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

@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.

@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.

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.

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.

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.

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.