Diet & CKD: Good morning, I was wondering if... - Kidney Disease

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Diet & CKD

Hello67 profile image
68 Replies

Good morning, I was wondering if anyone else has had this experience? I told my neph that I was limiting protein, sodium and foods bad for the kidneys. She said that limiting protein etc is old school and instructed me not to add salt to any food. I am at a stage 3b. I have been reading posts on this site and articles about vegetarian and vegan eating and am impressed that it helps. I am curious if anyone else has had a neph tell them what mine told me.

Also, is lisinopril good for kidneys or can it reduce kidney function?

Thank you so much. I do appreciate all of you. Have a blessed day. 😊

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Hello67
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Bassetmommer profile image
BassetmommerNKF Ambassador

Hello,

Strange. I would question them further. I would also see if you can find a renal dietician. Lower protein has proven it helps impaired kidney function. The thing with salt is old school for sure. I hate to argue against a doctor, but in this case, I would ask for further explanation. Also....are they connected to a dialysis center? I know that is cynical, but often dollars speak.

Hello67 profile image
Hello67 in reply to Bassetmommer

Great question. They are part of a dialysis center. I never thought of that! Maybe that’s why she’s taking a wait & watch approach. I don’t have a renal dietician. I don’t think medicare will pay for it until a stage 4 but I’m not sure about that. I am on a low protein diet tho and am doing my own research now & posts & links on here have helped a lot. Thank you, Bassetmommer.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Hello67

Medicare may not pay for it but it is well worth the investment to see one anyways.

orangecity41 profile image
orangecity41NKF Ambassador in reply to Hello67

Maybe check Medicare web site as have been changes.

Hello67 profile image
Hello67 in reply to orangecity41

Thank you, orangecity41, I did check and found out medicare does cover renal dietician. God bless

WinJ3 profile image
WinJ3

Medicare paid for mine. Medicare will pay for three hours during the first year and two hours in each subsequent year. You must have a diagnosis for CKD or diabetes. One visit was plenty of time for my renal dietician to look over my situation and give recommendations for my diet.

For instance: I am stage 3a and the recommendations was 55-70g of protein per day, no more than 2000 mg per sodium and keep calorie intake around 1500-1700 for weight loss.

Hello67 profile image
Hello67 in reply to WinJ3

Thank you, WinJ3. I will find a renal dietician and get guidance. My ckd should qualify me. I wish you the best in your journey. Thank you to everyone for your help & guidance.

orangecity41 profile image
orangecity41NKF Ambassador in reply to WinJ3

Great you got your renal dietitian appointment. The diet my GP gave me is the same except restricted on potassium (2000-3000mg) I was diagnosed at stage 3b. The diet is working for me.

Hello67 profile image
Hello67 in reply to orangecity41

Thank you, orangecity41,I’m so glad it’s helping! I hope my changes help me too. Blessings

horsie63 profile image
horsie63 in reply to WinJ3

How do you measure the grams of protein? Do you use a scale of what's listed on the package? I am stage 4 at 22% and at my next appt on June 7 I have requested a referral to a renal dietician.

Skeptix profile image
Skeptix

You could refer your neff to the National Kidney Foundation's KDIGO nutritional guidelines 2020 which, for the very first time, advocate very low protein diets at early (i.e. your) stage of kidney disease (in the event you are not diabetic). This as a way of unburdening the body of uremic toxins and the damage that does to kidney function & staving off the need for dialysis.

How many years that buys you is anyone's guess. But it's all wot we got!

Those guidelines are the product of a lengthy consultation between world leading kidney experts and agencies. It took them 3 years to form the guidelines (that is: they based their advice on the science up to 2017), so can be considered weighty and robust.

Ask your neff, and I mean actually ask them, what they meant by "old school". Do it by email and ask for a written response.

I suspect you'll get silence. Which tells you all you need to know about your neff.

The emphasis of KDIGO 2020 is on very low protein diets however. Low protein wasn't seen to have as significant effect. With very low comes a thing called ketoacidanalogue supplements. These make up for the lower-than-sustainable levels of dietary protein intake you'd be running. There's plenty of discussion on here about it.

