CKD ( chronic kidney disease) and the self-management of same.
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10-08-2021 4:57pm#1
I thought to assemble a post(s) on this subject for a couple of reasons that will become clear. It wouldn't be usual for me to reference Boards when I want to find out about something, so I expect someone finding out they or a loved one has CKD could see them very well coming here. I thought to write something of my own experience so as to help guide others.
One reason for this post is the fact that:
- CKD (chronic kidney disease) is a "silent killer" disease. Unless detected per chance, you won't know you have it until symptoms start - which will tend to occur when there is very little kidney function left. For instance, I've about 30% function at the moment but have no symptoms. Indeed, folk can donate a kidney and not notice they are running on just one - we have huge excess in kidney capacity if we've healthy kidneys.
- Covid has had a significant impact from a kidney-health perspective. My renal dietician says that early indications are that 1:4 people admitted to hospital with Covid have been found to have suffered kidney damage. Kidney damage often doesn't get better - once damaged they very often stay damaged. Ireland doesn't have a joined up programme to screen for kidney function. And so, people are going to be walking around with kidney damage, either Covid or non-Covid related and won't know it. I myself was only found to have CKD when being checked for something else only mildly related to kidneys.
CKD is a progressive disease. That is: once you have CKD, your kidneys will generally keep declining in function until at some point they fail to do sufficient filtering work. At that stage you either go on dialysis (machine filtering) or get a kidney transplant. If neither of these, you will quickly die due to the effect of toxins building up in your blood.
Living on dialysis isn't a bed of roses. Nor is getting a transplant some kind of magic wand. Life is tough and mortality is high when you're down in that territory.
CKD is an umbrella term. There are any number of causes of CKD. Diabetes and high blood pressure are two of the main reasons. There are many other causes though.
CKD can progress swiftly or it can be a slow mover over many years. But the general understanding in the kidney health world (nephrology) is that function will always decline and that dialysis / transplant surely awaits someone with CKD. If you live long enough. Because...
Poor kidney function has a very significant impact on heart health. CKD-ers are the group most likely to die from heart disease than any other single grouping. And that includes smokers. If you have CKD you are far more likely to die due to heart disease than you are to get to dialysis/transplant. Those latter will typically result in you dying younger than you would had you never had kidney disease, but heart disease is the one that will likely kick in sooner than even that.
CKD and its stages:
You can read up more on the various stages by Googling. There are 5 stages, 1 being early and 5 being end stage or kidney failure. There is nothing much to delineate the stages other than decreasing kidney function. You won't, for instance, notice anything much when you move from stage 1 to stage 2 or from stage 2 to stage 3.
People can be diagnosed at any stage but it seems that stage 3 (which is broken up into 3a and 3b) is a common one. Its around there that markers in the blood might be off enough to catch the attention of a doc. The most obvious reliable marker is a thing called Creatinine. Creatinine is a waste product which, if not being filtered from the blood by the kidneys, indicates there's likely a kidney problem. Creatinine ought to be in the range 65-107 umol/litre. If that number exceeds 107 significantly then a doc is going to look further. Me, for instance, with kidney function of 30% has a creatinine reading of 201. Creatinine will vary and there are other explanations for elevated creatinine (heavy weight lifting will raise it for instance) but it is the "canary in the coalmine" for indicating CKD
What happens if you're diagnosed with CKD.
Well, nothing much, as it happens. Some underlying diseases causing kidney damage might respond to drugs but kidney forums are littered with people who report very little being done post-diagnosis. The current global paradigm for treatment of CKD (if the drugs don't work, and the mostly they don't) is to do little or nothing until such time as your kidneys fail or approach failure. You might be put on a medication called "ACE inhibitor" which helps slow disease progression a bit. That medications original function is blood pressure medication so it will also lower blood pressure - if that happens to be something you suffer from. High blood pressure isn't good for kidneys. If you've diabetes (another significant cause of CKD) then that will be treated. But largely it's a matter of waiting til you fail.
That was my own experience: diagnosed 3a per chance about 7 years ago. I was put on ACE a few years in and the progression didn't seem that fast. From 52% odd function at the start down to about 43% those 7 years later. Your kidneys decline as you age anyway and I had my head in the sand. I was told to go easy on red meat and that was about it. I was happy that things seemed slow moving and that I wasn't being told to pay any attention to it.
I had a bout of Covid this January and whether or not that affected things, my next annual bloods showed me down in the mid 30's% function. I got another check done a couple of months later and they were down to 30%. I emailed my kidney doc with "URGENT" in the subject line..
