Excessive sparkling may be a symptom of naughtiness
This is a question I hear fairly often, whenever someone learns that Daphne needs a kidney transplant. I get it, people have a preconceived image of those “in the transplant list,” and want to know if Daphne fits that picture.
We knew from her first days of life that her kidneys were sick. After birth, it took her hours to produce urine, then labs showed her creatinine was incredibly high. We didn’t know then that the kidneys would kick in and improve enough to let her get this far, but we also didn’t know that her kidney function would remain fairly low.
Kidney disease is very tricky because the kidneys can compensate for low function, enough that there are no clear symptoms until function is dangerously low. We monitor Daphne’s labs (now monthly) so we have a very good sense of how much/little the kidneys are working. So, yes, she has symptoms. But they are not that easy to tell if you just see her at the playground. I feel ridiculous even writing this disclaimer, but here it is: I am (obviously) not a doctor and my explanations for each symptom are far from scientific.
1- Poor appetite and growth – this is a murky one. Is it a prematurity issue or a kidney disease issue? Lots of former micropreemies have a hard time growing and gaining. Kids with renal disease often have poor growth too, and some have nausea and lousy appetite. Daphne has been growing well on HGH, and her eating has improved. Weight gain is still challenging. Getting her to grow should be an Olympic sport.
2 – She gets dehydrated really, really easily. Her kidneys need a lot of water to be able to dissolve the junk that they need to eliminate. If she doesn’t drink enough fluids, she gets dry. It is obvious (to me) because I can smell acetone in her breath and she literally shrivels like a flower. It is terrifying and we don’t play games with dehydration, since it can further deteriorate her kidneys. If she vomits too much, or refuses to drink, off to the hospital for an IV we go.
3 – Her urine is clear and doesn’t really smell like pee. Another sign that the kidneys are not filtering properly.
4 – Her complexion is pale and she often has dark circles under her eyes. From what I hear, this changes immediately after the transplant.
There are some symptoms of renal disease that she doesn’t have (yet), for one reason or another. Her blood pressure is normal. She is not anemic. She does not retain fluid and her urine output is good. Her blood sugar is normal. All good things.
We have been able to manage her disease with lots of monitoring and dietary changes so far, and hope that she can remain stable a little longer before the transplant. I also hope that she can grow and gain during these months of stability. I am allowed to hope, right?