My First Surgery Got Approved!

download

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!

Advertisements

A Horrible Scleritis Flare

I am having the worst scleritis flare, my eye is red and so painful I can hardly bear it.  My eyelids and under the eye are also swollen and sore.  This is the worst flare I have had in a very long time.

Scleritis eye

Over the last month I have had 2 Sub-Tenon’s steroid injections. I have been getting these as the orbital floor injections are no longer working.  Yesterday I had to have another as the one I had last week didn’t work.  Last week I saw a different doctor and my doctor feels that a couple of things contributed to it not working.  One the doctor may not have got the injection into the correct area and two I have so much scar tissue on my sclera from all of the injections I have had this could have stopped the steroid getting into the right area. My doctor seemed to be cutting and injecting for ages yesterday.  He said the scar tissue stopped him and he had to change the cut and injection to a different area.  I could feel him rummaging around in my eye but fortunately I didn’t feel anything apart from one of the injections.  That was quickly sorted out with another numbing drop.

sub tenon

 

My eye is really sore this morning from the cuts but much of the scleritis pain has gone thank goodness.  Scleritis is a unique type of unbearable pain.  I have tried touching my eye (with clean hands of course) and it feels really tender and very bruised a much different pain from scleritis.

I also spoke to my doctor about when he thought he could realistically graft my left eye.  I am increasingly struggling at work and generally in my own daily life so wanted a time scale of when this horrible vision could potentially get better.

He feels within the next 3 months I will have a new cornea.  I am having my 1st Infliximab infusion on the 31st August and he wants me to have my trial (weeks 0, 2, 4, 6 & 12), then if it works that will be fantastic and we will go ahead with the graft.  If it doesn’t work he indicated that he will still do the graft because my vision is getting worse and we need to do something soon.

I am worried that he said it would be a high risk graft due to my extensive corneal neo-vascularisation, I believe it has a much higher risk of rejection than someone without blood vessels growing into their cornea.

He wanted me to try and get over the worst of the scleritis first so that I am not battling pain in both eyes but the way things are going that might not be possible.  In just a couple of months I will have had scleritis pretty much constantly for 3 years.  I really hope the Infliximab works; my doctor said everyone is pinning their hopes on it. I think if it doesn’t work we might be out of options so I have no idea where we go from there. Can’t even think about that scenario right now I have to be positive and think that it will work.  It will work!

My eye saga continues!  I so cannot wait to be pain free and have better vision!

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.

keratoconus

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.

cornea_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.

download

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