Ckd stage3a and terrified

1st post I found this site while surfing for info on the matter

Let me introduce myself

I'm steve im 37yrs old and for the last yr have been undergoing tests for traces of blood and protein in urine (very small amount) flagged up on a routine medical examination

Iv had a ct scan an Mri scan and ultrasound

And they have found out I have a left atrophic (small) kidney and and oversized right kidney

Creatinine level of 128umol/l and gfr of 55

The small kidney is not functioning and doc says that probly happend at birth, right kidney is doing all the work

He has diagnosed me with ckd stage 3a

And I'm terrified

I'm having blood and urine tests every 3 month

Gfr seems to be at 55 consistently, I have recently lost 3 stone in weight and I'm being more active doing excersice 4 times a week but I'm terrified with all this and I panic and worry terribly

I need to improve my gfr and keep calm just to talk to someone may help

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27 Replies

  • Will it get worse?

    Can I help my gfr level


  • Hi Steveo99 , I'm at stage 4, with e GFR averaging 25% and I'm 73, I was diagnosed 3 years ago after having been told for over 50 years that it was I.B.S. We moved areas and the new Dr. said the same but I said I wanted more tests I was sure it wasn't that. to cut a long story short, it wasn't I.B.S. it was CKD and I had to have an urgent operation to remove the left kidney as it was complete mush and was affecting the right one, which as I said was at 25% I like you was terrified, until I saw the nephrologist a couple of months after the op. he put my mind mostly at rest (I admit some days I still worry, ) he told me as long as I was sensible did nothing too outrageous and ate sensibly I should keep stable not to worry and don't get into stressful situations if possible. So I imagine as you are only at 55% similar would apply to you, so try to stop worrying and relax. If you are worrying about your diet ask your nephrologist for referral to a kidney diet specialist. I do know grapefruit is a no no , and be careful the juice isn't in other drinks, some other fruit drinks also have grapefruit juice in. but your best way would be to see a professional. If you want to pick up lots of ideas and knowledge join some of the kidney groups. I belong to a ladies only one which obviously you couldn't but there are lots of groups B.K.P.A. (the British Kidney Patient Association, The National Kidney Federation. are just a couple. I hope you will get some help from them, but please try not to worry to much. Good Luck .

  • Stevo, the fact that your left kidney isn't functioning is, no doubt, the reason for the reduced eGFR (ie CKD3a). However, you mention that your eGFR is "consistently" at 55, and that, in itself, is good news as it means that it is stable, so hang on to that fact - no need to panic or worry.....stress can be damaging in itself.

    I wonder whether the protein and blood in the urine is as a direct result of the non-functioning kidney - maybe an expert can answer that? But if that is the case and the right kidney is used to working for two and working well, then possibly removing the left kidney might solve the problems? Again you need expert advice here.

    I had my right kidney removed as a 12 year old following years of bladder problems, and it was then believed never to have worked from birth. I was diagnosed with CKD3a, eGFR mid-50's some 10 years ago - I am now 74, with a decreasing eGFR (at present 41) due possibly to high blood pressure which is very resistant to medication. But as the eGFR test was only brought in fairly recently, it is highly likely that I have had a lower reading than normal for many years simply due to having just one kidney. The same might apply to you seeing that, although you have two kidneys, only one of them is working.

    It sounds as though you are doing really well in helping yourself - that's a very impressive weight loss, so well done.

    I hope it has helped to chat with others here, albeit virtually.

  • Been to see my local doc for a bit of advice (not my specialist i see him in a month)

    I was just wanting things explained simply to ease my mind

    And the doc says being placed in ckd stage 3 doesn't necessarily mean you have a kidney disease it's just means that's the category your placed in due to your blood / Creatinene ratio

    And was very understanding and said people think that they are working through the stages of ckd and that's not the case as your kidneys can get better or worse

    The main advice I got was to..

    Keep active, excersice

    And eat healthy

    Alcohol was not entirely ruled out but drink it in moderation

    So I'm going to focus a lot more on what I eat and drink now I know I only have 1 kidney

    I can't believe I have gone 37yrs not even knowing

  • That's interesting that your doctor says it may not be ckd.Because I have been wondering that about myself as no symptons no protein or blood I urine.Only diagnosed after a blood test for diabetes which was negative.Hope things work out for you.But like jillab has said join a forum for people with kidney disease it will help thy can give you lots of advice.

  • "And the doc says being placed in ckd stage 3 doesn't necessarily mean you have a kidney disease....

    Wise doctor. In fact, my consultant told me that the very name "disease" is inappropriate but that it was so named in the US and we have to live with it!!

    My friend's doctor told her that the Government had "opened a can of worms" when they announced that the eGFR test should be carried out during all relevant blood testing, as it had resulted in very many patients, particularly those of the older generation, rushing off to kidney consultants in panic. The reason for its introduction apparently being to investigate what was actually a disease process and what was simply an ageing process, although I know the latter doesn't apply to you.

  • I know exactly how you feel.I'm a 55 year old female recently diagnosed with an eGfr. of 58.I have been I panic mode ever since using found out.Had ultrasound nothing found I haven't got all the other things that usually go with or cause this illness like diabetes or high blood pressure.I need to lose weight which I'm working on by exercising more and eating healthier.I have been told that with a few life style changes you can stay at stage 3 for many years let's hope this is true.I know it's not easy but just try not to panic.And do everything you can to hold on to the stage your at.Good luck.

  • you sound like you are doing the best you can my husband was in stage 3 for at least 15 years that we know of had problems all his life but gps were not very forethcoming before that about results he is 60 he went very quickly through stage 4 to dialysis from that within a year due to heart problems & high bp causing his decline even on dialysis he has a whiskey daily! just look after yourself keep hydrated & eat healthy & don't get stressed about it they will do their best to keep you at that!

