Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

What’s Working

on November 9, 2013

I feel like I spend a lot of time talking about the bumps and not enough time talking about what’s working. Because it’s the things that aren’t working that occupy my time. But I need to focus a bit more on what IS working. So, let’s talk about what *is* working post-transplant.

– Motor skills. Teddy’s made HUGE progress in motor skills. I mean, he’s walking. He’s almost running. He climbs a wee bit. He still falls down quite a bit, but he’s making great progress.

– Erythropoietin. Teddy’s failed kidneys didn’t make erythropoietin. It’s a hormone that your kidneys make to tell your body to make red blood cells. Kidneys that aren’t working don’t make the hormone. So Teddy received weekly shots of a synthetic version of the hormone. We needed to continue the shots for a month or so after transplant, but were able to stop by about 6 weeks post. Yay! The Epogen really hurts going in, so we were very happy to leave this injection behind. Teddy’s awesome new kidney, Lefty, is making all the erythropoietin he needs.

– Iron storage. Teddy’s never been good at iron. He had to have iron infusions for a while. Post-transplant, he’s been on the max dose of elemental iron for his weight. Last week, we stopped the iron (to try to improve some of his other labs that are bad). This week, his hemoglobin was still right in the target range. Wahoo!

– Calcitrol. Calcitriol’s another hormone made in your kidneys (and your liver, to a much lesser extent). Vitamin D (the vitamin) can’t be used in your body. Your body converts it to the hormone Calcitriol. In your kidneys. (I had this link rattling around in my bookmarks – it talks about Vit D and how it becomes hormonally active.) You can give a person with kidney failure all the sunlight and cod liver oil that you want, but if their kidneys can’t convert the vitamin D to the hormone calcitriol, it won’t do one bit of good. So, Teddy had to take a synthetic version of the hormone calcitriol. (Notably, until the very end before his transplant, when things were really getting out of control, he never needed actual Vitamin D. His Vitamin D level was fine. He had plenty. His body just couldn’t use it, because it was unable to convert the vitamin into the hormone.) Teddy’s awesome new kidney is happily converting the Vitamin D into the useable form, the hormone calcitriol.

– Bone Health. Bone health is kind of complicated. Vitamin D (actually, the active form Calcitriol), Calcium, Parathyroid hormone, phosphorous, and a few other things all play a role. When you have a growing baby whose body can’t convert Vit D into a useable form, who has calcium levels that are variably wonky, who has very high Parathyroid hormone, who pees out his phosphorous… you have a growing baby who is growing kind of crappy bones. Many kidney babies get renal rickets – a form of rickets found only in the renal population. Teddy did not have issues anywhere near that bad – in fact, his bones are pretty OK. But NOW his bones have no reason to not be growing straight and strong. 🙂 (This is a reasonably decent discussion of the role these things play in bone health. I’ve seen better, but I can’t find it.)

– Pee. Teddy’s never had trouble peeing, but he pee was “poor quality.” Yes, his pee was criticized for being subpar. But now he has awesome pee. His awesome new kidney is able to hold on to essential nutrients like sodium, phosphorous, etc., that his old kidneys couldn’t hang on to.

– Filtering Blood. This is of course the big one. Teddy has a kidney that actually filters his blood. It takes the waste products out and keeps the good stuff in. Throughout ALL of the bumps Teddy’s had since transplant, this one has remained rock solid. His kidney has always, always done its main job of cleaning the blood. So, so amazing. Go, Lefty!

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