Post Nephrectomy Diet, CKD, diet, supplements

[RayinMD]

Hello,

I had a Radical Nephrectomy in December 2021; I had been having digestive issues for some time (1-2 years prior to diagnosis; really, most of my life), and misdiagnosed I assume numerous times as Western medicine said "nothing wrong," you just need to get yourself on a LOW-Fod diet, nothing wrong we can see (after many tests, colonoscopy, et al). I lost 40 pounds in 3 months, my stomach was constantly sour and onfire. My doctor finally ordered a CT scan for looking more closely at organs and digestive track; we discovered two Cancers in right kidney, clear cell carcinoma, papillary rental cell carcinoma (one 1 cm, one 3 cm). This was all going on simultaneously as I was finishing up Grad school and transitioning from a DoD Career I had been at for nearly 35 years. And, we had just had COVID, and many other events adding stress to this former language analyst for the Air Force.

Fast forward. Cancer still gone, per recent tests, etc. 5/2023. My kindney function fluctuates, and seems to be doing really well as long as I drink loads of water and watch my diet. I have a Kidney doctor, she said ALL preworkouts are OUT. I had been very ignorantly taking RSP AMINOLEAN.

Please, would love some thoughts on the best way to take care of one's kidney (doc has NOT advised low protein, low potassium, or anything of the sort. She does not want me on any kind preworkouts though. How does one find a nice inclusive database for ingredients that are almost certainly or likely nephrotoxic? I am so confused by all the information in the public, from Western Medicine, etc. I am currently seeing a Nephrologist, Urologist, and Functional Medicine doctor. I find it difficult to manage all the conflicting or or overwhelming data and information. Any advice or input, shared experiences will be appreciated. Thank you so much in advance!

R

[userotc]

It's unsurprising that you're receiving conflicting advice. I suggest you focus on your FM doctor as likely the only one of the 3 that is trained and qualified in nutrition.

My mum follows a Nutritional therapy protocol and has had great improvement since her nephrectomy `6y ago eg eGFR almost doubled. So instead you could switch to a qualified NT specialising in renal.

[RayinMD in reply to userotc]

Hello, thanks for taking the time to reply to my earlier post. I did not mean to do a drive by posting. Great stuff, and good information for this newbie! I've been trying to steamline everyone with her at the helm, but, the others are resisting somewhat. I am now looking for a renal diet specialist or something something like that. Again, so apprecite your kindness and reply, thanks. Sorry I am just getting to it. Hope you have been well. R/R

[userotc in reply to RayinMD]

No problem - and belated congrats in beating cancer, like my mum 🤞🤞

If you need help finding a qualified Nutritional Therapist specialising in renal, I'll happily send you links from which to choose.

[hope1419]

I am so glad you are cancer- free. That must be such a relieve! My humble advise is Get INFORMED about your illness, causes, whst gives you flairs, what foods to eat and avoid. I think it would be good if your nephrologist can tell you about it or if you can see a renal dietician. Not all kidney issues are the same. Some people's cause maybe high sodium or potassium. Others like me, are a multitude of factors among which are high purines... mybfamily has a history of gout and parathyroid ptoblems that mixed together in me having kidney stones so big that damaged my kidneys. I've had a nephrecromy and recently a transplant. So, based on your causes learn to interpret your blood tests and adjust your diet accordingly. And keepndrinking tons of water!

[RayinMD in reply to hope1419]

Thank you for taking the time to respond to my post and your kind words! I had started many times to reply only to be taken over by day to day activities and some ADD. You remind me of diligence and consistency. I have to be both, which have been tremendously challenging. I am baffled by how the system here of medicine tries to function. All the doctors doing their little parts. I am currently seeking more guidance in the area of monitoring and checking diet and supplemements, hence a great CKD savvy dietician. Trying to centralize care of these different areas of care, it is not fun, nor extremely reassuring.

Thanks again for the hope thouhg hope1419! And, the reminders to drink tons of WATER! Water water water! When in doubt, drink water! That's been my slogan lately! Sure enough, load up with water, lo and behold, my eGFR tests pretty awesome! Almost good heehee. There is hope.

Thanks again. Sorry it took me so long to respond, I so appreciate your time and kindness!

r/R

[Mwjkksjmh in reply to RayinMD]

Am I the only one that is limited to 6-8 drinks a day

[RayinMD in reply to Mwjkksjmh]

I am sure you are not the only one, but, for my current state of health, water is my friend. Interesting...yes, we are in different places. Best to you.

[CKD2-4]

Hi. I too have to limit my fluids to no more than 64 once’s a day. At first it was a little difficult but now I’ve learned how to space my water out over the course of a day so it’s now routine.

[OldTownhammock]

The National Kidney foundation has a lot if information