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-   -   Looks Like NO Ivig for me. (https://www.neurotalk.org/myasthenia-gravis/87603-looks-ivig.html)

Maxwell'sMom 05-22-2009 01:26 PM

Looks Like NO Ivig for me.
 
Just got off the phone with my Nephrologists office a little bit ago. She is calling my Neurologist, as she doesn't think my kidneys can handle it, so I think we're looking at Plasma? Not sure yet.
Nothing is ever simple!
so we'll see. With the long weekend and all, probably won't know anything until tuesday.
Love Lizzie

cricket001 05-22-2009 01:50 PM

Yuck....the waiting is hard too!:mad:

Quote:

Originally Posted by Maxwell'sMom (Post 513637)
Just got off the phone with my Nephrologists office a little bit ago. She is calling my Neurologist, as she doesn't think my kidneys can handle it, so I think we're looking at Plasma? Not sure yet.
Nothing is ever simple!
so we'll see. With the long weekend and all, probably won't know anything until tuesday.
Love Lizzie


maryec 05-22-2009 01:51 PM

Lizzie, I am sorry to hear of all the complications with your treatment ! Have your kidney labs worsened recently? What is your Nephrologist saying is causing your kidney damage?
I have had my liver effected by meds before, the weakness & fatigue is unbelievable with those organs.
Mary

Pat 110 05-22-2009 03:30 PM

Hi Lizzy,

I am so sorry to hear that, you must be feeling so frustrated! I am sorry too, that you have so much going on all at the same time. I hope the doctors have this all straightened on Tuesday so you can start a treatment and on your way to feeling better. As always, I'll be keeping you in my prayers. Take care.

Pat

erinhermes 05-22-2009 03:48 PM

Hi Lizzie!
 
Hi sweetheart!Sorry to hear about your lab work - that stinks!:(

The plasma exchange isn't fun, but it does do the trick! They go in though your jugular but you are given some numbing meds first............Just take a DEEP breath and let them "do their thing"......

The real inconvenience is that you will prolly be kept in the hosp, as the docs don't want any problems with the line!

I don't know how many days they will want you to have it, but mine have been 5 days a piece...

Big, big hugs (and PRAYERS) to you!
Erin:D




Quote:

Originally Posted by Maxwell'sMom (Post 513637)
Just got off the phone with my Nephrologists office a little bit ago. She is calling my Neurologist, as she doesn't think my kidneys can handle it, so I think we're looking at Plasma? Not sure yet.
Nothing is ever simple!
so we'll see. With the long weekend and all, probably won't know anything until tuesday.
Love Lizzie


ras1256 05-23-2009 01:38 AM

Lizzie - that's upsetting, but at least your docs are working together and staying on top of things, huh? Imagine if they had let that go! I'm sorry you most likely will have to go the plasma route. Fortunately, I've never had to go there - my veins don't even hold a regular IV for any length of time - I don't know how they'd be able to do plasma on me.

I'll be hoping on the best for you. You're in my thoughts always, hon!

Becky

Maxwell'sMom 05-23-2009 09:28 AM

Thank you all so much. At the moment we're waiting for my kidney biopsy to come back to see what it says as far as what is causing the damage to the kidneys.
So, I'm kind of in limbo with that, but my kidneys are such that my Nephrologist isn't comfortable at all with me having the IVIG.
I'm kind of scared about Plasma, but a dear friend sent me a bunch of info, that has calmed my nerves a bit. He is such a sweetie, and told me of his experiences, and what to watch for and all.
But again, not sure what we're going to do yet.
I'm a little bumbed.
I'll be off line for a couple of days, My daughter is in, (sleeping right now..smiles..)
Love you all
Love Lizzie

erinhermes 05-23-2009 03:53 PM

Hi Lizzie!
 
Hey hon! The unknown is always scary but if you have it done you will feel soooooo much better!:D

In fact some nurses have told me that people have gone into REMISSION after having the plasma exchange! Can you IMAGINE?:D

If ANYONE deserves a MIRACLE it is you! What a testament it would be - huh?
Imagine that church service!

Enjoy your daughter and try and get lots of rest!

:hug:Erin:hug:


Quote:

Originally Posted by Maxwell'sMom (Post 514016)
Thank you all so much. At the moment we're waiting for my kidney biopsy to come back to see what it says as far as what is causing the damage to the kidneys.
So, I'm kind of in limbo with that, but my kidneys are such that my Nephrologist isn't comfortable at all with me having the IVIG.
I'm kind of scared about Plasma, but a dear friend sent me a bunch of info, that has calmed my nerves a bit. He is such a sweetie, and told me of his experiences, and what to watch for and all.
But again, not sure what we're going to do yet.
I'm a little bumbed.
I'll be off line for a couple of days, My daughter is in, (sleeping right now..smiles..)
Love you all
Love Lizzie


xmas 25 05-23-2009 08:41 PM

Quote:

Originally Posted by Maxwell'sMom (Post 514016)
Thank you all so much. At the moment we're waiting for my kidney biopsy to come back to see what it says as far as what is causing the damage to the kidneys.
So, I'm kind of in limbo with that, but my kidneys are such that my Nephrologist isn't comfortable at all with me having the IVIG.
I'm kind of scared about Plasma, but a dear friend sent me a bunch of info, that has calmed my nerves a bit. He is such a sweetie, and told me of his experiences, and what to watch for and all.
But again, not sure what we're going to do yet.
I'm a little bumbed.
I'll be off line for a couple of days, My daughter is in, (sleeping right now..smiles..)
Love you all
Love Lizzie

hope all goes well !:grouphug:


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