I have stage 3B CKD. I went to a nephrologist who laughed me out of his office, saying that I needn't be on a special diet and not to do anything about it.
So I would like to know if there are others out there with stage 3B or so, who do have a nephrologist.
I am on original Medicare in US, CKD 3b, and I do not have a nephrologist. Generally if cannot justify it, being on Medicare, cannot get referral until level 4, here in Florida.. Have tried to get referral with no success. I too am on a CKD diet. Thankfully my neurologist is monitoring my CKD.
I'm on original Medicare, US. I have a nephrologist. I'm 3A. With Original Medicare you do not need a referral to see a specialist. Now that's not to say that the specialist might require a referral to see him but that's a different story.
I'll add to that the doctors need to accept original Medicare.
I agree. Unfortunately many do not accept original Medicare.
I did contact a nephrologist to make appointment but required a referral and my Primary Doctor would not give me one. I live in FL.
I'm in Florida, have original Medicare, and have had a nephrologist since being diagnosed with CKD 3a. I did not need a referral and my current nephrologist did not require one. My current nephrologist is the second one I had. The first one did not require q referral nor did I need a referral to start seeing him. Are you sure you have original Medicare?
Yes am on Original Medicare with Medicare Part B Supplement. and been on it for 15 years.
Do you have a supplement to your Medicare? Just checking.
If you are in Central Florida, try to get an appointment at West Orange Nephrology in Winter Garden. I have only been seen by one doctor there so cant vouch for anybody but him. In the meantime, I've been strongly advised to avoid Advantage plans as they do not cover out of network providers if you are treated by them during major hospital stays. A friend who has an Advantage plan had a huge bill from an out network cardiac surgeon when he had to have heart surgery.
Best coverage according to a HR advisor at the hospital where I worked for many years is: Original Medicare plus a supplement, such as, the one offered by AARP or other similar plans. Good luck
Thanks for the info. I do have plan as you described. I have some important specialist who are not part of Advantage Plans. I live near Daytona Beach. We have had quite a summer this year and thankfully no major hurricane.
Your plan sounds good,but unfortunately, you're too far from Winter Garden. Yes, to the no hurricanes. There's still one brewing n the Atlantic, but no treat to Florida. You really do need a new GP.
Not all Dr. take Medicare, it's not required. Most do though. Many don't want to take the lesser reimbursement from Medicare. And many other Drs. don't take new Medicare patients but will keep on with an established patient when they age into Medicare.
I'm more surprised at a Neph. seeing a patient without a referral from a PCP. I've worked in several specialty practices at my local hospital and all the Dr. and NPs require a PCP referral so they aren't wasting them time on someone without a confirmed diagnoses.
Wow, that's interesting. I've been on original Medicare with BSBC Federal.as a supplement for a number of years. Throughout this time, I have never needed a referral for my dermatologist, a retinal specialist, two gastroenterologists, three nephrologists, two cardiologists, one endocrinologist, and a podiatrist. I've also had several primary doctors who all were more than willing to provide any referral requested. I dont know if I'm just lucky or just living in the right area. I'm very appreciative.
You are lucky and must live in an area with a lot of specialists who are happy to have more patients. Where I live in the SF Bay area all the Drs. are so full it takes months to get an appt. with a specialist and only by referral for most because they don't want to take time to see patients who don't really need to be seen and/or have diagnosed themselves playing google Dr. : )
I worked for a Cardiology Dept and we only saw people by referral. I have been on Medicare only with my SSDI since 1994. I need a referral for my Neph., my Hematologist, my Cardiologist, Rheumatologist and my Endocrinologist.
I didn't need a referral for Ophalmologist, Dermatologist, or Podiatrist.
I like straight Medicare because I don't have to worry about out of network referrals or anything else. My PCP gives me referrals, more than I want to tell the truth. I'm sick of so many appts. with specialists. I'm sure we all are in that boat.
