Hi. I was recently diagnosed with stage 3a CKD with my GFR at 56. It was 57 6 months ago. I am 44 years old, no other health conditions. My nephrologist said that at my age normal functions for my kidneys should be GFR 85. The cause of my CKD is unknown so far. I don’t have diabetes or high blood pressure and it’s not genetics. I am a Caucasian female. My nephrologist told me to cut down on salt intake and to drink more water. I have to do all kinds of labs and tests to do before I see him again in 2 months. It is not known what is causing my CKD. Is there always a cause? think my main question is is CKD always progressive. Meaning will it get worse and not better. I have read varying opinions about this. Some say it can be reversed which I don’t think is true. Some say it can be stopped by medications and diet and some say it just progresses but unknown how fast.
Is CKD progressive and what are the possibl... - Kidney Disease
Is CKD progressive and what are the possible causes?
Hey Jaimie... Just my unprofessional opinion on what I've been told since my diagnosis a year ago. The damage to your kidneys cannot be "repaired" however the efficiency by which your kidneys function can certainly improve thus improving your GFR. Diet, exercise, lifestyle and overall health obviously playing the biggest factors in moving forward. I believe we can definitely halt the progression of CKD and allow us to live productive lives moving forward. Good luck with things. This site is definitely a great resource in helping us all to do that.
I am in exactly the same situation as you. I was diagnosed 4 years ago at 46 years old with GFR 56, no diabetes or high blood pressure, at the time I had a kidney scan and that was fine, apart from a very small aml on my left kidney. I was referred to the renal clinic, they told me sometimes there is no reason and that I could have a biopsy, but he didn’t see the point as it wouldn’t change anything. I have gone down to GFR45 in the past, but my last bloods I was GFR50. Renal clinic don’t want to see me again only if I reach GFR30. I understand how you feel. I hope you get some answers.
I know that medicine and services are different in the UK, but I would chat up your GP and make him/her aware of your labs and GFR ; especially your most recent labs and what you were told in the renal clinic.
Perhaps he/ she they will be able to refer you to a consultant and some assistance.
My close friend lives in the UK - her GP has been a big help with her kidney care and getting her to a competent consultant.
Blood pressure, albumin, creatinine, protein spilling in urine, sodium, potassium, phosphorous should be carefully monitored.
CKD can't be cured, but the progression of the disease can be slowed down or halted.
If the renal clinic is not willing to see you until you reach 30, they are not doing their job.
Slowing down the progression of CKD is a process.
A low sodium ( 1200- 2000mg) low protein; eliminating red meats with chicken, eggs, beans being preferred, low potassium and phosphorus diet is preferred. These are based on labs.
Avoiding dark colas, aspirin and pain killers and monitoring are key as well as drinking plenty of water and getting some exercise.
It is a lifestyle not a diet, actually.
Avoid prepared foods, eat a lot of fresh or frozen vegetables such as cabbage, onion, peppers, cauliflower, mushrooms, parsnips, squash and broccoli if your potassium is within limits.
Roast, grill or steam with condiments which do not contain salt such as onion, garlic powders, smoky paprika. Air fry with a tad of olive oil.
It also includes fresh fruits such as apples, strawberries, blueberries, rasberries and even some pineapple.
It doesn't mean stopping living, but it is tweaking what is eaten.
I will send you a few links on diet to give you some ideas as getting to a renal dietician may be a problem.
Please reach back as we are happy to support and interested in how you are doing.
Phosphorus and Sodium:
Thanks for all the diet info. and links. That is very helpful.
Hi to Goldie and Jaimie, No thanks needed. Diet, exercise are key in keeping as healthy as possible.
I know that in the UK, things are different regarding seeing a kidney consultant - forget a renal dietician. A lot is pressed on the GP.
I am glad that this was helpful.
Please reach out to any of us at any time as we are happy to support.
You are among friends here!
Thank you so much for the links.