  • Thanks for the support and replys,


    I thought this was a forum for people with kidney diseases? Is ther another specific forum ?

  • I'd just like to ask anyone in the know about my diet..

    When I get up I have a bowl of porridge with low fat milk, and a cup of tea with no sugar

    At work between 6am and 5pm

    I drink a lot of bottled spring water around a litre bottle a day

    And daily I eat red grapes,a pair an apple, a weightwatchers yoghurt and a cereal bar

    Lunch, a lettuce and tomato with 1 slice of turkey on a Sandwich, low calorie Danish bread

    In the evening Between 6 and 10 pm will consume a homemade meal of a varied recipe

    Usually a bolognase with pasta or jacket potato meal sometimes just a simple tatty hash

    And a glass of cranberry juice

    No crisps sweets cakes or fizzy drinks at all

    No sugar or added salt to anything

    Would you say this is a balanced and varied diet And ok for someone with kidney problems?

    I also do an intense workout every 2 days of the week

  • Hi,

    You have no need to worry Steve, were luckily born with more kidney function than we will ever need.many people, such as my uncle, are born with one kidney and have no life limiting effects apart from not being able to donate.

    I understand the Worry, I'm 19 and down to 24% but you shouldn't make yourself miserable with such a strict diet. Treat yourself now and again, that's not being stupid that's just living. Don't make life all about your CKD because you'll be 85 and wondering where it all went. Take each doctors appointment as they come :)

    All the best


  • I would be happy to keep in touch with you. I am in somewhat of the same position as you except i havent had a scan yet. Just an imitial teat with follow up soon. I am 43 with gfr 59. Creatinine level 128 as well. I had major anxiety about it at first. I is still worrisome but i just focus on fixing the lifestyle changes. From what i know you can see provents in your egfr or stay where you are at for a very long time. Take care and feel free to message me.

  • Thanks Tara 😊

    Xenogenic sure I will happily keep in contact on the matter and anyone else, it really is good to talk about it And share experiences

    The things I keep an eye out for are build ups of fluid on the ankles or hands

    And lower back pain

  • Hi Steve, and welcome.

    Wonderful advice/info already provided to you, and the fact that your egfr been staying at 55egfr is really good, as it may even just stay at that anyway.

    I am 47 years old and was diagnosed 2012/2013 with stage 3 CKD and due to many infections as a child, my kidney specialist (Nephrologist) says that the damage on mine is reflux kidney, and its possible i was born like it, however, having long term high blood pressure in my case as well not helped me, but I am still stage 3 and currently at 35eGFR, but staying positive :D

    You are doing great, stay positive and stay active, drink plenty of fluids if not restricted. I was told less red meat, and chocolate in moderation etc and not to add salt to food.

    Fingers and toes crossed for you and keep your chin up, you will be fine x x

  • I too have stage 3ckd. Results this time 50 up from 45. No idea why. I wonder if it's a bit like blood pressure - different results each time. I feel well and refuse to worry about it. X

  • Dear One, Do not worry. Just observe your diet and life-style. Try not to be dehydrated. Do not forget fresh fruits and vegetables. Walking and physical activities are also important. Try to be psychologically calm and avoid stress. I think eating thin soups containing a variety of vegetables and less viscosity can be very delicious and healing or curing. I wish you a healthy life.

  • Thanks aadd4444

    Can I ask if anyone knows...

    If we are supposed to get a gfr of 100 from both working kidneys And as I only have 1 kidney a gfr of 55 should be about right for me? is that how it works?

    Or are you supposed to have 100 gfr from each kidney?

  • Dear Stevo 99, 120 is the best GFR which is expected from both kidneys not one kidney. Do not worry.

  • Hi Stevo,

    You have to calm down and follow your GPs advice , trust me you will be fine , what are other symptoms you have ?

  • Hi

    Thanks for the reply

    As for symptoms I only have traces of protein in urine other than that I feel ok

    What symptoms are there to look out for?

  • it all depends ,like constant bitter mouth,foamy urine,unintentional weight loss,pains in the kidney, did you once had any of these symptoms?

  • I do have bubbles in my urine I'm assuming it's protein

  • So iv been regularly checking my blood pressure at home using one of those electrical bp monitors and time after time I'm getting readings of around 135/65

    Does that sound a bit low?/high?

    Can low bp effect kidneys as we'l as high?

    I also found out my thyroid is producing low levels?? Any connection?

  • Dear Friend, Do not worry. eGFR below 15 may be of concern, because in that case, dialysis or transplantation may be needed. I think if you keep a proper diet and life-style, God willing, you won't have problem. Limit protein, salt, sugar, fat etc. Try not to have psychological problems or stress(though it is not possible, because I think all the people suffer psychologically). Continue your exercise and brisk walking. Try to be joyful. I, sincerely, wish you a very healthy and happy long life.

  • I would like to thank everyone for the info and tips on managing ckd

    I have just been for my 3 monthly check up and creatinine levels have reduced and my gfr has improved from 55 to 64 for my single kidney

    And all other parameters are stable

    So my specialist has moved me down from ckd stage 3b to stage 2

    I can only surmise that the improvements are from my diet change and regular excersice

    I'm So relieved thanks everyone I'm going to continue as I am doing

  • I forgot to say my specialist explaind to me that ckd is absolutely NOT a disease like we think it is when you hear the word "disease" you immediately think your sick or have a disease inside your body and that's definitely not the case, it's just a name, it's more of a category you are placed in regarding your blood readings

    It sets alarm bells ringing and really should be named something else in my opinion

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