That's so interesting I'm in the Orlando area now and was also in the North Central Florida area for many years and never needed a referral there either. I'm wondering if it has to do wirh my very good supplement which pays for anything that Medicare doesn't pay for. I may try to find out why this is so regional. BTW we really do not have a lot of specialists in the suburban areas surrounding Orlando. I have to travel for all my doctors appts. It was very difficult to find my second nephrologist. Best to you.
Around here it isn't about insurance. If you call for an appt. the first thing they ask is if you have been in before, and if not, then which Dr. referred you. If you don't have a referral you need to get one before being seen. My PCP knows that and just faxes a referral. Now you have to wait for the specialist's office to call you for an appt. They take all ins. I have Medicare and Medicaid (Medi-Cal here in CA). It's simply to avoid self-diagnosing patients. When I was working as a paramedic for the Cardiology practice we'd have been booked solid with people having anxiety related chest pain which does NOT need a cardiologist, instead of having time to see true cardiac patients needing help. That's the same logic many other specialists with full practices use. New Dr. who are still building their practice may not be so selective and accept all new patients and all insurances. I worked in the medical field for 19 years and it's always been that way and now it's that way with me being a patient and needing specialist.
You are very lucky to not need referrals, I doubt it's a matter of ins. though. : )
During my first visits with any of the specialists that I listed, I always presented as a "new" patient to them and had them evaluated my particular condition and not leave that to a primary doctor. Frankly, I don't want any primary doctor telling me that I do or don't have such a condition. I'm willing to listen to them, but I'm not willing to let them tell me I don't need a specialist. I got over this when my primary several years ago kept ignoring my lowering GFR and saying not to worry. But, eventually I did worry and referred myself to a kidney specialist who slowed the GFR progression and who continues to treat me. Now, mostly all PPO insurance plans tell you that you do not need a referral for any services. BTW, I'm retired from working about 35+ years at two teaching hospitals alongside any wonderful physicians so I'm fairly familiar with their habits. Best to you and sorry that the situation on the West Coast is so bothersome.
With COVID, my appointments were my social life!
I have never been on Original Medicare so I really don't know much about its benefits. Have you considered an Advantage or Supplemental Plan? I hear the Supplemental plans are really good but cost more monthly to enroll and drugs are on a separate plan. I have Medicare Advantage and I can see specialists without referrals as long as they are in the plan. Open enrollment ends on December 7. That being said your primary care doctor should really be more responsive with your concerns about CKD. Once you have it, it's a condition that is really difficult (or impossible) to reverse.
I have tried several times to get on Advantage plans but not successful, even talked to them? I am trying again. Was told need Advantage Plan with a SNP (Special Needs Plan). I am doing fine with my prescribed diet. My specialist also are not part of Advantage Plans, and that is a consideration. Am looking for a new PD as current one is not helpful for CKD at all.
Maybe you need a new primary care doctor and/or a different nephrologist.
I will be changing my original medigap to an Advantage Plan HMO, so likely will be able to get nephrologist.
I'm in Canada and it appears you have to be further along than stage 3 to get referral, so i am on my own.
Being on your own is not necessarily bad!
As I indicated in another reply to you a day or two ago, my mum's nephro has not helped at all. But mum has progressed well despite that. She's had me and my dad to support her instead with diet/wellbeing which are particularly important in CKD. No drugs (yet) for her.
Her nephro and urologist are delighted with her improvements in eGFR and serum creatinine and largely ignored urinary data. But her "A team" (me/dad) are at least working on it.
We are in UK.
I also am unable to get a referral in Canada. I have limited my protein to 50 - 70 grams per day. Three month monitoring is all my PCP will do until my ACR is > 3.0 currently 2.7. Diet change has improved my blood results.
Do you weigh your protein? I am trying to figure out portion control.
