oh wonderful,why sooo long

[cherishu2]

I was told i would need to go to brum by my leicester royal to have a scheral lens mould done of right eye. This was july. I just had a phone call to tell me they were just about to refer me.Can ya believe that?.
She says i may get seen by the time baby arrives in april, but not for definate.
I had to send left lens back as i couldnt see and now they seem to have lost it.
I may as well have sat around until baby is born and then have my graft. In hindsight.
How am i gonna look after my baby?
I wont even be able to see my baby on the scan now.
Im so annoyed.
Trace
just needed to vent

[GarethB]

Trace

Vent away, that is what we are here for.

Just wish I could help further.

[Lynne Greyvenstein]

Just thought I would have a chat with you, did your KC get worse with your pregnancy and have you got it in both eyes... you poor sole, I know how frustrating it can be, I have it only in my left eye but that is bad enough.

I was pregnant in April and my KC started worsening in my bad eye and in the end the optician gave me soft lenses, which only work to some extent. I lost the baby in July.... so sad but what can you do, I now have a new gas permeable lens however as I am going to see the specialist Dr Dya in London I have to stop wearing them so that he can do an assessment on them on November 6th. Today is the first day I go back to using my soft lenses, its tough, then in two weeks I have to just use glasses.... sight is going to be difficult then but hopefully there will be some future benefit coming off the specialist visit, I am scared should I get pregnant again my KC will develop further. When is your scan for your baby, why don't you go for a 3D scan that way you get lovely colour pictures which you can keep to see your baby at a later stage when you get your new lens and also you get a DVD to cherish forever. Hope I've cheered you up... sorry to moan on about my problems too.... Lynne

[cherishu2]

Thank you.
Lynne so sorry to hear of your loss.
As regards KC and pg ive not noticed it get worse during pg with any of my kids. lens intolerance yes.
But then it has just worsened and worsened anyhow.
I have very limited vision in my right eye. To the extent that the eye is useless.But cant have graft cus of little bubbs.
I seem to have Jumps of deteration not slow ones.And in 4 weeks left eye had got worse so i couldnt see with new lens.
I had glasses that lasted 6 weeks then couldnt see through them.
All i want is a pair of fitting lenses


Its the time between appointment thats gets me.To them it seems nothing to go without lenses for 3-4 months.I have a 3 yr old, 2x4 yrs olds, 9yr old and 14 yr old. i have 2 children who parents couldnt care for them. What if my sight affects them being with me?.
When is your app with specialist?
I cant tolerate rgp lenses. I wish you all the best and hope they sort you out.
Wouldnt wish it on my worst enemy.
Good luck
Love Trace

[GarethB]

It never ceases to amaze me the difference between authorities. Leicester is about as close as Coventry, but because of where I live I have to go to Cov which I think is excellent and would seem to be bourne out by the service you have had in Leicester.

To me it is odd you being referred all the way to Birmingham when I know one of the guys who specialises in sclerals at Birmingham also has a clinic on Thursdays at Coventry which is probably easier to get to.

[cherishu2]

oooo ill look into that gareth cov would be easier.
i lived in wolverhampton before and they were great.
Id only have to ring mr mcutcheon and id be have app same week.I was never left without lenses for longer than three weeks. In fact when i moved here he sent me two pair to keep me going bless him.MMMMM maybe he knew what the LRI were like eh?
Love Trace

[Lynne Greyvenstein]

Hi Trace

Yes don't lose faith these things are sent to try us. I was miserable to a depressed point about a couple of months ago, think everything just got on top of me, with losing the baby etc and my eyes not being top ( only recently got a new RGP lens to work (Rose K)).

Its reassuring for me to know that your's didn't deteriorate during pregnancy gives me some more confidence to go forth with another ..... I've had KC for 12 years and I live on Isle of Man so trying to find anyone with any knowledge to sort me out is a problem. My optician only just heard of Rose K lenses which is working for me now in my left eye, my right one luckily no KC. However my specialist appointment on 6th November is to talk and have assessment for future treatments ie CR3 treatment or Intacs. Not sure Intacs would be suitable as mine has developed since I came off the contraceptive pill and then a little during my pregnancy. Worse thing is I have to stop wearing RGP lenses 4 weeks prior so now, and then stop soft lenses (which only help to an extent with some glasses 2 weeks prior. Last two weeks is going to be tough with just my old glasses and one eye with vision but have to make sacrifices to gain in long term.

It must be hard for you you poor sole with little ones and having limited vision, do you have any support from your partner or family and have you considered CR3 treatment. I hope you get sorted soon with your lenses, I feel so sorry for you wish I could call round and help you. Do you know how long you may have to wait. How far pg are you. When is your scan... you must be really excited....Are you going to find out baby's sex.

Write soon

Lynne

[cherishu2]

pmed you lynne

[Andrew MacLean]

Trace

Nothing really to add, just wanted to wish you well

Andrew