Keratoconus – my story by Beth

I was diagnosed with keratoconus when I was approx 21 and I am now 41. I had what was diagnosed as “lazy eye” growing up and my vision in my right eye slowly deteriorated through adolescence until it became really poor, so I went to an optician and was told that I had ‘keratoconus’.
I had zero clue what this was and was referred to the Princess Alexandra Eye Pavilion, in Edinburgh, Scotland. My eye continued to deteriorate and then I developed hydrops, which is very painful and I could not tolerate light.

Corneal graft

I had to wait on this eye settling before undergoing a corneal graft. I then had to get the other eye done approximately one year later. I had to wait a year plus to attempt glasses and the astigmatism was bad.
Eventually I had glasses with strong lenses and I managed fine for couple years but then I developed a cataract in one eye which was removed but I then developed glaucoma in that eye and had to get a trabeculectomy which unfortunately failed.

I have now lost the sight in this eye permanently. My other eye then developed glaucoma and drops were tried to stabilize the pressure but to no avail due to my allergies which restricted the drops that I could use. It was then decided that my only option was to have an Ahmed glaucoma valve inserted as they didn’t think a trabeculectomy would work.

I received the Ahmed glaucoma valve in December 2010 and it has been successful in its job of stabilizing pressure.
To reduce internal friction within the valve system, the Ahmed™ Glaucoma Valve (AGV™) utilizes a specially designed, tapered trapezoidal chamber to create a Venturi effect to help aqueous flow through the device. As demonstrated by Bernoulli’s equation of hydrodynamic principle, the inlet velocity of aqueous entering the larger port of the Venturi chamber increases significantly as it exits the smaller outlet port of the tapered chamber.

The Ahmed™ Glaucoma Valve has no obstruction in its path of fluid flow. For the flow to be non-obstructive, a particle large enough to pass through the lumen of the tube, will easily pass through a much larger opening of the Venturi-Flow™ chamber. The elastic membranes help to regulate fluid flow at all times, consistently by changing their shape. The tension on these membranes is responsible for reducing hypotony.

Rejection

However unfortunately last September on my 40th birthday I ended up back in the Princess Alexandra Eye Pavilion in Edinburgh because my vision suddenly went cloudy. I was admitted and although given intravenous and oral steroids and hourly dexamethisone drops all to no avail and the cloudiness just worsened.
It turns out that my corneal graft has rejected requiring another graft. The doctor says it’s a big step with no guarantee of success. Well I guess there are always no guarantees with any op, however this is my last chance so I don’t want to rush in full steam ahead. I need to be more mentally prepared. Some days the cloudiness is not so prevalent but my vision remains still very poor. I manage. I just hope I don’t lose it.

My story is unique

I hope others have not been through all this. But one thing I will add is its rare.

I have two older children from my first marriage 22 and 20 they have their own place each however I have a nearly 11 year old, a nearly 5 year old and a 3 year old and my husband is recovering from illness. I had too much to focus on and became extremely depressed, especially after my dad passed away in 2011.

I feel due to my eyes that I would like to be in central Edinburgh nearer resources failing that next to the sea would be lovely. Oh I can but dream.
I don’t know what the future holds for my eye been told another corneal graft can be done but it’s more risky than a normal second graft with less success expected due to added complication of the glaucoma valve.
At the moment I get some clearer spells however I can’t predict when it will cloud over as it can be within minutes so I am not good on own outside.

I know long term the possibility of a long cane or a non allergic guide dog may be a reality but I am scared if I get a graft it may go altogether. I am usually glass half full but too much been going on to focus on something else.

Coping every day

I find Louise Hay good as her affirmations help me. I can use the PC at moment because of a magnifier though I need the text bolder so have find out how do this. All I would say to you is take a day at time and write your feelings down. When I lost the sight in hospital I started (not in straight lines though as it was like writing with invisible ink) writing poems of how I felt and I listened to the radio and discovered instrumental classical music on Classic FM which relaxed me.

I am terrified of the prospect losing sight. I try to draw though not a pro I just enjoy it and I also love flowers and sunsets and seeing my kids so I don’t want to contemplate losing that, so for now what I do is peel each day apart and tackle it one bit at a time.

I do suffer extremely low moods but I try to occupy myself as best as can. It’s ok to be upset you are adjusting to an enormous thing.
I have better days than some. Some days it’s as if glasses steamed up bit others it’s a lot. So I see enough to manage some days but most time is not the case however I know I am lucky to be given this opportunity as for some this is not the case.

The future

I wish anyone well with any operations they going for and don’t let my scenario put you off its just one of these things that can happen.
Eternally grateful to corneal graft donors and their families. Thanks does not come close to the appreciation that I have. Maybe I will get graft in future but it’s a very big risk so I don’t know what do as yet.

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8 thoughts on “Keratoconus – my story by Beth

    • Thanks i am so grateful to have found this site sharing stories with others who suffer kc helps alleviate the isolation if i can help someone else by fact i am still surviving then i am happy.good luck re your own journet

      • Thank you, Beth, and I understand the isolation and the atypical KC. My KC was caused by Ehlers-Danlos syndrome (EDS), so things were already hard and then the KC showed up 2 or 3 years ago (mid/late 30s or so) and went crazy. I was in a trial here in the US for CXL, but due to my EDS, just about everything that could go wrong did. So, I do understand not being the norm and dealing with too much on your plate.
        Take good care…

  1. Reblogged this on beththomas2605 and commented:
    Hi hopefully i am posting this on my blog lol.new to this. One those days today.felt good in morning had Halloween get together last night which i survived was not overly busy and lighting good so nice time.knew had another tonight but just do best can cos venue lot darker but enjoyed nonetheless.so morning good night good but afternoon felt low.we have 3 rabbits.beans toast and Eddie went out to open up their rain covers cos was nice sunny and i fell over kids small bench.hurt hand and knee a little but was my pride hurt most.was the sun (love it so not complaining) but vision not the best but the glare didnt see bench.just so annoyed myself and got to me bit and i retreated within and i threw in towel and went to bed just felt overwhelmed and sorry for myself i guess we all get that time to time im fine now dusted myself doen went party.hope everyone else ok

  2. I have tears rolling down my cheeks while i’m reading this……feels as though i’m so bitter and such an ungrateful person and don’t deserve to have the gift of sight. I don’t think i could handle half the frustration and disappointment that Beth has endured.

    I also had a corneal graft about 18 years ago and i take each for granted, yes i should be more grateful and humble and more giving.

    • Don’t feel bad Anthony. We are all different and cope and react in different ways. The gift of sight is amazing. Can I ask whether you’ve signed up to give it back some day? That’s a way of being grateful. And yes we can be donors if we’ve had grafts ourselves

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