My kidney doctor was, well, fatalistic. I had been told for years that CKD was a progressive disease. It wasn't unusual for things to go down. I was asked "did I know someone who could give me a kidney .. come the time?" Not exactly the Cavalry I was looking for although to be fair to my doc, I'd been told this over the years. But it was merely an underlining of what I subsequently found out: the treatment paradigm involves doing nothing much until your kidneys fail.
I woke up.
Well it turns out YOU can do a bit more than nothing.
The US National Kidney Foundation (NKF) is, it appears, the significant body looked to globally for direction on matters CKD. The NKF issued guidelines in 2000 (!!) and those guidelines don't make reference to treatment of CKD at earlier stages in the disease path. Rather, the area for taking action is in later stages of the disease, when dialysis/transplant is looming. The actions taken are to prepare for dialysis/transplant and maintain dialysis/post-transplant. There isn't any hell for leather attempt to prevent progression of the disease so as to stave off or delay arrival at dialysis/transplant.
This is what you find in practice "on the street" as mentioned above. If you are diagnosed at stage 2 or 3, nothing much is going to happen, bar an annual check of your bloods. Take me, for instance. I'm knocking on the door of stage 4 and my last visit to the kidney doc involved no change and no advice. On the way out the door, I enquired whether I ought to change diet anyway? I was told to give a nod in the direction of a renal-friendly diet and advised to look at the (pretty useless, it transpires) Irish Kidney Association website for tips.
(re: useless. The IKA info booklets contain some excellent diagrams, diagrams my long-dead father was commissioned to produce maybe 40 years ago. I can remember him laboriously stitching the colour separations together at the kitchen table. The age of the diagrams somewhat reflects the age of the thinking that goes into how you should approach your disease )
The NKF issued a (long awaited) update to the guideline in 2020 however. Those guidelines acknowledged and even promoted a pretty radical finding. The finding, arrived at through a lot of scientific study, was that DIETARY modification can have a significant impact in delaying the progression of CKD if embarked upon at early stages. Now the NKF is a conservative, slow moving body (as you can imagine - apparently the kidney medic world has waited since 2016 for their update to be published). When you dig into the science which caused the NKF to issue this generalist update, you'd see that there is great promise in dietary modification (in short: a plant-based, protein-limited diet). And when you go online you find that early adopters, folk who've dug around for themselves and gone on solo-runs, are reporting remission of the disease.
The trouble is: it takes many years for scientific discoveries to translate into changes in clinical practices - 17 years on average, apparently. And so you won't see the 2020 guidelines manifest in clinical practice change for many, many years. In other words, if you were diagnosed with CKD 1, 2 or 3 tomorrow and you went to see a kidney specialist, you would not be told of the advice contained in the 2020 NKF guideline. You would still be subjected to the advice of the 2000 guideline (a.k.a. do next to nothing and let your disease progress unhindered)
The NKF themselves set about fleshing out the bones of how the monolithic machinery of medicine has to be made to change to implement the latest findings. They urge increased training of renal dieticians, for instance. For without renal dieticians, how can you go about implementing dietary change in a clinical setting? It is a specialist field after all.
But think: how long will it take before significant numbers of students are steered into renal dietician courses so as to put flesh on the latest scientific discoveries? How long before there are even renal dietician courses available to train the students? Whose going to pay for all these extra dieticians? 17 years is a conservative estimate for this country, I'd say.
A further proof of the pudding? If you decided you wanted to take the new dietary approach you'd find there are no renal dieticians available in Ireland (or England or the US or anywhere). There are only a few in the country and what few there are are kept busy dealing with dialysis and transplant patients. That's the paradigm (action at the end stages of the disease, not slowing or halting it) so it follows that that's all the renal dieticians there's been a market for. It's not like cardio and all the rest where you can go private. Private renal dieticians don't exist because The Paradigm hasn't required them. If you arrive at the point of needing dialysis, you'll get a renal dietician without waiting: there's no need to go private.
What you can do:
The No.1 takeaway from my own experience and the experience of many who are managing the disease is that you need to be the Commander In Chief of your disease management. For it is YOUR disease. If you decide to hand things over to the doctors then you are effectively trusting that the doctors are abreast with, and more importantly, implementing, the very latest practices. Whatever about other diseases, it is crystal clear that in the case of CKD they are not. Nor will they be for a good number of years to come - at which point the science will, in all likelihood have moved on again. It's not that the docs aren't aware of the newer guidelines, but they are part of a monolithic system that moves slowly. What use recommending a fairly radical diet requiring medical supervision, if there are no renal dieticians to do that supervision??