I have found that doctors don’t seem to be interested. I have to call to remind them my bloods are due and never get told my results, unless I phone and ask.
It’s really helpful to read other people’s experiences and advice on here and thanks again for the links x
No thanks ever needed; my pleasure.
You have come to a community of wonderful, compassionate and knowledgeable people who are happy to share and support.
Honestly, if you feel that your doctor is not listening to, communicating with you or dismissive, consider looking for a GP who will meet your needs and give you the best care possible. You don't need the extra stress that this practice is presenting to you.
I realize that getting a consultant referral in the UK is not simple, but you can enlist the services of another GP in the medical system.
Ask friends who they see and if they are pleased; just an idea to help you find someone competent.
Give it some thought. I did it and have never been sorry.
Stay safe and let us know how you are doing. I know that things are far from ideal in the UK right now.
It will all be good. It is a process!
That’s what is really a puzzle- why doctors don’t seem to care. I think it’s burn out / they have just run out of empathy & just fall back to textbook intervention & distance themselves from the patient since they don’t know how to treat the underlying problem. So we have to rotate among them so when one gets burned out, there is another to fill in. In the end they are reacting as would be expected when confronted with a disease they are not sure how to cure. They give up & work on the ones they know to compensate.
I believe any disease can be cured but it’s like research - you have to study & evaluate everything- diet, mood, behavior, sleep, etc to see what symptoms are helped by what intervention. Never give up. But be flexible & if one path is not working be ready to adjust your theory fast & get as many opinions as possible until you get one that works. Read, read read. Keep records of everything- drugs, amounts, times, food, diet, etc - you never know when you will need them to check on why you are better or worse. I believe anything that improves functionality is a cure. Maybe a partial or small one but a cure & should be explored.
Hi Bond- 007, Unfortunately there is no cure for kidney disease; only to learn ways to stabilize it and prevent progression.
We here are all readers and researchers as well who listen to the science.
Diet, water, exercise, monitoring of BP, diabetes and watching labs are key. Avoiding dark colas, NASID's such as Advil and Motrin as well as red meats and high sodium foods.
One thing...we never give up hope! The heart and attitude are the key elements.
It's changing the lifestyle.
Improvement is not a cure; it's a blessing which can come via care and work..
We can do it!
Stay safe and positive!
I couldn't have said it better. If there was a cure we wouldn't have this community. Perhaps someday, but until then..
Mr._ K, Thanks!
Everyone says there is no cure. But we all hear of people with low, low numbers making a come back to the high 70s or low 80s, getting off of dialysis etc. To me, this is a cure. Most of these people aren't teenagers so they don't need numbers in the 100s. You can improve. Not just stop this disease from progressing further.
May I clarify please.
1. At what level of eGFR are these people starting dialysis?
- And with natural intervention (diet, etc.), they are able to bring it up to 70 - 80?
2. Do they have any other medical conditions while doing dialysis?
- Did this medical conditions also went away after stopping dialysis?
Need a little more information please so I can understand better. Thank you.
nice . thanks too.
Goldie13, Thank you for your input. It helps a lot knowing that someone my age is in the situation I am. I guess what I don’t understand is that if renal disease is progressive and permanent then why would the GFR go back up. Does that mean that your kidneys are working better? Very confused 🤷🏼♀️
GFR is a snap shot at the time of the lab. That is why labs are done over a period of time before a true diagnosis is given. And even if you have a low GFR once does not mean it cannot go back up. It depends on so many things, even as basic as how hydrated you were or if you did a lot of exercise the day before.
Boy do two great minds think alike. Hope that you are doing well.
I’m no expert but I don’t think it means your kidneys are working better, it’s probably more about things on the day..dehydration how your feeling. But I’m not actually sure.
I can't believe renal have said they don't want to see you again until you reach GFR30 , my GFR is in the 40s and I am seen every 3 months , my CKD has been caused by lupus damaging my kidneys don't know if that makes a difference but I still think you should be checked regularly , I would get a second opinion , I would have thought if you had a GFR of 30 you would be very ill .