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Re: Lisinopril. Sounds like a version of ramapril, an ACE inhibiter medication. ACE (and similar acting meds) is pretty much standard issue for the treatment of proteinuria. If you are spilling protein (which I can't imagine you are not) then you ought to be on ACE/similar. This assumes there are no contraindications such a ACE "cough" or your already have low blood pressure (ACE lowers blood pressure as its primary function).

Proteinurea is kidney damaging so you'd want to minimize that (which ACE and eating less protein and drinking water works towards)

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Re: renal dietician.

If you are doing the work yourself and tracking your daily food intake (using e.g. Cronometer app) then you only need a dietician to look over your shoulder and help get you off to a good start. That's where I'm at. It won't cost the earth that way - you can figure out receipes and the like yourself once you get the jist of it.

There is an online, but board registered, group of dieticians called KidneyRD.com who come across very well. Not cheap but up to speed. They are dealing in the low and keto acid+very low space. You need a renal dietician who is in this space, rather than someone with a "old school" point of view.

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If you haven't already, buy Lee Hull's Stopping Kidney Disease. Lee started banging the low protein + keto conclusion before the NKF did. He dug up the same science the NKF did. This isn't to say he's right on every point but you ought to listen to someone who analysed the available science some years before the NKF did!

Hello67 profile image
Hello67 in reply to Skeptix

Thank you, Skeptix, you are very knowledgeable. I can see you’ve done your research. I also believe the vlpd helps ckd as research has proven. I will email if I can find an email for her. lol I will also look at KDIGO.

I’m not diabetic and in the 1 urine test she ordered there was no protein in urine. I drank a lot of water bc she wanted a larger sample so I asked her if that would affect the results of the test but she said it would have no effect. So as far as I know I don’t have proteinuria.

I will look at KidneyRD.com and see who is in my area. Thank you.

I will also look into Mr. Hull’s book.

I appreciate your taking the time to give all this great information. Have a blessed day. 😊

Skeptix profile image
Skeptix in reply to Hello67

I must read up about this spot urine thing. I can't, for the life of me, see how they can give you any kind of useful reading.

1. Mainstream nephrology, as practiced at street level, appears to hold that:

a) CKD is unstoppable. It starts, it progresses and you go on dialysis or you die of heart disease

b) there is no need to take any kind of significant dietary action. Cut red meat, maybe.

So what if a spot test is a bit this way or a bit that way - it's all heading south.??

So what if you drank virtually nothing during the day, like me, historically? Or horsed through 2 litres of water? If you are measuring the concentration of something in something ( proteinuria figure), it sure does make a whole lot of difference as to the quantities of the somethings involved. Surely??

So I would say: do a 24 hr urine collection, after drinking a normal amount of liquids over that 24 hour period (2 litres?). The you have a hard baseline you can measure yourself against again.

For what it's worth, my very capable renal dietician recently ordered up a 24hr urine to run alongside a spotsample taken during last bloods (for which I await results).

She's just come on board and by the looks of it, isn't convinced herself about the worth of a spot sample.

Hello67 profile image
Hello67 in reply to Skeptix

I agree 100% with you Skeptix. They do say all of those things. And don’t give much diet guidance. I also agree about the 24 hr urine collection. I think I will have to request that it be done because she’s not going to order it. I think that if someone drinks a lot of water right before a spot test as you say it would have to affect the test & distort the results. I agree with you. Thank you so much. I appreciate all of you! 😊

Irelandy profile image
Irelandy

My egfr dropped to 14 six months ago and I changed to a vegetarian diet with a little chicken and salmon twice a week. My egfr went up in subsequent months to 15,16,27,18. I don't feel any better but it has lifted me out of the dialysis zone.What do you have to lose?

Hello67 profile image
Hello67 in reply to Irelandy

Thank you, Irelandy, I’m glad you’re out of the dialysis zone. That’s very kind of you to reply and I wish you the best and that your Egfr goes up further. 🙏🏻

UniqueCKD profile image
UniqueCKD in reply to Irelandy

Hi Irelandy,

This could also help raise your GFR: bit.ly/3v9ktJ7

lowraind profile image
lowraind

My neph told me that diet did not make a lot of difference. This was my new neph, since I fired my old one because I felt he was incompetent. I did my own research and since Nov. 2017, when I was diagnosed with an egfr of 36.6, I have averaged 54.4. I have not gone completely plant-based ( I have a husband who fights this tooth and nail [he also has ckd]), but I have cut many things completely out of our diets. I see the neph twice a year for general follow-up, then do what I think is best.

