Hello everyone. I am 65 year old male and fast approaching 66. I am from England and living in Liverpool. I was diagnosed with CKD 3 in December 2023. I understand that my GFR was 49 and my urine was fine me, but apart from that I don’t have any other data. After some quick internet searches I contacted my GP (by phone) and he pretty much said you have 10 years and suggested I stop taking my Lansoprazole (30 mg), but continue with the Atorvastatin (20 mg) and Lisinopril (10 mg) daily, so my cholesterol and BP are in range. For joint pains I used Ibuprofen pills and a 10% gel when needed. I stopped taking Ibuprofen pills and I am drinking more water and where possible cutting down on dairy and processed foods.
Any advice on medication and diet would as we are not offered any real advice at this stage and only at stage 4 do you see a kidney special.
Thanks in advance
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"Any advice on medication and diet would as we are not offered any real advice at this stage".
I certainly cant advise on medication and personally believe it generally unnecessary for CKD which can often be managed well just with nutrition and lifestyle. My mum's shown that for several years now eg doubled her egfr to ~60 and weaned off BP meds.
If that's of interest, Id suggest you contact a qualified Nutritional Therapist instead of a GP that offers a "10 year" ultimatum out of ignorance about the power of nutrition & lifestyle.
To encourage you, note here the far more positive opinion re Stage 3 of CKD ie “With treatment and healthy life changes, many people in Stage 3 do not move to Stage 4 or Stage 5” kidneyfund.org/all-about-ki...
Hello Userotc, thank you for the reply and your very helpful comments. I agree it is a bit ignorant and the GP is not at all proactive. I am already looking into vegan and plant based and actually had my first Quorn panini sandwich, bloody delicious. I am is stay at worst in stage 3. Thanks again 👍
No problem, most medics are generally like that including my mum's nephro. He seems to want to take credit for mum's improvement despite playing no part in it!If you feel you can't progress alone, let me know and I'll send links to qualified Nutritional Therapists from which to choose.
Thanks for responding, terrible that even the nephros are that bad and claiming credit for nothing. Thanks I may take you up on that later. Thanks again and have a great Christmas and new year 👍
I am on haemodialysis and live in Scotland. So being UK based I know how useless the NHS is. Your GPs attitude absolutely stinks and shows the the sheer ignorance some of them have. I was diagnosed in 2015 and this is what I would do differently, knowing what I know now!!
Get a copy of ALL your recent blood results. (There is also portal that kidney patients can sign up for called PatientKnowsBest. All your blood results get posted there so you can access them)
Then you start doing your own research. Look into your diet and lifestyle. A lot of people can maintain their kidney function through eating a plant based diet. Animal proteins can reduce your function big time
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When you do eventually see a consultant, then the fun begins. Usually the first thing they do here, is put you on steroids, to reduce inflammation. I walked out of the hospital pharmacy with a carrier bag full of drugs. I put my faith in that consultant and never questioned anything. If I had known what was ahead of me, there is no way I would have taken that medication.
I put on 3 stone. My hair fell out, insomnia, joint pain, you name it I got it. I felt toxic. I was told it would be a short period of 2 months I would be on them...9 months later I gradually tapered myself off them as they did bugger all. If anything I was worse. Also I didn't see a dietician until I was about to go on dialysis. Do you know what she kept recommending me to eat...ham??? My husband actually said..does she have shares in a pig farm...her answer to everything is ham.
My point is my friend, you are on your own. No-one cares about your health as much as you do. So now it's up to you. Don't want to make healthy lifestyle changes or eat healthy food..then come up to Scotoand and I will show you the reality of being on dialysis. If you think life is bad now, then wait till you see what's ahead if you, if you don't make changes TODAY and start fighting for your health.
Sorry if I am sounding brutal but you are in a great position to do something. I wish someone had been brutally honest with me in the beginning. Instead I put my faith in the NHS and never questioned anything. Read up on previous posts about plant based diets etc.
