Hello all! Looking for some advise please. My mom was recently diagnosed with stage 3a Kidney Disease and was told by her primary care doctor that he could manage it and would not give her a referral to see a nephrologist. While I realize 3a is not as serious as stage 4 or 5 I would feel more comfortable if she were being treated by a specialist to keep it from progressing any further. She also asked for a referral to a nutritionist which he also denied and gave her a link instead. Am I taking this too seriously or is he being too cavalier?
Thank you!
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Stargazer16
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I think a little of both. As far as the doctor is concerned CKD 3a isn't a big deal. Also, what country are you in? and what insurance does your mom have. That could be a reason he doesn't refer. If possible, can she get to a neph without a referral? Now as for you. It's never too soon to get serious about good health. Research, and then research some more. Also research your place that you are getting the info from. Make sure they are what they say they are. Mainly stay with the places that have a reputation for being correct. Make sure your mom is being tested regularly and learn what the labs tests are and what they show.
Thank you for this. What I find most concerning is that my mom had bloodwork done in July. She didnt find out about the CKD until a visiting nurse came by this month and asked to see her results. How can he be managing something that he didnt even tell her about? That is a huge red flag for me as I understand diet and lifestyle changes need to be made in order to keep CKD from advancing further. How could she have made these changes without knowing she had it in the first place? Also, I should mention that she is pre-diabetic, has HBP and high potassium.
I agree with jodaer on difficulty getting referrals to Nephrologist and/or dietitian. I was diagnosed at stage 3b and cannot get referrals until stage 4. I am on Medicare. . Fortunately my PD put me on a ckd diet based on blood work results for potassium, phosphorus and sodium. So far it is working for me. Possibly consider getting a new Primary Doctor.
I have Medicare Advantage Plan. But when diagnosed was on original Medicare and could not get referral> That was over 5 years ago. . Maybe depends on the State you are in.?
Good that you understand that nutrition & lifestyle are key to at least managing CKD. And that largely explains why medics can't/ won't help at stage 3 - so wrongly don't often inform. My mum also experienced this (dad discovered she was ckd via her online record!).
She has almost doubled her eGFR following a nephrectomy ~6y ago purely by adopting a Nutritional Therapy protocol. And weaned off a BP drug in the bargain!
If you want a link to qualified Nutritional Therapists, I'll send. Many operate here in UK but should consult online, some may be US based.
when i was diagnosed with 3b, 51/2 years ago my primary care doctor referred me to a nephrologist right away. it was caused by poorly controlled high blood pressure in addition to age. iwas 65 at that time. the nephrologist was able to prescribe the right meds to keep my bp under control and i progressed to 3a. she did not want to refer me to a nutritionalist or dietician in stage 3. so i just learned to eat based on my labs.her doctor should be dealing agressively with your mom's hbp, prediabetes and high potassium. doctors usually do not mention ckd to their patients until yhey are in stage 3. why is beyond me. i am just happy that we now have access to our records electronically so that we can find out this kind of thing first hand.my best to you and your mom.
No, I have original Medicare and always have. I had no problem seeing a neph when I wanted. I've been seeing one for over 5 years now. What you might have encountered is that the neph required a referral to see you. I have run into that a couple of times.
I started out as stage 3 when I was in the hospital for several weeks. My pcp did absolutely nothing, and only said to drink more water. I am 76 y/o male with no diabetes or hbp. I got disgusted with my pcp because of this and other red flags, one of which was losing 35 lbs without even trying. I am on Medicare, and simply asked my cardiologist if he could recommend a good nephrologist and internist. No referral, and I just called up after researching both of them. I should point out , I consulted a kidney nutritionist and my wife an I researched article and books on what foods and drinks are acceptable, and which aren’t. Presently, I am stage 4, and just holding my own. Good luck to both of you.
I was diagnosed at stage 3b by my PD and went to a Davita class which was helpful. I too am holding my own and stay on my prescribed CKD diet. Keep on doing what you are.
