“what a success story it would be if you could post that emily is not relapsing after being free of ivig for a sustained period! i’ll look out for that post with eagerness ;-)”
Me too! Maybe some of us — and I include myself — forget that plenty of people have sustained improvement utilizing the standard treatments.
Apropos to that, I just finished a book by Piers Anthony and was reading the author’s note in the back. He described his wife (then, apparently in her
70’s) as follows:
“My wife’s strength declined mysteriously, until she could no longer walk or even stand and was confined to a wheelchair. She could not move it herself, because her arms weakened the same way her legs did….”
Hmmm, I thought, this sure sounds like CIDP. And it was. The author goes on to state that they finally got the dx of CIDP and the wife began a regimen of IVig, after which,
“…she was able to learn to walk again, painfully, and now is securely back on her feet. She can’t walk far, but she can function well enough.”
Maybe not a complete recovery, but considering her age and where she was pre-IVig, this may have been as close to complete as she could hope for, under any circumstances.
the names are often used interchangeably… BMT seems to be an older term. whether the stem cells are taken from the blood or marrow, it is the same– as they all originate from the marrow. they will have me take a growth factor to stimulate the stem cells from my marrow to go to my blood stream, where they will extract them through apheresis. the protocols vary but these are all pretty much a similar treatment. there is a difference between a full transplant and what i am having which is sometimes referred to as a mini-transplant. the main difference is total destruction of the bone marrow versus minimal destruction. because i don’t have cancer, their goal will be to destroy my immune system while sparing total destruction of my marrow.
but whether the term BMT or stem cell transplant are used, they all do basically the same thing– high dose chemo with stem cell rescue.
have a look at some of the links on my website where the doctor explains the procedure… i think he makes it clearer than i.
We have thought about home health. The last time I talked to the dr. about it, he said he’s like to revisit the idea later because he likes to see Dell. We are very fortunate to see him at every treatment. He can see how Dell is doing. Although I email him with updates, seeing him in person is priceless.
So far, we have been very happy with the nursing staff. They are pretty diligent about the ivig.
Thanks for your reply.