Help! Off Work and Desperately Need to Get Back!

[Andrew MacLean]

Em

Is there anyone at home who could peel a grape for you? The thing I found about being off work after my first graft was that everything I'd want to do when stuck immobile at home on my own was impossible because I couldn't see to do it!

All the best

Andrew

[sweetieoftwo]

God I know that feeling!

Unfortunately I only have a landlord at home, who works during the day. It is so frustrating as there are things I should be doing, like my coursework, but I just can't see enough and everything takes twice as long

I am so conscious about work...been off for nearly 2 months now on and off.

I'm stuck in a catch 22 as with my lenses in I can just about manage 30 mins before they become so painful I have to take them out...which leaves me back to straining and bumping into things again. How did you cope Andrew?

I need to get back to work for sanity as well as anything else! Driving me mad at home by myself every day! I have told work that as soon as I can get the lenses in for up to an hour at a time I can then commute in, but what I do when I get there, as I would then have to take them out, is another thing!

Andrew, how did you manage to get to work during the bad times?

[John Smith]

Hi Emma,

Don't feel sad - you can rejoice in the fact that your vision will improve, and you are getting some excellent care. Besides which, at least you got to play the tuba with Harold Bishop!

[Zeus]

Hello Emma.

I think you are a wonderful person and i do feel so compassion about you just by reading your words.You are an achiever for trying to cope with the burden of contact lenses.I think that if your eyes are hurting then there is something wrong to it and maybe the fitting.Also you should know from what material they are made of.I dont consider contact lens a health option for the eye.Also,you shouldnt RUB your eyes for no reason.Try high index aspheric glasses or sylicone hydrogel lens but i dont know if it is proper to wear lenses.Healthy aint for sure because they can thin your cornea more.And thats something you dont want to happen ever.

If you have at about 400microns corneal thickness you should immediately perform collagen crosslinking.I r know if you have performed and i just simply dont know because i havent read all the posts but if you havent you must do it.With this you will maybe wear a soft contact lens afterwards and the greatest is that your cornea will stiffen and be more powerful than ever.Also,glasses will correct more easily your vision.

From my experience,when i was looking the UVA light that the machine of crosslinking was emiting i was feeling like a form of energy that heal my cornea.Its a personal and unique experience that it is difficult to express it.

I wish for you the best and from my discussions with other London patients i have been told that you have excellent doctors that perform crosslinking but they practise private.London Institute for refractive surgery is one excellent choice and Dr David Jory is a well known doctor with great recommendations.

Best Wishes,

P.S Collagen crosslinking is a straight hit to the pathology of our corneas.With this we will freeze the disease and m.aintain our precious corneas

[John Smith]

Zeus,

Contact lenses come in many guises, some of them more suitable for KC than others. Just because someone has a problem with lenses does not mean that they should refrain from wearing them and go and get C3R.

As I said before, Crosslinking is a wonderful concept, and it does seem (to a layman like me) to work for many people. However, here in the UK, most people do not have health insurance, and we rely on the NHS. Also, many people do not want to try an "experimental" technique (which is the official status in the UK, I think) - especially on their eyes.

Contact lenses have been around now for over 100 years, and they are very well understood. You have not looked at Emma's eyes. Could I please ask you to stop posting instructions to people (as you did above) telling people what they should do. These are just your opinions, and we must allow people to make their own decisions. We also want to avoid scaring people new to the site as they may be about to undergo a graft or receive lenses. I have no objection to you promoting C3R - it was a major topic at our recent conference, and will be again the subject of a presentation at our forthcoming AGM - after all, but please don't push anyone down any treatment route.

Thanks,

[Sweet]

Zeus,

Hi there. I am going to fully agree with what John has just posted as this is exactly what I would have said. Emma is my twin sister and I have discussed the problems with her eyesight at length with her.

It is a persons opinion with their optometrist as to trying lenses and this forum is only talking about KC sufferers experiences. We are not trained so please do not post here and scare people about not trying lenses or likewise by promoting surgery. It is an individuals choice,we are not trained and even if we were we cannot see a persons eyes online!

There have been a couple of people coming here and posting detailed scaring news about lenses thinning our corneas but there has been no research done on this. It is our choice whether we would like to try a lens and many people myself included would not be able to see and work without them.

C3R is still a new procedure and your surgeon will go through all the risks with their patients before it is carried out. I wouldn't personally get this done yet and Emma does know this, but it is her choice if she is going to get it done and I will fully support her.

Emma, I only just talked to you and hopefully will see you tomorrow! You have some excellent advice and support here and I am glad that you have been able to talk about where you are. Please talk everything through with a professional before you commit to anything and know that as a forum we will be behind you whatever you decide.

Love you loads! Sweet X x X

[Zeus]

Hello Sweet,

You said that crosslinking is a new procedure??I r know if i understood correct but you are making a huge mistake.Please tell your sister to perform crosslinking to stop the progression of the KC.It is really sad that you are telling me not post at your sisters topic which the only thing i want is to help.

I am not scaring anyone.I am telling the best thing that she should for her eyes is CXL in order to freeze the disease.I think there are no words to that,I know that you know it but you seem to post things that you might dont believe because many people are reading the topic.But thats not the case.Advise your sister to save her precious corneas with crosslinking.And if you are a great sister you should pay also for the treatment.That is all about sisters and brothers do.Support each other.

Contact lenses are not healthy for the eye.It certainly provide good vision but in the long term you are making things worse.The treatment for KC is crosslinking.I have nothing to gain by saying this.It is rediculous to think for me someone that.You shouldnt be defensive.Think with your heart and you will see what is the answer.I doubt it that it will say CONTACT LENSES!!

Takecare your sissy,

[John Smith]

Hehehe.

Zeus, she doesn't need me to pay for her! If she went ahead with this she is going to be having it done on the NHS where it is still pretty new in the UK. Only last year people in Britain were starting to have this procedure done, before it was only really available abroad. I do not have any real problem with what this surgery entails, just that I personally wouldn't get it done yet as it is still something new. I would want some research and results following patients for a few more years before I seriously looked at it. This is not saying that I would come here and not support those who get it done, far from it.

I know that you and others who post on another forum are against contact lenses and this is what I was mainly talking about. I personally feel that all other options should be considered before having a surgical procedure. Lenses can be removed, a graft or another form of surgery can't. I know that intacs can be removed but it will leave scarring. This is what I was referring to, I don't need an emotional plea to be supporting her in getting something done which involves being on an operating table!

Thanks for supporting her, there is a lot of help and support here and it is good to read this.

Sweet X x X

P.S. Sorry this post is from Claire, I was logged in as John!