The good news is Addison’s heart seem to be ticking along just beautifully, however, the news about her kidneys is not as rosy. Her little body took quite the hit while she was clinging to life in the ICU and that seems to have damaged her kidneys. According to our cardiologist at Wednesday’s transplant clinic, after consulting with the nephrologists, it is likely Addison has chronic kidney disease. Wow. That is definitely not something you want to hear. Anything with the words “chronic” and “disease” together is rather dire.
After her GFR test a few weeks ago, we knew Addison’s kidney function was less than stellar, but to hear it called something that sounds as insidious as “chronic kidney disease” or CKD, just makes it worse. If we can tweak the hard-hitting immunosuppressant drugs, we may be able to stop the downward progression. We have now lowered her dose of Tacrolimus a second time in the past month and everyone is hopeful this stabilizes the kidneys and possibly even allows them to recover a bit. The key is not to let it get any worse. As her doc said, “If she maintains this level of kidney function throughout her childhood, that’s totally fine.”
It’s a tough hit of reality and a stark reminder that transplant is not a cure. We know we are buying time for our sweet baby girl by trading in her bad heart for a beautiful new heart, but it comes with a price. It’s one of those things I really don’t think about too often – after all who has time to wallow when you’re chasing after a toddler? But it’s times like these that make it tough to maintain a “glass is half full” attitude 24/7. Meeting Simon Keith this past weekend was inspiring, but also another sobering kick. If he is one of the world’s longest-living heart transplant recipients at 26 years, what does that mean for Addison?
I know…I’m just filling my brain with crap. I’m sure if Addison would talk she’d say something like, “Mommy, you think too much when there is way too much fun stuff to do. Like downward dog.”
Time to get on with living the amazing life we have and appreciating all those moments big and small.
Elaine, Aaron and Addison