Sarah's Keratoconus Journey: a Second (Or Third) Opinion Matters!

Hi I’m Sarah and I’m 34 years old and live in New Zealand.

I’ve probably had problems with my eyes all my life.  At primary school, I would lose my place easily when copying work off the blackboard.  I would look back up from my book and it would take a while for me to find my place again.  Being a kid I had no idea this was not normal!  Subsequently, I was very slow completing my work.  I remember reading being exhausting.  I would miss words out, skip lines and to make it make sense I would automatically add words.  I remember reading a paragraph aloud as part of a group, and when I had finished I looked up and everyone in the group including the teacher were looking at me very oddly.  I suspect my version was somewhat different to what was written.

At 10, my parents were very worried about why I was struggling so much at school and they soon discovered it was my eyes.  I was given lots of exercises to do to “teach” my eyes to move (I moved my head rather than my eyes) and to focus.  The vision in my left eye was worse than the right, and Mum tells me that even at this stage the optometrists knew I had Keratoconus.  However it wasn’t until a couple of years later that I first heard of it.    At that stage my right eye was strong enough to compensate for the left and I didn’t need glasses.

I couple of years later it got worse, and much to my horror I got glasses.  I was convinced I didn’t need them.  Eventually, I managed to sneak out of the house to school without my glasses – was so proud.  Until school started and I realised actually I did need them.  Mum soon bought to school for me and I never forgot them again.

Unfortunately, the keratoconus in left eye quickly deteriorated and by the time I was 16, I was no longer able to see the eye chart.  I was referred to an ophthalmologist and this is when I met Doctor #1.  He put eye drops in to dilate the pupils which made my already light sensitive eyes even more so.  Doctor #1 yelled at me because I wasn’t able to keep my eyes open.  He didn’t give me much hope either.  Because of my history of asthma and hay fever, he thought I wouldn’t tolerate contact lenses, and he would only do a corneal graft, if a “catastrophe” happened to my right eye.

So life continued and about 4 years later we moved regions and I was referred to Doctor #2.  This doctor agreed with the last doctor, adding I might as well “throw my left eye down the drain”.  He thought there was no point doing a graft because I would only achieve 6/18 vision at best based on the vision I got from pinholes.  I am pleased to say both of these doctors have since been proven wrong!

A couple of years later I was reluctantly referred to my wonderful current doctor.  The reluctance was on my part because I didn’t see the point to going to be told there was nothing that could be done for me.  His opinion, give contacts a try, you may not tolerate them, they may not improve the vision in the left eye, but it’s worth a try.

Well, I did tolerate them and I was introduced to a whole new of being able to see.  I was able to see detail I had never seen before.  I could also see dust and it took me a while to stop wanting to sweep multiple times a day.

Life became so much easier, and I felt so much safer driving. I was able to see cars coming towards me without them being really close and I was able to overtake.  In hindsight, even though I thought I was coping well, had I been given contacts sooner I could have done much better at school.  As the keratoconus progressed I struggled to read the board and see PowerPoint presentations.  I survived University by not taking notes and just listening to the lectures, because I found that trying to write notes and take down what was on the board I missed so much because I had to strain so much to see.

Eventually I was given piggy back lenses to improve the comfort which was fantastic.  Unfortunately after 5 years the only soft lens I could use on my left eye was discontinued.  My fantastic optometrist very patiently tried lots of different lens to try and find one to fit.  He found lenses from overseas for me to try.  Unfortunately despite his best efforts, another lens could not be found.

So I was referred for a corneal graft.  I saw the same doctor which suggested a try contacts.  In July 2011 I had a corneal graft.  It came from a 44 year old.  Post op was complication free apart from filaments which caused some pain, but that soon went away.  However it was certainly a long post operative period.  It took over a year before the sutures were removed and it wasn’t until then that I saw the full benefit of the surgery.  Certainly I noticed an improvement immediately and I enjoyed covering my right eye to see how much I could see.

In my next follow up appointment after the sutures were removed I was amazed just how well my vision was.  Even without lenses my left eye is 6/9 and contact lenses help to give greater clarity.  My left eye is now my best eye, which I think is hilarious after years of it being so poor.<

I am so thankful to being referred to my current doctor. Without him, I shudder to think what my life would be like now.

2 comments:

  1. I loved reading your story. 6 months ago I was told I had Keratoconus and I was given rgp contacts. For awhile my eyes handled them. i am having a problem and my left eye with the rgp contact. I have used several different rgp contacts. My vision is still blurry and my left eye hurts when I wear it.

    ReplyDelete