You have done the right thing joining this community. Sometimes some of the members know more than my medical team. You have got this my friend and good luck 👍
Hello Ziggydoodah, thank you for the reply and please be as brutal and honest as you feel, I appreciate this approach. I think you sum you sum up my position and options perfectly.
I was told I would only be referred if and when I reach stage 4. I am more proactive than that and with all the advice I have received from you and the other nice members who replied , I will absolutely take this into my own hands.
Your journey sounds unbelievable and you have certainly been let down by the NHS, sorry to ask but at what stage were you first diagnosed and how long have you been on dialysis? Thank you once again for your reply and straight talking 👍
I first went to my GP in 2015. I was absolutely exhausted. I literally had to crawl upstairs to bed after a day at work. I thought it might be an underactive thyroid as we have a history of it, in our family. I got blood tests taken and when I phoned for the results, they would say they needed to do more as they needed to double check some results. This went in for about four months. Everything I asked what the issue was I never got a straight answer, then heard nothing. I just presumed everything was OK when they never got back to me. A month later i got a call from a locum. He had accidently been sent my results in error and wanted to know why I hadn't been referred to hospital. He couldn't believe nobody had discussed my results. Three months later I met my consultant, then the fun really begins 🙄🙄..In May 2022 I finally waved the white flag and grudgingly dragged myself of for haemodialysis. Its not how I would choose to spend 12 hours every week but it is saving my life. I am now live on the transplant list too. Life is not great but I'm still here.
You are at a crossroads right now. You can just do nothing and hope for the best or do your research and I mean GOOGLE everything. Get your potassium and phosphate levels etc. Check which foods cause inflammation. Seed oils and gluten products can cause issues too. Research all the medication offered to you. Question anything you don't understand. Make your voice heard!! If you need anything or you just need to vent, you know where I am. All the best.
Hello Ziggydoodah, thanks for getting back to me. God you have certainly been let down by the system but you fought for 7 years before succumbing to dialysis and I can only imagine the effect that this must have on body and mind.
Your approach to all this is brilliant and I will absolutely do all I can in my powers to at minimum delay and hopefully eliminate my need for dialysis.
Thanks you again and I will absolutely get in touch when I need advice. Have a night and I will keep you posted. 👍
I am so sorry to hear the horrible experience that you had with your diagnosis it’s awful to hear of your current quality of life.
I appreciate your advice.
I can relate as the medical care in general has issues diagnosing issues with symptoms that are nonspecific. I’ve been dealing with my symptoms for 3 years. These days everyone wants to dismiss everything as long term Covid. Exhausted all the time…must be long term covid.
I finally had to beg my doctor and insist that I needed help getting my life back. I documented my reoccurring symptoms and she agreed to help. I’ve been getting tests for all kinds of things. Last one was auto immune disease
Now that I have a CKD 3A and am learning about it, I see it was likely my kidneys all along. At the time of my first symptoms I was sent to the ER for possible appendicitis,
I decided to be my own best advocate .
Thanks for the tip about two things: anti inflammatory diet and studying past blood results.
Yesterday went through my blood test results and looked up which test corresponded to which conditions. I saw a pattern of tests for the last year that were out of range or had trending patterns that all had to do with kidney function and disease. I am now looking at what to do to address each element / piece of the puzzle .
I don’t have diabetes but do have a family history of kidney disease. The doctors did not consider CKD as the potential toot of my problems and once diagnosed did not bother to notify me other then adding it to my medical portal list of issues I just happened to notice it when preparing for another specialist visit.
My mom had undiagnosed CKD and died of CKF the day we got her into see the kidney doctor.
The doctors evidently didn’t think that there was anything we could do to help so never bothered to diagnose her.
After 3 months of waiting to get her to the kidney specialist they looked at me and said she should be on dialysis They asked why did you bother to bring her in? She looks terrible! She died with in a few hours after our visit.
I didn’t realize it was hereditary.
I am lucky that I found out now.
Thanks for mentioning the anti -Infammatory aspect I wasn’t aware of the connection . Good to know I got a book on a diet for it as the rheumatologist thought I had fibromyalgia ( because of my exhaustion and foggy brain) he was going to prescribe pills.
