Need to learn about my kidney disease diagnosis

[Ladyprudence]

Chronic Kidney Disease. I've just been diagnosed with Stage 3a. I know nothing and am starting from scratch. I would really like to see how others are dealing with this disease and get tips on diet, exercise and OTC medications which may be harming me, such as Tylenol and other painkillers and diet supplements. I've been placed on Kerendia. I wonder if I should be seeing a nephrologist since my GP seems to be leaving me on my own.

[AENEASavc]

definitely see a nephrologist. Consult with a renal dietician. Don’t delay or rely on lay advice. Don’t rely on your GP who should never have ignored your concerns. I am 78 and around your age. I received the gift of life when I was near death 1 yr 6 months ago.

[VeganNan]

Hi. I too was diagnosed with stage 3a in September last year. Totally out of the blue because I don’t fit any of the criteria. Started off in 4 but now seems to have settled in 3A.

I was referred by my GP to see a kidney consultant whom I have seen twice now. I am based in UK so thing’s might be a bit different. In all honesty they didn’t seem to be too concerned with my stage of Kidney disease and didn’t offer any advice on how to prevent further decline. I set about to research it myself. There is a lot of information out there, some good some maybe not so good, so I concentrated on the recognised kidney sites and information from other people on here. I was already on a mainly plant based diet, but I set about reducing salt intake and now eat a Mediterranean style diet with plenty of fruit and vegetables. I have drastically reduced my intake of refined carbohydrates as these can put a strain on the kidneys as they digest as sugar. A common thread was no dark soda drinks, I have never drank these and drink plain water and tea (I’m British)🤣 As for excerise I walk and or swim on most days, im 71 and don’t try to compete with people younger than me it’s dependent on your fitness level to begin with, as long as you do something and enjoy it Acceptance for me took a while, but I now find it is my life and I have to take responsibility for it I can’t really comment on the meditation side, l am only on blood pressure medication as my blood pressure went up with the kidney disease

I wish you luck on this journey we didnt ask for but have been sent on anyway Would love to hear how you are getting on Keep reading the stuff on here, you are not alone x

[userotc]

It's typical for doctors to wait until your CKD has progressed at least to 3A (in fact, my mum and others on here weren't even informed then!). In brief, it's because they're limited on allopathic treatments so they ignore it on your behalf! But you can do plenty WITHOUT medications, via nutrition and lifestyle.

Whilst you'll get good support on here, you could alternatively see a qualified Nutritional Therapist that specialises in CKD. He/she likely wouldn't recommend Kerendia or other drugs.

My mum (67y/o) follows an NT protocol which has helped her increase eGFR from 36 to ~60 in ~5y. No drugs at all.

[CKDnomore3953 in reply to userotc]

Hi userotc,

I am not familiar with the terminology “NT protocol” - what does that mean?

Thanks

Lynne

[userotc in reply to CKDnomore3953]

Hi Lynne. It's a protocol that follows relevant Nutritional Therapy guidelines for nutrition and lifestyle - personalised for mum.

[CKDnomore3953 in reply to userotc]

Thanks for your reply.

Lynne

[S_dillow]

definely get a referral for a nephrologist .im 3b but manage it with diet,exercise and a little help from the BigOne upstairs.

[Turtlepad513]

yes to nephrologist. Do you know what kind of ckd you hace?

I’d also recommend reducing daily sodium intake to 1500mg, limit alcohol, soda, and red meat, and give up NSAIDS. Tylenol is ok, advil, aleve, ibprofen, not good for kidneys.

[PeaB4YouGo in reply to Turtlepad513]

I feel that this is one thing we constantly miss on this forum: the underlying diagnosis. I know that the reason I am at Stage 4 is because I have Polycystic Kidney Disease. Just saying "I have CKD." is like saying, "My car won't run." It says nothing of the cause of the problem. As I'm sure most of us know, there are treatments that change depending on your diagnosis.

[Turtlepad513 in reply to PeaB4YouGo]

yes, I have fsgs, but folx can also have iga or pkd or aki. Depending on what type the author has, some of us will have more insight and experience managing the certain type than others. Different types of ckd will be most effectively differently.

[Ladyprudence in reply to Turtlepad513]

Turtlepad, I just now understand that you're responding to my post; it's taking awhile to navigate, but I am getting it. I appreciate what you're saying, and am sure I'll know more when I see a nephrologist. Working on that now. Many thanks.

[suzell56]

I too am 3a CKD and was referred out to a nephrologist immediately. I insisted on that bc I did not fit any critia for it. It was the best decision! I went to several different websites to learn about it .... DaVita.com and many others have great learning tools for you. I ended up having a kidney removed and have hovered in the 3a section for quite a while. I totally cut out red meat, major reduction in salt intake, and no NSAIDs whatsoever. I rarely drank alcohol or soda so it was easy to cut that out, lots of water is necessary but you need to see about how much is recommended. Good luck on your journey, you came to a good starting place. God Bless.

[Phillip46]

hi Lady, 75year old guy hear with stage 4. I would definitely make an appointment with a nephrologist, as my internist never bothered either, and got a nephrologist on my own. Don’t take any NSAIDs, like Motrin, ibuprofen,etc! Get an appointment with a nutritionist/ dietician to advise you about different food groups. Read labels on food and check them with your computer. Be wary of foods high in sodium, phosphorus and potassium. Depending on your physical shape, start walking. Also, no caffeine, chocolate or dairy products. Good luck to you and the diet isn’t that hard once you get used to it. Phil

[BillB2008 in reply to Phillip46]

New member here.... I read that coffee is actually good for the kidneys don't have the article right now, but research "Is coffee in moderation good or bad for the kidneys?" see what you get? I know people will claim coffee dehydrates you, but just drink water to offset the coffee dehydration theory. I did it for you here's one link:

hopkinsmedicine.org/news/ne...

