Ischemic Optic Neuropathy (help!)

[Zog]

My wife recently lost vision in the upper and outer quadrant of her right eye.  We think it is due to a low blood pressure event after she went to sleep after home hemodialysis about three weeks ago.  This damaged her optic nerve due to lack of enough blood/oxygen.

She did dialysis on a Thursday night (with some cramping that she thought was back pain) and a little lower than normal post treatment blood pressure (it is already low at 90's/40's anyway) and had blurry vision and pain in her right eye on Friday.  We skipped dialysis on Friday because she wasn't feeling well and she woke up with partial loss of vision on Saturday.  She was in denial until Monday when she decided she should tell me and go to the doctor.  (She probably figured there wasn't much that could be done on the weekend and she was right.)  The ophthalmologist first thought she had optic neuritis and wanted to start steroids until he spoke with her nephrologist and then considered the ischemic optic neuropathy may have caused the loss of vision.  They did an MRI which didn't prove anything I'm aware of.   

Anyway, this isn't cool, but the big thing we are worried with is preventing any more damage to her optic nerve and loss of vision.  She has talked with her nephrologist and the neuro-opthalmologist.  I spoke with the neuro-opthalmologist yesterday when they finally told us the ION possibility (my wife and I have been debating optic neuritis vs ION for 3 weeks). I asked him to speak with the nephrologist about the following recommendations I had. 

1.  We are going to decrease her ultrafiltration rate to 1.0L/hr or lower to monitor her blood pressure more often.
2.  We may need to increase dry weight.
3.  We need to get her blood pressure up.  She is usually has a pressure of 90/50 which just seems scary now that I know it may lead to this problem.
4. We are going to try to do dialysis in the early evening (there goes normal dinner time) so she has time to recover before going to sleep because sleep naturally lowers blood pressure and may amplify any dialysis related hypotension.
5.  Check hematocrit and raise Epogen dose if needed.
6.  Low dose aspirin?

Can you guys think of anything else?  I think I see that Richard had this problem.  People on dialysis need to be aware of this issue.  I didn't know about it.  I always thought if she had a slightly low blood pressure we could just give her a saline bolus or a cup of water and she would snap back.  It is kind of scary to think you can suddenly go blind because of dialysis.

This happened like 3 weeks ago.  I thought they would have been quicker to act or advise.

She still can see out of her left eye fine and is getting used to her right eye impairment.  She can still drive, etc.  She just has a bigger blind spot.

[jbeany]

I went blind for a month when I was first being treated for high blood pressure related to kidney failure.  My vision came back when my blood pressure stabilized finally.  All the eye doc said was, "We'll have to wait and see." 

If I could have seen him at that moment, I'd have hit him. 

They do nothing quickly.  It's very frustrating. 

I'm still on baby aspirin 15 years later.  I've had multiple laser surgeries, but it's been stable for years.  Hopefully, your wife will have the same luck.

[MomoMcSleepy]

Thank you both for sharing your stories!  That's something I don't think we hear as much about.  Another good reason to be mindful of our blood pressure (which I am bad about checking).

I hope that your wife can regain her vision!  So amazing that she had your daughter!

[cdwbrooklyn]

Wow, I didn’t know your vision can go bad with low blood pressure.   Before, I was diagnosed with kidneys failure, I too, my vision was blurred.  I went from doctor to doctor trying to find out what happen to my vision.  Finally, I’ve find a doctor that told me that the bad vision is from high blood pressure.  My blood pressure was 200/179; don’t know how I stayed alive.   Anyhoo, when the doctor got my blood pressure down, I was finally able to see again but my kidneys were damage.
 
Anyhoo, when I first started HD, my blood pressure would drop down to 80/60.  I would eat a bottle of olives (I love olives) and drink some water after my treatment at home.  By the morning my pressure would be normal.  My nurse told me when my pressure drops that low is because I’m taking off to much water.  She told me to leave about a pound of water on so my pressure doesn’t drop to low.

We must keep in mind that our body needs water.  Since we remove water from our body, we attend to remove too much and that’s what makes our pressure drop low.   Try leaving at least one pound of water on and see what happens.   

[lmunchkin]

Zog, like you said, try raising her dry weight and dropping what you take off.  I believe you will see the pressure go up a little.  Good luck and let us know how she does!

God bless,
lmunchkin

[RichardMEL]

Oh Zog man I'm so sorry that's so difficult dfor your wife and you. I'm sorry to read that.

And yes, I'm the one who has had similar issues though I think mine is slightly different to your wifes because:

1. I am post-tx
2. It didn't happen overnight. My vision gradually got blurrier, which i first put down to a known effect of higher doses of prednisolone and had arranged an appt to get it checked, but things declined further and I decided to go to the eye hospital emergency to get checked ASAP - though it sees the damage was already done.
3. My BP had been very well controlled at the time as far as I had been aware (ie: when tested)
4. I lost pretty much all the useful sight in my left eye. It's not blank or anything but so blurry as to be useless. However with some testing it seems that I do have some vision around the edges, but the centre is really shot. I mean guy holds a huge "A" in front of it and all I see is blur with colours. And that was my good eye!
5. They really have no clue why but the end suggestion from various experts here was AION as opposed to just ION, but then again really they're guesseng as much as anything I reckon.

They suggested my chances of it happening again could be 25%, which is disturbing. Obviously I asked well what the heck can I do to try and prevent this - all they said was control the BP as best you can - but here's the thing mine wasn't suggested the optic nerve became swolen due to low BP but more due to longer term damage of the blood vessels in my left eye thanks to dialysis. gee, thanks. One man put it that while my body is 41 years old, the blood vessels up there were closer to 91 years old with the damage (apparently they usually see (no pun!) people with this situation who are very senior)

of course they also told me that standard therapy was steroids and cyclosporin - which I was already on post-tx - so again I am a "special case" for them - as it seems with most things in my life. YAY ME SPECIAL!

So yeah all I can hope is that neither of us gets another instance of this, but as to how to prevent it or do the best I can to prevent it is to keep BP as stable as possible.

oh almost forgot when they initially thought it may have been ION they (ophalmology) were very confident (like 70%) that the vision would return in that eye in 4-6 weeks... yeah well that was like 15 months ago... so yeah no go. Hoping maybe your wife does get a nice surprise.