Shocked by CKD DIAGNOSIS : I went to the... - Early CKD Support

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Shocked by CKD DIAGNOSIS

Jac53 profile image
19 Replies

I went to the Doctors for the results of my recent blood tests as I take medication for BP. The doctor told me that my eGF is 53. And packed me off with a terrifying leaflet about the stages of CKD. I am still really and after reading the leaflet I discover I am stage 3 of 5. I've googled dietary advise and I'm at a loss of what I can and can't eat.

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Jac53 profile image
Jac53
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19 Replies
Celtic profile image
Celtic

Jac, basically, you can eat anything as long as it is healthy, fresh food, and everything in moderation.. People at much higher stages of CKD are often advised to avoid too much protein, and, for some, too much potassium.

It is important to keep blood pressure under control. Having high blood pressure you are probably already aware of the need to avoid too much salt in your diet, and, as for everyone, it is important to drink plenty of water, although there are exceptions with the latter for those who have to limit their fluid intake for one reason or another.

You haven't said how old you are but kidney function deteriorates with age. What is important at this stage is for your GP to monitor your kidney function from time to time to ensure that it is remaining stable at eGFR 53. If it does, then it would seem that you have little to be concerned about.

When I was first diagnosed with CKD 3a, eGFR 58, some 10 years ago now, like you I was very shocked, not least because I have only one kidney, having had one removed in childhood. That has now progressed to CKD 3b, eGFR between 39 and 43 at latest tests, probably due to the fact that I have high blood pressure which is difficult to control with medication - my body is intolerant to many of the BP pills and, in fact, my kidney function has been adversely affected by a couple of them!

Following my initial diagnosis, my friend's GP told her that the Government had opened a can of worms in instigating this kidney monitoring test which saw loads of his older patients in particular being diagnosed with CKD3 and rushing off to renal consultants in panic. Apparently, the Government requested the testing in order to discover whether deteriorating kidney function was either an age-related condition or whether it was a disease process.

So do try not to worry, especially if your next blood test shows your eGFR to be stable at its present reading.

Hope that helps to reassure you.

Jac53 profile image
Jac53 in reply to Celtic

Thankyou so much you have put my mind at rest. I am 59. I have had high BP for a few years and it went undiagnosed for a long time and consequently has damaged my heart. I have well under control now with help of medication. The problem is the only medication I can tolerate are notorious for affecting the kidneys. Looking through my larder I am astounded at just how many foods contain salt. I know your body does need some sodium but how much? I'm a very determined person and I am determined to keep at this level.

Nicolala profile image
Nicolala in reply to Jac53

Hi jac53

Celtic has given you lots of good information there. I won't repeat all that, but to answer your question about salt intake, here are a few tips:

Avoid cooking with salt or adding it at the table. Foods containing salt are thinks like bacon, cheese- especially processed cheese. (Things like philadelphia and cottage cheese are ok), ham, processed ready meals, sauces and gravies, crisps, nuts, fizzy drinks! Not adding it when cooking or eating can take some getting used to, but you will. Don't use salt alternatives like Lowsalt-they are high in potassium and best avoided. Reducing your salt intake will help manage your BP and take a little strain off your kidneys. Drink plenty of water too-not filtered though. Hope this helps. Finally, don't worry too much! At stage 3, with close monitoring and a healthy diet, your kidney failure may not worsen.☺

Zazzel profile image
Zazzel in reply to Nicolala

We drink reverse osmosis water that we get filled up at the grocery. It is filtered. Our tap water is terrible. Why do you say NOT to drink filtered water? What type of water should we drink? Isn't most bottled water filtered except distilled? Thanks for your input. I'd never heard this before.

Nicolala profile image
Nicolala in reply to Zazzel

Where do you live? In the UK tap water is fine, as is bottled. Some people have a Brita home filter. However, certain filtered water here has a higher concentrate of certain chemicals including potassium, so is deemed unadvisable.

Zazzel profile image
Zazzel in reply to Nicolala

Ah, good to know. As always, thanks for your awesome Info! I live in the states. I'm in Tucson. Our water is terrible!

Celtic profile image
Celtic in reply to Jac53

Jac

"The problem is the only medication I can tolerate are notorious for affecting the kidneys".

Snap! I'm trying my 8th different medication, and am currently experiencing a nasty allergy causing itching from head to toe 24 hours a day - just hoping it isn't the latest BP pill. Why or why can't my body be more tolerant?!

