WHAT: Hi folks I’m new to this site hope... - Early CKD Support

Early CKD Support
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WHAT

Hi folks I’m new to this site hope ur as well as can be.Got a fone call today from doctors Surgery to pop in with regards to blood tests.Went down,doctor told me no cause for concern doctor told me I had ckd what’s that I asked doc said u av stage 3 chronic kidney disease to asked me to take another wee sample I take that in morrow.

I’m lost for words all she said was 50 per cent kidney not working.

I left the doctors confused and shocked.

What happens now do I need tablets as I’m lost☹️

18 Replies
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Hi, Chance 15,

Welcome to our community! It does seem somewhat of a surprise for your GP to downplay your test results, but may he/she didn't want to scare you, but in fact by not explaining things this is what has happened!

Stage 3 CKD is a mild to moderate loss of renal (kidney) function, and generally, you will feel well with no symptoms. However, your doctor will need to regularly (3 monthly) monitor your kidney function through blood tests checking, for example, your sodium and potassium levels, and eGFR (estimated glomerular filtration rate) ie the rate at which your kidneys are excreting waste products etc., which is a good indicator of kidney function. There are other contributing factors need to be considered such as your age, sex, muscle mass and other information. You can improve kidney function through making positive dietary and lifestyle changes, through reducing high blood pressure (which may need medication) etc. Here are links to more information from the

Edinburgh Renal Unit:

1) Blood Test results: edren.org/ren/edren-info/bl...

2) Chronic kidney disease and its progression: edren.org/ren/edren-info/ck...

Kidney Research UK:

1. Chronic Kidney Disease - what it is:

kidneyresearchuk.org/health...

2. Stages of Chronic Kidney Disease (CKD) :

kidneyresearchuk.org/health...

3. Healthy Eating:

kidneyresearchuk.org/health...

Keep in touch with your GP and if you feel able, explain how you felt when you received this news, that by dismissing the diagnosis as something not to be concerned about, was unhelpful. Hopefully, when you feel more informed about CKD, you can approach your GP and have a frank discussion about your options and way forward. They need to keep monitoring your kidney function and possibly refer you to a kidney specialist (nephrologist).

Keep in touch.

Ok folks please pop by and welcome this new member.

Best wishes,

MAS Nurse and Moderator

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In my opinion, it is no surprise that the gp downplayed the test results. That is what many gps and nephs do. While I was reading this it occurred to me (I am a former teacher and administrator) that if a student gets a 50%, that student is failing. But if a kidney patient gets a 50%, it is no big thing! Shame on those gps and nephs!

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It’s rite what your saying I wasn’t told nowt out.Perhaps doctor knew nothing about it.Thats the impression I got I had to look on internet and this site of course and that’s well I learned more info on it.My problem is I forget 90per cent of it.Its called fibro fog.

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Agree with your post. I am on Medicare and on renal diet. Diagnose at level 3b. I was on a 3 month blood work schedule. Since my eGFR improved, I see my PD every 6 months now.

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Yeah, there are doctors like that. Thankfully our doctor isn't. She was genuinely happy too that we caught my dad's CKD early. Been very supportive ever since. Sees my dad every 6 months, as well.

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To MAS-NURSE,

A big thank you for ur reply yes didn’t go into any details I think that’s why I was shocked and angry,as I left the surgery to go home my head was spinning all the way home.Doc should have been more informative about it to me.I suffer bad depression and anxiety with Fibromylagia and copd.The good thing I suppose I am with healthunlocked which is were I got my info from and urselves of course..I’m still trying to come to terms with it.

Also a big thank you to all of you.

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Hi chance,

There are no tablets to resolve kidney disease. But all is not lost. You can learn about CKD in the links provided by the nurse. Ask you doctor for a referral to a nephrologist. Learn about what you can do with diet to preserve your kidney function. Find out what is causing your kidney disease and if it is medicines, ask your doctor to review them and change them.

Here is a simple plan to start:

1. Eat out infrequently. You have less control over your food choices.

2. No fast foods

3. No process foods such as frozen dinners or packaged products

3. Less meat the better, chicken and fish still have high potassium, eat sparingly

4. 1-2 cups of coffee and use real crème not non-dairy

5. Lots of water up to 2 liters unless told by the doctor to drink less or more

6. Incorporate more whole foods in your diet: vegetables and fruits

7. Little to no alcohol especially beer One glass of wine might be ok

8. Cook without salt. You will get used to it and then eating stuff with salt will taste bad

9. Do not take supplement, OTC drugs or other without checking with the doctor first.

10. Get Educated. Take classes on how to manage kidney disease. There are classes on the intranet as will as maybe by your local Kidney Foundation davita.com/education/kidney...

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To Bassetmommer,

Thanks for that useful info realy appreciate it.Yes it came as a shock I lost for words (brain fog).i will mention to doctor about seeing a nephrologist.

I also have underactive thyroid,vitamin b12 jabs,folic acid deficiency.fibro? Can’t spell it lolI have ad a brain scan for memory Friday as my brain don’t work and it scares me.I cared for mom who had dementia she ad loads of health probs.She passed away 7 January.Im going of course as I do.I just pray I don’t have dementia.

