Newly diagnosed with CKD (Chronic Kidney Disease) and terrified

@help60 Welcome to Mayo Clinic Connect. You have wise words of advice here, and absolutely, knowledge is power! "Don't panic" is easy to say, harder to accomplish, as i bet you know first-hand, right!?

Don't let a doctor pooh-pooh your concern over kidney disease. It is better, from my experience, to learn all you can to mitigate the condition. Proper diet for you, moderate exercise, stress control, adequate rest all play a part. When you understand the underlying cause of the kidney disease, work on that. For me, my underlying cause is a very rare autoimmune condition [less than 50 people ever diagnosed with it!] that causes fibrin deposits into the filtering components of my kidneys. No treatment for that. But by following a renal diet long before the drs suggested it, I was able to preserve function for a long time.

Tell us what you are doing to track down a good nephrologist and dietician, if you would?
Ginger

Glomerulonephritis. Is this your dx? I was diagosed almost 3 years ago with this

Judy

@kjm54 The underlying condition for my kidney disease is called Type III Collagenofibrotic Glomerulopathy. Where glomerulonephritis causes inflammation of the filtering components, what I have actually places fibrin deposits into those same filtering components, eventually clogging them and shutting them down. There are 28 known different types of collagen in the body, each with responsibilities and activities! Who would have known!
Ginger

@gingerw how were you diagnosed? I have a high ANA and high scleroderma antibodies but docs have not found a connection to the drop in my kidney function. It may be from low blood pressure and muscle loss which can affect the GFR.

I agree it is important to find out the cause of CKD. My dietary advice is the opposite of the usual, with the nephrologist telling me to increase salt and push protein.

@windyshores For years the high protein levels in my urine were thought to be caused by systemic lupus, which I was diagnosed with in 1988. No one questioned it, no one investigated further, until 2012 when I saw a new nephrologist who was more up-to-date with different conditions, and had an interest in my case. He recognized there were other values that seemed to contradict the theory of SLE as a culprit, and suggested a kidney biopsy. That was done, and the pathology was sent to Keck USC in Los Angeles, with a confirming pathology done by Cedars Sinai in Los Angeles. This condition was first recognized officially in 1996, and their departments had read case studies, but had never seen an actual case! They were very excited, to say the least. This diagnosis was reconfirmed in 2019 with another kidney biopsy.

I have been followed closely since then, and went on dialysis as of Sept 2022. I followed a good renal diet long before the drs suggested it, starting back in 2005 or so. In my case, I believe it helped hold off the inevitable decline in function. For me, there is the need to push protein also, as dialysis depletes that [especially peritoneal].
Ginger

When I was diagnosed I was panicking also. I started reading and looking for answers. I have uncontrollable high blood pressure that I am dealing with. My cardiologist and nephrologist work together to try and make it go down. I have controlled type 2 diabetes, celiac disease that make me eat gluten free. I have to Lear to make a proper diet for all the conditions. I finally found a renal dietitian who is helping me with diet and is covered by Medicare. So ask your nephrologist about a dietitian to work with you and your panick can improve and acceptance become a reality.

Our Dr invited us to Circle of Care and the dietician is working with my husband, who is nearly stage 4. So far, we know that many online lists of Potassium are out of date; but the foods we are learning to avoid are potatoes tomatoes and beans. Protein limited to size of your hand. There are others, but not on our list, so far. My issue is with a lower GFR since I fail to keep hydrated.

Lisinopril is what my husband has for BP, but it bothers his kidneys. It is a back and forth discussion but since he is at 5mg, hanging in there with that. With diabetes, there are conflicts all over the place. Take care.

Fifteen year habit of taking water. That is inspirational. I just had kidney removed January 12, I also have stage 3 chronic kidney disease with current GFR Of 38. I just learned a new term or strategy that has helped me with drinking water. It is simply called “structured water” which is planning or scheduling water. I set my alarm on my phone and it goes off every hour. Drives you nuts at first, but now I can turn my alarm off before it even goes on. Changing our patterns can be very daunting. Whether it is diet, exercise, drinking water or even our present state of being as we live with our various diagnoses, we must change our patterns. Blessings.

@dougr19, It is good to meet you. I commend you for creating your own strategy for managing your water intake! I sometimes wonder what we would do without our phone alarms! Mine is set for my immunosuppressant meds that must be taken at 12 hr intervals due to my transplant. I have, overtime (and laziness) gotten away from adding ice or even a lemon slice, and drink the plain 'boring' water. I'll do anything to keep my transplanted liver and kidney happy! Now my husband is even drinking more water! It has become a family 'thing'.

Doug, I also live with one working kidney, the transplanted one. With all the positive things that you are doing, have your doctors given any indication of what to expect of your remaining kidney?