New diagnosis : Just been told my kidneys... - Early CKD Support

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New diagnosis

ChanelCoco
ChanelCoco

Just been told my kidneys aren't functioning at 100% after routine blood test results - 51%. Dr then told me they hadn't been functioning at 100% for the last 10 years when they were 70% and then 2012 at 61% and that that if they reduced to 30% I would be referred to a specialist. She said it was my immune system, I asked why I hadn't been told previously and she said that there wasn't any reason to tell me. I said I was a little surprised. I spoke to her about some ongoing back problems (almost three years affecting the whole of my left side), ongoing fatigue (a few years) she asked if I took ibuprofen or aspirin and I said no, she asked me about my diet which I said I haven't had an appetite for a couple of years and she then said she was going to order some more blood tests as my cholesterol has gone down significantly she said there may be an underlying cause. She said the good news was I'm not diabetic. I have low blood pressure so she told me to drink plenty of water but I need the loo straightaway to add salt - which is what happened but I haven't added salt. She also told me to eat plenty of fruit and veg.

I came home a bit bewildered and came across this site so you can imagine my surprise at my dr's apparant casualness at telling me my kidney function is 51%. I have low vitamin d and asthma otherwise healthy. I have had a metallic taste in my mouth fir several months which I forgot to mention to dr but reading here indicates that may be significant.

I'm clueless about food and have been searching online for a dietician that can help me but haven't found one yet - I'm Midlands based.

The dr didn't go through the blood test results in detail but I can see from posts here references to various results. I can access some of the results online - just need to understand them!

Sorry for the long post but wanted to get as much info in as possible.

I'm female, 55 and would appreciate all and any guidance on next steps.

21 Replies
oldestnewest

Hello, I am male and live in South Eat England. I was diagnosed at 17% four and a half years ago so I know all about what a shock this is! My kidney failure is also down to my immune system. I'm not diabetic and like you I have low blood pressure. I also have low vitamin D and B12 and Asthma. I am currently at 8% and need to start dialysis soon. What I would say for you is that whilst they should have told your earlier at least you know now and if you cat quickly then you hopefully can slow this down and the good news is you have plenty of kidney function remaining. The other good news is that this forum is brilliant so stay close and ask us anything and everyone will try their best to help.

I am very surprised they want to wait until you get to 30% before sending you to a nephrologist. There is medication that can potentially slow down the progression but you really don't want to lose another 20% as you will be on a slippery slope then. See what the other folk on here suggest but personally I would be demanding to see one now and if you cant do that on NHS then consider going private if you can afford it. Having access to a good medical team and a renal dietician is key.

Lastly, I might of mis read it but did you say your doctor told you to add salt to your diet? Normally salt is one of the worst things for kidneys.

SMM62
SMM62 in reply to rabbit01

I am curious as to what medication slows progression down?

rabbit01
rabbit01 in reply to SMM62

Depending on the cause, steroids to reduce inflammation in the kidneys and immunosuppressants can be used succesfully to slow down the progression of CKD. But as I say it depends on the underlying cause.

SMM62
SMM62 in reply to rabbit01

Thank you for the reply, Rabbit01

Hi rabbit,

Can you please tell me where you got the information on steroids and immunosuppressants slowing down the progression of CKD. Curious for my own information.

If you just Google immunosuppressants and CKD you will find lots of articles about it. They certainly don't work for all causes of kidney disease and even the types of kidney disease that they do work for has a limited time window. For example Steroids may help calm down inflammation in the kidney which may reduce further damage but they cannot turn scar tissue back into functioning nephrons.

ChanelCoco
ChanelCoco in reply to rabbit01

Thank you. We have a lot if similarities and like you say at least I know now - just need to understand what I need to do to stop it deteriorating if I can. I was have been looking for a renal dietician but struggling so far - prepared to go private if necessary. Yes - she told me to include salt due to low blood pressure reading.

rabbit01
rabbit01 in reply to ChanelCoco

I could not find a private renal dietician. Once I had been referred to the nephrologist then I had access to speak to the renal dietician at the Hospital. To be honest they did not come up with anything earth shattering but they did confirm that the diet I had started on made sense with my blood parameters. For example my potassium is low which is unusual with late stage kidney problems so for me I could eat bananas. They helped me understand what foods had high phosphate in (ie cheese, colas) and I had to limit those as my phosphate is high. But we are all different so that is why you really need to see a nephrologist and go from there. I would think the renal department in a hospital not that far from you would almost certainly have a renal dietician who you could have a telephone call with as a minimum. Don't worry you will become an expert in all this over the month to come. It is all new for you now and a shock I know how I felt about it all!

