid of them because leaving them would give a graft a very high rejection rate. The procedure I was having was to cauterise the blood vessels. 

I had sedation and a nerve block for the procedure, I remember two things, the first one being that the first cut he made hurt, I let him know and he adjusted the pain med and then right at the end I remembering him saying that he was going to put a bandage lens in.  The whole procedure went past in a blur and the next thing I knew I was in recovery.  My doctor looks extremely cute in his operating scrubs; I sure hope I didn’t tell him that in my medication induced haze LOL

I was home by lunch time and spent the afternoon sleeping. Once the meds had worn off it was really quite painful. I had a horrible gritty feeling like something was in my eye and was really irritating it.

I had a follow up appointment in the clinic two days later and he was happy with how it has gone but he couldn’t really give me an outcome yet because it has only just started to heal. I was kind of disappointed that he didn’t book my graft in; I was so excited that this final step was done and we could move on.  Anyway I have to see him again in 2 weeks and in the meantime I am using 2 drops, a steroid and an antibiotic 4 times a day.  There could be some more scarring to come on this poor old battered cornea as he made 9 holes in the cornea to cauterise the vessels.

Monday I am seeing my Rheumatologist who will hopefully give the go ahead to continue with the Infliximab infusions which are working really well.  Guess a lot depends on my blood tests etc but at this stage I would be gutted if they stopped it as I am doing so well and have adjusted to the side effects, and I really feel that if they stop this med the scleritis will come back.  Sometimes I feel it in the background but it doesn’t amount to anything because of the Infliximab.

Well that’s about all the news for now, more to come in 2 weeks with hopefully a booking for a graft!

My First Surgery Got Approved!


I am totally over excited. Every time I see my eye doctor I ask “can I have have my tansplant yet” he always says no, we need to get the scleritis under control first.  I asked him yesterday and he said yes!  OMG I just couldn’t believe that finally I am going to get my cornea transplant!  He actually did the paperwork to give to the admissions officer so I know it’s going to happen.

I had my first Infliximab infustion last week and within about 24 hours I noticed an improvement, my eye is still a little bit red but nothing like it has been and I have zero pain which is just incredible.  I have my second infusion next week.  It is just fantastic not to wake up every day in severe pain.

I have a small surgery to do before the graft. Because I have some big deep blood vessels in the cornea he is going to take me into theatre and under a nerve block he is going to cauterise the blood vessels with a needle and laser.  This procedure has some risks as it can alter the cornea making the transplant difficult. It’s a very delicate procedure that has the potential to go wrong if he is not very careful. We need to get it done though as my graft has a much higher risk of rejecting if I have the blood vessels.

I have to wait maybe 8 weeks or so as he has to fit me in to his theatre list but I don’t mind I am just happy that finally my eyes are in a position that we can do the first graft.

A very very good day!

Why Don’t You Just Wear Glasses? – Keratoconus

As a person with advanced Keratoconus and has REALLY bad vision it irritates me no end when people tell me I should just be wearing glasses as though I am vain or something.

Get this, one time an Opthalmologist told me I should wear glasses … seriously!

I would LOVE to be able to wear a trendy pair of glasses but unfortunately my vision is so bad and distorted glasses do nothing.  I really don’t put these horrible big lenses in my eyes every day and endure pain and discomfort for vanity. It is a necessity. Without my scleral lenses my vision at last check was around 20/450 (when I asked my optometrist the question).  I reckon its worse than that now I am at “counting fingers” when I get my checks now.  Legal blindness is 20/200 so yeah i’m very blind.  Glasses are not going to fix that!

Anyway, I found some pictures on line of KC vision, thought it would be fun to post so you guys can see similar to how I see.blurry-vision

This is what night time looks like with lights.

images (1)

Sometimes headlights look like this but are often worse.


I get a very distorted version of this, much more than double vision, more like quadruple vision.

images (2)

As you can see from the photos my vision is extremely distorted and not good at all.

I’m counting down to my 1st corneal transplant in my left eye, I cannot wait I am so excited!   Even though it will be a high risk graft I’m not nervous, just really excited to maybe get some sort of good vision after a lifetime of this.


Cornea Transplant – My Graft Diary

I thought I would start my diary with a little bit of information about Keratoconus and some background on myself.