I am stage 3b. The decline can happen quickly. I was referred to a top specialist here in the U.S. because I demanded it. Many nephrologists just sit back and wait for the patient to end up on dialysis. Some forward thinking nephrologists actively fight to keep their patients off dialysis. I have a doctor who is a fighter. right now we are actively trying to get blood pressure down. The one thing that has helped me the most is a low sodium (1500mg. per day maximum), vegetarian diet. Hubby and I raise grass fed beef cattle so it was not an easy change for me, but am now loving it. Kidney doctor told me, milk, eggs, beans, nuts, were my sources of protein. I made the change and GFR went from 30 to 36 in two weeks. Creatinine levels really went down on new diet. It is worth trying. You need to find her the right nephrologist.
PS. My blood tested low for potassium, so doctor said I can eat potatoes, etc. I do watch potassium however, and avoid bananas, etc. The important thing is to get accurate blood work and base your diet around the blood work. For me vegetarian is working.
Hi Stargazer, I am quite recently diagnosed with stage 3a and live in Scotland. I was referred to a nephrologist by my GP, but it was because I had none of the risk factors eg diabetes or hypertension and she wanted his opinion. . To cut a long story short, he doesn’t need to see me again (well maybe not till a worse stage) . For now diet and exercise are Key as userotc shared. This site gives great dietary advice. The only other thing I would add, is that in Scotland we get an annual blood check and review by our GP. Wishing your mum well with her healthy kidney diet and 30mins exercise a day . X
I see this question so often on HealthUnlocked that I saved my response in a file so I can copy and paste it.
I was in your situation -- the phrenologist I went to told me nothing about nutrition; I did not know about registered renal dieticians at the time. I bought "Stopping Kidney Disease" from Amazon for $19.99. It came out in 2019 and is a tome on CKD -- it will tell you everything about CKD including a plant based diet plan to improve your eGFR. I went from 42 to 62, my wife went from 67 to 91... yes, 91 -- we did this within several months.
Other peeps have bought, read and tried "Stopping Kidney Disease" on this forum and have also had great results. Check out the Amazon customer reviews.
The best thing you can do is educate yourself and take care of your mom. Good luck.
Thanks for telling us aboaut the book. I looked it up, and there now what seems to be a follow up, have you seen it? Stopping Kidney Disease Basics 2022. I'm not sure which to get!
Dear Stargazer. Same for me at stage 3 My Dr also refuses a nephrologist referrel and nutritionist. She thinks that stage 3 isn't that serious. What to do
I guess all I can do is say "ditto".. Stage 3a with no diabetes or high BP - but a father who eventually had a kidney transplant. My GP tried to refer me to the hospital nephrologists, but they didn't want to see me. I made a private appointment with a nephrologist (that cost a small fortune), and he referred me again to the hospital so I would be a part of the public system and not have to pay. This time the hospital sent me an invitation for a check up with a nephrologist so they could assess my condition and decide whether or not to include me. I'm going on 18 December. However, I have been reading (and there is a lot of help here!) and have been trying to change my eating and exercise habits as well as drinking more water. My GFr went up from 50 to 58 and creatinine went down to 89 at the last testing (10 October). The nephrologist I saw also put me on a low dose of BP medicine for the kidneys' sake, so I've been taking BP medicine since 10 Oct. So all I can say is: do as advised above - drink water, exercise, eat healthy - lots of vegetables, no red meat (at least I don't do that) - but make sure it's balanced..
i must be one of the fortunate ones....i got a referral to a nephro ...but only after my primary at the time failed to catch the egfr numbers until i was way into 3b .the onei have now is doing what he can to hold this ship above water so i get ya.the chronic heart failure doesnt help the situation but it is what it is
i must be one of the fortunate ones....i got a referral to a nephro ...but only after my primary at the time failed to catch the egfr numbers until i was way into 3b .the onei have now is doing what he can to hold this ship above water so i get ya.the chronic heart failure doesnt help the situation but it is what it is
I am currently CKD Stage 3 and my doctor is controlling my problem well. I am hypothyroid, have gerd, high blood pressure, low sodium, osteoporosis and had epilepsy for 50 years. I take aspirin daily also. I trust my doctor after being under him for 5 years.