Nicolala has given you some wise advice re salt. I remember when I was pregnant I was referred to a dietitian for advice as how to keep my sole kidney strong through pregnancy. The main advice was to cut out salt. I tried the first boiled egg without salt and found it completely tasteless but must have got used to it because once the pregnancy was over and I tried returning to my first boiled egg with a pinch of salt, all I could taste was salt rather than the egg - yuk! Have never added salt to anything since.

jaykay777 profile image
jaykay777 in reply to Celtic

Nicolala -- Please tell me more about why you sugest avoiding filtered water. Does it contain sodium or ??? Thanks.

phillen profile image
phillen in reply to Jac53

Celtic has given you fantastic advice my husband is 61 & been on dialysis for 6 years he was in stage 3 for at least 16 years that we know of ( they didn't tell you figures etc then) & just ate a healthy diet its hard enough dealing with the diet & fluid restrictions on dialysis to start at stage 3 would put you through years of extra stress you can worsen things by taking it upon yourself to cut down on what your body needs ( apart from salt which everyone needs less of) x

kithsirid profile image
kithsirid

never mind

you can live with it

4 years ago my gfr was 51 now its 28 buti m still ok

control your BP N DIETS

EAT A green apple a day one vedge of water melon remove most of the toxins, try to live , do not worry,by the way can i see your test resuts

wish u good health

honeycombe1 profile image
honeycombe1

Hi,Jac.

Like you I was totally shocked and panicked straight away.

My egfr has stayed at 31 for a year now, so is chronic but stable, my left kidney is no good.

BP meds are a nightmare, some I fainted on,,too low, hit and miss. kidneys can cause high BP,and vice versa.

I am 62,,anxious at times, but, that's me!

This sight is very good, the advice you need is in your reply's,certainly helped me.

Take care

Love Dawn

kidney.org.uk/help-and-info...

Unless there is a rapid decline in your kidney function you really don't need to worry.

Here is medically verified info, and advice from the NKF

kidney.org.uk/help-and-info...

For stages 3 advice is generally the same as that for stages 1 & 2.. Be healthy, exercise,

For the aforementioned government guidelines it HAS resulted in whats supposed to be a 'checkup test' resulting in people with natural decline in kidney function (we all age) being diagniosed with 'early' stage CKF.. (which may not need any treatment apart from managing BP and healthier lifestyles. It is possible to reduce BP by exercise and loosing weight (swimming is great)

Incidentally our governments 5 a day is one of the lowest targets in the world compared to other countries, where its recommended up to 10 or more varied types of fresh fruit, veg and nuts..

Wishing you well

J

jaykay777 profile image
jaykay777

Now that I've read about testing in relation to government guidelines, I wonder whether I I've made a mistake in consulting nephrologist immediately after my blood tests showed early kidney disease. I didn't know at the time that because of my advanced age (84 at the time) I would never be considered for transplant or dialysis. However, the nephrologist is scheduling my visits further apart at each visit, and I feel she is competent, so I will continue seeing her.

sylla123 profile image
sylla123

My husband's kidney function went right down to 6 before he started dialysis, we always knew it was going to happen one day, but he hovered for a long time at around 21 ..19 .. 18 .. then back up again slightly .. he had a good 11 years after he was first diagnosed... with medication and diet ... walking, swimming gardening .. lots of holidays in the sun ..! How I wish for those days back !

honeycombe1 profile image
honeycombe1 in reply to sylla123

Xxx

kithsirid profile image
kithsirid

visit the link below , u will get enough stuff.

" GFR Calculator – Glomerular Filtration Rate- Davita "

typing Davita alone will take u to their WEB

wish u good health

plz write me back

THANKS '

kithsirid profile image
kithsirid

VISIT " GFR Calculator – Glomerular Filtration Rate- Davita "

Typing Davita alone will take u to their WEB.

WISH U GOOD HEALTH

pl write me back

THANKS

toeragthecat21 profile image
toeragthecat21

Hi 53 percent function is perfectly ok so dont worry.just avoid ibruprofin dangerous for kidneys

Zazzel profile image
Zazzel

Great info from everyone and Kithsirid mentioned Davita.com which is a great source of information.

You asked specifically about how much sodium you should intake. Davita.com goes into some explanation here: davita.com/kidney-disease/d...

The top two causes of CKD are high blood pressure and Diabetes. There are many other causes, but those are the top two.

CKD can also cause high blood pressure which is what happened to me. I had CKD for several years with low blood pressure,but developed it over time.

If you are overweight, and or eat lots of sugar, now would be the time to take control of that so you don't develop diabetes and that's when more issues begin. Otherwise as everyone said, eat fresh and healthy and get excercise.

Everyone's situation is different because causes and types of CKD vary so a discussion with your doctor about your particular situation is always advised.

Toeragthecat mentioned avoiding ibuprofen. I'll add to avoid any NSAID drugs. That's something all CKD patients need to follow. My neph said to use Tylonol if needed in small doses and only when needed.

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