Hello, i'm new here so thought i'd mention a little about myself. I'm ashamed to say i've been overweight for many years (have a very sweet tooth) and have taken tablets for high blood pressure and high cholesterol for many years. I'm a carer for my daughter and also now my husband since he had a knee operation which went wrong.
I live quite a stressful life and have been suffering from anxiety too as i've been feeling unwell (palpitations, numbness, feeling tired etc) for awhile, so went to doctor who gave me form for another blood test. (A year ago my blood test had revealed my kidneys weren't functioning 100%. I was told to have 6 monthly checks and as the doctor didn't seem concerned i didn't think too much about it.)
Last Thursday was told doctor wants to see me re. latest blood test. I was told i have stage 3 CKD. The doctor said to eat a balanced diet and come back in 6 months. He said it can't get better and next stage would be under the hospital.
I got home and started reading up on it as it has left me feeling shocked and worried about the future of my family should anything happen to me. Is there a special diet sheet that tells me foods/drinks that are safe, and ones to avoid. Is there anything else i could/should be doing that'll help (i started dieting about 6 weeks ago).
Thanks in advance for any help, and sorry for long post
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puzzler4
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Welcome to this group and thank you for your message. You seem to be coping with a lot at the moment. You obviously have a good awareness of how to help and your doctor sounds quite supportive.
Our members are very knowledgable and supportive so may be able to offer you more information and advice.
Hi there, the first thing to say is don’t panic! Despite what your doctor said, you can stabilise and even improve your kidney function with lifestyle and diet changes. Keep your blood pressure low, do some moderate exercise, avoid some over the counter medication like NSAIDs (eg ibuprofen) which are renowned for being bad for kidneys. Re diet, avoid processed foods, fizzy drinks and salt. Eat plenty of whole fresh foods, plenty of veg, moderate red meat, dairy and alcohol intake and drink water. These are general guidelines and some people need more specific advice depending on the cause of their CKD. If you’re in the UK you won’t get to see a nephrologist or renal dietician unless you get to stage 4, which you possibly won’t. The vast majority of CKD sufferers never get to the stage where dialysis is needed, and it’s entirely possible, even probable, that you may stay at stage 3 for years, especially if you look after yourself. I’ve been at stage 3 for nearly 10 years and have managed to actually improve my kidney function with diet. If you have more questions, please speak to your GP and people on this site are always willing to help!
I agree Julesboz I was diagnosed at level 3b and have been on a renal diet and prescribed exercise for 3 years, and so far the progression has slowed down. There is hope.
Thank-you for your reply. I shall take note and lose weight (which will hopefully lower my blood pressure) cut out all the diet cokes and drink more water. Also cut out processed foods etc. Hopefully when i go back in 6 months there will be some improvement. I'd never heard of a nephrologist until i came to this site, the doctor didn't mention a renal dietician either. It's encouraging to hear you've been on stage 3 for nearly ten years, hope it stays that way. Thanks again.
Well .... I think that your Dr should not come to the immediate conclusion of CKD on the basis of one blood test. Trends in these tests are far more revealing.
It would help if we knew some numbers - for serum creatinine, GFR, age, and any urine test results. If the Dr did not give any urine test results, he is categorizing you on the basis of only half the information need. Actually less than half. That is not, IMO, a responsible thing to do - especially for you - the patient. For instance if your GFR is only marginally stage 3, but you have no protein in your urine, then things might not be so bad at all.
Stage 3 CKD is a WIDE range of conditions and prognoses - so it really would help to know your GFR. Sorry, I can't point you anywhere - as frankly I am not sure you have been given enough information by your Dr to know what your situation is.
Please remember that any simple staging chart is a simplification of a complex (kidney) system, thst can have a wide range of meanings. Sorry that this has come up, however.
