1. < Kidney & Bladder

Renal nutritionist

Posted by susangail53 @susangail53, Nov 16 9:28am

I am so tired of hearing what you can and cannot eat with PKD. I've heard plant based keto is excellent for function, then I read keto with grass fed beef and mostly plants is better. I always thought ketosis is bad for the kidneys. So...I've made an appointment with a renal nutritionist at my nephrologist's office in January. Has anyone used a renal nutritionist? Is it helpful or will I just be wasting more time with this disease when nothing will actually help? Thanks for your advice!!!

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kidneybean1 | @kidneybean1 | 3 days ago
In reply to @dougr19 "I had kidney removed in January 2024. In mid 2023 with 2 kidneys my GFR was..." + (show)
@dougr19

I had kidney removed in January 2024. In mid 2023 with 2 kidneys my GFR was over 60. Now with one kidney in November 2024 my GFR is 35. I have read, researched and try to do my best when it comes to drinking water and diet. I have come across a talk given by a nephrologist that goes over diet and its effect on your kidneys. The talk is one hour and it is the most informative Information on diet I have seen to date. The information given on how kidneys work was also well done and in easily understood terms. I do not know the policy on linking files to this site. However, if anyone is interested you can send a private message and I will send a link or if I am allowed to place a link someone can let me know. More information is never a bad thing. We are all seeking. Blessings.

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Dougr19
Can I ask, why was your kidney removed?

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kidneybean1 | @kidneybean1 | 3 days ago
In reply to @gangcarotid1 "I am very interested in this link as well. Had 2 tumors off left kidney mid..." + (show)
@gangcarotid1

I am very interested in this link as well. Had 2 tumors off left kidney mid Oct. All metabolic panel items are back up to GOOD. But I'd like to hear pointers from renal dietitian on how to proceed; I've only been given generalizations. I got a miracle last mo w 100% of tumors removed w good margins, and I do not want to mess this up! I've also seen lots of web links shared on Mayo Connect. God bless you in your journey.

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Gangcarotid1-
Can I ask if the 2 tumors you had removed were cancerous?
My urologist has scheduled an ultrasound on my left kidney cyst/growth to rule out cancer.

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1 reply
gangcarotid1 | @gangcarotid1 | 3 days ago
In reply to @kidneybean1 "Gangcarotid1- Can I ask if the 2 tumors you had removed were cancerous? My urologist has..." + (show)
@kidneybean1

Gangcarotid1-
Can I ask if the 2 tumors you had removed were cancerous?
My urologist has scheduled an ultrasound on my left kidney cyst/growth to rule out cancer.

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Yes both were malignant. Lower lobe 5.4 cm tumor was renal cell carcinoma. Upper lobe 2+ cm tumor was papillary renal cell carcinoma. (Papillary means the tumor had 'fingers').

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1 reply
kidneybean1 | @kidneybean1 | 3 days ago
In reply to @gangcarotid1 "Yes both were malignant. Lower lobe 5.4 cm tumor was renal cell carcinoma. Upper lobe 2+..." + (show)
@gangcarotid1

Yes both were malignant. Lower lobe 5.4 cm tumor was renal cell carcinoma. Upper lobe 2+ cm tumor was papillary renal cell carcinoma. (Papillary means the tumor had 'fingers').

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What imaging did they use to know for sure it was Cancer?

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1 reply
gangcarotid1 | @gangcarotid1 | 3 days ago
In reply to @kidneybean1 "What imaging did they use to know for sure it was Cancer?" + (show)
@kidneybean1

What imaging did they use to know for sure it was Cancer?

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CT scan w contrast. (They took 1,248 scans!) Was told at pre-surgery consult it was likely (85% chance) malignant, & likely would mean a radical nephrectomy. The surgeon at Mayo reviewed those scans more in-depth, and a member of his team called me ON A SATURDAY!! to share that the surgeon believed he had a 95% possibility of saving my kidney! And he did. Was confined to the kidney and removal of both Was with 'good margins'.

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1 reply
kidneybean1 | @kidneybean1 | 3 days ago
In reply to @gangcarotid1 "CT scan w contrast. (They took 1,248 scans!) Was told at pre-surgery consult it was likely..." + (show)
@gangcarotid1

CT scan w contrast. (They took 1,248 scans!) Was told at pre-surgery consult it was likely (85% chance) malignant, & likely would mean a radical nephrectomy. The surgeon at Mayo reviewed those scans more in-depth, and a member of his team called me ON A SATURDAY!! to share that the surgeon believed he had a 95% possibility of saving my kidney! And he did. Was confined to the kidney and removal of both Was with 'good margins'.

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I’m sorry, I don’t understand your last sentence about saving the one kidney. If they were both malignant, why didn’t they remove both kidneys instead of just one?

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1 reply
gangcarotid1 | @gangcarotid1 | 3 days ago
In reply to @kidneybean1 "I’m sorry, I don’t understand your last sentence about saving the one kidney. If they were..." + (show)
@kidneybean1

I’m sorry, I don’t understand your last sentence about saving the one kidney. If they were both malignant, why didn’t they remove both kidneys instead of just one?

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Sorry for the confusion. Both tumors in my left kidney... not both kidneys. And the 2 tumors were Stage 1a and 1b, got em early. So bladder, ureter, etc. were uninvolved.

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1 reply
kidneybean1 | @kidneybean1 | 3 days ago
In reply to @gangcarotid1 "Sorry for the confusion. Both tumors in my left kidney... not both kidneys. And the 2..." + (show)
@gangcarotid1

Sorry for the confusion. Both tumors in my left kidney... not both kidneys. And the 2 tumors were Stage 1a and 1b, got em early. So bladder, ureter, etc. were uninvolved.

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I’m very happy for you that they got them early.
Thanks for explaining.

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1 reply
gangcarotid1 | @gangcarotid1 | 3 days ago
In reply to @kidneybean1 "I’m very happy for you that they got them early. Thanks for explaining." + (show)
@kidneybean1

I’m very happy for you that they got them early.
Thanks for explaining.

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I'm happy for me too!
Glad I went to Mayo. My PCP and other local drs were "operating above their paygrades, grasping at straws" in my post-op care. My surgeon was patient w them til they started making assumptions about my surgical procedure, etc. And told me to 'extract' myself from PCP post-op oversight and find a nephrologist. World of difference.

REPLY
kidneybean1 | @kidneybean1 | 3 days ago
In reply to @dougr19 "I had kidney removed in January 2024. In mid 2023 with 2 kidneys my GFR was..." + (show)
@dougr19

I had kidney removed in January 2024. In mid 2023 with 2 kidneys my GFR was over 60. Now with one kidney in November 2024 my GFR is 35. I have read, researched and try to do my best when it comes to drinking water and diet. I have come across a talk given by a nephrologist that goes over diet and its effect on your kidneys. The talk is one hour and it is the most informative Information on diet I have seen to date. The information given on how kidneys work was also well done and in easily understood terms. I do not know the policy on linking files to this site. However, if anyone is interested you can send a private message and I will send a link or if I am allowed to place a link someone can let me know. More information is never a bad thing. We are all seeking. Blessings.

Jump to this post

Dougr19
Can I ask why you had your kidney removed?

REPLY
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