I was recently diagnosed with hyperparathyroid hormones. She took me off Vit. C & D3. Then set next appointment for six months. I saw my personal physician soon after and told her that I was not happy with getting the diagnosis and being off C & D3 for six months with no follow up. She has referred me to an endocrinologist. My point is, you have to do what is best for you and get 2nd opinions when necessary.

Hello67 profile image
Hello67 in reply to lowraind

Thank you, lowraind for sharing your experience and information. I haven’t gone completely vegetarian either but don’t eat much protein. I do eat salmon and occasionally chicken breast, no skin. I’m glad your egfr has improved so much! You’ve given us all hope and I’m praying mine increases too.

I’m confused about your neph taking you off vitamin D3. My parathyroid is 103 which is higher than the range stated but my neph said that it would be treated if I needed treatment with vitamin D3 prescription which is a synthetic. I am glad that you are going to see an endocrinologist. I pray they figure out the right treatment for you. Please let us know after you see the endo. Have a blessed day.

UniqueCKD profile image
UniqueCKD in reply to lowraind

Nephs are not well trained in diet, so even tho they know about the kidneys, they don't know how to "feed" them. this may help tho: bit.ly/3v9ktJ7

Milli77 profile image
Milli77

Don't know how much limiting protein is good for kidneys. I went total vegan and my numbers stayed the same. My kidneys were damaged due to BP meds which lowered my pressure and I went into acute kidney failure. My numbers came back to Stage 3A. Apparently, I had white coat syndrome. I wouldn't smoke and only have an occasional drink, exercise, eat healthy, There is no going back with kidney disease.

Hello67 profile image
Hello67 in reply to Milli77

Thank you Milli77, I’m so sorry your kidneys were damaged and eating hasn’t helped the numbers. Thank you for sharing your experience. May I ask which bp Med you were on? I’ve been on lisinopril for years now, finally was able to reduce dosage recently due to weight loss I believe and not drinking diet soda. Have a blessed day. 🙏🏻

Milli77 profile image
Milli77 in reply to Hello67

First med they gave me was lisnisipril. This med was good did not effect my kidneys. The one that did was Losartan Potassim 50 mg.

Milli77 profile image
Milli77 in reply to Milli77

They took me off of lisnipril because I was coughing which can be a side effect.

Hello67 profile image
Hello67 in reply to Milli77

I have a chronic cough probably due to lisinopril. I could use that reason to be switched to another bp Med. Thank you so much.

whats profile image
whats in reply to Milli77

I take losartan, and looked it up after I read your comment. I found this, which describes all the renal benefits of losartan: ncbi.nlm.nih.gov/pmc/articl... Lisinopril on the other hand is known to be bad for kidneys, so maybe you got this backwards. My rheumatologist said losartan is good for the kidneys, but "too much" is bad. She didn't say what dose is too much

Hello67 profile image
Hello67 in reply to whats

Thank you, what’s, for replying. It’s odd because the neph I see said lisinopril is good for the kidneys. I will look at the link and I will ask to change from lisinopril. Have a blessed day.

Hello67 profile image
Hello67 in reply to whats

I just read the study that you provided the link for. Losartan sounds like a better alternative. Thank you

whats profile image
whats in reply to Hello67

Hi, you're welcome, thanks also to all those researchers.

horsie63 profile image
horsie63 in reply to whats

I take 12.5 mg of Losartan once a day. It's based on my size and weight (4'9" and 92 lbs, small frame) It can raise potassium into the dangerous levels and added to high potassium foods such as melon, tomatoes, potatoes, bananas, etc can cause potassium to be high. Right now with not eating high potassium foods and the low dose my potassium levels stay around 4.8. If it gets higher I stop taking the Losartan.

Hello67 profile image
Hello67 in reply to Milli77

I wonder if different meds affect people differently. Some people had trouble with lisinopril. I’m glad that you’re able to take lisinopril though. I hope it’s ok for me too but I’m going to research & talk to dr. Thank you so much for sharing your experience. I appreciate all of you who are giving me information and help. It takes the lonely journey of Ckd away knowing that there are others who are on the same journey. I’m just now realizing how many people there are who have ckd. It’s really an epidemic.