Thank-you for your reply. It had been mentioned before that my kidneys weren't functioning 100%, but this is the first time i'd heard about the stages. I don't know the numbers for serum creatinine or GFR (i'd never heard of them before) and i haven't had a urine test (age 62). The doctor just said eat a balanced diet and come back in 6 months. I think it has been caused by the pills i've been on for years for high blood pressure and cholesterol. Think i'll ring my doctor to find out more. Thanks again.
You should get them to tell you how all of this fits together and get yourbactual lab numbers or test result copies. It never hurts to keep your own copies of that information.
You don’t know whether stage 3 is a “real” reading, or if you have been in that range for a while. Also, stage 3 is a WIDE range of situations. To say that the next stage means the hospital is alarmist. You may never reach stage 4. And you don’t know how far you have to go to get to stage 4.
As far as medications go, they should know if they will harm your kidneys - though they should change the medications if they do. You mentioned that your BP was about 147/90. That is not under control. Then again, 120/70 is an extreme goal to shoot for beyond a point. They should try to get your blood pressure in a betterbrange, and I bet all you possible medical problems will be very much under control. Good luck.
Well yes, your blood pressure will come down with your weight if you are overweight to begin with. Ramipril is a angiotensin converting enzyme inhibitor - and at most doses is thought to be protective for kidneys. I don't know why your Dr. had you come off of it - what are you taking now for BP?
ACE inhibitors and a class of blood pressure meds called angiotenisin receptor blockers (ARB) will very effectively lower blood pressure and also protect kidneys. Some Dr's worry because these drugs can raise your creatinine and lower your GFR just a bit. If it lowers GFR too much, you get off of them - if not, you stay. I am on an ARB and it's great - doesn't affect my creatinine or GFR substantially. Lots of general practitioners don't like to use them mainly because I think they don't understand them.
Losing weight will definitely help. It will also help avert diabetes which is damaging to the kidneys also. It sounds to me like your Dr's are helping - but (as usual) can be a bit over-hysterical about some things. Good luck - and I think you will do well.
Jonquiljo what is your take on someone with a gfr of 52 creatinine of 1.49 but no blood or protein in urine and no other comorbidites? My neph thinks I can go for 30 years without treatment. What is your take?
You have a similar situation to me. I don’t know your age but I am 65. My creatinine has been stable in the 1.2-1.3+ range for at least 15 years. The trend there is stable. If you are stable, then you have much less to worry about.
A microalbuminaria test recently showed my albumin as “undetectable” (<5mg/L) with urine creatinine at 29.5 mg/dL. That is about as normal as you can get. This creates a paradox. My blood shows high creatinine, but my kidneysvare not leaking protein (judt like you). This baffles my Dr’s - and they can’t figure it out - and say, “don’t worry about it.” My interpretation is that for some unknown reason I have higher serum creatinine, but it may have nothing to do with kidneys. Some meds can raise serum creatinine and not affect kidney function - or interfere with the assay for creatinine altogether.
Either way, I’d say your numbers are fine, if you keep getting monitored by a Dr and serum creatinine is stable - not going higher and higher. Lots of Dr’s have said to me that leaking protein in the urine is a bigger indication of a kidney problem than serum creatinine. You are not leaking protein, so that is a lot less to worry about.
I am 65 - not sure how old you are. I keep fit and all of these things combined do not worry Drs. It sounds like your Drs are not worried either. If you are over 45, then 30 years puts you at 75. Like myself, I wouldn’t worry - but just take care of yourself. I get the impression that kidney medicine needs a bit of progress. That makes me err on the cautious side. But worry? No. Good luck.
Thank you so much for your response! This diagnosis has been like a kick in the teeth to me I cannot tell you how utterly stressful I have felt as a result but your words have been in encouragement and other words have been an encouragement as well so thank you again
Well in hindsight, if you are 56 - then you likely didn't even need a nephrologist. BUT, it sounds like the nephrologist is spot-on. He/she many be a bit pessimistic if anything. 30 years sounds entirely doable. If you ever start spilling protein, I'd be a bit concerned. But I suspect you may never do so.
