Quicktopic posts: Nov 2002

[Ray]

Hi Anne,

Thanks for your reply and for the welcome. I’ve emailed you. :)

Now that a second op looks on the cards I’m suddenly going through that cold-feet stage. I’d guess it’s the same for everyone, never quite knowing when leaving things as they are would be the sane option. Sometimes feels like playing pontoon without knowing the odds or how many cards are in the pack, and for bigger stakes. My first graft went without a hitch from beginning to end so there’s now reason why the second shouldn’t.

[harpomatrix@yahoo.co.uk]

Hi everyone

I was told I had Keratoconus a few years ago. I'm 19 now and have been seeing doctors at my hospital and moorfields for a while. Not just for the Keratoconus but also the fact that my eyes are constantly in and out of infection and water a lot. Not a good combination.

The Keratoconus has always been worse in my right eye. Visoon tending to be horrible, cannot see first letter even. A while back, i think in feb or march i developed acute hydrops in my right eye. it means that the cells in my cornea split and allowed water in behind the cornea. It meant fogy vision but it was not so bad that the vision in my left eye was affected. It got better after about 3 months I think. But my Keratoconus worsened as my cornea scarred.

Recently there was hope that a contact lens would help in my right eye. After an appointment at moorfields in early nov they told me to wait until feb 2003 as my left eye still needed time to get used to the contact lens i was given a little while ago.

But suddenly on monday i lost complete vision in my right eye. I was on the way home from university on the train. Acute hydrops again but much worse. I can't see anything but white in it. My cornea is visably fogged up. Its pretty scary. I can't get an appointment or snything till thursday. Problem is that my vison in the left eye is affected as with both eyes open i can see but with a slight white blur unless i cover my right eye.

It might look like i need a corneal graft but this is scary in itself. Its come at a time where i have important exams at uni, work and just after getting excited after having a few driving lessons. Seems like eveything has turned upside down on me at the wrong time. I think i'm a high risk for rejection as my eyes have a record of infection etc

[ali cooper]

Hi Hazel,

Pleased to 'meet' you. I too have just started wearing a Rose K2 lens. I too have mild KC but luckily only require a lens in my worst eye (left) even though I have KC in both eyes.

I was a little nervous to say the least about getting my new lens, the thought of something on my eye was not a pleasent one. However now I am getting used to a hard lens I cannot belief how clear things are and it amazes me everytime I pop the lens in. I am still building up my tolerance and finding the dryness a bit of a problem at the moment.

The group here have been very supportive and I am very glad to hear that this site was recomended to you as some doctors are not as open about information and support gained from the internet.

Best of luck for your lenses,

Ally






>From: QT - hazel <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: alicooperuk@hotmail.com
>Subject: Keratoconus
>Date: 25 Nov 2002 22:11:42 -0000
>


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[Clare Feary]

Hi Hazel
Its nice to know that someone else is as nervous as I am about getting contact lenses. As i have written before i did wear them once but that was a long time ago, so in a sense its like i am going to try them for the very first time. But the way i am looking at it is that i have to give this a real good go or it will be a graft and at the moment it is not a good time for that!!!
So good luck!!! I have to say that this website has given me so much info and made me realise that there are peopple out there who have gone through the same experiences and are willing to help or advise others.

[SHIRLEY]

In response to Steves message 311002, I have been wearing scelerals since last September but had problems with air bubbles creeping up and under the lenses so I was prescribed mini scelerals which were absolutely great for all of 6 -8 weeks. for that time I was able to wear them all day without any problems but whilst away on holiday I began to get this feeling that my eye was not getting air to it and had to remove the lens. I then had a cloudy patch on my vision which went after leaving the lens out for some time. I was really disappointed and when I spoke to Ken he said the lens material could be breaking down, but I'd only had them for that short time. Unfortunately that was in August and my checkup at Moorfields is in December! I now only get a couple of hours comfortable wear out of my minis and frequently have to remove and rewet them. I just get this feeling of pressure and driness and my eyes ache terribly.
Sorry to rabbit on, this is my first go at this and it's good to ramble on knowing that someone reading might empathise.

[gemstone@umbilical.demon.]

Dear harpomatrix (sorry, don't know your "human" name),

Sorry to hear about the hydrops and all the other problems.

Dunno if this is any consolation, but I had the same happen to
me when I was a student - in my right eye during the Christmas
vac in my first year and in my left eye just at the start of my
Finals term. oo-eer!! They sound very like yours - both came
up in a few hours, I couldn't see anything but white fog, and
other people looking at me told me the eye looked white and
cloudy. I know what you mean about scarey - it certainly was!

Hope your appointment on Thursday goes/went OK. Unfortunately,
it will take about a month to six weeks before a hydrops has
"cleared up" (literally cleared, so you can see through the fog, but also that the original split that let the fluid through has
healed) enough for the hospital to tell how well it will recover and what is the best thing to do about it. SO please don't
worry too much about not getting an appointment earlier. Do
students still get free prescriptions? - if so, it might be
worth asking for painkiller eye drops/ointment; otherwise from
my experience I'd say don't bother and stick to
aspirin/paracetamol and they're far cheaper (not that I like to
live on lots of painkillers, for fear of blocking a pain I ought to know about elsewhere, but at current prescription charges.....)
Hope your hydrops clears up - I was told when I had the first
one that it might mean a graft, but it seems that depends on how well the hydrops heals, and mine healed well enough not to need
grafting.


eyes are constantly in and out of infection and water a lot. Not a good combination.

