What do I do

[ajmartin01]

Hi

I have kerataconus in both eyes. I have had it for 3 years; the most horrid years of my life. I am currently on a waiting list for INTACS. I have been waiting since Feb.

I have coped OK until now, tried lenses for a year but they hurt and my hospital optitian told me it is the best they can do; so I dont wear them now as I am totally exhausted trying to argue with them. I wear glasses, but they do little.

I am now worried about losing my job because of this, my house in the process. I have written to the PCT, rung the hospital but I am still waiting for an op. I get married in 2 months and am so, so sad that my life has come to this now, struggling every day. I have grown depressed, take anti depressants and cannot see how I will cope for my life like this, if this is the only help available from an overburdened NHS. To them I am just a number, but to me this is ruining my life.

I dont know what to do other than what I have done already. I am scared of going blind, losing my job, losing my life. I am totally spaced out all the time, have panic attacks because of the ghosting I get and my life has been totally devastated by this condition. All I want is to be able to see and to enjoy life.

I would appreciate any assistance any one could give me, as I really dont know how to cope. I work in IT so cannot escape the ghost images for 8 hours a day, and when I come home I feel exhausted.

Many thanks - Alex

[Andrew MacLean]

Alex

Welcome to the forum. These do indeed seem to be testing times, but if you will allow me, it may be easier to separate out the issues you raise.

all the best with your Intacs surgery when it comes.

Is your optician attached to a hospital clinic, or someone you see on the high street? Not all opticians are particularly skilled at fitting contact lenses to eyes with keratoconus, and many seem unaware of the range of lens types and lens materials available for people with KC. If you do not see a hospital optometrist, ask for a referral next time you see your ophthalmologist. If you do see a hospital optometrist, ask to see one of his or hr colleagues, or for a referral to another clinic.

Ask your ophthalmologist what other treatment options there may be for you.

And keep coming here. We are a community of people with keratoconus. We have almost every opinion on the condition under the sun, and we are not slow to let people know what we think!

All the best

Andrew

[sarkac]

you will get over these times, and get back your reasonable sight, these are hard times , but they don't last for ever
god bless

[Anne Klepacz]

Hi Alex,
Have you seen the leaflets about KC and work that you can download from the homepage of this site? www.keratoconus-group.org.uk/sitev3/publications.html
Have you had an Access to Work assessment to see if there are adjustments your employer could make to enable you to do your job more easily?
As I've said on other threads, if you're not on our mailing list and would like more information about options from us, do e-mail your postal address to anne@keratoconus-group.org.uk
When my vision was at it's worst many years ago, I felt much as you did - worried about losing my job and then not being able to pay the mortgage, exhausted at the end of each working day and becoming a hermit. But, like others here, I got through and came out the other end with good vision (in my case, transplants, but options were more limited back then). So hang on in there - life with KC isn't grim all the time!
All the best
Anne

[Susan Mason]

Hi Alex

I have just posted a similar response on another thread however, wanted to comment also on your post. I don't have any magic fix or solution for you, just a few words to let you know you are not alone in your experiences or feelings. Keratoconus for many of us (myself included) can be a very unpredictable and bumpy journey with many ups and downs and the odd shock/surprise along the way.

Don't give up, be clear at your appointments making sure your feelings and obstacles to day-to-day life are fully understood by those treating you. The one thing I now feel very strongly is the case is that if you present yourself as 'coping' and 'managing' thats what they see and believe and they treat you accordingly.

Whilst I am not suggesting you should 'loose it' or 'freak out' at your appointment(s) you need to be clear they understand and not only how the condition hinders you from a vision point of view, also how it makes you feel inside and from a mentality/well being angle. I can say from experience the loss of vision can be debilitating enough without having to cope with the added feelings of low self esteem, loss of confidence/self belief and depression.

Maybe have some notes on a pad and try to take someone with you who can have a clear head as if you are like me it will likely all go 'in a whirl' and you will come out wondering why you didn't ask or tell them things and wondering if you had understood what they had said or if you heard 'bits' and not all of the consultation. I often feel the lack of support once you have had you 10 mins consultation time is very poor. Most of us I feel could do with someone to speak to at this point and whilst it may not necessarily need to be the consultant someone with some clinical or at least understanding of how you may be feeling.