Same boat here. I am sorry that you have to go through this. In Canada they don't send you to a nephrologist until you are at an eGFR of 30 or below. Very frustrating.
I hope you are able to take some of the suggested steps to improve your kidney function.
Worrying probably exacerbates the problem - but I am a worrier, too. I get it.
I am a registered nurse, and when I was in nursing school forty years ago we were taught that kidney disease was progressive. But I am here to tell you that this does not have to be so! Please google current research, including a 2014 Stanford University study that shows kidneys regenerate and repair themselves throughout life. I am personally finding this to be true. My GFR went from 28 in February 2020 to 56 just yesterday - my internist did another double take when she looked at the numbers! After I learned about the GFR of 28 I made some changes, including switching to a Whole Foods, Plant Based diet. Animal protein is harder on kidneys than vegetable protein. I also avoid NSAIDs and any other medication that may be harmful to my kidneys. I drink lots of water, limit salt and potassium, and do aerobic exercise daily. The only supplements I need are Vitamins D3 and B12. As you can see, there is hope! I am here to help and support you. Best wishes.
Great advice- same diet i am on & my mother. Whole food plant based but it is low on iron & if you are anemic have to get that Hg up & iron supplements may be needed, the vegetarian diets don’t have heme iron that is more easily absorbed.
Good advice to monitor the Hgb. I am not currently taking iron and was surprised to see my Hgb is higher than it’s ever been - 14!
I know when I found out that I had CKD, the nephrologist did a kidney biopsy to find out the cause of my disease. I too am not diabetic nor did I have high BP till I was diagnosed. There is no history of kidney disease in my family. My cause was found to be strep throat I had as a child. About 2-3 months later I was in the hospital with nephritis. Some 30 years later I was in kidney failure. My diagnose was FSGS - focal segmental glomerulus sclerosis.I think there are as many causes of CKD as there are people. As Mr_Kidney suggested, stay hydrated, and maintain a kidney friendly diet and do not use any NSAIDS.
CKD cannot be reversed, but as many on this site have done, you can stabilize or at least slow the progression through diet, etc.
You may find kidneyschool.org helpful Blessings
Davita.com also now has their Smart Classes given virtually - their class is 90 minutes and great. Take a look.
I just read your first post. Did your Doctor rule out PKD? That is what I haveWhich is hereditary. Polycystic Kidney Disease. I did not have blood pressure or Diabetic issues. No one in my immediate family had kidney problems. Years later found out about an aunt who had same issue.
He didn’t rule out anything yet. I’m actually having a biopsy on Thursday. He said it could tell him what is causing my CKD.if anything. He said sometimes there is no cause. But he also said that it could tell him how to treat me and how fast it might progress.
I knew I was CKD3, at 42 with 6 monthly blood tests but I have had no tests done for the last 18 months due to Covid, GP didn't want people at the surgery and it took days to get even an email back. Now a blood test shows me to be a stage 4 with a GFR of 19 so now stage 4 and I am experiencing issues with breathlessness which are truly scary.
GP now can't do enough for me, even phoning on the May bank holiday to explain some the problems I have now and to plain scare me about the future - does anyone think that if I had been getting tested at the right time I could have stayed at CKD 3 or will you always progress through the levels?
Wow. From 42 to 19 in 18 months is pretty significant. I wonder if you are on a kidney friendly diet? Low protein, no red meat, low sodium, no processed foods, more water, etc. do you you have a diagnosis of an underlying disease? Have you taken and medications or done anything different in the. Past 18 months. Regardless, getting tested more often (I.e every three months) would not have made a difference in your GFR score unless your nephrologist put you on special medications for treatment. Do you have hypertension, diabetes, lupus or any other medical problems? I unfortunately can’t answer your question because everyone is in a different predicament with their ckd and I don’t know enough about you and your situation. I can tell you to follow up with your nephrologist ASAP. Good luck an keep me updated.