WheresNaldo profile image
WheresNaldo in reply to Hello67

According to the research I did 5 months ago, Losartan causes acute kidney damage. I promptly took myself off. I told my neph and she agreed about the acute kidney damage but said something to the effect that it causes damage to patients when they reach a certain GFR level. I wish I had written it down. She said my BP was stable enough that she wasn’t worried. My BP was hovering around 130/84. I recently discovered a natural remedy though! Roasted Dandelion Root tea!! I’m buying the Traditional Medicinals Brand. My GFR has gone from 34 to 43 in 6 months while on a vegan diet. I bought Lee Hulls book almost a year ago. It’s a great starting point.

Hello67 profile image
Hello67 in reply to WheresNaldo

Thank you so much for your reply and the info, WheresNaldo. I did not know about roasted dandelion root tea. I’m so glad your numbers have improved! I may include that tea in my eating plan. Thank you to you and others who have told me about Lee Hull’s book. I will be reading it. 😊

UniqueCKD profile image
UniqueCKD in reply to Milli77

Hi Milli77,

This could also help raise your GFR: bit.ly/3v9ktJ7

Sarah_402 profile image
Sarah_402 in reply to Milli77

Hi Milli77, I have AKI and now CKD. Would you mind sharing how long it took for your eGFR to increase? My doctor said my eGFR would increase some, but it has not. Diet has not seemed to help either as of yet.

Milli77 profile image
Milli77 in reply to Sarah_402

It took (1) year for it to increase. It went from 44 to 58. It never went back to 67 which was before the acute episode. I am 71 so doctors say I will not die from this. Still so upsetting to know this just didn't have to happen.

Milli77 profile image
Milli77 in reply to Milli77

Yes, diet hasn't really helped me either. Doctor never told me to watch my diet, I did so on my own. They don't seem to put much emphasis on diet. I know smoking, drinking, and exercise may slow progression. Although, my cholesterol is very good now. I only eat fish, chicken, veggies, and allow myself an occasional glass of wine.

Sarah_402 profile image
Sarah_402 in reply to Milli77

Thank you Milli77 :)

UniqueCKD profile image
UniqueCKD

Hi Hello67,

I have had good initial results with this helping raise GFR: bit.ly/3v9ktJ7

Hello67 profile image
Hello67 in reply to UniqueCKD

Thank you, unique CKD I will definitely check that out. I’m so glad it’s helping you. You give us hope that ours will improve too.

PurpleKatisha profile image
PurpleKatisha

Hi! My renal nutritionist told me the same thing. The only thing I am limiting in my diet is my salt intake, which isn't a hardship, as I already eat a low-salt diet.

Also, speak to your nutritionist about other foods limitations. My transplant center sent me a booklet with a litany of dismaying restrictions. I ran the list by her and she told me that that list was just a template aimed at people who are on dialysis, and that I could indeed eat green leafy vegetables and other foods that had been on the "do not eat" list.

As for lisinopril, my nephrologist took me off it for the very same reason -- it was hard on my kidneys. There are plenty of other high-blood pressure meds out there. Ask your doctor what they recommend.

Hello67 profile image
Hello67 in reply to PurpleKatisha

Thank you for your reply, Purplekatisha, I haven’t seen the nutritionist yet but it relieves my mind that yours told you just to limit salt. I eat a very low salt diet also.

I will ask about changing Med from lisinopril. My neph said she prescribed it for her kidney patients even if they don’t have a bp problem. It is all confusing but I am getting a lot of good advice and info from all of you. Thank you & have a blessed day.

TDPowers profile image
TDPowers

I was told by my nephrologist that it can lower GFR for a short time at first but then your GFR will go back up Ny GFR is around 16 so he wouldn’t prescribe it said it would lower my GFR too much

Hello67 profile image
Hello67 in reply to TDPowers

Thank you for your reply, TDPowers. I’ve been on lisinopril for approx 10 years, way before I had any kidney problems. I’m so sorry your egfr is so very low. I hope you are doing ok with that number and won’t need dialysis. 🙏🏻

TDPowers profile image
TDPowers

Thank you

Hawaiilover profile image
Hawaiilover

I was told I didn't need to worry as much about limiting protein. More importantly sodium & potassium and keeping my BP down. I've tried some plant based items and find a lot of times they have more sodium and/ or potassium in them than regular food items. It's all about portions and balancing what you eat and I think each person can be a bit different.

