hi i got diagnosed a month ago with ckd stage 3... it been up and down for me...my function started at 59% 3 more blood tests it went down to 49% then 44% then up to 55%.....i new to this group... so it good to talk with others who have this
Christine, I'm sorry to hear of your recent CKD3 diagnosis but it's good to hear that although it's been down to 44% if has now increased to 55% - as it is yo-yoing somewhat, hopefully it will increase still further. I was diagnosed some 8 years ago starting off with an eGFR of 54 but it has slowly reduced with the latest one being 42. If you have any worries, then do ask to be referred to a good renal consultant.
Hi Christine, it sounds scary but there is no reason this should affect you on a day to day basis.I was diagnosed nearly ten years ago. I take medication daily and get the occasional infection managed with anti biotics. My numbers go up and down a bit but my GP just re does my blood tests to confirm. You don't say if both or one of your kidneys is the problem. Mine is just my right one. I've had tests at hospital but have been discharged.
my dr has not told me if it both or one.... i am not on medication... just told me to help myself also...and blood tests regular
I would definitely go back and ask your GP which kidney it is. When you say he has told you to help yourself, what does he mean by that? I take medication to flush out the kidneys(a dioretic) and medication to lower blood pressure as mine is dangerously high, caused by an enzyme released by the kidneys.( a ace inhibiter)
not everyone is the same or needs the same intervention but I would definitely be asking for clarification.
he told me... that i was too loose some weight..and excerise... weight i have lost...and exercise is being done.... so i guess i will wait for my next blood test to see if it stayed same or gone down
Ok, but losing weight and doing exercise doesn't improve ckd. It certainly makes you healthier. How is he planning on preventing it getting worse?
just by blood test each 6 months....i told him... i am always tired etc... he just repeats it mild
It is mild but still needs managing. It appears from what he's saying that he won't do anything until or if it gets worse. I personally wouldn't be happy with that. I was sent to hospital to see a urologist and had loads of tests to confirm and have check ups at GP every six months as standard. I would ask for more information. Also if your tired all the tine as him to check your iron levels when he next does blood test. It may never get worse but you still need to be informed.
thnks louise you have been really helpful...... guess we put our trust in the dr.s... but some should be more aware of your feelings.... xx
Hi Christine
I was diagnosed in December with stage 3 function raging between 44and 47 egfr. I am constantly tired like you say but I was referred to a nephrologist and have undergone scans and various tests. I have been to my gp on various occasions between hospital visits due to exhaustion and back ache as some days it's so severe I struggle to get out bed but I get told to take vitimans. I was really frustrated by this as my gp is off long term sick and everytime I went the surgery I seen someone different and told something different even down to my back ache not bein my kidney but due to a pull or strain. I decided to change doctors a few weeks ago and have been today as again the pain is unbearable and the exhaustion extreme with headaches and fever the surgery was amazing I have had bloods done a scam arranged and on antibiotics as I have an extreme inflamed kidney. If I was you I would get a second opinion I have been diagnosed with Iga by my nephrogist currently awaiting medication as I have other underlying illnesses which now need to be investigated before I start any treatment I also suffer swelling of hands and feet xx
Hi Laura, whats lga?.
I aways go to docs when I have back pain as it's usually a sign of an infection.I didn't go once and ended up in hospital for three days.
If your tired all the time get your GP to do a blood test for iron levels as some people with ckd have low iron levels.
I take iron tablets occasionally if I'm feeling tired. If you don't want to see GP add more iron to your diet.
hi laura.... i get backache to...also for weeks my legs have been hurting... but it like a waste when dr says it nuthing.... few ppl have told me to get second oponion...but when you get told it fine constantly i feel like i m being a pest.... but this is my life that being messed with...only way i know things is by the net,,etc... today my back is really achy...
Your certainly not getting the support you need from your current GP. As you say is your health. Even if your tired all the time and achy had nothing to do with your kidney your GP should be investigating it.
