Sunday, November 8, 2009

Well it's been awhile since my last post and we have had some exciting developments...
Adriann's nephrologist decided to stop dialysis to see just exactly what her kidneys were capable of on their own with just a diuretic....so the experiment started...her creatinin was just above 4 at the start..it bounced up to 4.6 at one point but then dropped again down to 4 then 3.8 as the weeks passed and has been down to 3.5 no one expected her to be able to do this! But just last week at the 7 week mark they took the port out of her chest! Also the Wegener's anti-bodies are undetectable in her body! Another surprise. For someone who had it as severely as she did, they didn't expect the anti-bodies to be gone 5 months into recovery. They say when this happens the chance of recurrence is lessened.

Long term she will still need a kidney transplant at some point so we know dialysis will have to start up again but it would be amazing if it were 5 or 10 years down the road instead of the 18 months for a transplant that had been expected.

She is still weak, one day of taking care of her toddler and she's in bed for the next couple. Every time her stomach hurts she panics ....afraid that her kidneys are failing already. But she's happy too...it's kind of a roller-coaster. She has good days and bad. She's letting her hair grow back but still has 2 more rounds of Cytoxin infusion before she starts a daily oral medication. We aren't sure about the Rutuximab in Dec. but the Rheumatologist will let us know.

She says she almost feels like a girl again...if her hair comes back thicker than it is now and her face loses more puffiness she'll be happy!

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