DMEK experience

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Re: DMEK experience

Postby space_cadet » Wed 05 Oct 2022 4:29 pm

Glad to jear its not a filament n your regular team treated you with respect and dignity. The only thing i purchase direct from RNIB is my canes and cane tips as i like to use a coloured over a generic white cane n RNiB can get them cheaper than I could if buying direct , everything else they sell is over inflated prices or “disability tax” on top. My talking kitchen n bathroom scales i got elsewhere for a fraction of what RNiB charge. Tbh Im not a fan of any charity or group being run by people without direct experience of who the charity is for …
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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Re: DMEK experience

Postby Green » Wed 05 Oct 2022 7:46 pm

Yes I really do appreciate it, helps us through the process, I wish all doctors knew how much difference it makes.

It's not defensible of charities I agree.

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Re: DMEK experience

Postby Green » Thu 06 Oct 2022 8:25 am

I can recommend what my doc added yesterday to all my drops, Chloramphenicol ointment. That with the Hylo-Forte helps create a thicker barrier just as he said for helping with erosion pain.

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Re: DMEK experience

Postby space_cadet » Thu 06 Oct 2022 8:35 am

glad to hear you have a action plan, did they suggest something called iLube for the filamets as that helps break them down n prevent them (in theory, but for me it didn't work butthat is a decent option for many who it does work)
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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Re: DMEK experience

Postby Green » Thu 06 Oct 2022 8:48 am

Yes I'm already on iLUBE, Acetylcysteine, dexamethasone, Moxifloxacin

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Re: DMEK experience

Postby Green » Thu 06 Oct 2022 11:07 am

Ps I mentioned I knew of autologous serum drops in case that ever needs to be considered

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Re: DMEK experience

Postby space_cadet » Thu 06 Oct 2022 11:13 am

AS is a last line of attack when nothing else works due to cost etc, Iv actually just spoken tk Liverpool half hour ago n ordered my next batch for delivery next wed so need to get googling for Science experiments for my 9yr old to do with the dry ice they come packed with.
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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Re: DMEK experience

Postby Green » Thu 06 Oct 2022 12:36 pm

Crikey that does sound very expensive but so worth it for you.

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Re: DMEK experience

Postby space_cadet » Thu 06 Oct 2022 12:49 pm

i had tried everything and anything for years nothing helped so was last chance saloon type situation for me n thankfully they help more than I can put into words
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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Re: DMEK experience

Postby Green » Thu 06 Oct 2022 12:53 pm

I'm so relieved for you, and it massively reassures me too


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