Hello67 profile image
Hello67 in reply to Hawaiilover

You’re right, Hawaiiover, most of the processed plant based foods are not healthy. I think it’s much healthier to make your own food. I too stay away from those kind of plant based foods. I also try to limit sodium. I’m reading a lot about limiting protein though and the beneficial effect on ckd. You’re right too portions are one of the most important things. Good luck & God bless. Thank you for sharing your experience. I hope that you’re doing well. 😊🙏🏻

Valerietemps profile image
Valerietemps

Hi Hello67. I had a nephrologist tell me that anything that had a mother eat only 1 time a day. The doctor I see now said that was old-fashioned, but I still only have protein 1 time a day. I limit sodium quite a bit and watch potassium and phosphorus.

Hello67 profile image
Hello67

Hello Valerietemps, that was an easy way to remember not to eat too much protein. lol I’m reading a lot about the very low protein diet and am convinced a plant based diet is the very best for kidneys. I do think legumes are healthy even though they are protein. I believe our bodies process plant based proteins differently than meat proteins. I’m not an expert or dr and am learning a lot from the community on this site and the links they have provided. Have your numbers improved or have your kidneys remained stable? I hope you’re doing well, I know that all of us on here care about each other & about your journey. 😊🙏🏻

Marvin8 profile image
Marvin8

Be skeptical about UniqueCKD's link to a site that recommends listening to audio tapes to dramatically increase your GFR levels. UniqueCKD just joined our community 3 weeks ago and has hawked that site 6 times in this thread alone without so much as a discussion about it.

Skeptix profile image
Skeptix in reply to Marvin8

Agreed Marvin. I asked Unique some basic questions as to the workings of the method (by what process would it repair scar tissue, for example). As yet, no response.

VGC3 profile image
VGC3

Every time I see any of my doctors they all say limited your protein intake. I got the information that I's been looking for and the typical amount of your daily protein should be 0.4 times your weight as safe. I'm at stage 3B now so I have looked at every single label of everything single thing I put in my mouth. There is protein in almost everything you eat. I was flabbergasted at what there is protein in it. I've been a label reader for 25 years and protein was never looked at. The best thing we can do to help our kidneys is to make sure you drink plenty enough water every day. I hope you get better with what you can learn!

Hello67 profile image
Hello67 in reply to VGC3

Thank you, VGC3, I’m also finding that protein is in everything. I’m at 3b same as you & my neph did not tell me to limit protein but I’ve looked at info posted on here & kidney sites and I believe it is better to limit. I’m hoping that my increased water intake improves my numbers. I hope the same for you too. God bless

VGC3 profile image
VGC3 in reply to Hello67

You are very welcome. I have so many chronic illnesses that make me do large amount of research from places kike the Mayo clinic and other reliable sources dig around until I find answers that can be trusted. You can help yourself more that some doctors.

Hello67 profile image
Hello67 in reply to VGC3

I agree with you, VGC3, there are great sites and we have to do our own research and be proactive. Funny thing, when I saw my neph for the first time I asked a lot questions and was told to stay off the web/Google. I didn’t take that advice. lol 😊

nascar4433 profile image
nascar4433

I had taken Lisinopril for years, but on my first visit to my neph she took me off of it immediately. Best to ask yours...jot down questions as they arise so you'll remember all of them, then don't forget to take it with you to your next appt! Take paper/pen so you can write down what they tell you...it's impossible to remember everything, and your neph will be happy you're taking an active role in your disease and healthcare. Good luck on your journey.

