Introducing myself

[Prue B]

I also have a direct familial link with KC, my sister and I both have it and have both had bilateral grafts. My daughter and eldest son both wear glasses. I took them to a pediatric opthalmologist because the local optom would not fit my daughter with glasses, because of my history. Apparently she has a really unusual astigmatism for a child, it is also an astigmatism commanly associated with KC. She also has an irregular astigmatism, also comman with KC. My son however just has a regular steep astigmatism, with nothing weird about it. It is likely my daughter has early KC, she is 4. I knew when I had children I may pass KC on because I knew it may be hereditry, I just thought it would happen when they were teenagers, rather than preschoolers. My other child has exceptionally good eyesight but needs to be tested yearly. I have had my tears I have done my cursing, now I am trying to teach her to read.
She also has one eye tending to shortsighted (her highest astigmatism) and the other to long sighted and tending to lazyness, so the first issue is trying to turn the right eye on, then we worry about the rest of it.
Mind you at 7 weeks this little girl decided to stop breathing and had to be resuscitated, for about 2 or 3 minutes I thought she was dead, this is heaps easier to deal with than that. That is what I keep telling myself given the choice of blind or dead I would so take blind and she wont go completley blind from this so that is even better.
But believe me I understand the worry as a parent you feel.

[Alison Fisher]

I'm glad you're feeling so positive Andrew. Our experiences with post op pain are the exact opposite of one another. The penny didn't start to drop with me until we were gearing up for the second graft that the pain I'd had after the first one was unusual. Well, when you have nothing to compare it to you just don't know do you? The second one wasn't as bad but still wasn't 'a walk in the park'.

I've found the whole donor issue quite difficult to come to terms with. Benefiting in such a major life changing way from someone's death just doesn't feel right, but then what better way to make that death meaningful? I hope that comes out right to you all. Not that I talk about it a whole lot but when it comes to my donors I do find it hard to find the right words without sounding trite.

Good luck on the 30th.

Hi Prue
You are spot on - it could be far, far worse. It's all about keeping it in perspective isn't it? As I said to a friend of mine this week these things knock me back for a few days while I work it all through in my mind then I bounce back and get on with it. I'm starting to 'bounce' but still doing the worried parent bit. Like you I assumed KC didn't show up until the teenage years. I've been very surprised to hear about younger children here with it. It just reinforces in my mind how often KC doesn't follow the expected path.

Best wishes to you and your family.

Alison

[Amarpal]

Alison

My RGPs are always changing too. It's very hard to get a proper fit.

[jayboi2005]

Hi,
nice to see more and more people coming here all the time!

RGP's lol i don't ever remember one pair i have had so far that i have ever been able to see better with.

Anyway welcome!

[Alison Fisher]

How often do you change them or have them looked at? How long does it take between the fitting and actually getting your lenses? My problem always seemed to be that in the time between having them fitted and actually getting my new lenses my eyes had changed shape again so they didn't fit. If I recall correctly it was getting on for a two week wait each time but hopefully things have speeded up since then.

[jayboi2005]

How often do you change them or have them looked at? How long does it take between the fitting and actually getting your lenses? My problem always seemed to be that in the time between having them fitted and actually getting my new lenses my eyes had changed shape again so they didn't fit. If I recall correctly it was getting on for a two week wait each time but hopefully things have speeded up since then.

Simular problem, my eyes change very rapid at the moment. Im not sure why i haven't asked too many questions about it. When ever i get my RGP's get them fitted then my eyes are suppost to adjust to them, i keep them for a few days and i still can't see a thing through them. But saying all this i was with SS so that could be half the problem already. Luckily im close to getting an appointment from the Hospital and hopefully that should shed some light.

[jayuk]

Alison

It can still take a while I can tell ya!....However, if you have the appt and fitting, its generally no longer then 3 weeks; however Sclerals can take upto 6-8 weeks.......

Clearly this does pose some issues; especially if you are going through an agressive period of the KC advancement.......but sadly this is where things can fall apart with the system....and you end up a) dealing with the wait and putting life on hold b) going into casualty and highlighting the fact that you can no longer function without lenses and need to be seen sooner)

J

[Alison Fisher]

Oh dear. That doesn't sound good at all. As I see it, from my own experiences, time is of the essence. It's a total waste of time, money and resources if the time between fitting and 'getting' is so long that they no longer fit. I had really hoped they had got that sorted by now.

I'll never forget the time I was lens-less and yet I had to wait eight months for an appointment at the hospital's lens clinic. The word despair does not even begin to cover it.

[jayuk]

Alison

I agree....however I must stress that alot does depend on WHERE you are being seen.....from the information that has been provided on these boards, it seems those that live outside of London have a better experience in Appts and Fittings......

J

[Andrew MacLean]

Jay is right, and this runs counter-intuitive. London after all has the UK gold Standard Ophthalmology Dept at Moorfields.

Andrew