I told him because I was diagnosed with CKD I decided to try to control it with diet because I heard that medications can negatively impact the kidneys. He said that sounded like a reasonable approach.
It is really sad that given that kidney disease is the 10th leading cause of death and there is no cure that the medical community would do more to screen for it etc
Best wishes to you I know dialysis is a terrible experience. Several of my friends have had to be on it recently. Best wishes to you hope you have some joy in your life it must be so difficult
Thanks for sharing your insights . I so appreciate it
Don't be too hard on the NHS. Most kidney Dr. don't know about plant based diet. All the do is wait and watch and oversee dialysis. There are MILLIONS of americans who have NO access to health care. If you don't have insurance you can't even get an appointment to get a diagnosis in the US. Emergency departments will only see uninsured people if they are bleeding out all over the floor. I was uninsured in college and graduate school and had severe chronic ulcerative colitis. I could afford the meds, but couldn't afford the Dr. to get a prescription. After being turned away from every gastro I called, I went to an urgent care who told me to go up to gastro and they would call and get me an appointment. I was severely hemorrhaging, couldn't eat or drink anything, anemic, doubled over in abdominal cramping and they wouldn't give me an appointment. I dropped to the floor of the waiting room, crying louder and louder, I started repeating over and over, "you are going to let me die because I'm poor." Finally the Dr. came out, asked what was going on and the told him I was a student without insurance in the middle of a horrid UC flare. He told them to give me an appointment to shut me up and get me out of there. It took me two years of paying $25 a month to repay that ONE Dr. visit. Don't take the NHS for granted. The US is the only wealthy/developed/first nation/high income (whatever you want to call it, they are all bad terms) without universal basic health care. There used to be 2. After apartheid fell and South Africa starting giving basic health care to black folks the US stands alone, uncaringly alone. We have infant and maternal mortality rates of a poor, developing nation. We have lower life expectancy as well. Check out U.S. Health Care from a Global Perspective, 2022: Accelerating Spending, Worsening Outcomes commonwealthfund.org/public... Health care here is outragously expensive if you can get it, and millions can't.
Yes I have read about the USA health system. It is absolutely shocking, that people are treated based on their financial status. I'm sorry if you think I was bashing the NHS. It was not my intention. I do know how lucky we are, believe me.
Unfortunately since I was diagnosed, my rose tinted glasses have disappeared. Which isn't easy to say as both my mum and sister were NHS nurses.
However it is extremely frustrating, when doctors just go through a tick the box protocol. When I asked about what I should exclude from diet, I was told...just keep eating a normal diet. Nothing can reverse the damage!! The renal nurse scoffed when I asked about a plant based diet. She said I needed to eat more animal protein, as I was losing so much through my urine!
Now I am just being honest and giving my personal experience of the NHS and its staff. If I can guide or offer advice to a newbie, then I will tell it how it is, warts and all.
Yeah, most kidney doctors and nurses in clinics around the world say there is nothing to do. I told my Dr that I thought clinical practice was 10 years behind what medical research shows. He laughed and said, more like 20-30 years behind!
Thank you for this post, you have given me a lot of motivation.I am stage 3A too, diagnosed just last year. Re blood tests, I have done exactly as you said and now have 2 copies from my GP, I am in Scotland. I may be the exception, but my new (young) GP ( NHS) has been amazing. Referred me to consultant as I did not have hypertension or diabetes and she was scared she was missing something, I got a scan, blood test etc all initiated by my GP. Consultant clarified I have CKD due to scaring in 3 areas of my kidney following to serious infection many years ago…plus my use of ibruprofen and trimethaprin when I had past UTI’s. No need to be followed up by consultant for now obviously….hopefully not for a long time.
