UK Keratoconus Self-Help and Support Association

Hi everyone, I have been piggybacking for years but just lately my vision is more off than on, if I get one eye focused the other one is out so now I am looking at other options, anyone know what other things are available? and where the best place to go is? I am based in Grimsby but I am willing to travel, I have been considering a transplant but I am worried about just how much time off work I will actually need.

I am a self employed Plumber! yeah I know I can hear the boo's already!! but I worry if I had to take to long off I would have no customers to come back to.. Tony

Hello Fazedup and welcome to the forum!
One of your posts seems to have disappeared (maybe because they both had the same title). Apologies - I was trying to reply to it! There are other options - you mentioned sclerals in your other post and quite a few of our members find those really comfortable. The nearest hospital to you which has a large contact lens department is Hull. I don't know if they do sclerals - not all hospitals do - but it's worth asking. Another possibility might be the new special soft lenses for KC such as Kerasoft or Acuity Softs. Or semi scleral lenses such as SoClears. Or Intacs might help to make the cornea flatter and easier to fit. I don't know if you're on our mailing list. If not, just e-mail your postal address to anne@keratoconus-group.org.uk and I can send you the DVD of our 2007 conference, which covered the latest options.
I hope you can find something that will suit you.
Anne

PS. You ask about time off after a transplant. That tends to vary, partly according to the job you do. Some people have gone back after 2 weeks, others have needed a month or two. One factor is that heavy lifting is out for a few months after the operation which might be a factor for you. (I'm sure people always need plumbers though!)
Anne

heya!!

I am in Leeds, so not that far from you

I am on the waiting list for right eye to be grafted as it is beyond useless, sat here tying iwth it closed, thank g-d for being able to touch type. Left eye is rapidly going down hill, ifyou want to chat feel free to message me

Lea
xox

Hi and welcome to the forum.

I have had two grafts (one PK and one DALK). My first one was followed by a six week break from work; nobody told me that if I agreed to being 'signed off', I had to negotiate a 'sign on' date. Actually the long time off work had more to do with the time of year and my job; the surgeon and my GP didn't trust me to avoid heavy lifting.

My second graft was contained within my annual leave allowance.

Be guided by your surgeon. When you get back to work, make sure that you wear safety eye protectors, and get somebody else to do the really heavy stuff.

All the best

Andrew

Hi Tony

A point to remeber about a graft which often fails to be mentioned to us is that it's purpose like any other corneal surgery for us is to provide a corneal surface that is easier to correct which may meany you still have a need for contacts.

That said I have seen many case studies where combining treatment options has meant this is less likely, once such treatment is the use of intacs followed by CXL which is currently only available privatly, but my understanding of the NICE guidelines, your primary care trust can apply for funding to perform this treatment. The Intacs component is available on the NHS but CXL would require the application for funding. Many of the case studies I have seen has shown those who are treated can ofetn get extremely good and in some cases perfect vision with glasses and others where 'norma' daily disposable lenses give perfect vision.

Typically one eye at a time is done and you'd be surprised at how easy it is to adapt to using one eye while the other recovers form surgery.