Hello67 profile image
Hello67 in reply to nascar4433

Thank you, nascar 4433, for your good advice and letting me know about your neph and lisinopril. I am very glad to hear all experiences. What medicine did yours put you on? I, too, believe in asking questions. The good news is my bp is low now after changing my eating and not drinking the diet soda so I rarely take lisinopril. Reg np cut it back and it was still going too low. Neph said that if bp is too low it can also damage kidneys. I don’t see neph until next summer tho. Good luck on your journey also. 🙏🏻

I took Lisinopril for years before my transplant and it worked well for me. I think it depends on what type of kidney issues you have. I have polycystic kidneys and my doctor in addition to my research doctor in a medical study that I was in prescribed Lisinopril (it was a PKD research study) So maybe for Polycystic Kidneys it is better but not necessarily all kidney issues. It does cause a cough, when I was on a high dose I had a cough but when my dose was lowered it went away. This medicine worked so well for me that I was only on 2.5 mg. When my potassium started to get too high as my kidney disease progressed I had to unfortunately come off of the Lisinopril and the highest doses of any other meds never kept my bp well controlled. I'm sure everyone has a different experience, this was just mine. Hopefully it helps!

Hello67 profile image
Hello67 in reply to PKDpostTRANSPLANT

Thank you, PKD postTransplant, for sharing your experience with lisinopril. I’m sorry you’ve been through so much. I pray that you have had a successful transplant and that your new kidney is working perfectly. I don’t know what kind of kidney disease I have but I had an ultrasound and it showed 2 small mm cysts in one kidney. But my understanding is that polycystic kidney disease shows lots of cysts and rather large ones if I’m correct. I don’t know if I’ll find out what caused my ckd but I believe that the changes I’m making in diet are going to help. The good news is I’m not taking any bp medicine due to weight loss, not drinking caffeine and eating mostly plant based diet. Thank you so much.

You will be in my prayers.

Blackknight1989 profile image
Blackknight1989

Low protein diets are recommended by NKF in the 2020 KIDGO guidelines and by the American Society of Nephrologist. Please visit NKF for the infor and new release. The meditation diet is also a contrary recommendation but the need for protein reduction depends on which stage of CKD the patient is currently. The lower eGFR and UCAR the more protein restriction is recommended. In the recommendations the NKF and ASN cite several current research studies available on PubMed as evidence. Protein, more specifically, the protein molecule is one of the most damaging things to your kidney’s nephrons. The protein molecule is bigger than the kidney nephrons and act like a battering ram when processed destroying nephrons without discretion. We are only born with a certain number of kidney nephrons and when destroyed they cannot currently regenerate. As nephrons are destroyed so is overall kidney function. This is the reason for protein restriction.

Lisinopril is an ACE inhibitor and is still a frontline combative high blood pressure drug and most often it is combined with a diuretic so be sure if a kidney patient you ask about the lisinopril/diuretic combo of prescribed instead of just the lisinopril. While there are many high blood pressure meds they fall into 3 categories. If taking only lisinopril the ACE switching to another ACE won’t help with any kidney issues. So do your research. ACE inhibitors are also currently recommended to help kidney patients with blood/urine proteinuria. However, there are some recent studies that ACE’s may cause kidney damage. Evidence is still being researched by NKF, ASN and other kidney specific health groups to include the NIDDK.

Way too many doctors to include the nephrologists we need to be our trusted advisors are spreading old, incorrect or just plain false information to their patients. Worse, they are basing treatment decisions on this information and making patients worse. Often times GPs just don’t know what to do with CKD patients (or the lab tests that show their patients have CKD) because they are “jack of all trades.” However, for a nephrologist to not be current on at least KIDGO and ASN recommendations is unacceptable but is a reality we as patients must live with unfortunately. Thus, it is my opinion that no one will be a greater advocate then YOU for YOUR kidney health. Do your research from reputable sites like NKF, ASN, AKF, NIDDK and other sites that give information backed up by research studies. Read the studies on PubMed and MedLine. Don’t trust, completely, what a nephrologist or any other doctor says unless you can verify on a reputable site. This is not to say doubly your doctors advice but just be careful with their advice as information has really changed in the last 5 years as money and the spotlight has finally been directed towards CKD. In the next 10 years information will change even faster because CKD is a global killer and a tremendous weight in cost and other measures on the entire worlds health infrastructure. The days of conservative, passive management of CKD until stage V then deciding on dialysis until transplant are over. Just see the most recent news of new meds being approved for CKD treatments, the pig kidney trials on dead humans sustained by machines, and other recent “innovations” being researched to teat CKD.