ChanelCoco
ChanelCoco in reply to rabbit01

Thank you very much. I think I need the dr to though my blood test results in much more detail and then I can look at foood groups.

Hi ChanelCoco,

Welcome to this supportive and informative community. Sorry to hear that you haven't been feeling well.

This link may help you, it provides some information regarding blood results and dietetic advice.

kidneycareuk.org

nhs.uk/conditions/kidney-di...

Also here is a link to a healthy eating plan in renal disease:

kidneyfund.org/kidney-disea...

Are there any of our helpful members able to offer any advice?

Best wishes,

MAS Nurse and Moderator

ChanelCoco
ChanelCoco in reply to MAS_Nurse

Thank you. Will take a look

Hi . I’m ckd at 33 previously was 26 the ideal number for me would be 50 my nephrologist told me only last week,I also have heart failure & osteoporosis very very painful. But am limited to painkillers I can take because of my kidneys, I’m also anaemic & have B12 every 3 months also have blood pressure take medication for that that, + simvastion for cholesterols .i feel so mixed up &fed up with everting now to be told I need more salt in my diet .After cutting all salt & sugar from my diet . He loves me get trough this I’m so fed up . Peggy x❣️

Peggy76
Peggy76 in reply to Peggy76

Sorry should have said. Very very.fed with continued ailments certainly not love ??

Try to get the doctor to be more clear on what they mean by your immune system is causing it. Are they giving the condition an exact name? There are several tyPes- find them here nephcure.org/immune-system-...

Do you have protein or blood in your urine? If you have protein, ask what can be done to control it. Most of us eat a low protein diet with limited or only small amounts of red meat. If it is immune related, are you allergic or intolerant of any foods or things in the environment ( smoke, grasses, trees etc)? If you are, these things can cause inflammation in someone with immune conditions. Inflammation causes further deterioration of the kidneys. I found out I had kidney diseases several years ago and my GFR had gotten as low as 51. I have an immune related kidney condition called IGA Nephropathy. Since then it has risen to about 70, but it still bounces around if I get sick.

The salt might be because your blood pressure is too low. I would clarify that with her and determine exactly how much is needed. I have to really watch my levels as when I go too low in salt, my blood pressure level drops too much, but when I have too much sodium, my joints hurt and my skin swells slightly. You really need to find the right balance for you.

Try to find out more information from your doctor then come back and ask more questions. We will help.

ChanelCoco
ChanelCoco in reply to Zazzel

Thank you. I plan a return visit to find out more info. Her casual manner led me to believe it wasn't anything serious. No specific name was given to me - just due to my immune system, No allergies and yes the salt was suggested due to low blood pressure.

too was first informed about my kidney functio when it was low--64% I was given these results during a check-up from a yearly physical. The doctor was going thru the list of my conditions, and at the end just casually mentioned,"And then there is your CKD." He said it in a very off-hand way, as if I already knew about it--I didn't--and like there was nothing to be concerned about. I was devastated! How this had never been descoverd before is news to me, and Whye he did not immediatel;y give me precautionary measures and try to discover the cause is also a mystery.

Shocking isn't it

Unbelievable!

first i think it borders on malpractice when a doctor does not let you know you are in the early stages of this serious disease.i think the earlier you are aware the faster you can deal with it. it appears you are in stage 3a which means you are mildly - moderately affected. at this point you need to be aware of your lab reports and your diet needs to be tailored around your lab results. if your md knows nothing about diet or nutrition which is also very common, ask to be referred to a dietician who deals with ckd pts. best of luck. let us know how you are doing.

ChanelCoco
ChanelCoco in reply to bubbles53

Thank you - I intend to insist on referral and explanation of my specific test results. My return attpt is not until 16 August so will update after then,

I will be of no help to you apart from I am in the same sort of boat . 52% but with high bp. Just more or less told to avoid ibuprofen and drink plenty . So am interested in the advice you will receive . I am female and 60 years old .

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