Diagnosed just last week. Can think of nothing else. Read about it, talk about it. Even recipe books, what you can and can't eat. Haven't been told the stage I'm at as yet.
Questions and Questions to ask. How it affects your life? How did you all handle?
It feels better just writing it down to people who understand. All input will be great Thank Doreen.
Hello Dorri65, I have ckd too, I am at stage 4, and have eGFR at 28 at the moment, have they not told you your eGFR yet, this tells you what stage you are at . If they haven't rushed you into hospital, try not to worry too much. Don't try to diet until you know your stage , as it varies as you go along, my nephrologist has told me to keep eating sensibly, one big no no is grapefruit, try to avoid it, and watch other drinks you buy check the labels, even some orange juices contain grapefruit juice surprisingly. Don't cut other thins out until you see an official dietician which will happen usually when you get to stage 5. There are a lot of different sites to look on for info. but I have found one which really helps me a lot is the Women's Renal Failure Support Group, as the title suggests it is a closed site just for ladies who have renal disease or cares for someone with it. It is especially good because some questions can be a bit embarrassing to ask on front of men. There is always someone on who can answer any queries, (if they can't they will know someone who can) worries, if you need a rant, a hug, or just a laugh ( which helps at times} someone will be there. The ladies have helped me to understand a lot, I couldn't do without them now. Whatever you decide look after yourself, and don't worry .
It's such a broad church and every case is unique. I would say 'Welcome' but the last thing CKD is is welcoming. The challenge is adapting your life when necessary to accommodate the changes that will occur. Certain factors in controlling your situation become important whilst other things that used to be important to you fade into insignificance. Question everything and accept that you will be frustrated by contrary advice.
I haven't been given a stage, but I have been given a diet. I guess I am at a very early stage of CKD and life style adjustments should help. I am told by my GP that specialists recommend the heart healthy diet . That is low fat, low cholesterol ,low salt and low artificial sugars. GP also said to cook everything from scratch and most especially avoid processed food and processed meat ...ham bacon etc. Oh yes And I've to do some exercise.
Another lot of tests will be taken in August.
I haven't handled this very well. I can cook a main meal from scratch . Can't think of anything to put in a sandwich. I can hardly walk very far because of arthritis so not sure about exercise.
Ruth
Hi Purplina
I'm similar to you, I'm assuming early stages, also R.A. Your Arthritis is worse than mine. I'm on Big yellow tablets that irritate my tummy. I hate taking them, there suppose to slow progression down I'm also a lot older. It sounds that your Arthritis gets you down. The pain can get you down too So, I written what I have for lunch. Hope it's gives you a wee bit help.
Iv always cooked from scratch, eat fresh fruit, vegetables I love. So, I don't think it is what I'm eating. My cholesterol is low. Blood Pressure High no doubt my portion sizes were too big . Wonder sometime if it's medication. Like me will have Tramadol. Co-codamol ask the Pharmacy if it could cause problems.
This is what I make for lunch in summer. 2-3 times a week make up a salad bowl cover with clingfilm keep it handy in fridge. ( don't make too much as after a couple days it can get soggy and then it's only fit for bin .
In the salad bowl is the usual lettuce, cucumber, Sybos then 1/4 chopped thinly green, yellow, red pepper,tomatoes chopped take seeds out I add basil leaves or grated carrot. Celery chopped small.
Once a week I buy packet Wraps. packet of " thins" -6 in bag. 4 Rolls, or seedy bread all from Aldi.
2-3 lots of cold meat. Sometime I boil an egg instead of meat. Or sliced cheese.
The wraps I keep in fridge, the rest I put in freezer take out what I need night before. This saves you wasting any.
I'll watch out for you in August and find out how you get on. Doreen
Thank you for that. The wraps interest me. I'll try those. The packet cooked meat I buy ,from Morrisons, is too high in salt so thought I might cook a joint and slice it up and freeze it. Not sure if it would be a success.
Cheese a problem for me because of the fat so I bought cottage cheese only to discover it is high in salt....
My arthritis not too bad I can potter about nicely but actual going for a walk is difficult as my hip will without warning give way. I took Arthrotec which is diclofenac and misopro something, for eight years then suddenly a few years ago I was told I couldn't take it any more. ....got too old I think or taken it too long. Now have paracetamol and codeine.
Thank you once again for your reply.
Ruth
It's well seen Iv just started I never thought about salt content . I will do the same cook slice and freeze. Any other tips. You said cheese? Doreen
Hello Ruth,
Am interested in how other patients cope with their diets. Have long been told to cut out as much salt as possible, and follow a low cholesterol diet as have had high blood pressure for over 30 years (always controlled by tablets which both seem to cause kidney problems!). Now told I have CKD and to follow low potassium diet!
Recently did survey of local supermarkets and found that Tesco's Healthy Living fat free cottage cheese has the lowest salt level (0.5grm per 100grm) and their wafter thin sliced chicken and ham were lower than any of the others. Do not have the chicken pack at present but the ham is 2.0grm per 100grm, which is 0.3grm per slice. They sell these wafer thin meats (others in range too) at £3 for 2 packs. I do realise even these amounts of salt may be too much for some diets, but one does have to have something quick on occasion! There is always liquid on surface of the cottage cheese, so draining it off could perhaps help lower the salt level?
