UK Keratoconus Self-Help and Support Association

Hey everyone,

I'm Bonnie. I was diagnosed with keratoconus 11 years ago at 18, now at 29 I have been told I need corneal grafts in both eyes, so am currently on the waiting list for DALK surgery on my right eye, I was told back in January that it would be 4-6 months before I got a surgery date, so now I am anxiously waiting for that letter to arrive!

What's others experiences of waiting list times? I don't know when to chase it up?
As in sure many of you can appreciate I just want to get this done so I can move on with my life.

My way of life is affected by my keratoconus, I think I have just got used to the way things are but after researching post surgery expectations, it looks like I can expect a much better quality of life

I'm so glad I've found this forum, I think I will need to vent and talk to others that know what I'm going through

Bonnie

I don't have any experience with corneal grafts myself but I wish you the best of luck.

Welcome to the forum! There should be some others that can assist you on here

Hi Bonnie,
Waiting times vary quite a bit from one hospital to another with some people only waiting around 3 months and others a year or more. So 4-6 mths is around the average. One way that could hurry things up, if you can cope with going in at very short notice, is to tell the hospital that you could go in if they have a cancellation which does sometimes happen (eg a person ahead of you in the queue develops a streaming cold the day before their scheduled op). And ringing the hospital to say that might be a good way of reminding them that you're waiting!
All the best with the surgery when it comes. Your research has probably told you that people vary a lot in how quickly they see the benefits of a graft. For some, the vision is noticeably better after a few months, for others it can take longer. Are you wearing contact lenses of some kind at the moment? Is your vision affecting work and life in general?
This is certainly the place to vent and ask questions. And if you'd like our information booklet about KC, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you one, plus some of the other info we produce.
Anne

Hi Anne,

Thank you, I hadn't thought about the cancellation thing to be honest, but I will definitely be doing that tomorrow. I just want it to be done as quickly as possible, I do find myself thinking about it a hell of a lot.
At the moment I wear contact lenses, how very they just aren't working as well as they have done, but the consultant I saw did say the Keratoconus is quite bad in both eyes.
Work life is a bit of a nightmare, I'm on computers all day and do find that the headaches are getting worse and on a daily basis, as for everything else without my lenses in I have next to no vision, I'm now living on my own after my relationship ended and I have to say it's been difficult adjusting to new surroundings. I will definately love a information booklet, I will email later today.

Thank you very much

Bonnie

Have you found the leaflets about KC and work that you can download from the home page of this site? www.keratoconus-group.org.uk/sitev3/publications.html
Access to Work may be able to suggest adjustments that could be made to make your work environment easier.