While I am very new to this forum, I am SO glad that I found you people!! It gives me hope to see the success stories, and it also makes me realize how disinterested the medical community is in truly helping CKD patients, until the disease is too far advanced, and dialysis is required.
Why are nephrologists so un-proactive when it comes to trying to prevent the progression. Seems to me, that a lot of people have stopped, and actually improved their numbers with a renal diet. I understand from one comment, that nephrologists generally don't buy into the renal diet, as there isn't enough data to back it up. Seems to me, that at the very least, offering the renal diet as a choice to slow the progression is an option I would have loved to have had at the beginning of my diagnoses.
With that long winded diatribe out of the way, I have a couple interesting questions... if a nephrologist was diagnosed with CKD, what do you think their approach would be? Would they wait until they were stage 4 to address it? If they were at the stage I am, gfr 39, creatinine 1.93, would they be limiting their protein, potassium, and phosphorous intake, or would they say to themselves, I won't worry about it until I reach stage 4 (which was my doctors response, along with "Just eat healthy")? It would be interesting to know that scenario.
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Whitetail66
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It's not just the doctors. It's also the health insurance giants. That's an issue for another day, however, you are right about many nephrologists, but luckily not all.
You know what to do. Stay focused and at your next appointment with each doctor you see, make sure they'll work with you according to your wishes. If yes, then that's terrific. If not, check out healthgrades.com and find a doctor who will.
Trust me, I will. Great advice! I talked to my PCP's nurse for about twenty minutes yesterday, trying to convince her why I wasn't satisfied with the first nephrologist, and that I insisted on being referred to a different nephrologist who would refer my to a RD. She tried to explain to me that people usually don't see a RD until stage 4 or 5, to which I replied - 'I don't care, I'm trying to be proactive and not get to stage 4.' I then asked her if she would drive her car with a tire that was half flat, and wait until it was completely flat to put air in it, or put air in it right away. I got a call from a different nurse later in the day, saying that my PCP put in the referral, and ordered a renal blood panel and urinalysis so I would have it for the new doctor. I asked her if anyone had written 'difficult' on my chart yet (a little Seinfeld reference), to which she laughed (but didn't say no).
Excellent handling of the situation. I was once interviewed on the phone by an office person at the physician's office before they would take me on as a patient. I agreed, if we could trade questions, so I could determine if they would be a good fit for me. It worked great until I asked my second question. Then she said, "I don't think this will work.". I agreed.
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That's great. That office saved you a lot of time and trouble. That would be a doctor nobody wants.
Mr. Kidney, thank you so much for the link to healthgrades.com!
My current neph. is on "probation" after 2 visits: no diet. referral; "eat more food" for wt loss; and seeming disinterest. 2 other docs listed and starred at same site and of 22 listed, mine isn't even on the list...not a mental giant but methinks I'm getting a "time to move on vibe". Sincerest thanks to all here for your great posts and links; they are making a real diff. in my quality of life with CKD.
My first nephrologist was extremely focused on first trying to improve my renal function and second trying to stabilize it. As my renal function plummeted into renal failure (suddenly) he spent a tremendous amount of time providing patient education. I still have vivid memories of him sending me articles showing me that most nephrologists would choose PD dialysis for themselves. He actually told me that he would choose PD dialysis for himself with the expectation that it would allow him to continue working and participating in distance cycling.
My current nephrologist is equally proactive. The nurse practitioner in my current practice is similarly very patient-centered. These people listen to me. And, just like my first nephrologist, they know how to work within the medical insurance maze to provide effective, patient-centered care.
There are good medical people out there. I find that when I find one good physician that doctor tends to refer me to other good physicians. So it’s a matter of finding a good primary care physician and a good nephrologist. Then do everything you can to help them work together to provide your care.
I have to disagree with your Nephrologist. I am stage 3 just a tiny smidge more to go to get to stage 2 and I am determined I can. I was not referred to a RD either, and my Nephrologist has said to me I don't know what you're doing but it is working. I told him renal diet and he looked at me like I was crazy. Now you do have to be careful if you are doing it alone. You can totally deprive yourself of what your body needs if you limit your intake too much. This is true of medications as well. I don't take anything without researching it and if it is nephrotoxic they have to come up with something else, or another plan. OTC drugs are nephrotoxic as well. I limit my meat based protein, and use plant protein instead. You can find out how much you should be getting by looking up the formula. There are books on the predialysis diet, I would recommend reading a couple of them. Watch your salt that is probably one of the best things you can do. I try for 2G sodium per day, which is hard, but onec eyou do it salt will taste disgusting to you.
My nephrologist did tell me I could get function back, just that I would never get to stage one. I would be ecstatic with just improving my numbers to get me far away from stage 4. I don't take OTC drugs, and am just on BP meds. Since I have joined this forum a week ago, I have drastically altered my diet, especially where sodium is concerned. My BP has definitely benefitted from it already. I'm hoping my new nephrologist will be as willing to refer me to a RD as Mr. Kidney's doctor was for him. But I will still research on my own, probably the rest of my life.
It definitely seems to me like they don't really care if you wind up on dialysis; it's all the same to them. They get paid either way. They don't seem to get emotionally involved with their patients. Too bad we don't pay doctors based on outcome. I was never given nutritional advice other than very general information. I wound up in stage 5 and I believe it was preventable if we had acted quicker. Nephrologists tend to tell you nothing can be done about kidney disease and it's just a slow one-way path to the dialysis chair. In retrospect, there were things I could have done differently, but hindsight is always 20-20 and I would have hoped at least the nephrologists would have been more aggressive about stoping the decline of the kidneys. For instance, when my creatinine increased from 1.7 to 2.6 since my last annual visit, the nephrologist suggested doing a kidney biopsy but said it would NOT change our treatment at all, so I declined. (At this stage, why didn't the nephrologist insist seeing me more frequently? )A year later when I was stage 5 (creatinine 4.3), I was told a kidney biopsy was pointless and I should just go get on dialysis. When I told my nephrologist that there are people who have gotten off dialysis by following a strict vegan diet, he said it wouldn't help my type of kidney disease. When I suggested stem cell treatments, he said that if they worked, health insurance companies would be paying for them since dialysis is so expensive, and health insurance companies hate paying for dialysis, so therefore they must not be effective. Just go get on dialysis...
