Crosslinking & Pregnancy

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Marie_93
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Crosslinking & Pregnancy

Postby Marie_93 » Mon 15 Apr 2019 6:35 pm

I am due to have cross linking in the next couple months. I have been waiting since October 18. Me and my partner have wanted to try for our second child so they can be close in age to our first, but we have had to put it off because of the cross linking, I am starting to get inpatient and feel annoyed I can't get pregnant until I've had this done. Does anyone know if it would be safe to get pregnant before the OP and instead have the OP after giving birth? Is there risks getting pregnant first? Ie there risks having the procedure done and then getting pregnant straight after?

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space_cadet
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Re: Crosslinking & Pregnancy

Postby space_cadet » Tue 16 Apr 2019 9:49 am

if your happy with your vision level, dont let it control your fertility. i is your body n your right to choose not a doctors
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Anne Klepacz
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Re: Crosslinking & Pregnancy

Postby Anne Klepacz » Tue 16 Apr 2019 11:20 am

There's an interesting article on this topic on the American KC website
https://www.nkcf.org/pregnancy-crosslinking/
And this on the Light for Sight website
https://lightforsight.org/wp-content/up ... c.pptx.pdf
While it seems like not all pregnant women experience progression of KC, it's common enough that having CXL before becoming pregnant seems a safer option. The second article suggests that you might not need to wait long after the procedure before getting pregnant - though both these studies are on tiny numbers. Can you talk more to your hospital to get their views?

Marie_93
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Re: Crosslinking & Pregnancy

Postby Marie_93 » Tue 16 Apr 2019 3:06 pm

Thanks for your prompt replies. I have just spoken to the waiting list team and its looking like july/August, will be nearly a year by the time I have it done since being put on the list. I just dont know what to do. Apparently my right eye went bad quite Quickly. We really wanted our 2 children close in age and wanted the baby years over and done with together. It does worry me how long wait I'd have after our next child to have it done as they said if I come off the waiting list I'd be referred back to my gp. I

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space_cadet
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Re: Crosslinking & Pregnancy

Postby space_cadet » Wed 17 Apr 2019 7:45 am

your body, your family, your fertility, should not be for a medic to dictate to you when n how you reproduce. I have a 6 yr old but whilst would love a 2nd know my physical health would be comprimised big time by doing so so it is complex for me wtihout factoring in my KC.
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

Marie_93
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Re: Crosslinking & Pregnancy

Postby Marie_93 » Wed 17 Apr 2019 9:13 am

Thanks for your reply space_cadet
I think we are going just 'try' and pray to God that my left eye stays good and doesn't go bad like my right one, otherwise I'm screwed, and hopefully get back on the crosslinking list after the birth of my second child. I hope they let me go back on it.

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Re: Crosslinking & Pregnancy

Postby sammyvine » Sat 20 Apr 2019 3:50 pm

How do you get cross linking?

Is it available on the NHS and if yes do you have to ask for it?

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Anne Klepacz
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Re: Crosslinking & Pregnancy

Postby Anne Klepacz » Mon 22 Apr 2019 3:07 pm

Yes, crosslinking is available on the NHS, though not all hospitals in the UK offer it yet. If the hospital you go to doesn't, then they should be able to refer you to another hospital that does.
For crosslinking to be provided on the NHS, there has to be evidence of progression from scans done 6 months apart.

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Re: Crosslinking & Pregnancy

Postby space_cadet » Tue 23 Apr 2019 3:37 pm

you will not be "screwed" I am legally blind due to KC n have very little sight and been a solo parent for over 6 years now, it is not easy being a disabled parent but their are far worse things I can think to expose my small to than disability and difference with diversity. x
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world


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