Hello Dear Ones --
I am sorry I have not written in awhile. It has been a whirlwind trying to regroup since our return from Mayo last Saturday. We have had to get ready for the first day of high school for Nick and the first day of kindergarten for Amanda -- great occasions.
Craig had dialysis last Saturday morning before we returned and had trouble with his blood pressure for the next 48 hours. Initially I thought he might be reacting to lowering his steroid dose, but the docs at Mayo felt it was due to the increase in his diuretic water pills (they had increased Lasix from 40 bid to 80 bid and added Zaroxlyn). That seems better now. At Mayo the albumin was higher at 2.2, but here it measures the same old 1.1 (it needs to get above 3.4). Don't ask me why the difference between labs.
Craig had a second kidney biopsy (from the right kidney this time) last Friday and we heard results yesterday. It show the same thing as the first -- minimal change nephropathy. The docs seemed happy with this (they had thought it might be FSGS, which is focal segmental glomerulosclerosis, which is even more stubborn than minimal change disease).
Minimal change nephropathy is suppose to respond to steroids within 12 to 16 week. Craig had been on high dose steroids now for 12 weeks. The opinion of the Mayo doc was that he should stay on the prednisone for another month and then if no change, consider other options. The problem is that the other options are not great and in some ways are less desirable than the nasty steroid ( cytoxan, cycloporine, rituximab). We meet with our Seattle nephtologist on Friday.
A recent finding is that Craig's hepatitis B surface antibody is negative. We know this should be positive because he has been vaccinated in the past, and he has tested positive in the past. This false negative is probably due to his low protein levels. For me, this calls into question his entire infectious disease workup. We are meeting with his ID doc next Monday.
Craig had dialysis today at the hospital downtown -- very inconvenient, but apparently if you are not a chronic dialysis pateint, it is difficult to have treatment at the much more efficient outpatient centers -- we are working on this.
That is all for now. Thanks for all your continued interest and support.
Love, Sharon
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