Hello Dear Ones --
Sorry it has been awhile since I've written. Quite a whirlwind getting back from Mayo last Saturday and then trying to catch up and get both kids ready for the start of high school for Nick and kindergarten for Amanda.
Craig had dialysis at Mayo Saturday morning before we left. Then had trouble with low blood pressure for the next couple of days. Figured out it was due to doubling his water pill (increased Lasix from 40 bed to 80 bid) and adding a second water pill (Zaroxlyn). Seems to be better now.
Had second kidney biopsy last Friday -- took it from the right kidney this time. Found out yesterday that it is showing the same thing -- minimal change nephropathy (vs focal segmental glomerulosclerosis = FSGS, which apparently is even more stubborn than minimal change treatment wise). The electron microscopy results will take another week.
The iodine test came back at 13 (which reflects the glomerular filtration rate, which is normally greater than 60) -- wouldn't you know it, that is the grey zone where you may or may not need dialysis and may or may not respond to diuretics (water pills). Craig is trying to stretch out the dialysis a bit, but seems to feel better if he doesn't go any longer than 4 days.
The conventional thinking is that one should remain on high dose steroids for 12 to 16 weeks before decding that they are not working. Craig has been on them for 12 weeks now and not much improvement. However, the alternatives are in many ways more distasteful than being on the steroids (Cytoxan, Cyclosporine, Rituximab) so Mayo said to stick with the steroids for another month. We meet with our Seattle nephrologist this Friday.
Another glitch is that Craig's Hepatitis B surface antibody is registering negative, when in fact, he has been vaccinated so it should be positive (and has been positive in the past). For me, this calls into question our entire infectious disease work-up to date, which has consisted of looking for anitbodies against different infectious agents. With his low protein, Craig is not making normal levels of antibody proteins and this can result in a false negative. We meet with our ID doc next Monday.
So that is it for now.
Love, Sharon
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