My mum's elderly aunt was recently told by her GP that she had kidney failure despite having an egfr of 43 ml/min. My dad has advised her that the GP is talking tosh and she is just stage 3 CKD.
I realise CKD/stages may be more complex than just egfr measurement with symptoms taken into account but I tend to agree that this is sadly yet another case of a medic ignorant of specific diseases. And I base that on guidance of others more expert in this eg links below. Any views?
Sometimes I think Doctors refer to all kidney poor function as failure. At 43 %, she is not in at End Stage. One refers to lack of 100% function, and the other means no function. End Stage is 15 or below. Again, just a number. Many people are still functioning at less than 10%. They are just words.
Thanks. Personally I believe medics must be clearer. If it's failure, it's ok to describe it as such but otherwise it's misinformation & misleading.
The misdiagnosis (sadly common) caused my mum's aunt to break down in front of the GP and again when relaying to mum yesterday. Medics have a duty to do better.
No problem, I could've shown several other links eg my dad sent 2 different ones to mum's aunt. It beggars belief that medics can get something as simple as kidney failure so wrong.
PS tbh I think the niddk doc is a bit more thorough than the NKF (honestly, no offence!) but I realise many on here read NKF.
It mostly depends on the rate the GFR is declining. The other indicator is high level of proteinuria. But yeah, calling eGFR in the 40s end stage is a bit of a stretch.
But proteinuria measured how? Mum's nephro has been unconcerned about fast increasing albuminuria via urinary ACR past 4y so seems more interested in 24h data eg that her proteinuria figure is <1g/24h. So it's low according to NHS below:
like others have said, egfr is stage 3. Some doctors won’t even say anything until you are stage 4 or 5, so you are actually lucky that the doctor said something now. At stage 3, the best thing to do is follow a kidney friendly diet and if you do, try to limit or eliminate red meat, smoking, drinking, and use of NSAIDs likr advil, aleve, and Ibprofen.
Indeed, my mum found out via my dad when she was stage 3 CKD (ultimately leading to a kidney cancer/nephrectomy!). So medics were at fault with her, then again with her aunt!
Mum, a non-smoker, minimal drinker, NSAID avoider, has followed a Nutritional Therapy protocol since the nephrectomy and seen a significant increase in eGFR despite continual, fast ACR rise (see my previous reply) which I assume is largely due to a solitary kidney. Sadly her nephro has been no help but she will try again at next consultation in 2 weeks.
What CKD progress have you made and was it also drug-free, like mum's to-date?
I have FSGS, which is progressive in nature, so I can only prolong the disease. But it takes 2-20 years to get to kidney failure typically and I am 14 years since diagnosis and still not on dialysis.
I follow exactly what I said above, and limit animal protein, no dark sodas, and drink plenty of water. I also have a solitary kidney. The other has been atrophic since I was a kid.
Thanks for this info. I admit I was a little surprised that your ACR was as low as that since it's only 20% over normal range (3.5 our surgery/lab here in UK).
Mum's is now 31.4, maintaining an increase of ~100% /yr but her nephrologist has never been concerned about this and seems more focused on 24h data (despite our concerns in consultations since Nov '20!) and eGFR, with comments including:
(i) "Protein/creatinine ratio of even 50 would be OK" despite normal 0-14 (3y ago)
(ii) "Won’t ever be a worry" re 24h urine still increasing (2.5y ago).
In my experience with hubby, eGFR becomes less and less important as time went on. eGFR is only an estimate or an overview - the data is a compilation of creatine, age, sex, etc. It a type of probability which actually clouds the actual situation that may be happening right now. The data that really matters is the unadulterated hard figures - the creatine numbers, the BUN numbers, the albumin, the blood pressure, etc. Generally speaking, creatinine is the most significant and most watched. It's actually very educational to watch the focus shift as time goes on - my hubby's eGFR was relatively steady right before his kidneys quit, but his other numbers were sending up all sorts of red flags. The nephs hovered around him constantly taking and analyzing my hubby's hard data and blood pressure right before starting dialysis. Same thing happened after his transplant. He was hospitalized recently with a-fib and the first question again asked by the doc in the emergency room was "What's his creatinine?" To date, the entire focus for my hubby is on everything but eGFR. So, take a look at the trajectory of all the data - see what's happening inside for real. It'll help in figuring out next steps, etc. That way, you won't be ambushed by anything. Wish I'd been more prepared.
You certainly shouldnt feel any guilt, as per point 4 in my summary earlier today.
My mum's nephro has focused on her 24h urine data (mainly) and eGFR despite us raising concerns about ACR - see my reply to Turtlepad513 just now. Weve had to assume that's because she's had a solitary kidney ~6.5y but the nephro not clarified to-date (it's on list of questions for next consultation in 2 weeks!). Re the numbers you listed, for mum:
1. Creatinine. As I understand, this has an inverse relationship to egfr and so mums serum creatinine steadily improved in past 6.5y, falling down to normal range ~2y ago. It's edged back to 40% over range recently which we think/hope is due to mum's slip from NT protocol then recent COVID and shingles 🤞.
Urinary creatinine has seen a steady fall, then sudden drop then recent climb. Normal range not given now but always within a N range once shown and 15% through that range now.
2. BUN. Serum urea's been relatively steady at ~30-60% over-normal, post nephrectomy.
3. Albumin. Serum figures stable throughout at 40% through normal - but uACR as above.
4. Blood pressure. Since adopting a Nutritional Therapy (NT) protocol, that's been normal for 6y, without medication (on a drug prior to NT).