Don’t rely on diagnosis websites nor the opinions of the “experts” (including me) on this site as none are doctors that I am aware of anyway, However, if links to quality websites are posted or referenced go to the sites for your on research and verification. For most of us CKD is (or should be) the biggest health issue we will have. Too many other health issues either cause or are made worse by CKD. If you can’t or won’t go research yourself and be your own advocate you run the risk of needing dialysis/transplant and/or dying much earlier than necessary. Sorry for the harsh assessment but from a little over a year here and from my own 26 years with CKD it is an observation I have developed from first hand experience.

Just my opinion.

Hello67 profile image
Hello67 in reply to Blackknight1989

Thank you, Blackknight1989, I can see that you have done your research. I agree with you, we have to research and advocate for ourselves and for our own healthcare. I have been reading the recommendations and do not agree with my neph. I have already had positive results with my bp and weight but I have not had further blood work done yet so am hoping that I see improvement. Thank you for the info on so many good sites. I have looked up most of them and will check out more. God bless.

orangecity41 profile image
orangecity41NKF Ambassador in reply to Blackknight1989

I had a PD who was too old school on CKD and have changed to a better Doctor who is more understanding of CKD.

Blackknight1989 profile image
Blackknight1989 in reply to orangecity41

Thanks Orangecity41 for a great lesson in taking charge and being an advocate for your own health, well-being, and peace of mind. I am sure you saved kidney function by changing docs. Read and lean folks, if your doctor isn’t a superstar and doesn’t meet all your expectations for your care change doctors. I know all do not have that option but if you do take Orangecity41’s example and get a new doctor! Great post!

Blackknight1989 profile image
Blackknight1989

Somewhere around here I posted a link to about a million recipes/renal diet sites. Ok, maybe not a million but more than most probably care to click on (even though it was not a post intended as click bait…lol!).

Renal diets need to be specific and limit many things like protein, salt, potassium, alcohol, NSAIDS, Prevacid and other things put in your mouth. If you don’t adhere to the total diet you can have problems seeing any benefit from any diet. Thus the need for a RENAL dietitian. In the US even Medicare/Medicaid now pay for visits to a renal dietitian and current lobbying efforts are seeking to increase funding (and thus visits available per year) to see a renal dietitian. However, in the US we have a ton of dietitians but not nearly enough qualified as RENAL dietitian. It is being addressed in the dietitian community but it takes a year currently to become board certified as a RENAL dietitian. So we are left to going to sites like the NKF to read their KIDGO guidelines to physicians to determine what the diet is and how to apply it to daily lives. Conversely you could buy a couple of books by specific authors who get most of the diet correct and help make it easier to transfer from a concept to a reality we can make work. Lee Hull’s book is an example. But beware as there are 30 charlatans for every Lee Hull and in my 26 years in stage IV I have seen those fake, money-grubbing pricks cause real damage, cause stage 3/4 to move to stage 5 faster than they would have “naturally.” Unfortunately it is currently buyer beware in most of the “cures” available for ckd and that includes now the renal diet.

Also, to see the real benefit of the diet after you implement all the needed restrictions you need 6/12 months of commitment to the diet. Additionally, the renal diet takes true commitment and a lot more time than eating as a “normal” (non-ckd) person. As with any diet the restrictions often prove too rigorous for most. Furthermore, if restricting protein to levels recommended by NKF KIDGO guidelines you probably will need supplements to help keep blood level protein high enough to prevent muscle wasting. Getting the correct supplements is another minefield with several available but most worthless. Skeptix probably can articulate this in a more in-depth explanation due to his experience.

Finally, current research supports the taking of ACE or ARBs as they help reduce the load o the kidneys and are usually very effective in lowering BP which is one of the big 3 causes of CKD. If you have HBP the benefits of these meds if they lower you BP to below 120/80 far outweigh any kidney concern. There are some very recent studies on PubMed that show they may be detrimental to the kidneys in some specific situations. However, there are several more within the last 15 years showing the benefit to most CKD patients. (Links provided if desired). As always work with your care team to determine the best care for your specific circumstances. Further, make sure the ACE or ARB is not combined with a diuretic. Many of these meds are combined with diuretics because that helps lower HBP better than the ACE or ARB standalone. However, diuretics cause (obviously) dehydration which is dangerous to those of use with CKD. So just the ACE/ARB by themselves. (Again links provided if desired).

