FYI, bold text is the shortened version for those in a hurry. The rest is written for those who like more details.
She seems to be responding to treatment, so her nephrologist is hopeful. Some labs look better. Her kidney function is worsening, but improvement is usually seen in 3 months. There is more protein spilling into her urine. She also needs to see an ophthalmologist to regularly check her eyes, as C3GN patients are at higher risk for problems such as macular drusen.
Alyssa’s cholesterol is high. This can lead to long term heart and kidney problems. We need to change to a diet of lean proteins, veggies, legumes, and healthy fats. Thank goodness she already likes veggies. Too bad she hates fish. If dietary change alone is insufficient, then she will have to start another medication, a statin, to bring down her cholesterol.
Her salt levels and blood pressure look great! She REALLY doesn’t want to add more medicine or get more blood pressure readings, so she’s very compliant about salt. We also work hard to make the food taste good. She says it hurts when she gets her blood pressure taken, especially when that first pressure is WAY overshot too high and it becomes unnecessarily painful. So we swiftly take her blood pressure manually, knowing not to overshoot too high, and it reduces a lot of pain.
Prednisolone sucks. She asked, “Mom, do any of my meds make me grumpy?” “Yes. Prednisolone.” It raises blood pressure, putting her on a low sodium diet. It raises cholesterol. It makes her moody. Gives acne. Makes her hungry. Weight gain. It tastes SO bitter, that the best way she can take it is to take it in two 10mL oral syringes and swallow quickly with some kind of chaser, like maraschino cherries or cookies to scrub out that bitter taste. I tried some prednisolone to test out taste solutions, and was scowling for 30 min. Nasty stuff.
Our dog has a heart murmur. Charmin, our dog who survived dramatic blood loss from intestinal cancer a few months ago, got an echocardiogram done and has chronic valvular disease. No heart failure now (yay!), no need for meds (yay!), but this is expected to get worse over time (boo…).
Kids have been enjoying watching “The Simpsons.” After we went on the Universal Studios Simpsons ride, Alyssa laughed so much and said, “I think I want to watch this show.” It’s available on Disney+.
One in a Trillion: Alyssa’s medical journey 