Apparently there is not always a cause, but the diet is the biggest culpert.
Or doesn't help the situation as it makes your kidneys work harder to filter waste.
Hi JaimieL, I am in a similar situation. My doctor is doing a biopsy on Friday, but he said he may not know the cause. I am in my 40s and my eGFR went from 70s to 40s over about 5 years but no one informed me. My doctor said he was not worried. I really don't understand that because he said my eGFR should be in the 90s. I have the same fears that I can not slow progression of something that is not understood. However, I am moving towards a plant based diet, and I already exercise. I am not expecting any conclusive results from my biopsy, but I'll be happy to share what they find out. Good luck JaimieL.
Hi Sarah. I had a biopsy about 4 months ago. My doctor said that on the sample taken that no disease was found. Last week I went to the nephrologist again and my GFR was 54. My doctor said that there is no reason to focus on what caused the damage to my kidneys but to focus on keeping my kidneys working at the rate they are now. He said maybe we’ll do another biopsy in the future. He says d just focus on my diet. I guess that is good advice but idk if knowing the cause would help prevent it from getting worse? Good luck with your biopsy and def let me know your result. 🙂
It's kind of Alice in Wonderland territory. No disease is found yet you have a chronic disease. I would have thought there was every reason to focus on the cause, in addition to preserving what you have. Preserving what you have .. in a falling market ..isn't the best way to preserve what you have.
I can understand if there was, eg, scarring found and the cause could have been a multitude of things. But no disease found and no idea what causes loss of eGFR when no disease is found doesn't sound right.
Would I be right in saying that the doc wasn't too specific about the diet to be focussed on? Watch salt, limit red meat perhaps?
Thank you JaimieL! I will definitely let you know when I get my result back. Hopefully diet changes can help us both slow progression, cause I don't know what else to do.
Hi JaimieL, so I got my biopsy results. The report says " focal acute tubular injury." I haven't spoken to my doctor yet for him to interpret. But I am confused by the acute part, since my GFR has been low for 7 years now. He already diagnosed me with chronic kidney disease. I don't think I will get any answers to what caused injury, since my doctor said he doesn't understand why I would have this. The only thing I can think of is I have low blood pressure. Honestly, I am worried he will do nothing but monitor. I hope somehow your kidneys improve somehow JaimieL. This is all really hard.
Hi Sarah. That is a very strange diagnosis since acute injury means temporary but can be serious. Im curious why your doctor wouldn’t contact you immediately to treat it? If it were me I would make a call to the nurse and ask for an explanation from the nephrologist. When I got my biopsy I told my doctor to call me as soon As he has the results and he did. Sometimes you just have to be insistent. Please let me know what his explanation is. I’m very curious. Hugs to you!
Thank you JaimieL Your right I should reach out. He always waits to talk to me about results until my appointment. My next one is Oct 20. I'm starting to think I need to look for a more attentive doctor. I'll definitely let you know what he says.
Hi JaimieL, I talked to my nephrologist today. He said my biopsy suggests blood pressure issue, and since I have low blood pressure that is most likely the cause. So now I have to monitor my blood pressure for a while and then go from there. He said high salt, low protein diet for me. I guess I'm different than most with CKD who have high blood pressure and need to reduce salt.
Alcohol, smoking and coffee raise blood pressure too. Along with laying around on a sofa watching TV and avoiding exercise.
You lucky thing...
Hey. That’s weird. I have heard that high blood pressure would be a contributing factor but not low blood pressure. That sounds like a good problem to have. Lol
Yeah, never heard of that. Then again the KdIGO mentions being careful about going to low in BP management as there are dangers (dunno what). Seemed to be on the diastolic side: they figured to let the systolic be even above optimal if it meant maintaining the diastolic at >70. That was KDIGO 2012 where sys was to be managed to 130. In the 2021 guideline they are saying sys ought to be.managed to <120. Didn't read to see how low was too low.
