Chronic kidney disease (CKD) support: Introduce yourself and connect

@bobcr welcome to Mayo Clinic Connect. When I was in your shoes and at your stage (stage 4) I self referred to a dietician. My CKD is due to diabetes and hypertension. It helps to know the causes of your CKD so that you can customize the treatment. In my case I was already following dietary plans for diabetes. When I found a dietician I was blessed to find one who was diabetic herself and she knew about renal nutrition. What I learned from her is as follows:
Protein is hard on kidneys, particularly red meat. I mainly stick to poultry, fish /seafood, some pork, eggs & cheese for my protein. I limit red meat. The dietician recommended the amount I should have based on my size (height & weight) and gender. I’m female. Men have more muscle and generally require more protein.
Salt / sodium. I limit this due to my history of hypertension. Some salt substitutes contain potassium which brings me to the next category of things to learn about.
Kidney function labs. These are calcium, phosphorus, potassium, sometimes oxalates and one other that I can’t recall at the moment. My nephrologist believes in “eating for the labs”. He monitors the above substances in my lab work and advises if changes need to be made. For example my calcium was getting too high and I needed to cut it back. I also have osteoporosis. I take a calcium supplement for that and needed to reduce the dose a bit for my kidneys. So you see it can get complicated, especially if you have co-morbidities. A lot of CKD patients have to watch potassium. Mine has been ok. But the dietician gave me lists of higher and lower potassium foods that has been helpful to refer to. There are other lists for the other substances too that can be helpful also.
Hydration. I asked both my nephrologist and the dietitian how much and what kind of fluids I should be consuming. The answer varies according to individual situations and differences. But your providers should be able to guide you.
This is a lot to take in. It is doable and so worth it. Your providers can help you prioritize where to start so you can break it down into smaller more manageable steps. That is what I did. In my case I was able to improve my CKD from stage 4 to stage 3. It didn’t happen overnight. It has been a long journey (a decade) but again is worth it!

Hello Group! My 52 year old brother had a major life change. Jan '26 in ICU, started dialysis, has since had adrenal, kidney removed. I am here to help him navigate as he has regular IDH post dialysis. He follows the strict diet but gains weight. He is getting tired of being tired. Looking for advice, information, best help for him and his future. He isn't giving up, looking for best care to return to feeling himself again.

Hello, I'm a 19 Year old female with stage IV CKD. I'm looking for information on what diet I should be on or if there's some exercise or something I should be doing. I was just recently in the hospital for six days and doctors sent me home, they don't know what to do next.( I have been to the hospital recent times already.) My condition is really severe at the moment. I cannot sit up without getting a severe headache and can move only to a extent because of severe back and neck pain. I have a high blood pressure and have to Limit potassium and salt intake. Otherwise, doctor did not give me much of anything I should be doing for the end stage of stage IV. Well, I was in the hospital. They were going to put me on dialysis then my creatinine came down a little bit. So now I was sent home to do what I don't know.????
A few of my diagnosis are hEDS, POTS, MALS, MAYTHERNERS, Juggler vien COMPRESSIONS, cystic ovaries. (only to name a few,) .....

Hello, I'm a 19 Year old female with stage IV CKD. I'm looking for information on what diet I should be on or if there's some exercise or something I should be doing. I was just recently in the hospital for six days and doctors sent me home, they don't know what to do next.( I have been to the hospital recent times already.) My condition is really severe at the moment. I cannot sit up without getting a severe headache and can move only to a extent because of severe back and neck pain. I have a high blood pressure and have to Limit potassium and salt intake. Otherwise, doctor did not give me much of anything I should be doing for the end stage of stage IV. Well, I was in the hospital. They were going to put me on dialysis then my creatinine came down a little bit. So now I was sent home to do what I don't know.????
A few of my diagnosis are hEDS, POTS, MALS, MAYTHERNERS, Juggler vien COMPRESSIONS, cystic ovaries. (only to name a few,) .....

Hello, I'm a 19 Year old female with stage IV CKD. I'm looking for information on what diet I should be on or if there's some exercise or something I should be doing. I was just recently in the hospital for six days and doctors sent me home, they don't know what to do next.( I have been to the hospital recent times already.) My condition is really severe at the moment. I cannot sit up without getting a severe headache and can move only to a extent because of severe back and neck pain. I have a high blood pressure and have to Limit potassium and salt intake. Otherwise, doctor did not give me much of anything I should be doing for the end stage of stage IV. Well, I was in the hospital. They were going to put me on dialysis then my creatinine came down a little bit. So now I was sent home to do what I don't know.????
A few of my diagnosis are hEDS, POTS, MALS, MAYTHERNERS, Juggler vien COMPRESSIONS, cystic ovaries. (only to name a few,) .....

I have been diagnosed with stage 3a CKD, now and for the past 2 years. I have also been diagnosed with MGUS, a plasma cell disorder which can be a precursor to multiple myeloma. My hemoglobin is 10.1. Other tests rule out common disorders for this anemia. ( Not iron, folate, B 12 or other deficiencies diagnosed). No special diet has been described; only drink more water. I suspect the anemia is due to CKD? With my BP under good control, I wish there was more that could be done for these conditions. Any suggestions?

@raehost welcome to Mayo Clinic Connect. Wow you have a lot going on in your list of diagnoses. Is it overwhelming? I have a suggestion that might be helpful. Since you were recently hospitalized do you have any discharge or follow up instructions? (name &/ or number of who to contact if you have further problems, concerns or questions) You could contact that provider for an appointment. Ask for help in prioritizing your various conditions and also for referrals to applicable specialists. If it turns out that your CKD is the place to start find a nephrologist & dietician who knows renal nutrition. My suggestion could help you break down your situation into smaller more manageable steps towards learning and caring for yourself.