6.8 grams protein per kilo weightcalculator.net/protein-calc...
should be .68 g/kg for my measurements
I guess i can only eat 14 grams protein?.......I weigh 65 kg . I hope this is right. Thanks for the equation.
Hi, again, Starcatty,
I just happened to catch this part of the thread. You would probably die on only 14 grams of protein per day.
Usually a low (but survivable protein intake) is 0.6 grams of protein per KG of body weight, and normal is typically 0.8 grams of protein per KG of body weight.
If you weigh 65 KG, the low end if 0.6 * 65 or 39 grams or protein, and the normal end is 0.8 * 65 or 52 grams of protein. The more plant based protein it is, the healthier it will be for your kidneys. I would personally start with 39 grams of protein and see what your next set of labs look like, and then shoot for closer to 52 grams of protein.
According to Stopping Kidney Disease, what is also super-important is your Albumin score. The ideal score is 4.5. I eat much closer to the 0.6 grams of protein per KG, and my Albumin score is 4.5. In other words, most people (especially Americans) eat way too much protein and also the wrong kind of protein.
I hope you start reading Stopping Kidney Disease soon.
Hi Beckett, WELL, obviously it was a bad math day for moi!Of course you are right. I knew the number was wrong but my calculations were crazy.
Yes I have started Stopping kidney Disease.......quite the book and very revealing, indeed.
I will also get my albumin checked again. Thanks again for your very worthy responses!
Starcatty
😀
Hi, Starcatty. You're welcome. If Stopping Kidney Disease helps educate you and its plant based diet helps your CKD, please let others on this forum know about it. And, no, I'm not Lee Hull and I have nothing to do with his book or financial enterprises. I just think this book is literally a life save for people with CKD.
Yes I also get my blood work done every 3 months and will watch my diet.
I am also on Original Medicare and stage 3A and have a Nephrologist and dietitian.
Medicare is Federal. Any referral or test that is ordered by your PCP will be covered. Most specialty offices will not see a patient without a PCP referral. I used to work in a Cardiology Practice and patients tried to refer themselves daily. Without a fax or call from their PCP their will not be seen.
CKD is no laughing matter🥺 Find another doctor who will treat you with respect!! It’s not a good idea to wait until you lose all kidney function to go on diets.
I agree. I am on prescribed CKD diet and progression has slowed. Am looking for another Doctor.
WOW I am speechless but not surprised. They should be figuring out a cause!!
I’m on a Medicare advantage plan and I have a nephrologist and a renal dietitian. I would look for a new doctor. I’m 3B bordering on 4.
I have moved to 4 and started with a nephrologist at 3b. My experience was during 3b numerous symptoms started. (Restless leg, sleep pattern changes, neuropathy). These are all treated with drugs. This is also a time for progress to be monitored and prepare for stage 4.Best of luck to you.
In my opinion, doing something to improve efgr means not preparing for stage 4 because I will do as much as I can to not get there.
I'm in the UK and I crash landed to 8 in 2018 so do have a Nephrologist now GFR 27 so stage 4 and still under Nephrologist but no diet as it's down to a medical injury. I was advised no panic or diet and just eat healthily and avoid banana's, etc but otherwise just get the regular blood tests as no medication or diet can help. And wait and see. Obviously if diabetic or overweight then diet is more important but if otherwise healthy then don't worry.
What's medical injury got to do with no diet? If, for example, your urea is elevated you can reduce it by reducing the amount of protein you consume and so alleviate the further damage caused to kidneys and vascular system by elevated urea. Even water is a dietary intervention!
I think a diet is not always needed and perhaps you should ask an expert as my Nephrologist gave me this advice and my GFR has gone from 8 to 27 in three years which is good my intervention was to stop immediately the medication which caused my injury. So obviously my advice works for me. I'd add my weight is normal and I'm not diabetic and all my potassium etc is normal just my injury was down to a medication that is very commonly prescribed. I do not have any disease or cysts just they don't work as they did before Oct 2018.
How's your urea and proteinuria?
