What you know now that you wished you knew then

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pepepepe
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Keratoconus: Yes, I have KC

What you know now that you wished you knew then

Postby pepepepe » Tue 09 Sep 2008 2:09 pm

Hi,

I just though may be, the new people here may benefit from knowing:

What you know now that you wished you knew then


Please post below about this.

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Andrew MacLean
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Re: What you know now that you wished you knew then

Postby Andrew MacLean » Tue 09 Sep 2008 3:38 pm

I wish I had known what an improvement to my life would follow from having my Corneas replaced! If I had known how well I was going to see, I'd have accepted surgery years and years ago.

That is not to say that I regret the delay; after all, I didn't know then what I know now! :D

Andrew
Andrew MacLean

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pepepepe
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Joined: Sat 16 Aug 2008 12:13 pm
Keratoconus: Yes, I have KC

Re: What you know now that you wished you knew then

Postby pepepepe » Tue 09 Sep 2008 3:54 pm

Thanks Andrew for your thoughts on this.

There is many "things" and just thinking out loud on this here, and thinking about it there must be/are better points than I make below:

- Like when "an emergency" IS an emergency/what to look out for

- Somewhere you would recommend somewhere for their friendliness/experience to KC

- There are no quick fix's to KC, a best you will have to wait to get the perfect fit of a contact lens and the contact lens after that or with any treatment to reach its end in recovery. Its not just a matter of turning up and KC being sorted out there and then, healing/recovery times are long for example.

Pepe

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rosemary johnson
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Re: What you know now that you wished you knew then

Postby rosemary johnson » Tue 09 Sep 2008 7:26 pm

Things i wish I'd known:
- tht hydrops can and does clear up OK and is nt neceesarily going to mean an immediate graft. If I'd known that when I had my first two, I'd have been alot more chilled out and less stressed.
- about cxl when my KC was first developing. Not that anyone could have told me about it; it didn't exist then
- how to be more "aasertive" (I hate that word!!) with the "pros" a lot earlier, and not put up ith whatever the system dished out (or didn't) because the NHS is free and we should be grateful for it however idiotic its doings
- several years ago, when I first started to be not-ale to go out anywhere in case of flashbulbs, that not all the photophobia might be due to the KC (which now seems to be the medical opinion) and I'd insisted on getting a referral to the eye-neurologists about it years ago
and of course
- just quite how disastrously pear=shaped the graft operation would go, and I'd walked out - or never booked in for it in the first place
Rosemary


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