I'm only a few months into my own journey of Commander in Chief and the results have been startling. My cholesterol, for example, was a 6.6 a mere 3 months ago. I was recently told by my doc that I'd have to go on a statin - remember, cardio is what kills the CKD population. I'd just begun a plant-based, low protein diet though, so I held off. A few months later and cholesterol is at 5.4. It's a bit of a pisser not eating meat anymore (but far less of a pisser than dialysis would be) but the reward is bringing a serious metric for cardio health (cholesterol) into check. And not having to take (and pay for) a medication that isn't without it's downsides.
Another not-very-good blood marker is a thing called urea. Urea is a waste product dumped into your blood by your body metabolizing protein. As your CKD advances, your kidneys won't be able to filter out urea at the rate you're dumping protein in, so levels rise in your blood. This isn't good as urea is a toxin and causes more problems, including faster progression of CKD. Indeed, dialysis was "invented" in the first instance, to filter out excess urea. My readings were on the rise over the years. The healthy range for urea is 2.5 to 7.8 and I was at 13.5 a few months ago. A few months on a low protein, plant diet and urea is back to 6.4. 6.4 is within range and contributes to slowing the progression of CKD
The point here isn't so much to go through my stats. The point is that when you take control of your own CKD, you could very well start booking results that you otherwise couldn't have.
In my next post, I'll add some links and info so that if you want to start looking into slowing (or perhaps even halting, some have) the progression of your CKD, then you've an idea where to start looking.
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thank you for this -really informative
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Hi Op,
Great Advice.
I have had CKD about 20 years which I’m now in stage 5 which ain’t as that bad you think and you just get on with it.
my only advice:
- be careful on a plant only diet with your potassium levels, this happened me after 3/4months and I had to spend a couple of days in hospital to get under control
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It seems my kidneys are still handling potassium reasonably well - potassium is in spec at the moment. I suppose the name of the game is to retain as much function for as long as you can - there being more flexibility in diet and ability to eat what you want the more function you have.
You not getting much by way of symptoms at stage 5?
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It was on my mind, at the time of my first post, to link to helpful info but I got sidetracked. Might as well do so here.
When I realised that there would be little action taken to slow or halt the progression of my CKD, I immediately went looking online for alternatives. As you would expect, there's all and sundry on the matter of kidney disease, just as there is on any other medical condition online. Being a mechanical engineer though, I'd tend to be interested in what the science has to say rather than listen to someone on YouTube with a view. Opinions, as they say, are like arseholes...
I'll make no bones about it: if you have CKD then you either saddle up for the battle ahead. Or you wander into earlier ill health / death than you otherwise might. Earlier by a good degree by all accounts. Life at dialysis/transplant isn't for the faint hearted and tends towards a decline in overall health. I was under the impression that dialysis was an inconvenience but you could more or less soldier on unaffected by lack of kidney function. The life expectancy stats once starting dialysis would indicate otherwise.
Stopping Kidney Disease by Lee Hull.
The first best single source of information I've found is from a guy named Lee Hull. He is a guy whose been CKD for a long time and has fought tooth and nail looking for for a cure. There isn't one he concludes, but what he has brought to light, earlier than anyone else, is the latest science on the subject. That science points to the benefit of dietary modification in slowing or halting the disease.
Whether you follow his route to the letter or in part (as I do) or not at all, one thing is sure: if you read this book from beginning to end x 2, you'll rocket up the league in terms of knowledge about the disease and how to go about managing it. You will know more than your GP and you will probably know more than your nephrologist.
The book consists of a lot of abstracts/conclusions drawn from scientific papers on various subjects. It's not the easiest of reads, especially if you're non-scientific. You can skim the science if you're not particularly scientific and Lee has underlined the relevant bits to help you get to the core quickly. At the end of the day, it's not understanding the complexities of the science that matters, it's understanding the conclusions that need to be drawn: what action you need to take to slow or stop disease progression.
What Lee suggests - which is something that is becoming widerspread knowledge - is stringent dietary intervention. Once concluding that, you decide whether or not to thread that path. He suggests you follow the course for 3 months. And then take bloods and compare to bloods taken before the intervention. You'll either get an improvement or you won't. If so, you continue the intervention, if not then not.
You can get the book from Amazon. You can get the jist of it for free using the Look Inside feature on Amazon.com. It's about €20 and it's money very, very well spent. There simply isn't a better one-stop-shop for getting up to speed on things.
