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taffylinden

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 #1 
Not sure where or even if I should post this, but an optometrist told me since I can't tolerate rigid contact lenses, I am out of options re: my vision. He said nobody would want to do surgery on me because I'm "a hot potato." I don't cry in doctor's offices, but I broke down this time. After 30 years and 13 surgeries, I can't accept this is it, and I decided an optometrist does not get to call Time of Death on my options.

I have an appointment with the corneal specialist in Salt Lake at the end of June. I suspect the optometrist is right about contact lenses (can't wear glasses) because I've tried almost every kind out there. I do great with soft lenses, but they either don't improve my vision and/or don't allow enough oxygen to get to my cornea. And the lupus-induced iritis causing rejection of the corneal transplants hasn't helped any.

No need to respond to this. I only posted it because you've all been so kind to me during my struggles. Thanks, everyone


upstater

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 #2 
I'm sorry, Taffy. That's terrible info to hear. But I don't blame you for not letting an optometrist make that call....I don't think they have the training to do that. 

Hoping that you get better news in Salt Lake.
taffylinden

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Thank you, upstater. I'm so glad you joined the boards.
Moiraine

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Taffy, I am really sorry to hear this. I've got fingers and toes crossed that you get better results in Salt Lake. I really wish you had more options.
Arizona Pam

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 #5 
Taffylynn,
Your eye appointment was the end of June. I hope & pray you got good news. What was the outcome?

(((((Gentle Hugs)))))
AZPam
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 #6 
OH OH I meant taffylinden for my last post~brain fog LOL
taffylinden

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 #7 
Hi, Arizona Pam--no worries about the name. It doesn't bother me at all.

I posted in another thread about the appointment. Basically, the specialist said I need to go back for a test they've done twice before. This test, called an ERG, measures the damage to the retina done by a medication--in my case, Plaquenil. It amazes me that they can test to see not only IF there's damage, but for what caused it! Anyway, if the left eye shows no improvement, we're done, as it makes no sense to him to keep messing with it if the retina has not healed. Retinal damage is permanent, but if caught early, it can rebound somewhat. (This is why it's SO important to get eye exams if you're on Plaquenil, even though the odds of retinal damage are remote.)

In my case, the damage was pretty extensive by the time they discovered it. Usually they can tell by examination if there's damage, but mine wasn't so obvious. I remember they brought in a retinal specialist, and he saw something slight that made him very suspicious, so they ran the ERG. That was 4-5 years ago. Then they ran the test again a year later, and there was no improvement. If there IS going to be any improvement, it happens in the first year, period, so they haven't run the test since.

Not sure why he wants to run something that has no chance of improving, but I'm game for a miracle! If the left eye is toast, then there's little they can do for the right eye. Even if they fit me with a contact that works (a miracle in itself right now), the corneal graft in the right eye is giving out, and they won't be able to replace it because it takes almost a year to heal, and I wouldn't be able to see for that year. 

I haven't given up hope, though. Just can't.

Thanks for asking. It moves me that you cared enough to ask!




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