Finally, most primary care doctor and many (unfortunately) nephrologists are relying on information that is either anecdotal or 10/20 years old. In the US this is more of a problem in the last 10 years as the government oversight and demand on all docs prevent the benefit of controlling schedules to allow for research during “business” hours. Also, due to this change in 2014 many primary care and specialists practitioners have expanded the use of Nurse Practitioners as the front line providers of care and only if there is a “need” will you get to see a doctor. (I take nothing away from Nurse Practitioners at all as they are a valuable part of medical care and it is a tough degree to earn). Unfortunately there is very little time during the medical education of these new (relatively) frontline caregivers to discuss the identification and treatment of CKD. While that isn’t the case with nephrologist many never see the nephrologist of they are revered with stable stage 3b or higher CKD. In many nephrologist practices there is the belief (however old it may be) that the passive measures of diet, lowering HBP, lowering A1C and controlling diabetes are the jobs of the primary care docs and thus until stage 5 their services are not needed. Or some nephrologists will see you but offer none of the new guidelines developed by the ASN and NKF or by the ASN by itself. You and I can go to the ASN site and refute many “recommendations” by some nephrologist. Until someone in a position of power changes the time demands the current government guidelines demand of doctors to get paid for treatment of patients or start fining doctors who don’t follow the current guidelines as recommended by agencies who are on the cutting edge of new developments to support those guidelines, this will continue to be a problem. I am lucky as I have a nephrologist who does the research and a VA doctor who either defers to the specialist or does the research (that I have to provide but I am happy to do it). If you don’t have that kind of care team plus a RENAL dietitian than change doctors immediately if it is an option.

As always just my opinion and experience and should not be considered medical advice. Finally, the best treatments and diets for you are what you and your care team decide based in your unique health conditions.

Skeptix profile image
Skeptix in reply to Blackknight1989

"As always just my opinion and experience and should not be considered medical advice".

Spoken like someone who comes from the country that invented litigation for the masses.

Good "pointer post". Pity there isn't a way to sticky or collate useful stuff for everyone to refer to.

Blackknight1989 profile image
Blackknight1989 in reply to Skeptix

Are you insinuating the US is in need of tort reform? I’ll have you know there are no frivolous law suits in this country and that most of our attorneys won’t take cases that are a waste of the courts time or seem ludicrous. Why, I just read an article outlining a case against a funeral home for the “accidental” cremation of an individual by the family. The family states in their case that the deceased demanded no cremation because he would need this body for the return of Christ and the resurrection following. Without the body he would not be resurrected. So the family was suing for over a million in damages as there is no price that can be put on destroying the vessel needed to rise from the grave at the final return of Christ. This is a completely relevant case of a lawyer who is doing God’s work…lol!

I assume that the torts in the mother country are more regulated than here where a city can sue a citizen for “too many FOI requests” or a neighbor can sue neighbor for damages due to a dog barking too much. See these are the freedoms we fought for against y’all in 1776. If not for our freedom from the crown we wouldn’t have all these beneficial lawsuits for any and everything. Don’t Tread on Me!

Skeptix profile image
Skeptix in reply to Blackknight1989

We used to laugh ourselves silly at such stories, barely able to believe that such a thing was possible.

.. until US ways landed on our shores along with obesity and the belief in a pill for every ill.

We get that kind of story here now - somebody claiming for a 1/2" horizontal scar in the middle of her little girls eyebrow. Completely invisible: $30,000. We've a crisis in play centres and adventure parks where companies are dropping like flies because they can't get insurance due to the level of claims payout. It used to be you got hurt and got on with it, in the main.

There was a pothole in a pathway (sidewalk) over the other side of Dublin, in a poor area. The council had been told but hadn't gotten around to fixing it. There were something like 15 claims running, where people said they'd fallen into it and hurt themselves. The locals called it "the pot of gold at the end of the 🌈

But there was one I heard recently, which I think was stateside, which set a new standard. Guy (a lawyer) has a box of real expensive Cuban cigars, insures them, smokes them. He then claims off his FIRE insurance. Case upheld and he was award 15k or some such.

I await the return of Christ as a deer pants for water. He's about the only thing that will end all this.

Hello67 profile image
Hello67 in reply to Skeptix

Amen!! You are so right! I love that hymn too, As the deer pants for water! Come Lord Jesus! 🙏🏻🙏🏻🙏🏻

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