I’ve just been diagnosed with stage 3 CKD. GFR is 49 and I’m 67 years old. My primary care doctor referred me to a nephrologist who ordered additional bloodwork and an ultrasound which confirmed the diagnosis. I also have low bone density which I understand can be caused by kidney disease.
Had appointment with the nephrologist today and he was very dismissive of my questions and concerns. He gave me no dietary or other advice about how to maintain kidney function and basically said, it’s not a big deal and come back in six months.
I got the impression that I’m much less sick than most of his patients so he didn’t want to bother with me.
so, am I taking this too seriously? Is he correct that it’s nothing to be concerned about yet? The research I’ve done online seems to indicate that a number of changes should be made to stop the progression, but the only thing he told me was to eat less salt. When I asked about other dietary changes he said don’t worry about it.
I would love to hear some opinions on this because I don’t want to overact to this diagnosis but the nephrologist just seems to be dismissing it as no big deal.
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Kakamega
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Sadly, many doctors don’t get concerned until you’re near end stage CKD.
Chronic Kidney Disease (CKD) is a serious condition that can potentially progress over time. The severity of CKD is usually determined by the glomerular filtration rate (GFR) and the stage of the disease. Stage 3 CKD indicates that there is moderate kidney damage with a GFR between 30 and 59. While it's true that CKD can progress slowly, it's also important to take steps to manage and potentially slow down its progression.
The fact that you have been diagnosed with low bone density alongside CKD suggests that you may be experiencing complications related to your kidney function. Kidneys play a role in maintaining mineral balance, including calcium and phosphorus, which are essential for bone health. Therefore, it's crucial to address both your kidney health and bone health in your treatment plan.
Dietary and lifestyle changes can indeed play a significant role in managing CKD and preventing its progression. Some general recommendations often given for individuals with CKD include:
Healthy Eating: A balanced diet that includes whole grains, lean proteins, fruits, and vegetables can be beneficial. Your doctor or a registered dietitian can help tailor dietary recommendations to your specific needs.
Fluid Intake: Managing fluid intake might be important, as impaired kidney function can affect the body's ability to regulate fluid balance.
Sodium (Salt) Restriction: Reducing sodium intake can help manage blood pressure and fluid retention.
Phosphorus and Potassium Control: Depending on your lab results, you might need to watch your intake of foods high in phosphorus and potassium, as these minerals can accumulate when kidneys are not functioning optimally.
Medication Management: Your doctor may prescribe medications to manage conditions like high blood pressure and help preserve kidney function.
Bone Health: Adequate calcium and vitamin D intake, along with weight-bearing exercises, can help improve bone health.
Regular Monitoring: Regular follow-up appointments and monitoring of your kidney function are important to track any changes and adjust your treatment plan accordingly.
Given that you have concerns and that you've already noticed a lack of clarity from your current nephrologist, seeking a second opinion might be a good idea. A nephrologist who is willing to listen to your concerns, provide clear guidance on managing your condition, and address your questions can make a significant difference in how you manage your health.
Remember, it's important to work closely with medical professionals who can provide personalized advice based on your medical history, test results, and overall health.
Sorry your neph is a jerk. My neph is compassionate and listens to me, but she doesn't give me diet advice either. Win32 summarizes most of what I've learned (on my own) after 3 years with CKD. I would just add that no protein in your urine seems to offer a better prognosis than having protein in your urine. It would be nice to know what caused kidney damage, but a lot of us don't. There are drugs that can damage your kidneys, like tylenol, and there's high BP, also Covid, apparently. I changed my diet and lost weight (slowly) in the years after my diagnosis, and feel much healthier that I did. Know that eGFR is an estimate based on creatinine (and age), and that creatinine can very by a bit depending on hydration, protein intake and exercise (that's one reason eGFR goes up a bit when you go vegan). So don't worry if your eGFR varies by a few points from test to test.
WinJ3 gve you the best answers. I would find a different Nephrologist right now. There is so much you can do to slow the decline and many doctors can't be bothered to instruct. Why, I do not know other than it is not billable.
Finding the dietician is the best first start. If not, there is a ton of information on CKD diets.
Educate yourself on what lab results mean. CKD is more than just GFR.
I really appreciate the responses. My plan for now is to follow the diet and exercise recommendations that I can find online, and in about 3 months contact a new nephrologist for follow up. Thanks again!
Right! Go to the Fresenius and Davita websites for diet and other info. Take care of yourself and be your own advocate. Like Bassetmommer suggested, get a copy of your labs and look up each of the results, especially the ones out of range. Do you know if you did a urine test? That will tell a lot also.
Wegeners has good advice. Please don't go on a renal diet without checking your labs and seeking advice from a medical professional. The renal diet manipulates your electrolytes (sodium, calcium, magnesium, iron, etc.) Electrolytes are needed for proper heart, brain , liver, blood, bone function, and more. Driving them below normal range can have negative consequences, sometimes severe. None of us here can really instruct or diagnose since we're not health professionals here. So, please keep your labs in mind if you're interested in modifying your diet and find someone who can follow your progress regularly with blood tests. If your labs are normal, your diet is probably fine.
