does anyone know how to locate a plant based RD specializing in PKD?

[FelineFandom146]

I've had CKD PKD diagnosed finally in 2003. I was steady for seventeen years until my PCP put me on a triple group of meds to treat a UTI, which caused my eGFR to decline. I'm now at Stage 5 with eGFR of 10 and am eating a whole food plant based LPD to VLPD.

I've been trying to locate a plant based Renal Dietitian for over a year now. Someone who specializes in Adult Dominant PKD or just PKD, hopefully. No, my Nephrologist doesn't know of anyone and doesn't recommend one. Virtual is fine and probably better because I'm in the Deep South of the USA where medical care is not the best. Eating Vegan is not the norm here. I'm a Vegan following a VLPD but would like some guidance and feedback every now and them. I've already checked with AAFP, NKF and PKD Foundation and they haven't a clue. Thanks in advance.

[SBRD]

Hi,

It may sound kind of weird but I'm actually a renal dietitian and I joined these communities just to see what patients are saying so that I better understand concerns of patients to better help me to help them! I've never actually posted before. I'm working in dialysis now and no longer in pre-dialysis CKD, but Jessianna Saville is an AMAZING RD specializing in PKD and nutrition, and has also been working with plant-based ketogenic diets as new emerging evidence suggests that by changing the metabolic pathway it can help the cysts from getting larger. Here is a link to her site: kidneynutritioninstitute.or...

She is in TX but does virtual care as well.

Wishing you the best!

[FelineFandom146 in reply to SBRD]

Hello and thank you for the info. I shall check into this ASAP! Much appreciated! Stay safe!

[SBRD in reply to FelineFandom146]

You're very welcome, you too!

[Kbristow]

Hi you may want to check with happyhealthnutrition.net/. Lauren Levy worked as a renal dietitian in the San Francisco area for many years, and now has her own consulting service virtually. She is wonderful and often called on to speak at kidney events. I haven't yet worked with her partner Karina but assume she would be great as well. Good luck!

[FelineFandom146 in reply to Kbristow]

Thank you for the info. I shall look into it!

[ShyeLoverDoctor]

Have only heard of Renal dieticians, not any specializing in PKD. Alicia Calvo in Tarzana, California is who I see.