GP still monitoring my BP as she’d like it ‘tighter’ for long term gains I expect, and has prescribed Losartan. I will also get an annual review but as far as nutrition, reassurance, the truth and good common sense advice, I get more from this group than anywhere. Exercise and correct kidney friendly diet is key for me and the changes I need to do. So I am now doing my best and taking control , you’re so right Ziggy I must do this myself….that’s even with a great GP. I don’t even think about this 10 year malarkey, we do what we need to do and live our life with the best advice we can get and we need to put it in to action, so thank you again. You’ve spurred me on x
Hi! Your story sounds a bit like mine, but I was a bit younger than you. High doses of anti-inflammatory medication are what caused my kidney ( one was never viable, from birth) to collapse. My GP had omitted to do regular renal function blood tests, and I found myself with a filtration rate of 11, with a blocked ureter. They stented the collapsed section, and I have to have the stent replaced every 9 months. I came straight off all medication, but the one kidney failed two years ago, and I am on dialysis.I would, like the previous response you have had, advise you to find a nutritionist who can advise you.
From what I read, plant based diets are the best. Avoid red meat, avoid salt ( for your blood pressure as well). Ideally, you should have regular blood tests to see how you are doing. If your function is down, you need to keep an eye on your potassium and phosphates levels - they can affect the heart.
With luck, and good management, you should be able to delay dialysis for a good ten years.
Hello Mich1949, I hope you are well and thank you so much for your reply. Indeed there are similarities, my GP just signed off all repeat medications without question. With the right advice you would not be where you are today, very poor service. You have certainly been through it and I wish you the very best of luck. I have just finished my first Quorn based panini, bloody delicious. Thanks again for your help and support. 👍
Like so many, you've been sadly let down by the medical profession and I feel for you. But I presume the "10 year" prognosis must be based on patients that also rely on medics rather than nutritional therapy which is better.
Had my mum done so >6.5y ago when her eGFR was 36 post-nephrectomy, she may have been expecting dialysis in the next 3.5y. Instead we would be disappointed next month if she's not maintained the eGFR of ~60 which it's been around for the past 2-3y. Note: It's possible its dipped following recent covid & shingles but we would then strive to get it back.
I have always been told no Ibuprofen for kidney disease not good for kidney advice is eat healthy less red meat if you can handle plant base they say that better for kidney disease and excercise every day excercise and watching what I armte help me stay off dialysis until I was 67 I started this year when they thought five year ago I would be on it.
Hello Beachgirl132, nice to meet you and thank you for your reply and advice. I was quite stupid to take so much ibuprofen and should have know better. I am seriously looking at vegan / plant based diet will change my eating habits. My exercise consists mainly of walking 5-6 miles 4 times a week and I will now increase this further.
Sorry to ask but when were you diagnosed and at what stage? Well done for delaying the dialysis I really plan to do the same. Thanks again for the message and encouragement. 👍
My kidney disease is inherited nothing I could do about that polycystic kidney was diagnosed in my 30s going into stage 2 I stay in stage 3 in my 40s and 50s 60 stage four came and stage 5 not but I use to walk mile or two every day and I was in the pool constant
Thanks for replying, sorry to hear that but great you did all you could to manage the condition. I will absolutely continue to exercise and thank you for the encouragement. Have a great Christmas and new year. 👍
it is frustrating that our medical system don’t educate people on how to slow the progression of CKD. Everything I learned has been on my own and through classes offered by NKF. Thankfully through diet changes(v going to plant based) and exercising 8-10 mile walks a day- I have been able to keep my kidney function at a EGFR between 17-20 for three years. I wish nephrologists would see the benefit of education and the possibility of keeping people off the kidney transplant list and off dialysis. Best wishes to you for improved health in your journey.
It really is indeed very frustrating and a great shame. It is now very clear to me that the lack of advice I received is not uncommon. The advice on this forum is extremely helpful and will change my diet accordingly.
Well done with keeping your eGFR steady you certainly worked hard for it and 8-10 miles a day is bloody impressive.
