how long do i have to carry on like this?

[dweezil1968]

hi everyone I am new here. I am 36 years old and female. I have had KC for about 4 years. it just gets worse and worse. I have seen specialists at Worthing hospital, sussex eye hospital and centre for sight (Daya) I choose to buy my own lens privately as the best ones for vision for me (hard centre, soft outside) my NHS trust in Sussex will not prescribe, which includes Daya. I can't have a corneal graft until I 'am virtually blind'. I am in constant pain with or without lens. sometimes i think it's ok and then i get a shooting pain in one or both eyes, quite randomly. I am sitting at my desk at work with one lens in and one out as it is too painful. without both i cannot drive, read, watch TV or function at all! I am sick of this, the pain, the watering eyes, the foggy vision. Is it worth my GP referring me to Moorfields? I am desperate for a solution that works and i am not able to keep buying expensive lens myself. I get the discharge that i have read others talking about, so i am going to try this Systane stuff you guys recommend. Why is the NHS so rubbish at KC? or is it just my experience? I have a superb private KC lens fitter Mr Roger dunbar in worthing, he is trialling me some new lens soon, i am waiting for the first lot to try.
I am sick of looking like i am always crying, people saying' what's wrong with your eyes?' and not being able to do the most basic things. it is such a weird complaint and so little people know of it. If i had a pound for every well meaning person that says Why don't you just wear glasses? i could afford to go to brazil or wherever for an operation! yes i am feeling sorry for myself today!

[jayuk]

Hi

Well I would say dont worry...but that doent help...but what I can say is that majority of people here with KC now what you are going through in one way or another.

From what you are telling me, it seems you are not at a stage of a graft hence why you was told what you were......I would def recommend seeking alternative lenses...and not giving up on that.........Sclerals are a definite option.....when I could no longer wear Soft Perms, Corneals etc I went over to Sclerals...and they kept me off the table.......................Sometimes certain centres are good for grafts and not lenses and vice versa...hence your experience....but Yes you are right about the cost...I got fed up with MEH and the wait and lack of understanding ...so I also got lenses private.....but I always manage to see Ken at my scheduled appointments as he has a good understanding of what we go through!....maybe get a referal to him? or speak with your optom and see how clued up he is with Sclerals?....

[GarethB]

Unfortunatly ther NHS is a lottery as to what service you get and you are not alone in your experience.

My sight is good enough to drive despite no useful sight in whichever eye has not got the lens in. It is the only way I can see long enough to do a days work.

Just a word of caution regarding grafts, there is a lack of donour material and this is saved as last resort as with any other transplant procedure. The graft is by no means a cure as some have worse sight in the grfated eye uncorrected compared to when they had KC, it is just it can be corrected again. A few end up with perfect uncorrected vision as I did, but not 20 years post graft I am back on the lenses.

On a brighter note improvements are happening all the time, I have found that only one type of lens solution suits me and the is the Bosh & Lomb Boston Advance in conjunction with there saline solution. Systane helps and I have had to make changes at work regarding where I sit in relation to heaters, windows, lights and airconditioning etc and this has taken a lot of the pain out of lens wear. The type of computer moniotor helps me too as well as a range of tinted glasses.

It might eb a change in environment where you wear your lenses that may be causing the irritation, but this I thik is trial and error as to what helps best.

Although I regard my grafts as a success, keep it as a last resort.

Gareth

[Janet Manning]

Do try and get a referral to Moorfields. It will take several months and then 2-3 more months till you get new lenses but it's worth the wait. Sclerals may be suitable for you and you may be able to tolerate them better. They cover most of the eye you can see and for most of us who wear them, they are very comfortable and we get longer wearing times than with other lenses. Ask to see Ken Pullum. At Moorfields you will also get your lenses at NHS rates - currently about £45 per lens I think.
Don't give up. Your present situation sounds really miserable, but with luck things could get better with a visit to Moorfields. Make the point to your GP/hospital that they have a specialist clinic there for KC and have the expertise to fit specialist lenses.
Good Luck
Janet

[Lynn White]

Hi...

I hear your frustration... I am a optometrist myself..

I would strongly recommend you talk to your optometrist who seems to be actually trying to help you.

Referring to Moorfields is not the option.. (sorry guys who reccommended this!) why?? Because Moorfields in out of your PCT area and it would take ages to atually get there!

Please do give your optom a chance. You say he is "superb" - so do not throw in the towel yet!

We all know of KC here.. by all means vent your frustration.. but give your professional a chance!
Lynn

[dweezil1968]

hello guys thanks for all the replies and support. I am not dissing my Optometrist he is great but he only fits lens, and gets me new ones to try, i still have to go to the hospitals for the tests etc, and this is where the problem lies- Sussex eye hospital in brighton was so bad the KC machine was in the hallway covered with a blanket! Daya is good but only fits lens his NHS trust will prescribe within his budget constraints- hence i get the lens that work for me after seeing Daya, privately by choice. I think I will get my GP to refer me to Moorfields, i have nothing to lose! even if it does take months, cheers!

[Sweet]

Hmm i dont know about referring to Moorfields, whether it is a good thing or not, just wanting to add that i waited 11 months to get to see someone in Moorfields and i only live 5 - 10 miles away, and now i am waiting for a fitting for scleral lenses. So all i can add is that if you really need new lenses now i would ask your optom again as it could be a long wait. Sorry to sound depressing, but just wanted you to know this.

Good luck with it, Claire X x X