Is kidney disease becoming an epidemic

Posted by codered032 @codered032, Jan 24, 2023

It appears that lately I have met quite a few people recently diagnosed with kidney disease. Many at stage 3a and above when diagnosed. Many people like myself are surprised by the diagnosis. Is CKD becoming an epidemic?

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@sharonfranks1119

Thank you so much for your reply. I was informed I was a stone maker to you are in CKD stage 3a. Why wasn’t I informed sooner, like stage 1. I could have radically changed my diet and perhaps not advanced. Next week I have my 4th kidney stone removal surgery in 18 months, and there will be more.
I agree that some doctors don’t like patients that are well informed and advocate for themselves.

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@sharonfranks1119 Welcome to Mayo Clinic Connect, in case I hadn't had the opportunity to do that before now.

My father was prone to kidney stones. My older sister had had them a couple of times solved with lithotripsy, and I had one back in the 80s, that passed. I was working for a small animal veterinarian, and we put myself on the x-ray table and took a picture. Bet that wouldn't happen today!!

You'll read in the article I linked here, that stones can be of three types. It is important to understand what kind you are prone to, to get the best treatment plan for you. Beyond diet, genetics can play a part in the whole scheme of things. Has your medical team told you what type of stones your body is producing?

As for being educated in our own health concerns, it has been a relief to some of my doctors that I played dot-to-dot and tied things together. I don't expect them to know me better than myself. Those that have a negative response to me being my own advocate, well, I replace them with someone who is fine with that. My medical team now consists of my primary care, nephrologist, hematology oncologist, dentist, and dermatologist. In the wings are the urologist, orthopedic specialist and neurosurgeon.

https://www.mayoclinic.org/diseases-conditions/kidney-stones/symptoms-causes/syc-20355755
Ginger

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my experience is that you are not told until you are in stage 3.You cant help but wonder what happened to stage 1 and 2.There may be no cure but you could certainly start working on it sooner.Therefore if ckd doesnt kill you the depression will.

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@cduke

my experience is that you are not told until you are in stage 3.You cant help but wonder what happened to stage 1 and 2.There may be no cure but you could certainly start working on it sooner.Therefore if ckd doesnt kill you the depression will.

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@cduke My experience was slightly different. Another doc had ordered an MRI or CAT scan with dye. I had to wait several hours for the test because my eGFR was lower and in Stage 1 or 2. The contrast of dye affects the kidney if not normal. Consequently, after that, my eGFR was tested by my PCP regularly.

In many cases, CKD can be the result of high blood pressure or diabetic problems, and a good PCP usually includes an eGFR in his/her lab work for you at that time. There may be no cure in many instances, but the opportunity to stabilize even at Stages 3 or 4 is a strong possibility. That's why Mayo Connect and your team of docs are vital.

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@cduke

my experience is that you are not told until you are in stage 3.You cant help but wonder what happened to stage 1 and 2.There may be no cure but you could certainly start working on it sooner.Therefore if ckd doesnt kill you the depression will.

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I'm in Stage 3a (maybe in 3b after my labwork from today comes in). I've been asking for years about my kidney lab results and all I've ever gotten is "drink more water - you must be dehydrated". 🙁

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@cduke Not sure if you are working with PCP, nephrologist, or both. Something seems amiss when your doc doesn't wish to discuss fully your concerns. At Stage 3, nevertheless, it is a time to be proactive and move on to someone else for your direct question(s) if not answered suitably. Water is just one component of kidney health, so having a dietitian, a nephrologist, a PCP, and other significant docs help you on a minimal stress free journey will make all the difference for you. The object here is stabilization or improvement of your kidney health. Time is not on your side when direct questions are not answered. How much water should I drink daily; what are my eGFR trends; what foods should I eat and which are not good for me; what are my sodium, potassium, phosphorus intakes; and how often can I see you for lab results; all are a start. I am sure there will be others in this group that can also help you maintain your dignity of good proper kidney health going forward.

