1. < Kidney & Bladder

Stage 3 chronic kidney disease (CKD): What specialists do I see?

Posted by rozalia @rozalia, Aug 24, 2016

My primary says I do not need to see a kidney specialist. Is this true. My blood chems are ok.

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kamama94 | @kamama94 | May 3, 2019
In reply to @marvinjsturing "@gingerw The biggest changes are diet and energy level. Ten years ago I was diagnosed as..." + (show)
@marvinjsturing

@gingerw The biggest changes are diet and energy level. Ten years ago I was diagnosed as a Type II diabetic. After a long learning curve, I adjusted well to the diagnosis. Through exercise, diet and metformin, everything was under control. I actually enjoyed the foods I was allowed to eat. Then came pancreatic cancer and complications from the chemo. Now I am a Type I diabetic and have stage 4/5 CKD. I've had to give up a lot of the foods that I have enjoyed. I have to watch my intake of phosphorus, potassium and sodium. I try to balance my diet between CKD and diabetes. Maybe I would do better if I watched my diet better, but I've decided that I am also going to enjoy my life. I take lots of meds to compensate for what my kidneys can no longer do or to slow down the deterioration of my kidneys. My nephrologist suggested that I look into a kidney transplant. I wondered if I wanted to go through that since things have been holding steady for so long. She reminded me that I have been on the edge of needing dialysis for a long time and anything could push me over the edge at any time. I was evaluated at Mayo Rochester last August and am on the transplant list as inactive at this time. Coming to Rochester in June for another checkup. If I am still cancer free I will be placed on the active list. My sister is coming later in June to see if she qualifies as a donor. Just waiting to see how things progress.

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2marvijsturing, I hear you about enjoying life. I made a pact with a friend and neighbor,I will buy one Roma tomato a month, take two small slices (which my neph approved because that's not a lot of P & K) and give my friend the rest of the tomato. One sandwich a month with 2 tiny tomato slices neph said would be ok but I don't trust myself to have a whole tomato in my kitchen!

Whatever decision is reached about your transplant, I'm pulling for you and wish you the best of outcomes and am sending you healing thoughts and positive vibes.

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Mentor
Ginger, Volunteer Mentor | @gingerw | May 3, 2019
In reply to @marvinjsturing "@gingerw The biggest changes are diet and energy level. Ten years ago I was diagnosed as..." + (show)
@marvinjsturing

@gingerw The biggest changes are diet and energy level. Ten years ago I was diagnosed as a Type II diabetic. After a long learning curve, I adjusted well to the diagnosis. Through exercise, diet and metformin, everything was under control. I actually enjoyed the foods I was allowed to eat. Then came pancreatic cancer and complications from the chemo. Now I am a Type I diabetic and have stage 4/5 CKD. I've had to give up a lot of the foods that I have enjoyed. I have to watch my intake of phosphorus, potassium and sodium. I try to balance my diet between CKD and diabetes. Maybe I would do better if I watched my diet better, but I've decided that I am also going to enjoy my life. I take lots of meds to compensate for what my kidneys can no longer do or to slow down the deterioration of my kidneys. My nephrologist suggested that I look into a kidney transplant. I wondered if I wanted to go through that since things have been holding steady for so long. She reminded me that I have been on the edge of needing dialysis for a long time and anything could push me over the edge at any time. I was evaluated at Mayo Rochester last August and am on the transplant list as inactive at this time. Coming to Rochester in June for another checkup. If I am still cancer free I will be placed on the active list. My sister is coming later in June to see if she qualifies as a donor. Just waiting to see how things progress.

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@marvinjsturing Similar to your situation, I juggle multiple health concerns. I am fond of saying, "oatmeal, apples and cardboard all on the approved list". A little bit of forbidden foods once in a great while allow me to not think that I can then binge, which will do nothing except make me sick. My protein has to be restricted because of the kidney disease. Which doesn't do me good for my energy levels where I need protein. Source out quality protein like eggs, chicken and Athenos Roasted Red Pepper hummus with my morning apple! On days when I can tolerate perhaps a little bit of salt I might have a tortilla chip and take tiny bites to make it last. But I have to watch edema issues. Like others have said with chronic illnesses you pick your battles but you also get to pick your pleasures. And weigh what is going to work for you. Knowing that a splurge today may lead to several days of discomfort can do a good job of swaying me away from something I think I need to have at that moment. We soldier on, and are mighty together!
Ginger

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Gaybinator | @gaybinator | May 3, 2019

Immunotherapy killed my husband's transplanted kidney. It was a choice between the cancer (the result of immuno-suppression after the transplant) or living on dialysis. Squamous Cell Carcinoma is common in KIDNEY transplant patients - they don't know why. When you get a transplant, you MUST stay out of the sun and see a dermatologist regularly - an informed and tenacious dermatologist. My husband's dermatologist was neither of those things. My husband's form of SCC is spindle cell, and it is as aggressive as melanoma.

I find the complete reversal of dietary guidelines interesting. Before, and for the two years after the transplant, it was water, water, water. Now it is 32 oz per day, and that includes the water in food.

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3 replies
kamama94 | @kamama94 | May 3, 2019
In reply to @gaybinator "Immunotherapy killed my husband's transplanted kidney. It was a choice between the cancer (the result of..." + (show)
@gaybinator

Immunotherapy killed my husband's transplanted kidney. It was a choice between the cancer (the result of immuno-suppression after the transplant) or living on dialysis. Squamous Cell Carcinoma is common in KIDNEY transplant patients - they don't know why. When you get a transplant, you MUST stay out of the sun and see a dermatologist regularly - an informed and tenacious dermatologist. My husband's dermatologist was neither of those things. My husband's form of SCC is spindle cell, and it is as aggressive as melanoma.