Keratoconus (KC) is a progressive, noninflammatory, bilateral (but usually asymmetrical) disease of the cornea, characterized by paraxial stromal thinning that leads to corneal surface distortion. Visual loss occurs primarily from irregular astigmatism and myopia and secondarily from corneal scarring. All layers of the cornea are believed to be affected by KC, although the most notable features are the thinning of the corneal stroma, the ruptures in the Bowman layer, and the deposition of iron in the basal epithelial cells, forming the Fleischer ring. Breaks in and folds close to the Descemet membrane result in acute hydrops and striae, respectively.


I have had very poor vision my whole life, I believe I have had keratoconus since about the age of 11 but I wasn’t officially diagnosed until I was in my early 20’s.  When I got my first set of RGP contact lenses (after many pairs of glasses that just didn’t cut it) it was incredible.  I have no idea how I managed to get through school, learn to drive and start working with the vision I had.  With the lenses I could actually see colours that were bright and bold instead of washed out and faded looking.  I could see the leaves on the trees and the number on the front of the bus.  So many times I walked past people in the street and didn’t acknowledge them.  Not because I am rude, I just didn’t see them, now I could see so many people it was almost overwhelming.

I guess I wore RGPS for about 5 years then my eyes started to drastically change.  I lost so many lenses because my corneas were so steep they kept falling out.  I remember one time being in a meeting at work and both fell out and rolled across the boardroom table!

At this time I was living in the UK so went to see an Optometrist by the name of Ken Pullum. He basically reinvented the modern scleral contact lens.  Scleral lenses literally saved my life, without them I would not be able to work, drive, read or do any of the other things that I love to do.  They are a large lens that fits over the whole of the front of the eye.  As they sit under the eyelids they can’t fall out and they give excellent vision.  They feel really bulky at first but once you get used to them they are very comfortable.  For the first few months of using them I had a massive phobia about putting them in and taking them out I found it really difficult and stressful. As you can see from this picture they are a lot bigger than regular RGP lenses.


After about 12 years of wearing the scleral lenses, in 2005 I moved to Australia and continued to go about my business and day to day life.  Life was fantastic; I was literally living in paradise.  I thought that my KC was stable and that would be the end of it.  I was so wrong!

My vision steadily got worse over the years but then in 2014 I hit an all-time low.  I developed scleritis in both eyes.  Scleritis is an extremely painful inflammation of the sclera which is the white of the eye.  At times it was so painful I would just lay there moaning and crying wanting to rip my eyes out of my head.  Because of the massive inflammation in my eyes I started to develop corneal neo-vascularisation. The corneas don’t have blood vessels in them they are clear windows; they get the oxygen they need from the air.  Well my eyes were so inflamed I started to grow large deep blood vessels.  These have caused a lot of complications.  Because they are deep in the cornea they block the light from entering the eye and reduce my vision.  At times they leak blood and fluids and my corneas go a hazy white and I can’t see at all, sometimes for weeks until the haze clears. Thankfully this usually only happens in one eye at a time. This is a picture of my scleritis eye.

Right Eye 16 01 22

I am being cared for by an awesome eye doctor and rheumatologist.  My scleritis is being difficult to treat, it is stubbornly refusing to get better.  I have been on many drugs including Methotrexate, Azathioprine, Rituximab and Cyclophosphamide. So far nothing has worked well enough to give me long term relief from the pain of scleritis.

It’s a stalemate because my doctor will not give me the corneal transplants that I need until we get the scleritis under control.

Fast forward 3 years to 2017 ….

I am still struggling with scleritis, my vision is getting worse and I desperately need to get new corneas.  My doctor has agreed that we have nothing to lose by grafting my left eye now because I pretty much have no vision in it.  I am struggling at work and I no longer drive at night.  I see washed out faded colours and can no longer enjoy my hobbies.  It’s really limiting my life. Before the surgery he is going to zap the blood vessels with a laser because if he does the graft with the vessels there it will be a disaster and the transplant will more than likely reject.

I am due to start a new treatment in the next few days. Either Humira injections or Infliximab infusions.  My doctor says that once I am on this and the pain is controlled somewhat he is happy to proceed.

I seriously cannot wait, I am sad that someone has to lose their life in order for me to get the gift of sight but after being seriously vision impaired for so many years I am just so excited at the thought that I could get near normal vision.   I am 48 years old and I have never had anything near normal vision so this is a really big deal for me.  A life changer.


This is the start of a new journey for me, I hope that my experiences can help someone else with their own journey.