it is my personal opinion that those who have the dramatic improvement's referenced above are misdiagnosed as CKD but really are AKI. Here is what the research says:
CKD: Chronic Kidney Disease
Chronic kidney disease (CKD) is characterized by the gradual loss of kidney function over a period of months or years. CKD affects 1 of every 7 adults in the United States or roughly 37 million people. Of these, only 1 in 10 are aware that they have kidney disease.
Causes
Most cases of CKD are caused by three conditions that either directly or indirectly affect the internal structure of the kidneys:
High blood pressure (which can cause the hardening and narrowing of the blood vessels servicing the kidneys)
Diabetes (in which high blood sugar levels can progressively damage the filters of the kidneys, called glomeruli)
Glomerulonephritis (the inflammation of glomeruli caused by many different conditions, including bacterial infections like strep throat, viral diseases like hepatitis C, and autoimmune disorders like lupus or IgA nephropathy)
AKI:
Causes
The causes of AKI are many and differ by whether the problem occurs above the kidneys (prerenal AKI), in the kidneys (intrinsic AKI), or below the kidneys (postrenal AKI).4
Prerenal AKI is characterized by the reduced flow of blood to both kidneys. This may be due to an obstruction of a blood vessel servicing the kidneys or a steep drop in blood pressure (reducing the volume of blood reaching the kidneys). Causes of prerenal AKI include:
Heart attack (blocked blood flow to the heart muscle)
Heart failure (the heart does not pump enough blood for the body's needs)
Hypovolemia (the reduction of fluid volumes due to severe dehydration, blood loss, or burns)
Liver failure (which can indirectly impede blood flow to the kidneys)
Renal artery thrombosis (a blood clot in an artery servicing the kidneys)
Sepsis (the spread of a local infection throughout the body that can trigger a drop in blood pressure
Most Importantly:
While most cases of AKI can be reversed once the underlying condition is treated, some injuries can cause permanent damage that leads to chronic kidney disease and long-term kidney failure.
CKD is NON-REVERSIBLE…as such the biggest issue with CKD is the significant increase in the propensity of CVD death.
Finally: It is normal for your eGFR number to go down as you get older. Also, if you have chronic kidney disease (CKD), the damage that happens to your kidneys cannot be reversed. For these reasons, it is very unlikely that your eGFR number will ever go back up.
So, instead of focusing too much on your eGFR number, focus that energy on finding steps you can take to maximize your healthy habits and improve your kidney health. Taking steps now can help slow down or stop your CKD from getting worse (eGFR number going down).
So if you have CKD generally the eGFR will fluctuate some but not in the numbers referenced in the other posts…CKD does not improve BY DEFINITION CKD in fact worsens with age AND as such if diagnosed with CKD as you age eGFR deteriorates as a normal part of the aging process…just a clarification not an attempt to he a know it all…best of luck!
Hi, I'm 69 years old and just got my diagnosis 2 weeks ago. My PCP did not refuse to refer me to a nephrologist, but was really clear that until it gets worse or hits stage 4, he just wants me to eat low sodium (less than 1,500 mgs per day) and wait and see. I'm 3a also, a mild 3a but it's freaking me out. It's the first serious illness I've ever had. And mine was discovered basically by accident from regular bloodwork. My PCP also discouraged a nutritionist - I was going to go ahead and firmly request one, then realized I really do not need one. Does your mom have the Sodium Tracker app? It has helpled me feel more in control. I'm just being really careful, adding up the numbers every day, and am now beginning to relax and enjoy life again, after 2 weeks of anguish.
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