Dialysis is expensive so somebody is making some money from it. Kind of like a cash cow. It really says something when docs are not interested in slowing the progression. I wonder why?!?!
Perhaps we need a class action lawsuit against nephrologists who do not provide advice that will be beneficial to our kidneys? Guess it would be hard to prove. Our best action is to keep doing what we know is best and to walk our kidneys away from those who are not helpful.
I was going to suggest they exact same thing in one of the previous threads. Sometimes hitting them in the pocketbook is all that gets their attention.
Forgot to add, I have long said that I would like to find a nephrologist with kidney disease. However, I think some are so stuck in their thinking that it would make no difference with them.
I know this may sound petty however it is IMPORTANT. When speaking about diets please specify CKD diet -- for those with chronic kidney disease stage 1-4 or renal diet for those in stage 5 or dialysis. They can be significantly different especially in regards to protein.
I have received zero diet information from my doctor. I have so many questions, like what is the difference between a CKD diet, and a renal diet? If the renal diet is good for end stage CKD, then why wouldn't it be good for stage 2-4?
CKD diet generally limits protein and more plant based diet. It can have limits on potassium, phosphorus, sodium as well for some. Fluid intake is normal.
Renal diet differs in that higher protein is necessary as dialysis removes protein. There are daily limits (which differ individually) of potassium, sodium, phosphorus and fluid intake.
My husband and I retired to Portugal from the US almost 10 years ago . I went to my Dr here in Portugal 3 years after we moved here as I had a terrible backache . In the US my Dr would tell me to take the muscle relaxers he prescribed and all would be well. My Dr here in Portugal, sat down and really listened to me. The first thing he told me was he was sending me for an MRI and from what he was able to see I had a tumor on my right kidney and it may be cancer. The results came back that it was cancer, so within 5 days they sent their Dream team of Oncology Surgeons from Lisbon to my brand new Private Hospital Paticular 4 of the best surgeons in the country. The surgery went very well, I had the best Drs, a very nice private room, the nurses and Drs spoke English and kept me in the hospital for 4-5 nights, I can't remember just now. In one week I met with some of the Drs and they told me I was a very lucky woman.that The tumor was cancer, but they got it out so fast that it had not even reached my blood system. I did not need any after surgery treatment Chemo, or radiation. I was a young 70 year old at the time. I had no idea that I had anything more than a back ache, which went away after my first appointment and within the 5 days from when they told me and did the surgery.I believe it was my Mother that had passed telling me to go to the Dr.
That surgery has been almost 5 years now and my Nephrologist is a wonderful Dr and is very encouraging and had me see a nutritionist that took a sample of my hair and sent it Germany through her pocket sized hand held device like a cell phone and 10 days later I went to see her and she went through the list of things that according to my hair sample they could detect everything that MY body required to have healthy Kidney eating habits . It is my own info just for me. It told me what minerials I was lacking, (Not much, ) and a 15 page typed in English report.My Dr has told me that my readings will go up and down. They have only gone down 0ne time and I have gone up 29 to 45. The biggest jump to a better higher number was when I cut way back on red meat . I only eat red meat maybe once a week and not a large amount. I am not to have potassium, phosphorus or salt. Eating a plant based diet is best, I eat a Medeterian diet since I live in Portugal.
By the way living in Portugal our private insurance that you must buy before you are 70 years old has gone up very little as we get older and both my husband and I this year pay $1,000. ONCE a year and my opperation for everythin only cost me $400. My husband had knee replacemen and stayed in the hospital for 6 days so that he could work with a very good Physical theripist. He paid $ 365. His knee surgery went very well. With the insurance we have we are covered anywhere at any private hospital we choose in Europe and 2 months in the US. We have Alianz insurance here in PORTUGAL. Keep Positive, that is very important, and if you need to change Drs, do it. It could save your life. All my very best, Jan
Janemery, Outstanding that you receive such excellent care in Portugal and at such a reduced cost! Thank you for sharing your life saving experience and continued great medical care.
Dealing with CKD is challenge enough but in the U.S. for some of us, finding a proactive medical team can be even trickier but so crucial.
I forgot to say that my Nephrologist sees me every three months and every time with a current complete blood work up that cost us 1 euro about $1.13. I always think that is so great and funny. Can you imagine? sometimes less. The other day I had an exray and it cost 1 euro.
I am amazed that there are so many of you with horrible nephrologist. I have had 4 different nephrologist since 1996 when I hit stage 4 and all were concerned with keeping me OFF dialysis. Recently started VA health care and that prompted a new referral to a different nephrologist. My numbers were as bad as they had ever been, eGFR in stage 5 level at 13 and creatinine at 3.9. The new nephrologist and my VA doc both worked to ensure I improved those numbers and now I am at eGFR 18-22 creatinine 2.8-3.
My recommendation is to change nephrologist until you find a competent one.
Once again KidneyCoach has tremendous points to share. For the most part the renal diet is standardized. NKF has the following clinical guidelines:
KDOQI Clinical Practice Guideline for Nutrition in CKD: 2020 Update
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