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Hi Chance15,

Of course many things can cause brain fog so it’s great you are getting it checked out. I listened to a video recently about prevention of dementia. Recent studies showed these things could help with slowing it down:1. Reduce or eliminate added sugar from your diet. Women should have no more than 24 g and men 36g ( that’s about one soda- there are also loads of sugar in all processed foods), consume vitE. About a small handful of nuts a day will do the trick, delete all colas both regular and diet, drink water, exercise, spend time with others, play word games or other mind games. I do find the less sugar I eat the sharper my mind is. When I was at my mother-in-laws, who has dementia, although she is petite and in otherwise good health, I noticed she was constantly eating sugar, whether it was cookies, donuts, or sweet tea. Her fridge was stocked with cola and my husband said for as long as he can remember she has had several a day. Maybe there is something to those studies. So, if you are eating lots of sugar and drinking cola, try stopping that and see if it helps.

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To Zazz,

Thanks for your reply sugar wud be impossible to stop I know I have to.I take 3 spoons of sugar in tea I also love anything sweet chocolate,condensed milk in tin I crave anything that’s sweet.If I have to stop sugar it won’t be worth living.I know wat u all thinking that the wrong thing to do or say.I don’t eat any fruit it makes me gag.I can live with no salt in dinner.So much to take in me brain not work and then I get myself worked up which triggers my anxiety and depression of.

A big thank you for ur reply.

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Awe, I know it is so difficult. I am a sugar lover as well. It is so addictive.

Sorry if I caused you any anxiety. Maybe just take baby steps and only use 2.5 spoons in your tea then work your way down. I find that by not completely denying myself I can make it work. It's funny because now some things seem too sweet or too salty to me and don't taste good not that I've cut back. Your taste buds honestly change as you start making tiny changes. Try it the next time you drink tea. Just reduce the amount of sugar slightly. Then, once you get used to the taste of that, reduce it a tiny bit more and so on. Maybe you will always need a tsp of sugar, but if you can work it down from 3 tablespoons then wouldn't that be great! I bet you can. :)

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Are you in the UK same happened to me I keep reading on here go see your nephrologist in the Uk the Dr decides if you should see one and it takes about 2weeks to go see a Dr here , they seem to play it down in Uk perhaps because we don’t pay for treatment .

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MRSP70,

Hi there yes I’m in uk Midlands.I was stunned didn’t expect to be told that as we all would have done.I don’t even know if I have to make an appointment.I will have to find out I’m still in shock.I will fone Doctor up to see if I have to see a nephrologist and what the next step is. Chance.

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Hi Chance,

You said you have a combination of B12 deficiency and an under active thyroid. Those can cause major brain fog. Auto-immune diseases such as fibromyalgia can also create an impair cognitive function. Sugar causes inflammation. I would suggest you seek medical care to get those under control. You can get B12 shots or pills from you doctor. There are medications to also help with an under active thyroid. And see if you can work with a dietician to help with not only the fibro but also your kidney function. It is true: "You are what you eat."

As far as your sugar issues, that too is impacting your total health, not just your brain function. I know it is hard to break a habit. Here is a way to think about it that might help: You are in control of your body. If you want to have medical issues, then don't do anything about it. But if you want to get healthier, you are the captain of that ship and where you steer it will make a difference. And the fuel you use is up to you. Cheap grade fuel such as sugar is not the best choice and I think you know that. So look at how YOU are helping YOU every time you skip a teaspoon of sugar or a candy bar. And then be proud of those changes. If you slip up, get over it and move on and try again. You will find the more you do this, the easier it gets. And then you will realize that you have cut out something and don't miss it. And you have you to thank.

No one said you have to cut out sugar completely. There is pleasure in eating things like chocolate and a good cup of sweet tea. Just learn to modify the amount and frequency. Think before you put it into your mouth, is this really what I need? Also, by waiting on the impulse to consume something, it often passes.

The other thing is constant consumption of high amounts of sugar can lead to diabetes and believe me, you do not want that complication.

integrativepsychiatry.net/b...

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To Bassetmommer,

Hi there and sorry for late message I run out of data.

Underactive thyroid is in good shape.

Folic acid abnormal 1.4 even now wen I’m on3x5mg daily folic acid.

Vitamin b12 jabs every 8 weeks due to neurological.I also have a tremor inside body that’s moves around which gives me electric shocks.Doctors are aware of it but don’t know what to do with IT.

I have to have the b12 jabs as I am intrinsic factor antibodies positive and positive on other cant remember what.somthink makes intrinsic factor.

Any how how are you this humid night.

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We are pulling for you.

We are cheering for you.

We know it will get easier.

We know because we've been in your shoes.

We know life is good with friends who understand.

We hope you will stay in contact with us.

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That’s realy nice of you thanks.

I was looking on my online medical records and this serum crea? I’ve ad this for the past nine years why hasn’t this been picked up years ago.I need to see a doctor I need answers isn’t that negligence on doctors part????.

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Hi Chance15,

Still waiting for my doctor to call me.Most docs today seem '''too busy"

We need to be advocates for ourselves, especially when we have special needs. They call themselves "specialist" (Lol) but only GOD understands the human body. He alone can help us cope with the injustice.

Hope you find answers to your questions.

Agape

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