New to this.: Have just been diagnosed... - Early CKD Support

Early CKD Support

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Purpletara profile image
15 Replies

Have just been diagnosed with Ckd stage 3. After the initial shock and "why me stage" I am looking for information to help me to look after myself. Any comments would be gratefully received.

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Purpletara profile image
Purpletara
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15 Replies
jillab profile image
jillab

Hi Purpletara, First thing is to try not to panic, easier to say than do I know, myself am at stage 4 varying from 25 to 28 eGFR , Do you know yours yet? I am 73 now and found out I had CKD when I had to have my left kidney removed, and was then told my remaining kidney was at only 25%, I panicked then, but once I saw a nephrologist he told me not to worry about it at this stage not to worry about what I was eating to much as long as I was eating sensibly no need to diet yet, the only warning was not to have grapefruit in any form, which lucky for me I hate anyway, but I have been surprised how many drinks it is in , even in some orange drinks just keep an eye out for that. I have found it a great help to join a ladies only group called Women's Renal Failure Support Group, it is a closed site so no one else can see it unless they are a member too, the help, comfort and advice is so helpful, because it is just other ladies with the same worries going through similar things. It really helps just to know you are not the only one going through this. I don't know where you live, I'm in Weston Super Mare so I am under Southmead Hospital in Bristol, are you any where near. Look after yourself and don't worry , you could be at this stage for a long time yet. Jill

Purpletara profile image
Purpletara in reply to jillab

Hi Jill. Thank you very much for your reply. Have just joined the women's support group but am just looking at the moment because, to tell you the truth, everyone seems so much worse than me. Didn't know about grapefruit at all! Giving mine to my daughter. No. I don't know my eGFR. I was only told I had kidney failure a couple of days ago so am still quite shocked. I am a quite fit 64 year old - no other health problems, eat a good diet and walk my dog for miles every day. Wasn't feeling very well so doc had blood test taken and then tells me my kidney function has been steadily decreasing since 2012. Have had a kidney scan and all ok. It's just one of those things. Quite depressed but trying to get my head round it. Sorry I don't live near you - I am up in the north east near Newcastle. Best wishes. Ruth.

nonie2147 profile image
nonie2147 in reply to Purpletara

I LIVE IN U.S.-----AM 78, CKD 3 JUST RECENTLY. WAS 2 FOR YEARS, UNKNOWN TO ME. CHINA HAS BEST COURSE OF TREATMENT- BUT HAVE TO GO THERE. THEY ARE NEGOTIATING WITH U.K. AND U.S. TO SHARE AND GIVE TREATMENT OUT OF CHINA. GO ON SITE WITH KIDNEY FOUNDATION OF CANADA. ASK FOR INFO HOW TO INCREASE GFR AND LOWER CREATININE. APPARENTLY POTASSIUM AND PHOSPHORUS ARE THE CULPRITS. FOUNDATION GIVE GREAT ADVICE, AND LISTS OF FOOD TO EAT AND TO AVOID. EYE OPENING. GOOD LUCK AND GOD BLESS- GO TO HIM- ONLY ANSWER FOR EVERYTHING.

Purpletara profile image
Purpletara in reply to nonie2147

Thank you very much for your reply. Will have a look at the kidney foundation site you mentioned. Really need to know what not to eat. Thank you again. Take care and hope you keep well.

kithsirid profile image
kithsirid in reply to jillab

may be u have made it cosed group while signing up, any way if u read this plz reply me, I too have ckd 3

Purpletara profile image
Purpletara in reply to kithsirid

Hi. How long have you had it and how are you coping?

kithsirid profile image
kithsirid in reply to Purpletara

it it 4 years since it came bad , but has started 10 years ago the docs could not diagnose properly,can we discuss our health problems , i m 71 year old male from SRILANKA

kithsirid profile image
kithsirid in reply to kithsirid

my email id is wikibad@gmail.com...........................?

Crags profile image
Crags in reply to jillab

I have 31 % function stage 3 B can someone pleeeeze tell me how long till stage 4.

Nicolala profile image
Nicolala

Hi. I know you must still be in shock, but you are taking the best approach, which is to find out how to look after yourself. I have to be honest, I've been on dialysis for 25 years and the only warnings I had about grapefruit were when taking steroids.

In terms of being healthy; avoid saltand salty foods as it puts pressure on the kidneys and makes you more thirsty. Other than that, at this stage a healthy balanced diet, sensible alcohol intake and gentle exercise will be fine. You sound very fit and strong, which will stand you in good stead for whatever the future may bring. Most of all, try to stay positive. You can continue to live a full life with/without functioning kidneys. Good luck .

kithsirid profile image
kithsirid

i too have ckd 3 , my GFR IS 28 , WHAT IS YOUR GFR VALUE ?

aadd4444 profile image
aadd4444

I think the most important thing is a proper diet and life-style under supervision of a proficient nutritionist. Good luck.

sharonlyn profile image
sharonlyn

go vegan..drinks lots of water...no processed food...no sugar...no meat and dairy products...low potassium..low phosphorus foods...no salt...you will lose weight...gain your energy back...get mental clarity..it might even stablize your gfr or raise it...i am waiting to see what my lab results are after doing this for 2 months...i have lost close to 30 pds..i am at stage 3b with a 35.12 gfr as of the last lab work in april...i had to self diagnose myself as i saw 2 doctors and they didnt say anything was wrong with me...so i saw my labs online and went..hell...the jerks...so i went vegan 2 months ago...i feel better then i have in a long time...good luck

sharonlyn profile image
sharonlyn in reply to sharonlyn

no caffeine...no tea...though i have had fresh lemonade where i add stevia...don't use splenda or equal...i have looked at youtube info...and there is several people that offer good advice...robert galarowicz...shows alot of videos that he incorporates medical journal documentation to support what he says...it is like kidney school...it has helped me alot watching those videos...also there is a website nutritionfacts.org/video/tr... click on that or put it in your browser...good luck..

Purpletara profile image
Purpletara

Hi. Funny enough my daughter in law is vegan and has been on at me for ages to change my diet. Think I will do it gradually but definitely head in that direction. I want to feel better - don't want to spend the rest of my life feeling like this. Thank you for all the pointers and information you have given me. I really appreciate it. Good luck to you too!

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