HI Skeptix, do you have a link to the KdIGO? I'm not sure what that is and I would like to read it. My doctor said he was thinking my BP should be kept as high as systolic 130, once we figure out what my blood pressure is doing. I have to start keeping a record.
You might be as well to read it all but the section "what should clinicians do" is where I saw this bit about maintaining diastolic pressure at 70 or more even at cost of allowing systolic to rise. That was 2012 viewpoint.
You'd have to read the 2021 KDIGO to find out (perhaps) why the change from the 2012 position (if any on diastolic and the shift from 130 to 120 targeted systolic)
One other thing: it'd be worth getting a 24 ambulatory BP done. It'll be more accurate than home or clinician single measures. I dropped a full 10 points on systolic compared to averaging a large series of home measurements using a calibrated omron and doing it properly.
Measure twice (measure accurately), cut once (make the right intervention)!
Must be possible to get something specific on low BP causing kidney damage, either on the Web or from your doc. What's your BP anyway?
Thank you so much Skeptix, I will read this. My doctor is going to do a 24 BP done in December and I'm suppose to do some BP monitoring at home. I have to buy a BP machine and all the reviews online have at least a few people reporting the machine is inaccurate. So, I'm not decided on what model to get. I have seen my systolic in the past as low as 70s and as high as 130s, My guess is I average around systolic 90s. I didn't pay as much attention to the diastolic. I will now. Thank you for your help!
If you could dedicate the day to it (what's what's day), you could parallel your 24 hour ambulatory readings with home readings. That is, take a reading on your home unit a few minutes after the 24 hr unit reads, using same arm. Only waking hours of course and maybe 1 per hour (the 24hr might be set up for two readings an hour)
You'd have reasonable data to check your home unit against.
Or invest in a 24 medical grade ambulatory and keep a closer eye on things. Pricey so only if you money to splash. Nighttime reads are, I gather, more important than day too
Avoid a device called Aktiia - a cuff worn device that works by scanning your arteries rather than pumping up a cuff. Utterly useless.
That's low alright. My wife's around the 100 mark but doesn't remark on it re symptoms. And her kidneys are good!
CKD can't be reversed but the progression can be slowed down. Your doctor should be running diagnostic tests to see if there are any abnormalities with your kidneys. Diabetes and hypertension are the two leading causes of CKD and of course there are other causes that can be identified by labs and diagnostic tests. A knowledgeable nephrologist should be checking your labs and running diagnostics to find out. Has s/he told you that you need to stay hydrated with water, do a moderate exercise regimen, and maintain a kidney-friendly meal plan, stopped smoking (if you do), and cut way down on any alcohol consumption until you know for sure. Avoid processed foods, red meat, cured foods, and any foods with lots of sodium, at least until he gives you more definitive answers.Has the nephrologist taken a full medical history of you as well as a full family medical history? Have you provided an up-to-date list of all medications you take, including any OTC meds and supplements?
Remember you can always get a second opinion by going to another nephrologist?
Best of luck and let us know how things turn out.
Mr_Kidney. My answer to all your questions is a big YES. He seems very knowledgeable. He said the plan is to get a baseline and to find out what is causing the kidney damage through more labs and tests. I gave him a list of my meds, my family history and my medical history. Based on that he doesn’t see a cause so far. I don’t have diabetes or high blood pressure and it’s not genetics. I don’t drink alcohol but every once in a blue moon. So... idk. I guess I’ll find out more after all the lab work and the time I see him. Thanks for your reply!
Good to hear. Let us know how things turn out.
Hi Jaimiel- by any chance do you take NSAID's (advil / aleve,etc) If you do , stop!
But always check with a Dr before stopping any medication or even just aspirin. Did you know that stopping aspirin after using it a while can give you a heart attack or stroke & some drugs are more dangerous when you stop them then when you start them, eg benzodiazepines which no one should take anyway at any time /very dangerous when stopped if you can stop them.
What MR Bond - Jame Bond said