[Phillip46 in reply to BillB2008]

thanks and just going by what my nephrologist and dietician told me, and I can’t see any problem in a cup per day

[Ladyprudence]

I am going to post a reply here to all of you, because I haven't learned yet how to start a fresh thread. I am grateful to you all for your replies, and am feeling encouraged and more enlightened by them.

I will tell you a little more about myself, but will try not to run on too long. About 11 years ago I was diagnosed with emphysema at the age of 68. I was in the mild stage, and am still doing well. No ER visits to date. Enough about that, and I've since been put on meds for Glaucoma, high B/P, some sort of heart issues.

I have not been a good patient, refusing certain tests and fudging here and there on some meds. So I don't fault anybody for anything, at least not a doctor.

Up to now, I've exercised pretty regularly, but was very lax on good nutrition and water. Believe me, I've done a 180, and for the most part feel very good. I'm not just terrified, because I've begun to take my diagnoses in stride as they've come up. I appreciate the advice regarding no potassium, caffein, chocolate, dairy, colored sodas. I will look for a nephrologist and dietician. This info and advice added to what I've already read or heard. I appreciate hearing that maybe I wasn't told until I reached 3a because of lack of good drugs, (sorry, I paraphrased).

If anyone reads this and suggests that I move the post, please tell me where to put it and I'll do my best. I'll stay in here and learn all I can. God bless you all for your help.

[BillB2008]

hopkinsmedicine.org/news/ne...

[KidneyCoach NKF Ambassador]

I will respectfully correct that NOPOTASSIUM

SODIUM

PHOSPHORUS

CHOCOLATE, CAFFEINE

DAIRY

is harsh and impossible. Diet should be adjusted in response to blood test results. Limiting yes but not eliminating not so much.

Control blood pressure, blood sugar, limit dark sodas & higher phosphorus foods, sodium, NSAIDS, exercise and maintain healthy weight, drink plenty of water. Treat infections quickly.

Check out kidneyschool.org

Fresenius Kidney care and DaVita offer free educational classes, recipes, dietitians.

More resources like

NKF

AAKP

HOME DIALYSIS CENTRAL

AKF

NETWORK FOR EACH DIVISION IN U.S.

HOME DIALYZORS UNITED

PKD.CURE

IGA

ALPORTS and more.

Try not to feel overwhelmed. Wishing you well. Blessings

[Ladyprudence in reply to KidneyCoach]

KidneyCoach , lol, thank you, I feel like Santa claus has just dropped in on me. I am sure I made a mistake there, and apologize to my dear helpers for not paying close enough attention to what they said. I am going overboard anyway, because I want so much to get accustomed to the new way of doing things. Have a great day.

[Hidden]

Welcome!

Get a referral to a nephrologist and a referral to a Renal Dietician, they can point you in the right direction in terms of meds to avoid and a renal diet that is tailored to your current labs. Some Kidney Centres have a dietician on staff, mine does. Make sure you are seeing someone who is experienced, has a good patient base and is qualified to deal with Kidney Disease. Start now! Diet changes make a difference.

[HisLittleOne]

I had a developed stage 3A three years ago. I saw two nephrologists, who both said nothing to worry about after thorough testing. They both said it was normal for my age (73). (They were of no real help and just said “Come back in a year and don’t worry about it”) 🫤

However, I did research on my own and carefully watched protein and cut out meat (except for occasional chicken) and reduced salt intake, drink plenty of water, began resveratrol 2x daily and started intermittent fasting (16 hours) I drink hibiscus tea which keeps my blood pressure in the low-normal range as well as keeps my blood sugar low

I do walk 20-30 minutes daily.

I am a devoted Christian and pray daily for my kidneys which I totally believe is the major factor in the improvement of my health

I kept getting lab tests every six months and after a period of time my eGFR went from 54 to 81. It has remained in the normal range (above 60) since.

So Indeed there is a great deal that you can do to improve kidney function and prevent further decline.

Also, a fantastic resource that is extremely helpful is DadviceTV on YouTube. He was once at Stage 5 and was recommended to have dialysis but with natural and medical means he is now in stage 3B. He has a nephrologist (Dr. Rosansky) as a guest speaker often who explains clearly and in detail the different stages of kidney function, what is normal and when to be concerned, what to eat and what meds may benefit. I highly recommend his channel as many have been helped with understanding the actual medical facts about kidney function and relieves many fears that people have. The most important thing to look for is protein in the urine. He said even with stage 3 it is fine as long as there is no protein in the urine, which would be the marker of kidney problems to be checking for.

I hope this is of some benefit and encouragement to you.

Blessings,

Paulette

[Ladyprudence]

Thank you very much, @HisLittleOne.

[jessica_d]

Hi 🙂! I know this is an old post, but wanted to share with you that from my experience it's normal that those diagnosed with CKD stage 3a are often not sure where to start, or what they need to learn. You are not alone! It's challenging to learn about your condition when newly diagnosed, and there are lots of misconceptions- I'm glad you started this thread.

I really liked this recent livestream on the Warriors Quest Show where Jared A. Brown, and Steve the Kidney Nurse interview Michael Fergusson (CEO of Ayogo) about how CKD patients can empower themselves with knowledge, and reflect on their treatment options: youtube.com/watch?v=nGLcMeL...(Not working as expected?) You might find the information they share interesting, and helpful on your learning journey.

Good luck! I would love to hear what resources you have found most useful.

[userotc]

I think you meant to reply to the OP? Neither I nor my mum would go anywhere near nsaids (or any medication, where possible). I agree she should take advice but imo it should be from a qualified Nutritional Therapist. I've alerted the OP to your reply.

[userotc]

Holy has replied to me instead of you. See below message plus my response.