The Latest
We had some devastating news this week. Grace, now 8, and I went to her appointment this afternoon to get the results of her labs since she’s been put on Prednisone and Enalapril for the last few weeks. She’s reacting badly to the Prednisone and has pretty serious side effects from it, and the MD feels its possible that the Enalapril has actually accelerated the decline of the kidney function. Grace’s electrolytes are all over the place, her blood levels are falling, and basically the combination of meds and rapid decline of her kidneys are throwing her body into a kind of tailspin. Her BP is 140/92, her H&H is down, her PTH (parathyroid hormone-controls the balance of body’s calcium) is 477 and should be no higher than 47, her Creat. is 3.2 (huge), her Potassiium is 5.5 (way too high), etc. I could go on and on. Basically, we have to start making consult appointments to figure out the financial issues staring at us because of the extensive treatments, and to decide if we would rather do peritoneal or hemo dialysis because the MD feels that time is coming soon. The MD doesn’t want to consider a transplant yet because she has seen some evidence that with this specific disease, an extended period of time on dialysis may somewhat prevent a reoccurrence in the transplanted kidney. She also added that this is a remote possibility. The immediate action is to switch her from Enalapril to Amlodipine to lower her blood pressure and add Calcitriol to try and spare her bones of being stripped of calcium. We’ll recheck her labs in 1 week to see if the Creat. comes back down and otherwise, she’ll be weaned from the Prednisone at that point because her side effects are outweighing the benefits.
I don’t feel I have to option to withdraw from school at this time and don’t want to fall behind now that I’ve made it this far in the semester and program. There’s only 1 1/2 semesters left in my nursing program and I don’t know what I’d do with myself at home anyway. I think I really need my friends at school and to keep my mind occupied. I’ll try and make at least brief posts as often as I have news to keep everyone in the loop – it’s just too hard to keep explaining it over and over.
Thanks for all the support we’ve gotten from everybody.
Angie