Frankly, if you have the same oddities that I have - and appear to do so - your creatinine may simply be something that is high "for you." Check older blood tests from a few years back and older (if possible). If you have been trending high creatinine for a while, then I think you could go a very long time. That's what lots of Dr's are afraid to do. Look at blood labs from the past 10-20 years if you can access them. Unless you quickly raised creatinine (and lowered GFR) in a short period of time, then this is just your normal. Trends are the major thing to watch for - always - not just kidney disease. If something changes suddenly and substantially - then that indicates there may be something to look at. If things barely change over time - they are your normal.
I really don't like the use of serum creatinine as a screening tool for CKD. It is an indirect measurement - creatinine is totally unrelated to kidneys. Liver function is measured by looking at breakdown products of liver in your bloodstream. Kidney function is determined totally by measuring how much creatinine you have left in your blood - assuming the kidneys should remove a good deal of it. There are lots of possible reasons why an "indirect" measurement like creatinine is not very reliable. You are likely a good indicator why. You may have high creatinine (and lower GFR), but the real direct measurement of your kidney function is spilling protein - which you DON'T do!
Sorry Dr's have scared the hell out of you. They did for me also. I did a lot of reading and saw all these kidney scales and measurements as a total oversimplification. When you don't fit (like you - and me), they often don't know what to say. Well, I would certainly calm down. Don't go all unhealthy (in general) as your body will wear out with time. To quote one of my Dr's, "you have a slight insufficiency in kidney function - so don't lose sleep over it."
Jonquiljo you have been a massive massive help to me!!!!!! I have really really really down thinking dialysis is in my near future. Thank you for so kindly responding to me You can't know how this has lifted my spirits
You’re welcome. Just don’t do what I did - life after “50-something “ needs to be done in moderation and with regular medical checks. I didn’t do that, and ran into a whole bunch of medical problems this year. It will take a while to sort them out.
I agree with julesbox and orangecity41. You can get better and you can do a lot to help yourself. Lots of info about diet:
• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.
• Renal Support Network provides many support and advocacy services including a phone support line.
• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.
• National Kidney Foundation provides a portal for patients too.
Also, scroll through the related posts at the right. There is much valuable information there. When you run into Mr. Kidney's name, do a search (click on his circle) for his posts. He has helped many of us immensely.
Thank you for your reply. It has been really helpful finding this site. When i got out the doctor's i just felt dazed, thinking i had a death sentence hanging over me. I will look at all the advice from everyone and follow it, thank-you.
You are feeling what we all felt. Fortunately, we have done our homework and educated ourselves and are doing well, even though the medical field does not seem to be able to give us information that would help us even more. Yes, this site has been very helpful to many of us.
All the other posts already gave you the appropriate advice. Stage 3 is NOT a death sentence. You need to understand what caused your kidney to be less than it should be. If was blood pressure, then control it and eliminate further progression, for example. Usually a scan is taken to see if there is anything in or on the kidney causing the less than "normal" result. As someone said stage 3 the prognosis is wide, depending on many things. Cause. Level of stage 3. Stability over time. Medications. Other diseases (diabetes), etc. And why your doctor mentioned that at the next stage (4) you would be in the hospital seems hardly the case. Also as someone said just one bad test is not enough. It would be useless for any of us to tell you not to worry. When you hear this term that you have kidney disease, it sounds so overwhelming. You will learn as time goes by that many doctors and obviously patients, have found the entire CKD classification system wanting. It sometimes is used so strictly that you could almost stop any person on the street over the age of 40, do a blood test, and classify them as some level of kidney disease (1,2,3). A lot of other factors are important. Example if you are stage 3a, no protein or abnormalities in your urine, have your bp under control, etc., it is not terrible.
