Update on hospital visit and advice needed please!

[donna]

I went for my first hospital visit this afternoon, I felt awful! I must have been stressed out because I had a panic attack. I was dreading it because I hate hospitals and my dad and grandad died in that hospital. I also have a fear of all things medical.........not a good start lol Anyway I went in and had my vision tested, it was the worst eye test ever. I could hardly see a thing! With my left eye I could only just make out the top letter, and that was doubled! Things improved with the pin hole test and I could see loads better.
Had the consultation and he was really nice and patient, turns out I have KC in my left eye and the start of KC in my right eye.
He asked me all about allergies etc and told me that they are not sure of the cause etc he said I have to put olopatadine drops in my eyes when I have hayfever and I am to see a local optician who is a lens specialist. He said I should start with rgps and that I would have a normal lens in my right eye for now, I go back to the hospital in 3 months to check progress and to check for any further developments etc.
I still feel a bit shaky and very tired.
I asked about work, he laughed when I told him I am a deafblind support worker! He said I should be fine to continue working but would not be able to drive until I have proper corrected vision. Thing is my job involves lots of driving around, guiding people and reading etc. I am thinking that I would cope better if I was off work until I have my lens sorted out and I have built up decent wear time.
What do you think?

[donna]

Because my local hospital has no contact lens dept I have been refered to a optician, will this be more expensive? Also what are the good and bad poinys of getting lens through the optician instead of the hospital?

[GarethB]

Hi Donna,

Taking time off while your vision gets corrected is a good idea, this is what I agreed with my emplyers in 2004 and it helped with the stress Iwas suffering because I was worried about how I would get to work and do my job properly and made myself quite ill as a result.

However you will have to get your GP to sign you off as we can only self certify for one week and I beleive optoms can not sign us off sick. Your employers also have to make reasonable adjustments so I thinka s long as you explain to them the long term benefits they should be OK. They may request instead that you do something slightly different but without the driving.

Due to the size of some hospitals it is not cost effective for them to have a lens department and contract the service out to lens fitters they know and trust. Although the hospital I go to has a lens fitting department, all the optoms work in private practices too so the quality of service should be the same.

As for cost, my understanding is that if it is contracted out you should still be paying the same as us who get treated through the hospital and that is £50 per lens. If the first lenses do not fit too well do not worry, it often takes a couple of fittings. Plus you do not have to pay for the replacement ones, only if you loose a set do you incur more costs.

Hope this helps.

[Sarah M]

Donna

I get my lenses from a local optom and not the hospital, and have never had a problemo.

Maybe you could ask your employer if there is anything you could do that doesn't involve driving until your lenses are settled in.

Sarah

[donna]

Thanks alot Gareth, that cleared up all my questions and doubts. I will see my gp and my boss tomorrow and will also make an appointment at the optician the hospital told me to go to, they said I should get seen quickly and that he is a very experienced in fitting lenses.
Thanks again, I will sleep better now

[Andrew MacLean]

donna

Don't worry. The optician to whom the hospital referred you will be experienced in fitting KC eyes: my original diagnosis was in Aberdeen where this was the procedure. The high street optician to whom they referred me was a KC specialist, endlessly patient with me and he never put a lens into my eye.

This was important for me, because I was very scared of anyone or anything touching my eye. He sent me to his "trainer" who experimented with different blank lenses, getting me to put each into my eye and talking me through the procedure each time. By the time they found the lens that fitted most comfortably I was a bit of a pro at popping them in and blinking them out!

Like you, I find hospitals a bit of a challenge. I saw some research recently that suggested that the majority of people have a measurable increase in their blood pressure when they enter a hospital, so this is a common phobia, and not one unique to either of us.

All the best

Andrew

[donna]

Thanks for the reasurrance Andrew, it DOES help to be able to come here and get advice etc.
Today I went to see my gp and she signed me off for a month with a view to extending it for as long as needed, she was very supportive and her husband has experience of wearing hard lens in both eyes. I took the sick note into work and they were fabulous! I am having no problems with work at all, I will still be included in meetings etc and am able to go in on days I am able to and work in the office on a voluntary basis, one of my worries was ending up staying at home trying to watch tv all day! So when I want I can go in and work and can stay at home when I want...........sounds ideal! My boss even offered to come and pick me up then take me home, cant believe how nice they were. I am also getting the chance to look through a variety of low vision aids and my boss is going to do a series of risk assesments ready for my return to work, I will go back on reduced hours at first etc any thing that needs to be changed to help me will be done, I wish everyone had such an understanding employer but hopefully this will show that there is some bosses who are understanding and willing to help. So today I feel tired but happier. I rang the optician and am waiting for them to get back to me, the optician works at the hospital aswell so I may be seen by him at the hospital, I would rather go to the shop but will be advised by him and take rescue remedy next time!

[GarethB]

Donna,

Excellent outcome, just need the same with the lenses.

Unfortunatly there are excellent employers like yours and mine and down right disgracefull ones. Absolutly no middle ground.

[donna]

I told them about Pat's experiences and they were shocked that people can behave in that way.
Fingers crossed the lenses work out just aswell!

[Eddie S]

Hi Donna,

Have a hug!

I've found they are great medicine for KC, along with good quantities of this forum! They may not slow down the onset of KC but they make you feel better!

Good to hear your employer has been good about your KC - i've been really lucky too and work have helped me out with larger monitors and have been very understanding about time I have to have off for (sometimes lengthy) hospital visits. If anything you'll become more of an asset for them now as you'll know how to cope that much better without sight!

Good luck with the optician. I'm sure you'll be fine and seeing the world in focus again soon.

Enough of my yabbering.

Ed