Overwhelmed newbie!

[Cherry]

I have quite small eyes and I struggle to even get drops in. I have had the numbing drops so the doc could have a good look otherwise my eyes shut tight n won't open for anyone haha! If nothing else i'll be a challenge when it comes to them getting theses lenses in, do they put them in for you first of all?

I think I'll be having RGPs straight away I just keep imagining them just pinging out!

[Cherry]

Thanks Lia,

8 weeks seems like such a long time for the first appointment, considering I shouldn't be driving with my glasses, but have no choice! I know I sound impatient but it's frustrating, if I didn't have KC I'd be sitting pretty with my new glasses weeks ago!

Oh well, good things come to those who wait I guess. I will just be happy when I know I'm in the system and I've got my appointment to get this process started.

[Lia Williams]

Cherry,

You may be lucky at your hospital, you may not have to wait so long.

Don't worry they will put the lenses in for you, and take them out, at your initial appointment. And they will make sure you can cope with them before sending you home with them.

As you've only just been diagnosed with KC I would hope that you are offered soft lenses. It is far easier to change from soft to RGP than the other way around due to the moulding affects caused by the RGPs. Sometimes I think that some opticians are resistant to prescribing soft lenses for a long time RGP wearer because they might not give better vision and it would take a long time to establish whether or not the soft lenses would provide better vision.

It may be worth revisiting you optician so your glasses prescription can be updated as I believe it is a good idea to keep the glasses prescription up-to-date even if your wear lenses 95% of the time.

Lia

[jay87]

I wear RGP contacts and have 2 pairs of backup glasses one kept at home and one in the car. I'm lucky though in that I can read a number plate in glasses so could drive on them in emergencies. I keep a lens case in my car aswell with plenty of eye drops, little bottle of solution as well for if your eyes feel irritated.

RGPs do have a bad rep for being uncomfortable but give them 6 months. Your eyes will be sore whilst getting used to them but after a while you won't feel them. Oh and keep them lovely and clean with cleaner to keep them as comfortable as possible would be my other tip. Keep the plug in the sink as well lol

[Steven Williams]

Cherry,

First you need to find a top quality KC specialist/consultant in the private or public sector (NHS) who will give you the time, guide you and manage the condition.

If you can manage with glasses do so - dont use contact lenses until it is absolutely certain glasses cannot bring you up to the standard of vision you need for your life/work style. Wearing badly fitted contact lenses and contact lenses in dry eyes will inevitably lead to discomfort/pain and more eye rubbing and increase the risk of the disease progressing. Don't take any risks if you don't have to.

Before assessing a contact lens fit they should test you for "dry eye" and eye infections etc and also they should take topography records of your corneas and do this regularly to monitor the progression. If your specialist/consultant has not done this I would strongly recommend you consider the excellent advice offered by Ian Anderson above.

Also consider CXL (collagen cross linking) to try to stabilise and prevent the progression of the disease.

You have an excellent learning resource with the internet and here for self help in making the right choices and decisions.

Good luck

[Cherry]

@jay87 thank you for your post, it is useful to know that you have lots of back ups, and solutions etc as I was wondering about this myself. Because I have not got my lenses yet I am having to manage to drive with my current glasses. I manage fine, although night time is harder, but I think I will see about getting a back-up more up-to-date pair of glasses for if I'm desparate and am struggling with my lenses.

[Cherry]

@steven

Hi and thanks for your post. I am not sure if my consultant is a KC specialist, but he has said that I can no longer wear glasses and contacts are my only option. I have also been told I have dry eye, and allergies in both eyes, which concerns me about wearing contacts

The hospital I go to does not offer corneal topography but my consultant did say he 'may' refer me to another one which does. I am going to insist that he does refer me.

Thanks again for you advice this site and forum is a fab resource!

[Nickysells1]

Cherry

Suggest you get your doctor to do you a prescription for appropriate eye drops to whatever lenses you end up with.

I have a prescription card and get through 3 x 28 droppers of systane drops per month as well as using a Yorkshire eye bag company eye bag which is very soothing and I recommend.

Try and look into Kerasoft lenses. Very comfortable and much less prone to getting anything behind the lens hence less irritation I have found. But then we are all different.

With the nhs just don't take no for an answer and insist to the point of making a nuisance of yourself if you have to.

Best wishes

Nick

[Cherry]

Hi nick, thanks for the tips. I just looked up the EyeBag, it looks really good I'm going to order one! Perfect for my eyes before I even get to the contact lenses!

[Nickysells1]

Excellent.

At the risk of sounding like a parent ...DON'T RUB!!!

I used lacri lube at night and hypromellose through the day for years that served me well with rgp's. If you end up on soft lenses then the drops and lube all change


Nick