Besides monitoring data above (and more), we noticed a steady fall in serum bicarbonate in the past 3.5y and are aware of possible consequences. Sadly mum's nephro hasn't retested this time or commented on it in past consultations....but it'll be raised in 2 weeks' time!
Thanks for all replies. My summary is below and Ill assume its reasonable unless advised:
1. The theoretical,/scientific determination of kidney failure seems clear e.g. links I showed and/or the graphical representation below via niddk.nih.gov/health-inform....
2. Medics do not always follow that determination.
3. As with most things medical, I realise that kidney failure can be person-dependent with variability between actual & theoretical determinations but that should be relatively small.
4. There are also person-dependent variables which can make progression of kidney disease difficult to monitor e.g. eGFR. In such cases, it's reasonable to expect that nephrologists should be able to use experience of past cases to make relevant judgements.
I suspect that's what the medic may have meant when speaking to a vulnerable old lady....but I believe that's misleading and so wrong, particularly when organisations such as NIDDK, NKF etc go to lengths to define it more precisely! Otherwise it could be said that you/we all currently have heart failure because one day it will fail!!😘🤪🤥
I sometimes think that using "two-kidney data" when assessing a one-kidney person may not always be appropriate. A single kidney doesn't always take over the functions of both kidneys. However, keep an eye on the creatinine - when creatinine reaches 4 or so - in the US - there's a lot of concern. Then, add in the aging process... I would say simply keep on keeping on. If your mom is feeling well, eating properly, etc. that's all good! We all need to enjoy life while it's here for us!
Thanks, I tend to agree. Is the 4 you are referring to URINARY creatinine in mg/dl units?
If so, mum's latest figure is 57.8mg/dl (converting from 5108 umol/l via unitslab.com/node/44 ) with last 2 readings slowly increasing 🙂 This followed a sudden drop to 20mg/dl (bottom of normal range) a couple of years ago. I estimate that 1-off drop rate to be ~150 mg/dl (5300-1800 umol/l over 3m) which would be a concern according to linked report below. Of course, it was only 1 reading so couldve been erroneous? Before that, I estimate yearly post-nephrectomy yearly decline rate was 10-12mg/dl.
Note from "Kidney and Patient Survival" section of the report "..eGFR is a stronger predictor for both patient events, UCr decline provides additional prognostic information". But when the above, rapid drop was brought to her nephrologist's attention at the time, his response was "That’s good news"!
Her serum creatinine is now 100 umol/L (1.13 mg/dL). She's displayed few of the symptoms of later-stage CKD eg insomnia, past occasional haematuria, and is generally fit/well.
eGFR is truly a predictor or warning, nothing more. It's like other serious matters - an active heart attack, for example, eclipses those earlier warning that one is predisposed to that happening. The old saying, "The horse has left the barn" comes to mind. eGFR is probability that the horse will leave the barn through the open barn door. The hard data provides specifics on on the horse's "internal condition and capabilities" - this becomes particularly valuable as tools can be used to rope the horse and keep him safe.
There's a lot of debate re urinary creatinine or blood creatine. In our experience - definitely not speaking for others - blood creatinine becomes increasingly important as kidney decline progresses. Looking back over my hubby's history, I suspect it has to do with people not only having a harder time producing urine as kidneys decline but also the health of the urinary tract (more utis, etc.) during that process - influencing decisions and obscuring outcomes. This shift to hard data started (particularly from blood draws), I think, as soon as my hubby entered late Stage 3. Today, none of my hubby's doctors mentions eGFR at all - including his nephs on his transplant team - it continues to be all about the hard data. They closely examine the blood draws although they also take urine samples. When I brought up increased proteinuria (obviously from the urine sample), the transplant director mentioned that they were addressing that but to be aware that my hubby's low level uti (which he doesn't notice himself) as well his nonfunctioning natural kidneys slowly reducing in size can also show increased proteinuria - I sense that both situations may be sloughing off cells or particles of some sort into his urine and influencing proteinuria data. So, kidneys and the bladder can influence each other, but also have their very own distinct features. I suspect that when things aren't clear, it may be best to rely on blood draws. But I really want to stress, I'm not a medical professional. This is simply my own observations and experiences as a spouse to a diabetic man.
Thanks. I realise you are only presenting your personal observations but that's why most are on this forum - to share experiences.So I assume you were indeed referring to urine creatinine re a warning fig of 4???
But its sensible that both urinary and serum data must be watched. In mum's case, serum data has been relatively better to-date and easier to follow whereas urinary data has been stranger and seems more worrying.
But I'll continue to monitor all. Sadly the support from her nephro has been awful and seemingly worse than yours. Basically his "advice" has been limited to "keep doing what you're doing" and other positive comments which I've indicated. Whilst that's nice to hear, it would be good if he at least explained the rapidly increasing urine albumin and if it's of real concern in her situation eg solitary kidney. But I'll continue without him and plan to partake in next consultation on 2 Feb.
As my hubby was heading towards dialysis, they were relying more and more on blood draws and the figures came from them. Right before beginning hemodialysis, they were taking blood every 3 or 4 hours, watching the levels - particularly creatinine. At one point, I asked them to pick up his urine sample which was on the table for hours. I got tired of seeing it being ignored. Yes, it's a good idea to be there for your mom. I wind up asking the questions, it grounds me. My hubby prefers to listen and leave as soon as possible. So it's good to have two people there. The examining rooms are set up that, actually, in the US. There's always an extra chair for you.
Again it is a causal matter of semantics. He could have expanded. I think you have straightened it out using your research and explained to your aunt. No need to make yourself crazy because of a slip of the tongue.
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