Today was my monthly appointment with Dr. Bomback, after going in for labs yesterday. Mostly good news:
-Creatinine is back down to 5.6, which means it’s been roughly stable for about three months after jumping this summer.
-C-cystine, which is the more relevant reading in my case, will take a week to come in.
Nonetheless, the course of the disease (IgA nephropathy) is not predictable, and Dr. Bomback wants to push the transplant process as fast as it will go, to ensure against my having to go on dialysis before the transplant.
-Blood pressure (averaged over three readings) about 120/80 (I didn’t write down the numbers. At Susie Lew’s suggestion, I brought my home BP cuff to calibrate it, and it came in right about on target.
-Yes, the hydrobromide in DXM hydrobromide would have been expected to spike the blood pressure.
-No, he really doesn’t want to take the risk of a higher dose of Entresto.
-The 12.5 mg. of hydrochlorothiazide (a diuretic) probably isn’t doing any good given the state of my kidney function, so Dr. Bomback took me off that and switched to another diuretic (the name of which I’ve forgotten) that works on a different principle. In addition to keeping the BP down, this might help some with heart function if the heart muscle has been retaining fluid.
-In addition to the cardiac insufficiency, I’m a little bit anemic: hemoglobin of 10.6, where my normal was about 13. Nothing to be done about it; even if the insurance company would pay for blood growth factors (which it won’t at this level) there are disputed but possibly significant side effects: increased risk of cancer recurrence, increased risk of stroke.
-He has no clue what sort of cardiac workup the transplant folks think they need, after the angiogram; I’ll discuss that with the transplant team next week.
-Yes,as Susie suggested, my magnesium is high andI need to knock off the magnesium supplement. And I shouldn’t go back on to zinc. If I start to cramp again, the prescription is raw almonds.
-On the other hand, I should boost my daily 1000 units of Vitamin D to 2000 units; something about parathyroid function I didn’t quite get.
-Losing 30 pounds was good (I weighed in at 229). Losing more would be better; the lighter I am when I get the transplant, the quicker the recovery.-I should expect to be pretty much out of action for eight weeks post-transplant, though people have been known to go back to work after four. (Fortunately, I can do most of my work from home, assuming I can sit up.)
Next week I go in to the transplant unit to get a blood draw for a cross-match with my potential donor. Fingers crossed.
