Tuesday, November 29, 2011

Another Step On the Path

For one week now my Mom and I have shared the chores and passed the time playing Scrabble. Yesterday I laid on the couch and smelled homemade chicken soup that I didn't have to make, and I almost felt like a little kid again. As the first snowstorm of the season settles over us, we're hoping there's something to the labor and delivery nurses' claim that storms send women into labor.

Today, as I tried to land my "Z" on a Double Word Score, Naomi's nephrologist called to talk over the results of her yearly tests. Her ultrasound showed nothing too surprising: kidneys that continue to be too dense with cysts, too small, and filling with scar tissue. Her 24 hour urine collection continues to show that her kidneys are dumping an abnormal amount of protein--a sign that they are struggling to keep up with her growth. While the protein isn't a huge amount, it has been there on three separate collections over the course of a year now and clearly isn't going to resolve.

The nephrologist thought it was time to start Naomi on a daily medication called an ACE inhibitor. The medication is normally to control blood pressure (Naomi's runs a little high anyway), but also helps to preserve kidney function in this kind of situation. The idea is to try to ease the burden on the kidneys as much as possible so that the function will be preserved and a transplant delayed as long as possible. Naomi is nowhere near renal failure yet and probably won't be until she is in her teens or twenties, but starting the ACE inhibitor now is a wise way of delaying the inevitable perhaps an extra year or two, possibly more.

It's strange. It's only a little pill once a day--something to add to Naomi's daily vitamins (due to the liver disease) and melatonin (due to the pineal gland cyst) that she takes anyway. But for 7 1/2 years we've bragged that Naomi and Emma were doing so well they didn't need prescription meds for the ARPKD/CHF, and that era is over.

It's just a little pill once a day, but it is the beginning of a lifetime of medication for my daughter. She will never go a day again without needing pills. I'm thankful that she's come so far with so little intervention needed, but it is hard to make the adjustment, to know that only more intervention is to come. I don't want to make more out of it than it is--it's just a little pill. As the liver doctor said in October, just one more step down a path we already knew we were on. It just seems we can't walk this path slowly enough.

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