Infection with what, and who says? (sorry to sound cynical!
I'm sure if it's a specialist they know eye infections;
non-specialists all too often say "oh, it's conjunctivitis"
about everything with red eyes, when really it may be a problem
with abrasion and not an infection at all... happened to me too, and I even knew some doctors doing postgrad work when I was a
student who said as much.)

Problem is that my vison
in the left eye is affected as with both eyes open i can see but with a slight white blur unless i cover my right eye.

I suspect your brain will quite quickly get used to ignoring the fluffy white bits.... otherwise, have you tried an eye patch? - or improvising with a scarf? Feels very silly walking about the street or round campus I know (been there, done that .... head
half swathed in white bandages!!) but might help you concentrate when you're studying?

Its come at a time where i have important exams at uni, work and just after getting excited after having a few driving
lessons. Seems like eveything has turned upside down on me at
the wrong time. I think i'm a high risk for rejection as my eyes have a record of infection etc

Sorry about all this, and the driving lessons.

Does your uni have a "special circumstances" reporting system?
I suggest you ask the hospital for a letter explaining about
your hydrops and its effect on your vision, and then talk to
your tutors and/or SU welfare officers about it - you may be
able to get forms filled in to register with the examiners that
your work has been disrupted by the hydrops, and that you've
been having to work with reduced vision, pain (if applicable)
and of course the stress and worry, and having to go for extra
hospital appointments. If the hydrops is still in evidence at
exam time, you may be able to apply for special exam
arrangements. Sorry if you know all about this already.

Incidentally, I've wondered before whether one factor in a
hydrops might be stress, such as from impending exams. Now
you've got both exams and a hydrops.... coincidence or what???

Good luck - keep us posted.

Rosemary

--
Rosemary F. Johnson

[harpomatrix@yahoo.co.uk]

Hi

I had my appointment on Thursday and was convinced they would say I would need a graft. I thought thats what they would say and in reply I would want one as soon as possible. I was a little suprised but they said they can't operate on it with hydrops and that i couldn't do anything about it but just wait. The doc said that it would be down to time. I asked how long.

He said from weeks to months and estimated a 2 to 4 month period. I was a little shocked by this. I don't know how i'm going to get through this time living like this.

Looking in the mirror I've noticed how my right eye(the one with hydrops) looks very different to my semi-normal left eye. My right eye looks bigger and more open. The cornea is bulging so I think thats why. Its also visably white. I look really freakish. My whole appearance has changed.

I went to work on the same thursday that i had my appointment. I couldn't look at anyone in the face, even collegues. When I was telling people what to do or talking I kept lookin down. Couldn't even look the few customers we got in the eye just avoided looking at them.

Sunday is going to be hell. Going to be very busy and lots of other people will ask me why i look werid. I got so many questions about my eye and I know people don't understand and i don't blame them. Its just too hard right now.

Uni was also difficult this moring. only went in for 30 mins to talk to a tutor but on the way there on the train, walking and in uni i kept lookin down. just can't face anyone right now.

Hope it looks a little less worse as time goes on.

Thanks to anyone who has replied or e-mailed me. And to rosemary who writes essays nearly as big as mine but not quite! lol. Thanks

PS. My name is Harpinder (or "harp" or "harpo" as people call me)

[iriscollins@hotmail.com]

My friend has keratoconus and has been told recently that it is a degenerative disese.However the doctor who first found it told him it is just the eyes change shap occationaly could some one help as his job is on the line

[Janet Manning]

Hi Harpinder,
You are going through a very tough time right now, with no immediate chance of improvement. I really sympathise as I'm sure everyone on this site will. I remember how I felt as if my personality had changed when I was going around without lenses after my first graft. I lost my usual confidence and felt embarrassed when I didn't recognise and greet people in the street. Crossing roads became a complete lottery!

After a while of going around like a frightened rabbit, withdrawing into my own little world, I decided that this attitude just wouldn't do. So I put my shoulders back and began to walk faster and look people in the eye (as far as a I knew where their eyes were!!). I fell over in the street a couple of times and bumped into lamp posts after dark, but I felt a whole lot better. I also became much more up front about saying that I had a problem eg. asking people to read the platform indicator board at Waterloo. Everyone was very helpful and I even made new friends.

I'm sure others won't notice how different your eye looks half as much as you do. Look 'em in the eye and be proud and if necessary tell them what's wrong. I'm sure enquiries are all out of concern for you.

All the very best . Let us know how you get on.

Janet

Hi Iris,
Sorry to hear about your friend. Please get them to read this site. There's loads of information already posted. We can always try and respond to specific questions. Most of us work or study. I've had to change my job and retrain, but it's possible.
Janet

[Deborah]

My 11 year old daughter was diagnosed with KC when she was 4 years old. She has managed with glasses until recently. She can see half way down the eye chart at the moment with glasses.

We have been trying lenses - 1 st soft lenses (which she finds comfy but can't see). We have tried lots of different hard lenses which she can see quite well out of some of them but she can't tolerate the pain and her eyes water constantly.

At the moment we get lenses through our optician (who has several patients on his books with KC) but we have to pay for lenses.

We would like to try scleral lenses - they seem to work with most people with KC. Would we have to pay the full price for our 11 year old or would the NHS foot the bill ? I am confused as to whether wo stay with her optician or to go on the waiting list to see someone at the hospital.