Hi, thanks for the word of caution. It’s a good reminder that I don’t want to try to change everything at once! I have started by reducing sodium and will be looking for a new nephro who can give me more guidance on the overall changes that need to be made based on the lab results.
Unless your labs show high sodium levels, you may not want to do that. I suddenly passed out when I inadvertently lowered my sodium. I was being supportive to my hubby (Stage lV), taking sodium out of meals as his nephrologist requested and I assumed this was a wonderful benefit for my health too. My primary was very unhappy with me. Once you start manipulating electrolytes, you'll want to get regular blood draws to ensure that things stay in the normal range. If you can't find a nephrologist, a primary will be happy to help you with this.
I really can't add much as Bassetmommer and WinJ3 pretty much covered all the bases. I would suggest getting to know food rather than take advice of a nutritionist, although that is a great way to start. Eating healthy and exercising is the most important and research.
If you're feeling overwhelmed with nutrition for at least managing CKD, you could try a Nutritional Therapist to guide you. My mum has followed a NT protocol for ~6y and almost doubled her eGFR.Medics incl nephros have no training or qualifications in nutrition which likely explains the dismissive response you've had.
You need to find a new nephologist. With diet, you'll find all kinds of online diet advice BUT remember, you have to diet to YOUR labs and YOUR medical problems. Not all recipes you will find will suit your condition. Earlier posts did a very good job offering Information and sharing experiences.
The first suggestion change nephrologist. Second you need to know which is your underlying cause. Third there are uge things you can do to delay or why not avoid. Start acting in good mood and never give up. Rgs
Follow your labs is the best advice. I went on my patient portal and did a Y/y chart of the most important results with regards to kidneys. Then I put in a column for nephrologist results. I take to every appt and I can see where my CKD started and how it has progressed or in some cases gotten better. I obviously takes lab results,and a graph with one month’s worth of BP measurements I don’t get out of the share until my questions are answered
I was diagnosed about 3 years ago-stage 3 and I'm 72 now. I'm sorry your doctor was dismissive of your concerns. It's a scary diagnosis to receive (I got mine in an impersonal email from my doctor) and treating it as a bother is horrible. The advice you're getting here is great. I would just add to do lots of reading/research on your own. This site is helpful because the people here are knowledgeable and kind. Another site I suggest you check out is Renal Support Network. Learn to read your labs. I found a great resource to help decipher the lab tests at The Kidney School - kidneyschool.org/mods/. You will feel frustrated and depressed some days, but if you stay proactive, and find support (in person or online) those bouts may not occur often. Take care, my friend.
sometimes your neph may not want to burden you with all the info, but should be willing to andwer your questions.
when I was first diagmosed all I had to do was cut down on sodium, cut out alcohol and dark soda, no NSAIDS, and exercise regularly. Also take my bp med.
Restrictions on phosphorus, potassium, and more meds came later. But everyone is different.
My Nephrologist is very unhelpful too but I believe it's because the primary thing that can help us (diet) is not their specialty. I have concluded based on my experience that there is not too much else they can do except monitor the situation and order blood tests and appropriate prescriptions when warranted (For me it's Calcitriol). The person who could help with diet would be a registered dietician. Also I would recommend that you find yourself an endocrinologist with a specialty in osteoporosis because there is a connection between CKD and bone loss. Lastly, did your Nephrologist order a parathyroid test - there is a connection between elevated PTH and kidney disease.
Hi, I agree. I have food allergies besides the stage 3 kidney disease Only my allergist understands my unpleasant reactions to foods, while general Dr's have no education about diet and nutrition, mine intimates that I'm too fussy.
Most nephrologists learn nothing about nutritional therapy in school. The diet backed by scientific studies is going all veg. Since most people can't sustain that they just focus on sodium, potassium and phosphorus. Dr. Just aren't taught the nutrition stuff yet. Maybe younger doctors will be. Clinical practice is 10 to 20 years behind research.
Sorry to hear about this rude treatment. My Dr won't even referre me to a nephrologist. She sounds as dismissive of my stage three kidney disease also. I'm above 75 in age. Is this why we are treated this way? I often wonderI feel bad for you
I hope you feel better. It's not you overreacting, it's this dismissive dr.
i have a similar story to you. I went to see the consultant and like you he is not actually see me again,(can’t say for ever of course) he was excellent though I have to say. I had already read loads from this group so must have sounded like I knew quite a lot. He has referred me back to my GP for annual reviews. My GP prescribed Ace inhibitors which he said he would have suggested. I have not got hypertension or diabetes but ACE’s are still seen to protect your heart etc regardless. So for now Kakamega I am trying to eat healthy, lose weight and exercise by walking as best I can. Initially I was very wortied but nearly 3 months in, I am quite calm’ish haha! Hope this helps and I wish you well. X
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