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
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!
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.
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..
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.
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.
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.
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.
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