You can't take responsibly for your ckd of your not fully informed and supported. With my GP I only have to ring up to say that I think I have an infection and the give me anti biotics and I take a sample in when I collect tablets and they phone with results.
Can you see a different GP? Even if it's only for reassurance.
just went up to my dr..... i asked him wot kidney or just one was affected he said both are affected.... i asked him shouldn,t i been under hospitl also...he said your function for now is 55% they will not see you ..unless it dramaicatlly drops..... i told him i had back ache since yesteday..said it possible muscle ache and take parametol
this is 3rd dr i have seen
You normally don't see urologist if over 55% function Does he take your blood pressure? Ask for a urine sale test to see if the back pain is an infection.I would consider changing GP Are you in the UK? You have the right to move surgery.
uk yes...... my daughter seen i wa slil upset...she rung hospital and they are questioning why i am not under renal..consultant.she said 50 or round that% i should be at hospital having tsts.... and she said why has dr not done this...she told me i need to get my dr to refer me or go to walk in centre and they will do it
Christine
I'm not a medic, just someone with lots of personal experience in matters relating to kidneys, having had only one kidney for some 50 years. I hope my following words help to reassure you.
When I was diagnosed with CKD3 about 8 years ago, I learnt from a friend that her doctor had told her that "the Government had opened a can of worms in requesting that this eGFR test should now be carried out on all patients undergoing routine blood tests (for instance when on medicines to treat raised blood pressure, etc) to determine whether or not reduced kidney function is as a result of disease or due to the ageing process, with the result that all his elderly patients were rushing off to renal consultants in a panic" (I was one of those!). So although many of us have been diagnosed with CKD3, it does not need intervention unless you have other problems that need investigating, such as raised blood pressure, diabetes, etc. I complained to my consultant that if it wasn't a serious issue at Stage 3 why were we labelled with the scary words 'Chronic Kidney Disease' in the first place. He agreed that it was an unfortunate name which emanated from the States.
I don't know what age you are, but if you are, say, in your 70's for instance, then many of us older generation can expect our kidney function to start reducing slowly due to a natural ageing process - we would never have known about it prior to this test as long as our creatine and protein tests remained normal. And your GP is correct in saying that with an eGFR of 55 it isn't necessary to refer you to hospital especially if you have no signs of other abnormal markers showing in your blood (creatinine, protein, etc) - the renal consultants would be inundated and unable to cope if everyone with CKD3 was unnecessarily referred - no treatment is needed.
I am under a renal consultant purely because I requested an initial appointment privately. I considered that with an eGFR of 42, only one kidney, and the need to ensure that I was being prescribed certain BP pills known to help rather than worsen my kidney function.
However, if you are experiencing unusual symptoms - for instance if your backache worsens rather than improves, then your GP should at least refer you for X-ray. If it is simply a pulled muscle, try donning a support girdle for a few days - I have a slipped vertebra in my spine and when I experience pain in the area, I soon recover by just wearing the girdle.
Another tip, anyone with CKD should not take anti inflammatories such as Ibuprofen - I believe that may be the culprit for the onset of my CKD. I had a kidney removed in my childhood (I am now 72) and only developed problems after having to take Ibuprofen for many months - medics knew I was taking it but no-one warned me about the risks until too late!
I do hope this helps to reassure you.
hi.... i am 50...... i was told this morning both were affected.... my daughter decided she was gunna ring my local hospital.... they were questioning why my dr had not referred me to them...she explained that both are affected and 55%...they said 50 and round that area i should have been referred and i have been old i am to ring dr today and ask to be referred they was not happen...she spoke with the renal department
Christine if for no other reason than to reassure you I think ygo on toou should ask for the referral or if you don't think GP will do it go to the walk in centre.
Sometimes peace of mind is all we need. I had three or four tests done in hospital;to find cause and solution. As I said before it is only my right kidney but it only functions at 30%. abd I'm on medication.
Everyone is slightly different and it's easy to get bogged down with all the info. Go with your gut instinct and get the answers you need.
One good thing is that less than 1% of people with stage three ckd go on to stage four.