Take care and fingers crossed for you.

Susan

[harker]

Hello ajmartin,

First things first, the chances of your going blind are very, very small. If your eyes get bad, a corneal transplant will always be available as a last resort - and while the recovery period is considerable - it means you should never feel you have to write off life as a sighted person. Some (many?) people, I think, end up happier with their transplant than they were before it became necessary.

Secondly, look into contacts again. A lot of your unhappiness is stemming from a lack of control over your vision. Just knowing that you have a pair of contacts in your pocket that can you give you better vision than what you're using to do a day's work will be a boost to your confidence, and make you feel less 'trapped' behind that crappy pair of corneas. There are lots of materials and lens types, and you may be able to find a comfort/vision compromise that - while not perfect - means you have an extra degree of control over how you see. Also, as I understand it, having INTACS inserted will offer no guarantee of vision without lenses, so it may well be something you should work on in the meantime.

Also, have you looked into private options? It's not cheap, I know, but if you can find the money somehow it's not something you should feel guilty about investing in. Having Crosslinking done may give you peace of mind. It won't fix your vision, but it will let you come to terms with - and get the most from - the sight you have with much less fear of progression.

It'll be ok. But take all the control you can.

[Lynn White]

ajmartin

What is exhausting you is the lack of control, as harker quite rightly says. You are going round in circles because your local hospital is saying they can do no more but you are still looking to them to sort this out for you.

Well there are two options here. One: your hospital and/ or your GP can refer you on to another hospital that CAN help you. You may have to do the research yourself to find out which one that will help you in the way you want, but once you have found it, you have every right to be referred onwards.

Secondly, again as harker says, you have the option of going privately, where options are much wider than through the NHS. This does not mean you have to do EVERYTHING privately - just getting other opinions may clarify what you need to do.

Contact lenses: there are many options that do not hurt including large RGPs, hybrids, piggy backing, sclerals and soft lenses for KC. Again, you may have to take the initiative yourself to explore these options.

I know its frustrating - you just want someone to get on and sort it out for you so you can get on with your life. However, things are often not that easy and it can be a shock to us that the NHS is not omnipotent, as we are sometimes led to believe by politicians. The truth is, medicine in general is not as omnipotent as we like to think! Ask anyone at all who has a chronic illness. Medicine can only do so much.

We are only just beginning to explore treatments for KC. Even ten years ago, we only ever talked about management, not treatment. It is a time of change for KC but with great hope for the future. Do try and take your situation into your own hands and take some positive action - it will make you feel very much better.

Lynn

[ajmartin01]

Thank you to everyone who has replied I really appreciate your posts. After chasing the NHS I have now successfully had my first op for cxl in my worse, left eye.

I have had a week off work, my vision seems slightly worse than before in my left eye- is this normal? I am due to go abroad this weekend and am a little concerned by the blurring and irregularity between my eyes.

j also find that in that eye it feels slightly lazy around the eye like the muscles in my eyelids are tired and weak. It doesn't seem to help the situation to the point I am focussing on the issue whenever I am awake. is this also an issue for people wit this? It almost also seems that my brain isn't processing the images I see properly in my left eye as I get strange sensations in this like I am missing some of my peripheral vision. it could just be because this eye is the worse eye and that the ghosting is causing this.

Thanks all again.

Alex

[mikkey3023]

Hello Ajmartin ,
All i can say to you , is be patient , things should improve for you , KC is a test sometimes and you will have good days and bad days , you will be stronger long term , try to stay positive and realise that somedays will not be great it is part and parcel of having KC , things have improved since i was diagnosed many years ago , and you are in the right place for advice on this forum .

Good luck.

[Lizb]

yes it is normal for your vision to be worse after cxl, part of the procedure is to 'scratch' the cornea so the collegan gets through the first layer. it will get better over time.