Within normal perimeters in the UK.
I think most people are in your situation....no medical injury.
I'm curious about the med that you stopped. I am on some meds. Perhaps you can let me know if you feel comfortable about it.
Sorry I'm unable to go into details.
You can google "renal toxic medications" for a list of meds that are hard on the kidneys.
This seems so wrong to me. I’m in the US and I see a nephrologist and I only gave stage 1 CKD. Mine is autoimmune so maybe that’s different?
Yes, many autoimmune diseases cause kidney, heart, lung and other organ damage. It is treated differently. As soon as a rheumatologist sees kidney involve they'll refer you. I wasn't seeing a Rheumy since I moved so my care fell through the cracks. I have Scleroderma. I went to Stage 4 before I was sent to a Neph. by my new PCP. I was put on Prednisone and will possibly be going on CellCept and my eGFR has increased so it's helping my inflammation from my autoimmune disease. It's different depending on the cause of CKD so it's important that people find out.
Everybody seems to have a different take on the value of a nephrologist and what if any areappropriate interventions, treatment for the various stages. I am in stage 3b last I knew. I have one pcp, two nephrologists and two dieticians. So needless to say each has a different personality and provides different thoughts. Clearly my ckd is directly related to type 2 diabetes, untreated for years, and htn, partially treated for years. pcp and one nephro sort of laugh at me for asking the question "will I need dialysis?" Nephro #1 said, no you won't need dialysis IF you 1. control your blood sugar and 2. control your htn. Well with the help of the free style libre I can now control my bs. My bp is another matter, I am on three hypertensive meds norvasc, valsartan, and metolprolol. BP running around 138/89. Seems high to me but my pcp seemed to lack concern. BP seems to vary a lot, probably stress related. My first nephro has seen me once face to face in 10 months, which I suspect might be typical. My second nephro, cleveland clinic was, is not covid phobic and has been willing to see me face to face. So obviously diet is crucial with diabetes and I suspect diet will also effect kidneys.
So general guidelines: get carbs down, protein not too high, but not too low either and fats are usually healthy unless you have cholesterol issues, which I do, so it seems every thing one eats has the potential to kill you. My egfr went from 60 to 48 over the last 9 months. Any other diabetics out there?
There is the very low protein option supplemented by keto acid analogues (basically protein without the urea waste element). You avoid malnourishment bit limit protein based issues
It means going plant based but I imagine carbs can be controlled depending on what plant food you eat. It might be worth checking out given the 60 - > 48 drop.
48 would be good to preserve..
I'm also a diabetic. My CKD is from the diabetes. This was confirmed by a biopsy a few weeks ago. Knowing that is a relief. I saw my nephro yesterday for the results of said biopsy. I have been retaining fluid since I was in hospital so he gave me a script for Lasix. He also said to keep protein around 60, potassium under 2000, low salt. My BP is high so we will get that under control and then maybe try Farxiga. I go back in 2 months.
I live in the United States and have had Medicare disability and my secondary is Tricare For Life. I don't need referrals and I have CKD. Stage 3. I have been seeing a nephrologist for years ever since I was diagnosed.
I am 3A, have been diagnosed since 2017, and been under the care of a nephrologist since the beginning. I fired my first one, and the one I have now also does not think I need to watch my diet, so I see her regularly and then do my own thing.
Better to have a nepbrologist that's behind what you do. And an RD to monitor you so as to have your back
If you can get them of course..
I am in similar situation and told the Doctor I would stay on my diet, but increase food intake on some foods.
Stage 3b myself and diagnosed at 3a.
As you'll see on here, it's not unusual to get a "do little or nothing" response from a nephrologist (although laughing you out of office is beyond the beyond)
You need a diagnosis for the cause your CKD because some causes can be medicated for so as to slow disease progression down. For example high blood pressure? Possibly a biopsy to detect cause and definitely a new nephrologist are in order. You might be spilling protein in your urine, in which case an ACE medication will be prescribed.