Thank you for your reply and words of encouragement. Yes i was overwhelmed, I came out the doctor's feeling dazed/anxious but thought if it were that bad why am i not having more tests i.e. scans, urine etc. He said my blood pressure was under control with my tablets 147 over 90 but that still seems a bit high to me. I'm glad i found this site, it is giving me a better understanding of it all, and knowing i'm not alone. Thanks again.
Yes, 147 over 90 is on the high side. It would be helpful to find ways to relieve your stress. Even just a few minutes for yourself can do wonders. Also, many people have "white coat hypertension
--a syndrome whereby a patient's feeling of anxiety in a medical environment results in an abnormally high reading when their blood pressure is measured."
I take my bp readings every evening and for the most part they are low. When I see my regular physician, my readings are low. When I see the nephrologist, my readings tend to be higher. I have found one thing that helps is to arrive a few minutes early so that I can catch my breath. Also try deep breathing exercises--4 in, hold for 7 and breathe out for 8. If does help. I often used that when I was still working and out in traffic.
I don't think it's white coat syndrome, as i've taken it myself and my friend did it round her house too. I'm a born worrier and i'm caring for 2 disabled people (husband and daughter) so the stress is always there and it'll get worse as i get older (i'm 62), as i really worry about my daughter going into care when i'm no longer around as you hear such horror stories. I have a German Shepherd that i love taking for walks which helps a bit. I shall try the breathing exercises, thank-you.
You might wish to consider to get a second opinion about that blood pressure. My doctors would not accept 147/90. I find them realistic. They all hate that everyone has the false impression that all people should be 120/70. Our blood pressure changes with age (increases). I take mine twice daily. And they tell me they prefer about 130/72. If you take it early in the morning, within the first two hours, it is natural to have a higher reading as the body "rev's up" (as they put it). They say the 130/72 should be my high. But not to panic with occasional readings that are higher. And only to call them and get an appointment if I record anything above 140/80 for more than one or two days in a row. So 147/90 seems to me high. Drink lots of water. This helps in addition to medications to reduce pressure. As lowraind said you will typically get higher readings at the office. So get a machine (does not need to be an expensive one) and check it yourself at home. When things are calm. I bet you will be in "normal" range.
Good for you. When I started the doctor had me take it 3 times a day for about a week, then reduce to 2 times a day. Then bring him a list of my results after 2 weeks (ended up to be 3 weeks). He told me if I take it immediately first thing in the morning, before breakfast, to expect higher numbers. It is usually to be 10 points on average higher at this time of day. But if after breakfast to take it about one hour after eating or drinking.. Then I took in mid afternoon. Then about one hour before going to bed. The key advice was to be sure to sit still at least 3 to 5 minutes before taking. To take about the same time each day so the numbers could be accurately compared. And NOT, NOT, NOT, to go into a state of panic if you get an occasional high reading, or 2 in a row. It is over a few days that matters since pressure is so instantly affected by coffee/tea/soda, salt, etc. Good luck.
Puzzler I'm in the same boat I was just diagnosed with CKD stage 3A GFR 52 creatinine 1.49 no blood or protein in the urine and I am starting to question the whole staging system it seems to me that they have lowered the bar to such a degree that many people who perhaps don't have the disease are classified as having it I hope that's not wishful thinking on my part but I have read that there's a lot of controversy with respect to kidney disease staging and that most people do not ever going to renal failure in spite of all of the people that are diagnosed what do you think about this
Thanks for your reply. Hopefully you are right. The doctor didn't seem that worried, and didn't refer me for any more tests apart from another blood test in 6 months. However it gave me a shock and i've decided to lose weight (which i should've done ages ago). Let's hope we never get to the renal failure stage!
Thanks for your reply. He did mention blood pressure pills (which i've taken for years) can cause it. I wish he had referred me to a dietician so i knew what food/drinks were good, and what to avoid. 6 months seems a long time to wait when you're a worrier like me!
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I think positivity is something that definitely helps with health issues.
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