Doctor never told me

I finally self referred to a nephrologist about a year ago. I'm 77 years old and he sees me every month, I'm in 3b. It was very difficult getting an appointment, all the nephrologists were booked out about 6 months.

The same happened to me. My rheumatologist asked me the same question and I didn’t know I had stage 3 kidney disease either. He helped me get with a nephrologist and I had a biopsy. I’m thinking this happens more often than we think. Hopefully this message reaches organizations like the AMA and ASN to communicate standards and guidelines for PCPs referring patients to nephrologists. I stayed with my PCP but now rely more on other specialists and seek help and answers more readily from other resources and providers.

@craigk1127 Welcome to Mayo Clinic Connect. I think as you read through the journeys of many members, you will find a similar experience. Our primary doctors don't seem to stress the importance of good kidney function, or downplay when we need to be addressing a problem. I honestly don't know why they do that! Mine did the same thing.

Push for that referral to a nephrologist, or check with your insurance to see if you can self-refer. It certainly seems difficult to get in to see specialists these days! Meanwhile, start following a sound renal diet, that includes limited protein, reduced potassium/calcium/phosphorous/salt. https://www.kidney.org/nutrition is a good place to start.
Get moderate exercise, good rest, minimize your stress. If you know why your kidney function is declining, you may want to look into helping that concern. High blood pressure and diabetes are the leading causes of kidney disease.

We need to advocate for our own health. If your primary doesn't seem to want to help you, is there someone else in the same practice you can change to? Don't be afraid to speak up! If you need to go to another practice/doctor, it may take awhile to get in.
Ginger

I have only responded to this forum once, after I found out I had Stage 3 CKD, that was three months ago. For three years I did not have a doctor as the last one left the practice and was not replaced relying on a nurse practitioner. I was getting over PMR at the time and I guess the CKD just slid in under the radar. I have not felt sick or any pain. No swollen ankles, the only symptom I had was itching.

I now have a real doctor and have just returned from a visit, where I was told I now have stage 4 Kidney Disease. After weeks struggling with lists of diets and recipes, this is not what I had hoped for. Now I have to make up my mind whether I agree to an appointment with a kidney specialist knowing that thanks to the government I may lose my ACA health care in the blink of the eye. I am also meeting with a dietician to try and sort out what I can eat between my Autoimmune diet and CKD diet. I have several books on both food requirements and some cheat sheets for CKD, with potassium listed for several foods, but they don’t help much.

After 6 years fighting PMR I do not have the stomach for another fight that can only end one way. I will be 81 in September and I am wondering if it’s worth continuing with any of it. I am the last of my family and I feel their loss very much. I swing between a desire to fight back at this disease and another to give up.

2 opinions or more are very good. There are excellent doctors, and those who are ok. Be proactive for yourself!

I was diagnosed with stage 3a CKD last fall, and I had no risk factors other than being 70, unless covid and long covid in 2023 slapped my kidneys around. I have met a nephrologist once so far, but no info on why, just drink 8 glasses or more of water a day. I already do all the diet/hydration, exercise, trying not to stress, and other kidney friendly stuff. Does stage 3a come with a bit of fatigue or dry eyes? I don't have other symptoms other than I can't handle 60 mi bike rides anymore (maybe 30 with a few naps in between).

I guess what upsets me more than anything is having a doctor know about it but doesn’t tell you this stage 3b could of been avoided are our primary doctors so narrow minded they don’t care about kidney disease think it’s time to get them on board or our of the profession.

I have wondered many of the same things everyone is mentioning....don't they care? I am 67, stage 4, diagnosed in 2023 with stage 3b. I was fortunate to have a kidney specialist visit me in the hospital, that's when I was given the news. I am on 6 month schedules for blood work to see how I'm doing. I've changed my diet, watching the sodium, potassium, phosphates and protein. I take my meds strictly on schedule, bp meds, statins. I try to get my exercise and rest. Personally, most of the time I feel great. There is the itching, fatigue some days.

I mentioned the ....don't they care? question to someone that is a RN. She said, it isn't that they don't care, there just isn't much they can do to stop the decline from stage 2 down to 3b. I was fortunate to push for a nutritionist and got some good advice. It seems if careful nutrition is important at 3b and 4, then it might be important in the earlier stages to prevent someone from going to 3b and 4. The directives don't always seem consistent.

As someone pointed out, with high blood pressure, they tell you to reduce sodium. However, if you have low blood pressure, it seems like the obvious choice would be to increase sodium...that's not what they tell you. This is the kind of inconsistency I'm talking about. Yet, the medical world doesn't take the time to explain the process and clear up the messaging.

I know the focus in gov't health departments right now is on vaccines and meds. They are supposed to be looking at chronic disease in the country. I hope kidney disease gets some 'real sound' science investigating the causes and finding solutions.

@gwladj76 In my posts for several years, it has been said, and I'll continue to say it. Our bodies are miracle machines. It is a fine balancing act to keep all these organs working at their optimal use for us! And so many little things can make a difference. From medications, to diet, to exercise, etc.

In my experience, it has been quite a challenge to balance everything. Not only am I on daily dialysis, I am a blood cancer patient undergoing treatment. What works for me for a diet might not be the best for someone else. What medication combo might be indicated for someone may not be the right one for me. It behooves us to take a proactive role in our own health, and consistently look for what will be the best benefit for us as an individual. Listen to what others experience and go through. Apply it to ourselves as we can. We are indeed all a team!

It is my own personal opinion, as a non-medical person, that our doctors are too busy. That many also simply do not "connect the dots" and relate different concerns to kidney issues. That for many it is easier to ignore/downplay the importance of kidney health rather than step up and be active in that part of our healthcare. That's where we become our own advocate. Research, listen, ask questions.
Ginger