The current CKD treatment paradigm however, is pretty much hands off until you get to end stage. That paradigm has been usurped by the very latest guidelines from the US based, authoritative National Kidney Foundation (with input from other international bodies). These advocate dietary modification implemented at early stages of the disease (e.g. now) to slow or halt progression of the disease.
You'll read about it on this site as you delve in. Many have discovered this for themselves - the science indicating the benefits of a low protein plant based diet has been around for some time.
My own recommendation is that you buy a book called "Stopping Kidney Disease" by a chap called Lee Hull. It's a great first base book that will bring you up to speed on the kinds of areas you can impact on in controlling the progress of your disease. He is backed by lots of science, not least being on the same path as the NKF guidelines - even if he published earlier than them. You can get a sense of the book using Look Inside feature on Amazon.com. Whether you follow him completely or not, you will in all likelihood go a ways with his advice - so money well spent.
Welcome!
I am previously on stage 3b but now almost stage 2. He is right that no special diet in fact starting renal diet too early might not even help but in some hurt more. However this is the stage to think about the heart and not the kidney because it is still functional. However your heart might fail and most CKD patients die from heart failure. So do the heart heathy stuffs you still can eat everything but always good to eat less. Watch whatever is high on your lab maybe sodium potaßium etc drink enough water but not over have some exercise or just walk more again not over exercise, stop smoking if you do, avoid NSAIDs not only found in pain killers avoid over supplementation avoid illegal drugs, alcohol get some sun and try to de stress. CKD is not curable even with diet changes drug etc depending on your cause sometimes being vegetarian can help in the case of PKD or AKI but most of the time it does not restricting nutrients too early might cause other issues like Anemia or malnutrition both can lead to early death as well. So the best is to do everything in high moderation. Take care
I’m in the US, have a Medicare Advantage health plan, have been stage 3A/B for over 7 years, & have had a nephrologist the duration. I see my nephrologist every 6 months & have labs every 3 months. I’m shocked that there’s such a disparity over who can & can’t see a nephrologist! My doctors are at a teaching (university) medical facility & I feel I get very good care.
FIRE that "nephrologist", immediately. Many of the people here have read Lee Hull's book and yours is a perfect example of old-school medicine providing limited support until you are close to needing dialysis.
Your goal now is to slow the degradation of your kidneys & progression of CKD, and watch the health of your heart & blood pressure. And yes, this means a change in diet. At stage 3b, you might have started experiencing some of the effects of your kidney issues. Some of which, you might need medicine (ex. high blood pressure). But it's normally recommended to change your diet - based on your lab results. Good luck!!
Hi, Starcatty,
I see this question so often on HealthUnlocked that I saved my response in a file so I can copy and paste it. Your PCP should refer you to a phrenologist (which he did). He will know very little about nutrition (this is true in your case -- what a surprise), so you should ask him to refer you to a registered renal dietician (good luck finding one in your area).
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 yourself. Good luck.
Thanks Beckett....I will buy that book.
Seconded. It'll be the best few quid you'll spend on this matter. You'll amaze your friends and doctors!
Cronometer is a good app should you go the dietary route - you have to log what you eat to know what your various nutrional intakes are. It's free but to get decent reports (say, your average daily protein intake over a period - the only useful way to steer the ship) then there's a 30 quid or so a year subscription.
It's all a bit of a pain for a little while: figuring out what to eat and logging stuff. But it gets fast and routine quickly.
Is cronometer for kidney diets? Thanks for your concerns!
Cronometer is for any diet. It has a giant database for both naked food ingredients (cooked carrotts, boiled rice, steamed vegetables, etc. etc) and processed foods (e.g. Guinness!). It seems to be a global database too - I'm in Ireland and it has Irish food in there
You simply log what you eat and it calculates all the nutrients, vitamins, minerals for that day. You can create recipes made up of either fresh or processed foods (canned tomatoes for example) and store them. Then you just add the portion size of that recipe to your daily log.