There are any number of support sites on line but I've found folk at the above site are well clued in on the detail of not only plant based diets but on a lot more besides. Healthunlocked in a general health forum and you've to join groups of interest. The two kidney ones I've found useful are "Early CKD support" and "Kidney Disease", the latter being the better of the two
The National Kidney Foundation KDOQI
The NKF is a US based organisation and is something of a world authority. They issue guidelines which tend to be what the rest of the world follows. They were behind Lee Hull in advocating a plant based diet as a preventative step for early stage CKD but in 2020 they finally updated their guidelines. Click on the link below and scroll down the page and the guidelines are all listed. Worth an orientating read.
https://www.kidney.org/professionals/guidelines/guidelines_commentaries/nutrition-ckd
What is worth noting is that your Irish nephrologist probably won't be working to these guidelines (the previous guidelines were issued in 2012 and had nothing by way of preventative/dietary intervention at early stage CKD). One reason for this is that there are insufficient renal dieticians around to supervise a plant based diet for the majority who won't be able to figure it out for themselves.
This is a dietary tracker which allows you to log all your food intake. Such a tracker is essential for the close monitoring of your nutrient intake. Protein intake is going to be fairly limited in your new plant based regieme. Yet there is protein in just about everything! So you need to track your intake to ensure you don't exceed your limits. You also quickly get a hang of what foods are protein rich and other nutrition poor (e.g. bread). And so you can figure out what to limit and avoid.
The app is free but if you want the most useful information then it's about €30 a year. The subscription will allow you to access historical data - which is what you need to steer things. If you can see that your protein intake (for instance) is 30gr on average over the last 3 months and 30gr is your target, then you know you're doing good. It doesn't matter so much if you have 35gr today and 22 gr tomorrow and 34 gr the next day. Its the longer-term averages that matters. The app is pretty comprehensive for the Irish setting too.
TIP:
If you've CKD, you will likely be put on an ACE inhibitor medication to reduce proteinurea (protein leaking out in your urine a.k.a. foamy bubbles in your urine). You won't have been told at what time to take the medication though. It turns out that ACE has best effect as a heart-aiding medication if taken at night - so if you might as well take it then as at any other time (ask your doc if that's okay)
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An interesting read, alas too late for me, as I've lost my transplanted kidney to cancer after 11 years, and am now back on dialysis, haemodialysis at home using a fistula in my arm. Yes it's tough but I'm still here, hoping to get back on transplant list next year. i get great support from the renal unit and consultant.
yes medicine is very slow moving, when I first got ill, you had to be on dialysis before you could go on transplant list, now they will put you on list prior to you getting that ill, the problem now is there isn't enough transplants taking place.
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Hi Antiseptic I hope that you are still safe and as well as you can be with CKD.
I have just been diagnosed with stage 4 CKD as a direct result of an over active immune condition which damaged my immuglobin ( IPA )
Yesterday a junior doctor ( I am attending a specialist in a main Dublin hospital. just told me in a very matter of fact way that my numbers had dropped since my last appointment two months ago and that I had stage 4 CKD. I am being treated successfully for Psoriatic Arthritis over the past 12 years, but my kidney blood count and high blood pressure was overlooked for an extended period of time.
They have my blood pressure well under control and I am taking kidney medication but I am worried about the future.
Is your diet still working ok and how is your progress with CKD
Best wishes
Danny
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Thanks @antiskeptic for this great post, I am learning loads here.
My dad started dialysis just last week (not in Ireland).
He has been diabetic for decades, and we luckily identified a huge tumour on one of his kidneys back in 2008 and that was removed without any complications (other than the hernia the surgery left behind). However over the years, he progressed thru various stages of CKD and main marker his doctor was keeping an eye on was Creatinine, and lately Potassium. My dad being one of those people who wouldn't take the meds if he feels great - often skipped taking expensive injections to improve his blood count. And eventually the potassium crept up and he was various meds like K-Bind etc to try and bring that down (worked to an extend).
Once again, perhaps due to progression of the CKD to next level, he experienced breathing difficulties and ended up in ICU - minor heart attack with pulmonary edema and other complications. After a number of difficult days in ICU he pulled thru under the care of a large group of doctors & specialists - and now he's on hemo-dialysis and recovering very well at home - three times a week. A huge time-sink (4h x 3 times a week) but absolutely amazing that it's possible to hand over some of the responsibilities of an internal organ to an external device like that.
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this is a very interesting thread. My situation is I’ve MS, had ulcerative colitis until a colectomy, a lot of medical stuff in my life. I’ve keep my own medical records as there’s no joined up communication in Irish medical systems, indeed I was diagnosed with MS very late and now I learned not one scan has been seen by my neurologist because of poor comms.
All that aside, I observe that my eGFR is on a downward trend, noted by my GP who more or less says nothing can be done about it, just keep an eye on it, and that when I’m down to eGFR of 25 that it starts to really matter. My recent eGFR usually varies between 45 - 50, which of course is fine. It’s just the trend. An incidental finding on a MRI showed very tiny cyst-like appearance.0