Will be grateful if anyone would like to give advice as am still undiagnosed, having to wait from 24/5 to 15/8 before I will be able to see a nephrologist to hopefully glean some more information.
Best wishes to everyone - Curleytop1.
Good morning Ruth
I entered on computer What kind of cheese can I eat that has low Cholestral
Salt low fat it came up with a list giving you what each cheese contained
When I tried to cut and paste it went all wrong. If you go into Kidney.Org.UK
Jamie Oliver name came up. Check it out Doreen
Doreen, Try not to worry, this is your worst enemy. I am stage 3 at the moment and seemingly stable. This forum is great for news info and views of people just like you. Sadly GP's do not always provide clear advice and it is often conflicting.
In short think of all the things that put your Kidneys under strain or things that increase your BP which can push your kidney function down.
In short I have;
Lost weight
Exercise moderately 3 times a week at a gym with the help of a PT
Do not drink alcohol
Cut salt out and avoid salt content
cut out ready meals and eat a lot of fresh food
eat vegitarian foods cutting out red meats (still have chicken/turkey and non oily fish)
I do not stress about the littlke things anymore. Life is more important than work. I go through my life making 'memories' and just this little change in attitude has transformed my life.
Get a diet sorted with professional help as soon as you know your stage. there are people on here that have survived 10+ years on their current stage so there is not necissarily the need to panic.
I wish you well
C
Thank you , I'm half way there. Don't drink, been on diet 2 stone off only another 6 to go 
. I don't eat process foods Iv always made from scratch. Love fruit and veg. My down fall is or was portion size biscuits and cakes. Iv started walking the dog every other day short walks to begin with. Your right about panic, blood pressure is up. It certainly makes you take stock Thank you Doreen
Hallo CDH1, Very much like your reply to Doreen, its both practical and down to earth advice. Wishing you well.....
Curleytop1.
Doreen, next time you see the doctor do find out what level you are. It is really important as many people are walking around who are technically suffering from CKD 1 or 2 but will (if lucky) live out their entire long lives without ever knowing it or it having any impact on them. I am not even 50 years old yet but have late stage 4 (19% kidney function). I only found out last year after a routine medical. I have been able to keep stable and in fact increase my kidney function from 17% through making diet changes. In general I suggest reduce salt big time if you use it. Salt is very hard work for the kidneys to get rid of so you can reduce their work load by cutting it out. I used to have loads of salt on food but have quickly got used to not having it. Also up you intake of good quality spring / volcanic bottled water. I don't drink the mains water unless I have to (full of chemicals albeit at a low level as fine for people without kidney problems). Eat blueberries and other small dark berries as these are very good for the kidney function. And most importantly try not to worry. Also if you are on any medication then check that out with the doc as some medication can have a negative effect on kidneys. Do let us know what you readings are when you find out and the good people on this forum can suggest more ideas based on knowledge of that level.
Rabbit01
Thank you. The water will be changed my son who's 46 goes on about it tasting better, but as your saying it too I will change to bottle. Its better you taking control now and changing your life style. Which is brilliant . It will pay off. I'll keep an eye out for your kidney function and will let you now what happens.
Is your name Robert or rabbit as in you eat lots of salad. Only kidding. I'm Scottish we have an odd spence of humour. Take care Doreen
Hallo Rabbit01, Like your advice to Doreen, too. It helps all newbies to get a sense of proportion about things when they see practical steps they can take to help themselves, I'm sure, best wishes....
Curleytop1.
Hi,Doreen.
I went into panic mode aswell.
Probably a shock ,never heard of CKD.
This forum is very good for information and just to write your worries down,someone will always message you back.
I have high blood pressure and suffer from anxiety, which I am working on!
Seeing consultant tomorrow!
Ask what stage CKD you have, then you have a platform to work with.
Take care . Love Dawn
Thank you Dawn, that was kind of you to email me back. GP appointment
7th July but , blood and urine test Thursday. Will keep in touch
Doreen
Some good advice here.. The NKF also runs a helpline and provides medically checked info.
You'll find GP's of little use as its a 'specialist subject' which very few GP's choose to specialise in, which is a shame.
Good luck.
Thank you I went on to site you suggested loads of information about everything it was great. As you said once I know the stage I'm at then I can pick out what is relevant to me. Once again thanks. Doreen
Hello,I am 66 live in the UK.I was told I had CKD in 2006 and that was about all the GP said! I like you was really frightened I had never even heard of it. Since then I have had a kidney scan ( told I had a couple Cysts on each kidney! Every 6 months I have blood tests and since 2006 the readings have been much the same ( stage 3) I hope that continues,it is a worry with each blood test I have!
I and my family read about what I needed to do to keep my kidneys stable.
