Category Archives: Uncategorized

A kerataconus Update

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Topo Left Eye 2008

I have been on Cyclophosphamide now for about 3 months and it was going really well.  Well about 3 weeks ago I had a scleritis flare which was really painful and gave me a week long migraine because all of the eye socket was also inflamed.  I have had 2 orbital floor steroid injections over the last 3 weeks and now i’m sporting a lovely bruise under my right eye.

Anyway I digress, back to kerataconus news.  My doctor said that I desperately need grafts in both eyes but particularly in the left and we have been working to get the left one as healthy as possible before surgery, i.e. getting rid of the scleritis and corneal neovascularisation as much as possible.  If I have the graft with the blood vessels growing into it the transplant will most likely reject and be a disaster (my doctors words).

I saw him on Wednesday and he is now saying that the vision in that eye is so bad due to the blood vessels we may as well do the surgery soon as we have nothing to lose if it fails.  I have no useful vision out of that eye now even with a lens in so I tend to agree with him.  It will make the surgery a bit more complex as he will have to cauterise all of the blood vessels first.  I don’t just have a few blood vessels I have loads and they are really deep and growing into the middle of the cornea.

I am seeing him again in 2 weeks for a review of the scleritis flare so I will try and pin him down to a timescale of when my surgery is likely to be then. They are thinking about increasing my chemo to try and stop the break through flares which may not be fun as I might get increased side effects.  I am prepared to do whatever I need to fix my eyes though.

The pic is a corneal topo of my eye taken probably about 8 years ago, its the only topo I have.  I reckon my eye has changed heaps since then I would love to see an updated one!

Well that’s it for now, I have surgery in my not too distant future which I am very excited about, It will be nice to have an eye with some vision in it as currently I am seeing through a white haze.

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.

The Fens Series by Joy Ellis

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joy ellis.jpgI have been reading a really great series of books by Joy Ellis.  I have only recently found her books by browsing through Amazon and I am so glad that I did, they are a great read.

I have been lucky enough to read her last two on Net Galley in exchange for a review; actually I am reading her current one Killer on The Fens right now and I’m really enjoying it.  This book is currently 95 Cents on the Kindle store so it is well worth spending a Dollar to give this author a go.

The series is getting better as the books go on the characters are developing and forging relationships and as you get to know them the more you like them.  The storylines are interesting and keep me engaged right through to the end of the book.

If you enjoy a mystery thriller I can recommend this author, all 4 have been a great read.

My New Colouring Blog!

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I am finding that I am spending more and more time blogging about colouring so I thought I should start a blog just for colouring and art supplies etc.

If you are interested you can find it here:

http://www.colouringforwellbeing.wordpress.com

Would love it if you would come over and see what i’m doing!

Thanks!

Bleeding from the Eye!

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Had my Rituximab infusion last week, one of the side effects is things like bleeding gums etc.  Well I had a bleeding eye, twice!  Crazy right.

It was so weird when my eye bled.  It was like a white curtain came down over the eye for a couple of minutes and I couldn’t see a thing it was a total white fog. Then the bleeding happened and suddenly I could see again and everything was clear.

What I reckon is going on is that the blood vessels in my cornea are very fragile, and the rituximab has made them even more fragile and they are bleeding.  I see my eye doctor shortly so I will mention it to him and ask his opinion.

Corneas are not meant to have blood vessels but I have severe corneal neovascularisation.  I have large deep vessels growing into the cornea, caused by the inflammation from Scleritis. They are causing vision loss and I need a corneal transplant.  Whilst the vessels are active, i.e. filled with blood I can’t have one because the graft would reject.  In my doctors words it would be a disaster.  So anyway we need the vessels to empty and stay that way for several months before we can consider the surgery. I have Avastin injections into the eye every two weeks to help with this.

Well the eye hasn’t bled for a few days so i’m thinking that whatever has happened is over.  I have my next infusion in 3 weeks so I wonder if it will happen again then! Time will tell I guess.

 

 

 

A Death In The Family

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My dad died yesterday and although we had our ups and downs, and problems I really hope that he has gone to a better place where he can be happy and free from pain.

Rest in peace dad, I will look past our recent problems and think back as I do have some fond memories from the past that I will cherish and never forget.

Adult Colouring to De-stress and Relax

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I have been quite stressed and depressed lately due to my crappy eyes. To de-stress I have got the adult colouring books out again.  It really does work, I have even been doing a little colouring on my lunch break.

I really enjoy the mandalas like the one I coloured above, but my favourite book of the moment is Johanna Basfords Enchanted Forest book.  Every page is gorgeous and a pleasure to colour. The book is really lovely quality too with nice thick pages.  I can see myself enjoying it for a long time.

For pens, I really love using gel pens.  You get great coverage and they look vibrant and they come in so many different colours and finishes. 

If you are feeling a bit blahhhh try some colouring, it’s great, really fun and relaxing too!