PKD or CKD Users?

ag3113

Hi all! I have an inherited kidney disease known as "PKD." It's a chronic kidney disease (CKD), which means it's never really going away. I have to eat a pretty specialized diet. So if you know anyone on here with PKD or CKD more generally (or you are yourself one of us!), please respond!

I'm REALLY interested in sharing knowledge as to how to keep up with phosphorus and making sure MFP labels are correct as to potassium. Also, I'm an scientist and academic with a PhD, so I can read and (partly) understand the academic research literature on PKD. Would love to nerd out with you or to help you translate some of the academic, biological, or statistical language in that literature.

Anyway, holler if you're one of my PKD peeps!

-Albert

protzmom

Hi Albert. 47 yo female with Stage 3 CKD (interstitial nephritis). I have lost 30 lbs in the last three and a half months after my nephrologist threatened to increase my bp meds and put me on cholesterol medicine. I have lowered my cholesterol more than 40pts and have lowered my bp from 150/100 nominally to 125/75. Unfortunately my kidney function continues to decline. eGfr of 66 pre-weight loss. 6 weeks in, my eGfr dropped to 55 and 6 weeks after that it dropped to 50. Inititially, my nephrologist thought the decline could be a result of my new exercise regiment and would improve by the next visit. Apparently, the breakdown of muscle tissue releases creatinine into the blood stream which could affect the eGfr calculation. He seems more concerned now that my functions continue to decline. Would love to hear from anyone else who has experienced this. I will be curious to see what my numbers are when I go back next week. It is frustrating to think that in trying to get healthy, I am somehow doing more damage to my kidneys!!!

ag3113

Hi protzmom! Sorry, I never saw this! I've had some screwy GFR numbers too. I have supposedly gone down by 15% and back up to higher than originally tested, all within six months. You should get on one of the Facebook CKD pages -- lots of good info there!