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Any eye specialists? Please help (self.Blind)
submitted by KellyCobate
Okay guys, I have some questions for any eye specialists out there. We are running out of options and I need your help.
My auntie went blind a couple of months ago due to low blood pressure from kidney failure. Her blood pressure lies at around 50/30 so it's extremely low. She woke up one morning and one she had gone blind and then a few weeks later it happened to the other one and now she has no sight whatsoever. She is only 42 years old and has a LOT of very very serious illness and complications from the kidney failure but becoming blind has been the worst for her to deal with.
So I went to an appointment with her yesterday and the doctor said her optic nerve is dead and that there is no chance she will see again. We asked if there are any tests or research going on at the moment for this and he said it's only for severed optic nerves at the moment.
My question is; are there any research programmes going on for rejuvenating stem cells to help the optic nerve reattach? Or do you have any ideas whatsoever about what we can do or who we could go to to see if there is anything rang can be done to get her to see again? She can't see her children anymore who are only 13 and 15 or her husband and is finding it incredibly hard to deal with. She also now has colostomy bags which she can't
Change herself which obviously must be so hard.
Please - any specialists who have any ideas about someone we can go see about this please let
Me know. We are in the UK but we will travel if it means getting help.
Thankyou
My auntie went blind a couple of months ago due to low blood pressure from kidney failure. Her blood pressure lies at around 50/30 so it's extremely low. She woke up one morning and one she had gone blind and then a few weeks later it happened to the other one and now she has no sight whatsoever. She is only 42 years old and has a LOT of very very serious illness and complications from the kidney failure but becoming blind has been the worst for her to deal with.
So I went to an appointment with her yesterday and the doctor said her optic nerve is dead and that there is no chance she will see again. We asked if there are any tests or research going on at the moment for this and he said it's only for severed optic nerves at the moment.
My question is; are there any research programmes going on for rejuvenating stem cells to help the optic nerve reattach? Or do you have any ideas whatsoever about what we can do or who we could go to to see if there is anything rang can be done to get her to see again? She can't see her children anymore who are only 13 and 15 or her husband and is finding it incredibly hard to deal with. She also now has colostomy bags which she can't
Change herself which obviously must be so hard.
Please - any specialists who have any ideas about someone we can go see about this please let
Me know. We are in the UK but we will travel if it means getting help.
Thankyou
-shacklebolt- 10 points 6y ago
> We are running out of options
I'm going to be blunt, because I believe this is something you need to hear as people who love and care for her:
There's one option you seem to be completely ignoring here: helping her accept her blindness (by personally accepting it) and helping her get the resources that she needs to move on with her life.
Being surrounded by family members who are treating blindness like some kind of terminal illness and shuffling her around to doctors desperately trying to cure it is not going to make her sight loss less "incredibly hard to deal with." Giving her the message that you're "out of options" if she doesn't regain some sight isn't going to help her. Giving her false hope or encouraging the fantasy that one day she might regain her sight will not help.
If her doctors are saying that her sight cannot be recovered, that means her sight cannot be recovered. It's entirely possible that in 10 or 20 or 100 years there might be a cure for her condition, but encouraging her to hold out hope for that is going to be so harmful to her. It's no way to live, stopping your life waiting to "get better" or chasing cures.
Look at the [NHS information about blindness]
(http://www.nhs.uk/Conditions/Visual-impairment/Pages/Introduction.aspx) and also get her in touch with the [RNIB]
(http://www.rnib.org.uk/) if she isn't already.
She's been hit with a terrible blow, and there's no doubt that she will benefit from some kind of professional or group support (or both) dealing with the emotional aftermath of developing a new disability. But she also needs you guys to get out of being surrounded by your own fear of blindness, to realize that she can do almost everything she used to with the right training and experience, and to help support and encourage her as she makes this adjustment.
You aren't out of options here. You have a choice, but I strongly urge you to consider making the choice to learn more about blindness (and the many ways she can go about doing almost everything she used to) and to help her get what she needs to be able to do what she wants.
I'm going to be blunt, because I believe this is something you need to hear as people who love and care for her:
There's one option you seem to be completely ignoring here: helping her accept her blindness (by personally accepting it) and helping her get the resources that she needs to move on with her life.
Being surrounded by family members who are treating blindness like some kind of terminal illness and shuffling her around to doctors desperately trying to cure it is not going to make her sight loss less "incredibly hard to deal with." Giving her the message that you're "out of options" if she doesn't regain some sight isn't going to help her. Giving her false hope or encouraging the fantasy that one day she might regain her sight will not help.
If her doctors are saying that her sight cannot be recovered, that means her sight cannot be recovered. It's entirely possible that in 10 or 20 or 100 years there might be a cure for her condition, but encouraging her to hold out hope for that is going to be so harmful to her. It's no way to live, stopping your life waiting to "get better" or chasing cures.
Look at the [NHS information about blindness]
(http://www.nhs.uk/Conditions/Visual-impairment/Pages/Introduction.aspx) and also get her in touch with the [RNIB]
(http://www.rnib.org.uk/) if she isn't already.