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@collegeprof

@codered032 Excellent question posed. The operative word, perhaps, is not that it will be becoming, but that it already is an epidemic. The turnover in nephrologists and their PAs and NPs, from my experience only, is tremendously high. They are under a lot of pressure during the day treating those in Stage 4 to dialysis, and commonly work at night as well. If you are lucky, you may see a practioner every six months or so if you are stage 3 or earlier. Last year, I had a great nephrologist quit, and he was in his early 40s. Two years prior, another left to go into senior management at a local hospital. Stages 3 and earlier are vulnerable because frequently they are forced to make 6 month or longer appointments as there are so many in dialysis and Stage 4. The key to all of this is to have a team of docs to help support these kidney docs by having a dietitian. a PCP, and others to make sure blood work is done frequently to establish your eGFR trend. The Kidney patient today, in my opinion, must be proactive and become knowledgeable quickly.

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I’m at such a loss with the subject of CKD and getting help for it. I don’t understand why I keep making stones, I follow a CKD diet yet I just had my 4th surgery for stone removal this week on left kidney. Ultrasound shows new stones in right kidney too large to pass, and I just had stone removal surgery on right kidney in December. What are others doing to keep from constant stone making?
And in regards to the epidemic, I was just diagnosed with CKD stage 3a. Any ideas welcomed. Thank you.

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@dks

I'm in Stage 3a (maybe in 3b after my labwork from today comes in). I've been asking for years about my kidney lab results and all I've ever gotten is "drink more water - you must be dehydrated". 🙁

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I am ckd 3a, after kidney cancer, cc carcinoma. Radical robotic nephrectomy was Feb. 2022. I was finally told, to only drink when you are thirsty. Never set the amount you should drink daily, like a NP told me to do initially. I learned to ask the nephrologist my questions, not a nurse.

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@sharonfranks1119

I’m at such a loss with the subject of CKD and getting help for it. I don’t understand why I keep making stones, I follow a CKD diet yet I just had my 4th surgery for stone removal this week on left kidney. Ultrasound shows new stones in right kidney too large to pass, and I just had stone removal surgery on right kidney in December. What are others doing to keep from constant stone making?
And in regards to the epidemic, I was just diagnosed with CKD stage 3a. Any ideas welcomed. Thank you.

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@sharonfranks1119 Do you know what type of stones your system is producing? There are different types, and while diet may have a part, so can genetic factors. It certainly is worth your while to question your medical team to find out, so you can be more educated on what to do for your particular case.

You see here we share many experiences. As @collegeprof and many others, including myself, will usually say, diet, hydration, exercise, lifestyle, and gathering knowledge go a long way to staying on top of our kidney disease. First, figuring out why you have it is a great foundation for knowledge to follow. Diabetes? High blood pressure? Those are the two main causes, it appears. Genetics? Long term use of certain medications? Lifestyle choices? Addressing the root cause and proceeding from there seems to work best. Remember each of us is different, and what is best for one may not work for you, but you certainly have an insight to ideas to try. If you do not feel your concerns are being addressed adequately by your medical team, ask them why, and if need be, change your doctors. I have done this in the past, and it made all the difference.

https://www.mayoclinic.org/diseases-conditions/kidney-stones/symptoms-causes/syc-20355755
Ginger

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My Nephrologist wants me to take a kidney biopsy since he has no clue what caused my CKD at stage 3b. Can any one give me some experience to what is like afterward and the time it takes to recuperate as I am 77 years old. I have to stay overnight at the hospital. I need to get help at home? Thank you for any feedback!
Susie

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@poon

My Nephrologist wants me to take a kidney biopsy since he has no clue what caused my CKD at stage 3b. Can any one give me some experience to what is like afterward and the time it takes to recuperate as I am 77 years old. I have to stay overnight at the hospital. I need to get help at home? Thank you for any feedback!
Susie

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I think it depends on your current health status. I was 69yo when I had my renal biopsy. I was active and in good health. No chronic medical condition. During my annual physical I had very high proteinuria and moderate edema in my lower extremities. I was referred to nephrology and a renal biopsy was scheduled. I drove my self to the hospital and after my biopsy I drove myself home. Having never felt ill, except for mild fatigue, I never changed my daily routine. My nephrologist nor did anyone else explained after care. I experienced mild throbbing renal discomfort but didn’t require any medication. Sadly I learned my provider was not the best at educating me about the procedure nor about my diagnosis of MCD. I have learned more about my diagnosis from this group and doing my own research. I strongly recommend becoming your own best advocate. I follow Mayo Clinic Connect and NephCure for current treatment trends. God bless

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