There is always a silver lining to every cloud and last week, we found out there are perks to being a renal patient. Any drugs that are prescribed by our nephrologist – yes, Addison has a nephrologist now too – are covered by the province. And on top of that, the pharmacy does home delivery. Way to look at the bright side, right?
It was quite sobering to have a long discussion with our new kidney doc and come to grips with the idea that the princess is now considered a renal patient on top of all the cardiology stuff. When we first heard she likely had chronic kidney disease as a result of her original heart condition and time on ECMO, it was like getting kicked down a few notches. Just when I was feeling a bit more relaxed about life as the mother of a transplant patient and all the strings that come attached, WHAM. I couldn’t stop my mind from racing to the worst case scenario…kidney failure leading to a kidney transplant. So I talked myself off the ledge once again, with help from Aaron, who is far less dramatic. When we finally had the official consult with nephrology last week, I was in a much better head space. The doc is hopeful we can get Addison’s kidney function from getting worse, and so far the numbers are holding steady. There is even a chance it may recover a little. Most importantly, she is a long way from CKD actually affecting her everyday life.
But, and there is always a but, we do have to closely watch one thing. Poor kidney function affects the bone marrow’s ability to make red blood cells. As a result, Addison’s hemoglobin is quite low. It’s actually low enough to be considered anemia, though the princess doesn’t seem to have slowed down at all. We have gone back to the iron supplement, which is not exactly going down easy. The stuff tastes just like it smells – rusty nails! If that doesn’t bring her hemoglobin back up, the nephrologist says we will probably need to start giving her regular injections of a hormone called erythropoietin to stimulate red blood cell production. You have probably heard of EPO. It’s the same stuff Lance Armstrong is accused of using.
If EPO helped propel Armstrong into the super stratosphere of elite cycling, just imagine what it might do for the princess!
Though on second thought, I’m not sure I can handle a super-revved up toddler…Addison is already a very busy little girl. Hard to imagine this may be lethargic!
Elaine, Aaron and Addison