I can't believe your doctor gave you a 10 year prognosis - that is really horrifying, and how discouraging for people that don't take charge of their health and do their own research. I am 56 years old diagnosed with stage 3A with an eGFR of 53 (got as low as 51) a couple years ago. Like you, mine was Ibuprofen and chronic dehydration. I felt a lot of guilt and shame that I had done this to myself, but channeled all that into research. I went back years looking at my labs and found that my eGFR was 73 in 2014 and had been declining steadily and no one ever raised a red flag. My primary sent me to Neph to see why it was happening and my Neph sent me to a Registered Renal Dietician who works at our local dialysis center. She was on a mission to get people from ever ending up in that center. She put me on a low sodium, low protein Mediterranean diet, just modest amounts of fish, chicken and eggs, lots of fresh vegetables and whole grains. I decided to try and go whole foods as well and I think eliminating a lot of processed foods has really helped my overall health too. I have very slowly gotten back up to an eGFR of 66 as of my last labs two weeks ago. My Neph said that the Ibuprofen sets up an inflammatory storm in the kidneys that sometimes wont stop even when the toxin is removed, and we wouldn't know if they could improve until I got off the Ibuprofen and tried, so the Dietician had me really focusing on anti-inflammatory foods, so I eat a lot of berries, drink hibiscus, turmeric and ginger teas. Because I don't have any other contributing issues (high blood pressure, diabetes) and the rest of my labs were good, I did not have to be too careful - so you need to eat to your labs - lots of veggies and grains that should be good still have high potassium or phosphorus which can get hard for the kidneys to filter out. It took 4 weeks of food logs and two visits and a couple phone calls with the Dietician to tweak my new eating plan until I had it down. At first I went too low protein and salt and started to feel bad. I used app MyFitnessPal to track my food for a few months before I felt I could do it by estimating instead of measuring and tracking everything. At some point I expect to level off, no one believes I will get up to the eGFR of 93 where I should be, but I have already added possibly a decade on to my kidneys and I'm not stopping. This is the new normal eating and lifestyle for me. The silver lining is that I had to find new ways to manage pain and yoga has become the new Ibuprofen. I also do acupuncture for pain, inflammation and kidneys. This has all helped me treat the root problems rather than take Ibuprofen for the symptoms. I wish you well, and can see that you are already on the path to your own health discoveries. Merry Christmas and bless you and your family in the New Year!
Hello Svnaia, thank you for message and very sound advice. It seems to be a common theme here in the UK, no real help until you reach stage 4. With all the advice and tips I have received I am looking at at a plant / vegan diet going forward and drinking lots of water. I will never take ibuprofen or PPI’s again.
I am also looking at a private consultation so I have more data and labs that I can then work with and tailor my diet. I am specifically interested in my protein levels.
The tingling in the back of hands and the top of my feet, below the toes so I am walking more, Yoga sounds like a great idea for improving flexibility and joint pain.
I have to say well done for taking such control of your condition and this provides further encouragement. Thank you again for your message and excellent advice and support.
Have a very merry Christmas and a happy and healthy new year. 👍
In the 80s my doctor had me taking ibuprofen in large quantities. It resulted in some GI Issues. I did not think of the connection all of these years later.
Appreciate the positive insight into your ability to not only stop the progression but reverse it.
I have a book that I am reading that states that you can achieve positive outcomes by diet changes and lifestyle changes. It says that many in the health care system don’t support that approach and feel it’s invalid.
Good to see that it is legit. I am just starting my efforts to help with my disease. Your input helps eliminate any doubt.
I do think that I am lucky, not that I didn’t work hard, but many on this forum also work hard and don’t stop the progression. My medical team also appeared more enlightened regarding diet and lifestyle changes. Now that researchers in the UK have identified the protein that they believe causes the kidney inflammation to continue non-stop ( and cause more and more damage), maybe they will be able to turn it off and save thousands of people from CKD one day. Someone posted a link to the research a while ago. But maybe it depends on why we have CKD to begin with. There is just still so much we don’t know. However, I know that I have benefited from my lifestyle changes, and maybe I am preventing further illness down the road, so it’s all worth it. Good on you that you are doing your research and taking control. Happy New Year!
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