She's been hit with a terrible blow, and there's no doubt that she will benefit from some kind of professional or group support (or both) dealing with the emotional aftermath of developing a new disability. But she also needs you guys to get out of being surrounded by your own fear of blindness, to realize that she can do almost everything she used to with the right training and experience, and to help support and encourage her as she makes this adjustment.
You aren't out of options here. You have a choice, but I strongly urge you to consider making the choice to learn more about blindness (and the many ways she can go about doing almost everything she used to) and to help her get what she needs to be able to do what she wants.
KellyCobate [OP] 1 points 6y ago
The doctors haven't said it isn't curable, they've said we have to find a specialist willing to do the research on her case but because her case is so hard and complicated, it's difficult. And frankly no we won't accept it until we are firmly told that that is it. She isn't being 'shuffled about to doctors' she is going to regulate consultant appointments that she has to go to. It's not about accepting it, it's about finding someone willing to take the case on.
-shacklebolt- 2 points 6y ago
If her doctors believe there is ANY specialist who can help her, they will refer her to that specialist. She should follow up with her doctors for clarification on what this means.
> yesterday and the doctor said her optic nerve is dead and that there is no chance she will see again.
You have been "firmly told that that is it." You can keep up with research, talk with specialists, and see if something changes down the road, but the healthiest thing to do right now is to accept this as being permanent.
Her family members not accepting her blindness and not working to help her adjust to being blind and carrying on living a fulfilling life will ultimately harm her the most.
Please get her in touch with the RNIB if you haven't already, see what local resources are available to her (such as help with home skills, self care, cooking, cane travel, using a computer or smartphone, library services for blind people, etc) if she is not receiving those already, and also ask them what resources there are for families dealing with a new diagnosis of blindness.
If it turns out that there's some miracle cure around the corner, having adapted to living life as a fully blind person is not going to harm her. But not getting the help, support, and the positive attitude that she needs will.
> yesterday and the doctor said her optic nerve is dead and that there is no chance she will see again.
You have been "firmly told that that is it." You can keep up with research, talk with specialists, and see if something changes down the road, but the healthiest thing to do right now is to accept this as being permanent.
Her family members not accepting her blindness and not working to help her adjust to being blind and carrying on living a fulfilling life will ultimately harm her the most.
Please get her in touch with the RNIB if you haven't already, see what local resources are available to her (such as help with home skills, self care, cooking, cane travel, using a computer or smartphone, library services for blind people, etc) if she is not receiving those already, and also ask them what resources there are for families dealing with a new diagnosis of blindness.
If it turns out that there's some miracle cure around the corner, having adapted to living life as a fully blind person is not going to harm her. But not getting the help, support, and the positive attitude that she needs will.
KellyCobate [OP] 1 points 6y ago
As said earlier, I am not accepting it because at the moment it's the only thing she has. She's had her kidneys, bowel and soon gallbladder removed. She's extremely ill and everything keeps going wrong so they only positive she has is that if we can find someone to take on her case then that's something. If that one ray of light keeps her going then that's all that matters. She doesn't have time to adapt to life Being blind; time isn't on our side.
awesomesaucesaywhat 2 points 6y ago
Even if you do find a doctor will to take on the case it will probably be at least a year before there is anything they can do restore some vision, if at all. In the meantime she will need help adjusting and the resources mentioned above will be very helpful. Even if this isn't permanent for her, it is her reality right now and that needs to be addressed. No doubt she is feeling scared and there are people who can help. I commend you for fighting on her behalf to find a fix, but in the meantime there are things that can be done to help her be in a better place emotionally.
KellyCobate [OP] 1 points 6y ago
I understand what you are saying. But as can't adapt her life because she's in hospital, she's
Terminally Ill and won't be with us for a long time in the future and so anything we can
Do just so she can see her children and husband one more time I am willing to
Do
Terminally Ill and won't be with us for a long time in the future and so anything we can
Do just so she can see her children and husband one more time I am willing to
Do
fastfinge 3 points 6y ago
MODERATION! We kindly ask all commenters to remember that giving medical advice is against $1:
> While you may freely discuss your troubles, you should not look to the Website for information or advice on such topics.
Keep it general, everyone. This question is kind of borderline, so I won't lock the thread. But I do feel like I need to post this reminder.
> While you may freely discuss your troubles, you should not look to the Website for information or advice on such topics.
Keep it general, everyone. This question is kind of borderline, so I won't lock the thread. But I do feel like I need to post this reminder.
SWaspMale 1 points 6y ago
I'm thinking before they work on repairing the optics, they should get her kidneys fixed up?
KellyCobate [OP] 2 points 6y ago
They can't. She is too sick to have another kidney transplant. She is past the point of having another new kidney.
claudettemonet 1 points 6y ago
Sorry. Tough breaks. It just sucks. I am truly sorry. Life is a box of shit sometimes and none of us come out alive.
awesomesaucesaywhat 1 points 6y ago
Haha I like the dark humor. Also, welcome back!
claudettemonet 1 points 6y ago
Thanks! Good to be back.
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