had a letter today from Arthritis Specialist 're Arthritis in both my feet
one of my diagnosis is Chronic kidney disease.
no one has told me I have this.
anyone on here suffer with this?
what are they doing for it.
I'm quite well at the moment.
Can't reply to any posts as kindle not working very well
and unable to fix it
thanks and keep well
Hello Bishop1,
If the consultant has just said Chronic Kidney Disease it is not particularly helpful as there are six stages. Each stage has a decreasing GFR (glomerular filtration rate). This is worked out from your age, gender and serum creatine level (determined from a blood test. After a lifetime of diabetes, I am at Stage 2 (GFR > 59 and < 90 mL/min). At this stage treatment is use of an ACE Inhibitor to control blood pressure (the ACE Inhibitor has a side effect of protecting kidneys) and slightly modified diet. I eat the BHF recommended Mediterranean diet but limit sodium (i.e. salt), phosphorus (e.g. peanut butter) and potassium (e.g. bananas). One to be particularly aware of are salt substitutes where the sodium is replaced by potassium.
Let me know what Stage you are at and the treatment given. My GFR has actually improved s the effort is worthwhile!
Thanks Michael JH. No one has told me I have Chronic Kidney Disease. I got a letter from Arthritis Specialist today, with all my various illnesses on it. My GP would also have got a copy. I'll ring during the week to make appointment to discuss further. I'll let you know how I get on. How are you keeping?. Thanks again
I was l ooking at my health record on line a few months ago and suddenly discovered kidney disease on them. NO one had told me either. I rang the GP in a panic. It turned out hat one blood test had had slightly high results and automatically triggered he system to add it. I remembered having t o go for a second blood test and that was perfectly normal. I'd been on diuretics for y ears but am now off them. I suggest you ask your GP. It may just be that one blood test went over that lowest level for a while.
This is interesting. I am officially rated as level 0 which technically doesn't exist. In reality I'm stage 3a with a creatinine level of around 126 umol/L and an eGFR of 49mL/min. The only comment I have had has been a cryptic note from my GP saying "high, but expected". I have a damaged right kidney as a result of falling over an exercise bike onto a concrete floor back in 2010.... don't ask! 😀
Sorry, had to laugh. Dangerous things, exercise bikes. Especially for people who might not technically exist 😀
Half my blood test results come back “high but expected “, so the doc doesn’t bother mentioning them to me.
I wouldn't mind, but it was in the garage awaiting repair... never did get it repaired! Fully understand you having a laugh. You're certainly not the first! 😁
i have had chronic kidney disease for 53 years ,just blood tests and medication, for blood pressure and cholesterol, mine stable at about 30 percent , stage
Thanks for your reply. Upset at not been told I had it. I have an awful lot of issues, diabetic arthritis,glaucoma, diabetic retinophy, bp,asthma, silent heart attack in 2020, CABG 2020. Could have done without this I'll be ringing my GP for more information. Keep well and have a good day
My sympathy with Kindle. I find I have to send very stilted messages as Kindle is so restrictive in want it wants me to type.
Good morning Bishop1. Yes I have chronic kidney disease. It was found out when I was 42 that since birth my 1 kidney was small and only working to 25% Capacity. Eventually I asked to be referred to a kidney specialist and they now keep regular checks on my kidney function. Which is your EGFR number I think it is. Once it gets to single figures you are very close to Dyalisis. Keep a good weight and drink 2 litres of water a day. And try not to get water infections because they cause your kidney function to drop. And it does return to as good as it was. My EGFR is currently 28. If your on Facebook there's a fantastic group on there Chronic kidney disease Run by Andrea. Take care. Brian
I received a letter out of the blue from my GP practice stating I had chronic kidney disease stage 3 a, probably age related. When I checked back on my blood tests I have had this for at least 2 years. So why did they suddenly inform me now? I think it is probably as a result of a NHS directive.
I was concerned and requested a GP appointment. I only saw someone on a 12 week stint who couldn’t have cared less. Said there was no treatment and when I asked for dietary advice was very dismissive. Good old NHS!
HI I have CKD stage 3 and have had it for over 10 years.It is stable at the moment and BP meds help with this.
I have recently read that the majority of people have CKD at one stage or another, most of them unknowingly until being tested, often for an unrelated condition. Now that we have online access to our test results, many are finding that they have actually had this condition for some time, years in a lot of cases. Diet can sometimes be to blame, with overloads of carbs and sugars, but medications and other medical conditions can also be the cause, so a little investigation is often needed. There are various ways that some have improved their egfr, it can be done. As you are already on HU, the kidney forum is extremely helpful and supportive. My partner has had CKD for many years, initially unaware of it, and I received results yesterday showing my first egfr below 60, so I shall be busy trying to work out my cause, although in my case I would imagine age could also be a factor!
hi I have it, consultant said it is caused by the meds I am taking, immunosuppressants, statins,lansoprazole , amitriptyline,famitidine,risodronate, they are just monitoring it at the moment.I haven't had any treatment at all.
l have chronic kidney disease and only found out by accident when l was given a list of what is wrong with me by the doctor; to take to the hospital when l was going for something else. Also going by my symptoms l had to ask the doctor if l have heart failure. The answer was yes. I don't know how long l have had these diseases. I thought the medical profession was supposed to be getting better at informing you about the state of your health. The trouble is heart medication is bad for the kidneys. I haven't been given any medication for my kidneys.
hi.. found out about 6 years ago when GP just told me out of the blue during a routine appt!… at the moment i’m in stage 3b.. kidneys currently working at 32%.. on BP meds.. statin and aspirin.. started type 2 diabetes meds yesterday.. was informed it’s really a Catch 22 situation …bp meds can affect kidneys.. they took me off bp meds for 2 weeks but then it shot up lol..
Hi, I was diagnosed with ckd a year ago in hospital and my level dropped to 13, they were due to start dialysis when my kidneys improved slightly. My level is now at 51 and that means I have stage 3A.I also have T3cDM, necrotising pancreatitis, Enlarged spleen because of an Ercp that went wrong while getting gallstones moved out the bile duct. I also have liver disease.
I am on vital drinks but haven't been given a special diet, but that maybe because I have lost lots of weight because of the pancreatitis and am on creon. The nurse just told my to drink more and keep the kidneys juicy.
Heart Failure and Kidney Failure
Microvascular disease 
CAD and chronic tiredness 
Chronic illness life 
cardiovascular disease 