Only thing is: for processed foods it typically only logs the nutrients that appears on the nutritional panel on the packet. So salt, fat, protein, energy etc get added to your day total , but not stuff like potassium, calcium, vitamins.
You get good oversight of essentials like energy / balance of energy intake via carbs, fat, protein (and alcohol) / protein,
And if you're not eating a lot of processed foods you can get a decent insight into wider nutrition.
Hi, Starcatty. You're welcome. Let us know what you think of it. You can skim or skip the included scientific case studies. The outline for the plant based diet plan is near the end of the book -- but don't skip ahead as the first part of the book will virtually make you an expert on CKD.
Hi Starcatty, I'm sorry you feel your CKD was not taken seriously.
I never saw a Nephrologist until I was Stage 4 when my PCP referring me because my eGFR had dropped a lot over 3 years and even more quickly in the 6 months previous to my referral.
There must be other nephrologists in your area if you don't click with that one. Ask your PCP for a referral to a dietician, the Nephrologist won't really take time from his appt. time to review diets for each patient. The Neph. is usually reviewing recent labs and dealing with medications and scans.
If he literally laughed and dismissed your concerns tell your PCP so they don't refer any more patients to that Neph.
I think it sounds like you'll get the information you need from a Dietician or Renal Dietician. They will make an exact meal plan for you depending on your blood work, protein levels, protein in urine, sodium, phosphates, and any other ailments you have like diabetes, hypertension, etc.
Did your PCP refer you to the Neph.? What is your eGRF and how long have you had CKD? Are you just becoming aware of it and trying to get info from the Neph?
My PCP told me my kidneys were fine when my eGRF was 30. I fired him, got a new PCP when my eGFR dropped into Stage 4 at 29 and he immediately sent me for a Scan of my kidneys which are small and to the Neph. I'm now being treated with Prednisone and my eGFR has improved. I requested to see a Dietician through my PCP. I have been a vegetarian since age 10 so need to increase my protein. I don't think it's the Neph's job to instruct you on diet, although I did tell mine that I'm a vegetarian and he said that's probably why I don't have protein in my urine.
A plant based diet is highly recommended for CKD. A Dietician will email you copies of your diet plan and recipes. Mine did anyway at the medical center where I go. They have a health librarian who is great with diet info.
Good luck. Try not to worry, it's not too late to change things around with diet and attitude.
To Sophiebun:
Thankyou for your informative and supportive response. I have Stage 3 B and my PCP referred me to a nephrologist and i wanted to ask the nephrologist for a dietician which would have been paid for by my medicare. But he refused. He deals with more serious cases. This also shows how our universal medicare is overwhelmed in Canada. So I found a dietitian and will be making an app't but will have to pay out of pocket.
I am also trying to be a vegetarian and have stopped meat a week ago. What kind of protein do you eat?
I think i am getting on the right track now. Thanks for your words.
You can eat soy products like the frozen faux meat products, legumes, whole grains, I like quinoa. Dark leafy vegetables have protein. You can buy nutritional yeast powder, you sprinkle it on food and it has a nutty flavor that I like. You can put it on anything or in anything. There are few foods with zero protein.
There are many renal diets on the web or books to buy on the topic.
Your PCP should be the one to refer you to the dietician. Mine did that before I ever saw the Neph. He also order the kidney ultra sound. Then I went to the Neph a month later and he reviewed the scan and the dietician's notes. My PCP saw that as preliminary things to do just prior to the Neph. appt. Along with recent lab tests of course.
Leave through Vegetarian Times at the checkout counter when you're at the super market. You can eat so much and it's so delicious, you won't miss meat unless you think of it as depriving yourself. The word "diet" seems negative to many people, so instead, think of it as eating your way to better health.