I find the complete reversal of dietary guidelines interesting. Before, and for the two years after the transplant, it was water, water, water. Now it is 32 oz per day, and that includes the water in food.

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@gaybinator, I'm sorry to hear about your husband's cancer. What a shame his derm wasn't better informed! You must feel so frustrated, among other things, of course. Keep us posted on his progress and please know people here are supportive.

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Gaybinator | @gaybinator | May 3, 2019

The PET scans have been clear since he started on Keytruda in June 2017. If it wasn't for all the damage done by surgeries and radiation before we started a systemic approach, he would be in fairly good shape. However, we tried everything else in an attempt to save the kidney.

In summer 2016, they discontinued the transplant drugs because the immuno-suppression was feeding the cancer. We knew it was only a matter of time before the kidney failed. He began dialysis in March 2017 and the Keytruda finished it off in June. I thank God for the Keytruda. He would be gone otherwise.

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1 reply
kamama94 | @kamama94 | May 3, 2019
In reply to @gaybinator "The PET scans have been clear since he started on Keytruda in June 2017. If it..." + (show)
@gaybinator

The PET scans have been clear since he started on Keytruda in June 2017. If it wasn't for all the damage done by surgeries and radiation before we started a systemic approach, he would be in fairly good shape. However, we tried everything else in an attempt to save the kidney.

In summer 2016, they discontinued the transplant drugs because the immuno-suppression was feeding the cancer. We knew it was only a matter of time before the kidney failed. He began dialysis in March 2017 and the Keytruda finished it off in June. I thank God for the Keytruda. He would be gone otherwise.

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@gaybinator, I'm so glad he's still here. And I'm glad you're here in this discussion.

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Mentor
Ginger, Volunteer Mentor | @gingerw | May 3, 2019
In reply to @gaybinator "Immunotherapy killed my husband's transplanted kidney. It was a choice between the cancer (the result of..." + (show)
@gaybinator

Immunotherapy killed my husband's transplanted kidney. It was a choice between the cancer (the result of immuno-suppression after the transplant) or living on dialysis. Squamous Cell Carcinoma is common in KIDNEY transplant patients - they don't know why. When you get a transplant, you MUST stay out of the sun and see a dermatologist regularly - an informed and tenacious dermatologist. My husband's dermatologist was neither of those things. My husband's form of SCC is spindle cell, and it is as aggressive as melanoma.

I find the complete reversal of dietary guidelines interesting. Before, and for the two years after the transplant, it was water, water, water. Now it is 32 oz per day, and that includes the water in food.

Jump to this post

@gaybinator Thank you for bringing up the importance of skin care after transplant. To lose a transplanted kidney because of the drugs used to keep it around, must be devastating. A tough place to be. I have met several people who have chosen dialysis over transplant, or who cannot be transplanted. My husband's transplant was almost three years ago, and it is a constant battle to get him to wear sunscreen. As a melanoma survivor, I know the value of vigilance.
Ginger

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Gaybinator | @gaybinator | May 3, 2019

Depends on what is wrong with your kidneys. Polycystic disease can take years before it shows as a problem in your labs. My husband’s symptom was high blood pressure. A consult wouldn’t hurt.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 4, 2019

I have just finished my annual liver/kidney transpant check-up. Upon reading thru this discussion, I am amazed and thankful for the vast amount of wisdom and experience that has been shared here.

My kidney failure was sudden, and I had an emergency dialysis with a port (??name) in my neck. In my case they called it 'rbbbit ears'. That particular entry was intended for short term, life saving only, and when I turned my head, it was uncomfortable. It was replaced with a 'more permanent temporary port in my chest'. All of this occurred while I was in hospital. I lived with it for 5 weeks as an outpatiend while undergoing dialysis prior to transplant. After transplant, when my new kidney began to do its job, it was removed.

This conversation really emphasizes how unique we all are, and how our treatments are all suited to our own needs. You are all an inspiration and shining examples of the importance of asking questions, sharing experiences and advocating for yourselves. I wish for continued strength to all of you.

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1 reply
kamama94 | @kamama94 | May 4, 2019
In reply to @rosemarya "I have just finished my annual liver/kidney transpant check-up. Upon reading thru this discussion, I am..." + (show)
@rosemarya

I have just finished my annual liver/kidney transpant check-up. Upon reading thru this discussion, I am amazed and thankful for the vast amount of wisdom and experience that has been shared here.

My kidney failure was sudden, and I had an emergency dialysis with a port (??name) in my neck. In my case they called it 'rbbbit ears'. That particular entry was intended for short term, life saving only, and when I turned my head, it was uncomfortable. It was replaced with a 'more permanent temporary port in my chest'. All of this occurred while I was in hospital. I lived with it for 5 weeks as an outpatiend while undergoing dialysis prior to transplant. After transplant, when my new kidney began to do its job, it was removed.

This conversation really emphasizes how unique we all are, and how our treatments are all suited to our own needs. You are all an inspiration and shining examples of the importance of asking questions, sharing experiences and advocating for yourselves. I wish for continued strength to all of you.

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@rosemarya, first of all thanks for mentoring and 2nd, much appreciation that you shared this and 3rd, grateful for your kind words. You're an inspiration!

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