I don't drink alcohol, only have some red meat occasionally and just a little meat other times.I cook vegetarian meals often.I make sure I keep hydrated ( keep urine near as possible to pale straw colour) importantly no anti inflammatory pain killers.Low salt to help blood pressure and basically like the advice we are given for everybody fresh fruit and vegetables.
If all you are able to do is go for little walks that's better than nothing and will make you feel better. Try not to worry too much but I so know how you are feeling. Good Luck. Ann.😊
AnnyD
I'm grateful for what you said I'm 66 also. Iv been unwell since 2007
Iv been told it was Fibromyalgia as well as Rheumatoid Arthritis. My GP is great over the years Iv been for two full medical all back clear. It was embarrassing as they all came back clear. He would say there is something but it just hasn't raised its head. I'd made my mind up not to bother the GP again. By chance I'd to have a blood test before seeing Rheumatologist as it always fine decided not to bother with the results, as if there really was something they would phone me. Which they did after more blood tests and urine samples, I was diagnosed with CKD. Although shocked I was relieved It wasn't my imagination.
This site is really helpful. I can't thank everyone enough I genuinely thought I'd be writing to myself. It's helping me understand what we are all up against and not alone. Thank you all Doreen.
Hi Doreen,
From experience (in the UK) at first you will normally see a Consultant every six months or so who will monitor your kidney function and advise on any issues. Once you hit a certain level of CKD progression they should refer you to your local renal unit which is normally at hospital. They will closely monitor your eGFR which gives an estimated kidney function and if this goes too low they will look at dialysis/transplant.
I was diagnosed with FSGS 13 years ago and have recently had a transplant so it's by no means a bleak outlook just try and stay positive.
Gary.
Stage 5. Its tough but im tougher.
That's "inspiration" Shane84 1. CKD 0.
I too was diagnosed last week, the panic I felt is now gone, and I'm getting my señsible head on. Looking into changing diet, etc, but doing it all bit by bit. Someone on this sight told me about davita.com. I found this helpful
Jayne x
I AM 78 YR OLD FEMALE- HAD CKD 2 FOR A FEW YEARS- NOW STAGE 3. ONE KIDNEY PRODUCING STONES- NOT PASSING. LITHOTRIPSY DIDNT WORK. STONES REMOVED BY HOOK. CKD3 DIET- CONFLICTS WITH KIDNEY STONE DIET. WATCHING DIET-PROTEIN, CARBS AND FAT, CAN'T GO OVER 40 G PROTEIN. DIFFICULT TO FOLLOW-NOW DRINKING 64 OZ WATER PER DAY. YES, I, TOO AM ANXIOUS AND CONCERNED. DIET DIFFICULT TO FOLLOW----MY GFR AND CREATININE ARE WAY OFF. NO DIABETES- NO OTHER PROBLEMS. IS IT MY AGE?? SOMETHING I DID WHEN YOUNG, OR BAD DIET OVER THE YEARS. NEW DIET- LOSING WEIGHT FAST- IS THAT GOOD OR BAD??? NO CLUE- BMI NOW 25. BEFORE I LOST WEIGHT- WAS 10 LBS OVERWEIGHT. NOT ANY MORE. CAN'T GET ANY REALLY STRAIGHT ANSWERS WHAT TO DO. M.D. IN CHINA HAS BEEN HELPFUL- BUT HAVE TO GO THERE FOR TREATMENT-NOT LIKELY. IS ANYONE ELSE GOING AS CRAZZY AS I AM.????????
This is typical. I had the same reaction and I would say I'm normally quite rational! It was as if someone had erased my future! I was diagnosed with Ckd at stage 4 so all I was told was "next time we meet we will talk about dialysis and transplants " no help with a dietician because I, like you was glued to the Internet and everything said talk to your dietician . I was actually refused a meeting with a dietician by the consultant! It's shock ... But it floors you, I felt I was literally set adrift. I exercise and with my blood pressure under control have managed to regain some percentage but am still a stage 4. I now just get in with life but it took a good 6 months to get to some sort of normality. I wish you good news on the egfr reads x
Honkytonks, Our experiences sound very similar. I was the same as you, diagnosed at stage 4 after a routine blood test with 17% egfr. The first GP I saw told me to just go home and eat normally. After internet research when I did see the renal consultant and asked about seeing a renal dietician he told me “in my experience they are a waste of time”. On the next visit I pushed to see one and he then said that at stage 4 it was “too late.” I ended up calling the renal dietician at Brighton hospital and she gave me some pretty general advice (cut down on salt) but to be honest I was already doing that based on what I had found out myself from books and the internet. My egfr has remained stable for the last 16 months and I put that down to my own research, help and advice this forum and lifestyle changes but other than monitoring me through blood tests I have had no help at all from the medical profession.
whats you creatinine OR gfr values ? Are u hypertensive OR diabetic, need more information to reply.
i m ckd 3 with low gfr as 37
male 71 years old feeling fatigue i the morning
New diagnosis 
Saying hello to you all. I'm a nutritionist and yoga teacher specialising in kidneys based in London
New to CKD w/ Anxiety