You shouldn't need more than one visit with the dietician. If you have diabetes or hypertension as the cause of your CKD, many hospitals have free classes on nutrition for patients. You could check into that as well and save some money.
Thanks again for your informative message. I am definitely going to research kidney meals and the dietitian will help me. My PCP can't refer me to a dietician....a nephrologist has to refer me and i can't see one, so i found one online. As long as i watch what i eat, things might be OK.
As Sophie says, you can drive this thing yourself largely and get an occasional steer from the dietician. You go vegetarian, for instance, your B12 and iron will go down and you may need to supplement.
You might find certain foods are limited for you (potassium for example) depending on your own disease characteristic but hopefully you'll have scope in your diet.
The latest guidelines might not be in your dieticians frame so do ask them about low and (especially very low) protein diets. Do they operate them and if not why not (given the guidelines say to implement at this stage)
If you have trouble there you can check out US based kidneyRD.com who are pushing in this new direction. Not cheap, but as I say, you can drive this thing mostly yourself with some practice.
I am on original Medicare, in the US, CKD 3A, and I do have a nephrologist. My primary saw that the efgr was going down and referred me. I live in Michigan. Both my nephrologist and my primary monitor my numbers. My nephrologist does not necessarily believe that I needed to modify my diet, but she cannot argue with my results. I did ask to be referred to a renal dietitian. I was referred to a diabetes dietitian, and at that point, 2 1/2 years ago, she admitted that I knew more about a renal diet than she did.
Yes, I am 70 and Stage 3A. They don't worry about us if we are older. Mostly likely die of something other than CKD, such as heart failure.
I’m so sorry you were treated like that . I haven’t been referred to a nephrologist stage 3b. Most Drs have lousy bed side manners .. just plain bad manners! It’s so hard to even see a Dr my pcp retired and the replacement it’s been 2 years I’ve never even met the guy! Just PA ‘s . I dk why they want us to wait until we need dialysis just some help might prevent needing dialysis. Hang in there
I am also stage 3B CKD. I don't have a nephrologist, but my internist is in constant contact with one to monitor any changes in my condition. I feel comfortable with this set up. However, to slow any deterioration in my kidneys, I purchased a renal cookbook and use an app to monitor my food and macronutrients (Cronometer - Android and iPhone). I know some specialists won't deal with anyone until stage 4 or later, but I don't agree personally with their view. If you can find a nephro, that's great. Until then, do some research and lots of reading. It can only help. Good luck.
I am on regular Medicare with a supplemental insurance and I did not need a referral to my neph, I was 3b when I made the first appt. The neph did not require a referral and I see her every 6 months. She does bloodwork and I had an ultrasound after my first visit. I live in Ohio. Good luck and I pray that you can get the care you need. I do agree with others that it really comes down to making our own changes and educating ourselves. My neph didn’t think I needed to change my diet but I did anyway. 🙏🏻
Most drs will/should tell you they have no training in nutrition. The plant based diet as as a ckd management strategy is still being researched but is quite promising. I do my own research & encourage you to, also.
My (ckd pt) husband eats a (modified) plant based, whole food, no oil or salt diet to help keep his kidney function stable. This & God have kept it stable.Unfortunately no one educated him about this option while he was at your stage.
Animal protein is much harder for the kidneys to filter and protein in Vegetables is much easier for the kidneys to process. Vegetables have innumerable antioxidants & phytonutrients that nourish & protect kidneys & the whole body. We also avoid nightshade veggies which can be inflammatory for some people . Legumes with a whole grain make a complete protein. Eating as many colors as you can, ensures good nutrition & better health.
Yes, it’s a sacrifice & extra work but not being on dialysis, or putting it off as long as possible, is so worth it! Wishing you great health!
Nephrologist Visit Today - Not Good
Should I go to a nephrologist?
Follow up on why the Nephrologist wants us to do a colon cleanse before placement of PD Catherter 
Spoke to nephrologist.
