just joined forum. ckd3a patient. - Kidney Disease

Kidney Disease

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just joined forum. ckd3a patient.

joethe profile image
9 Replies

my first post to this forum although i have been following for quite some time and finally found the courage to post.

i wish to thank all the knowledgeable and regular posters who have provided more information, guidance, love and support than my doctors. to all of you eternal thanks!

i am a 66 year old male in canada. i first noticed my low gfr 57-63 when i was 50 years old. my gfr had fluctuated since then between 57-62. recently i.e three years ago my gfr showed a decline the range now is 52-56.

prior to this when about 45 years old,i acquired an ecoli infection in my urinary tract that was treated with antibiotics and had follow up imaging an intraveous pyelogram. i know they injected me with a dye and also the bowel prep was called Fleet soda which i think is not used anymore as apparently it can affect the kidneys.

i wonder if the UTI cause some sort of minor damage to my kidneys which explains my ckd 3a?

when i was 50, my doctor reluctantly referred me to a nephrologist and my ultrasound was deemed normal. my bloodwork and urine was also deemed normal. i asked my doctor if i had ckd and he said no. i asked the nephrologist if i had ckd as my gfr was less than 60 and she said yes but only if we go by the strict definition of a gfr less than 60.

with my recent decline to the 52-56 range i asked my doctor if it was something to be concerned about and he said no its just from normal “aging”

i asked for a repeat visit to the nephrologist who did a 24 hour urine collection, repeat blood and urine assesment. the nephrologist said everything was normal. however my gfr is still below 60. the most recent test was 55.

my 24 hour creatinine calculation showed a gfr calculation in the 63-70 range but i have since learned that the 24 calculation typically does show a higher result.

in the last 15 years my creatinine has been in the range of 107-129 umol/l.

i take losartan and amlodipine for HBP which is well controlled and take lipitor 10mg. i am not diabetic. i dont take any other supplements or pain killers other than using tylenol but rarely. i eat a DASH diet low sodium as possible, i watch my phosporus intake and potassium intake. i only drink water, make sure i am well hydrated and very occasional glass of wine or beer.

i was told that ARBs like losartan can increase creatine and reduce gfr.

anything else i can do to slow my ckd progression?

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orangecity41 profile image
orangecity41NKF Ambassador

Sounds like you are being very proactive for CKD. Here is link to an article from National Kidney Foundation about eGFR and relation to age. It also has link to calculation. Maybe consider asking your Doctor about a CKD diet appropriate for you, or at least a referral to a dietitian. Welcome to the forum and thanks for the positive comments.

joethe profile image
joethe in reply to orangecity41

thank you so much. can you comment on my doctor stating the decline was aging? i read that kidney function declines 1% a year after age 40? it seems that in 15 years i have lost 7 points of kidney function from 60 to 53. that is a 10 percent decline?

in reply to joethe

The decline can be faster if you have underlying conditions like diabetes and hypertension. Once you have the CKD diagnosis you should start looking at your averages for all of your eGFR results. That will give you a more accurate number and hopefully lessen your anxiety level.

orangecity41 profile image
orangecity41NKF Ambassador in reply to joethe

I think I forgot to include the link from National Kidney Foundation. kidney.org/atoz/content/gfr... other factors than age which contributes to CKD level. Maybe other health conditions, which may too be age related?

Skeptix profile image
Skeptix

"anything else i can do to slow my ckd progression?"

The best single thing you can do is read Lee Hull's "Stopping Kidney Disease". It's a cheap book for the size of it. You can even get the jist of it by reading Look Inside on Amazon.com. I did about 3 months ago and it's achieved a number of things:

1. I'm waaay more informed about kidney disease and the kinds of things that help and hinder it. I can talk to my doc and indeed know more than my GP about it. I can take direct action. I can reduce the stress that would come were I to sense I had no control...

2. I've been elevated to the position of Commander-in-Chief of my kidneys. I'll use a nephrologist, a GP, a renal dietician. But I'm the one who calls the shots. No one else will do this for you - something the book made me realise.

3. Convinced by Lee's thesis, (convinced rather, by science he's assembled. The same science that conservative, formal bodies are only getting up to speed with*) I went on the very low protein diet + supplement regime the science recommends for someone like me. Early days yet (a few months in) but the numbers are heading in the right direction rather than continuing in the wrong direction.

Cholesterol down from around 6.6 to around 5.4. Without going on the statins my nephrologist intended me to go on. Why would you be surprised: a plant based diet cuts out lots of the saturated fats which contribute to higher cholesterol?

Urea down from a way out of spec ca 13.5 to in ca 6.8? No surprise, given this kidney-harming toxin, the product of protein metabolism, is reduced by reducing your protein intake with a meat free or meat-seriously reduced diet.

(Lee's thesis, that you remove/reduce CKD comorbidity factors (such as elevated urea or high cholesterol or BP or proteinurea or, or, or....) is a sensible one. You don't have to be a doctor to see the sense in it. Except a doctor won't tell you to tackle each and every comorbidity!)

4. My nephroligist, who was operating according to and outdated paradigm (i.e. take no action until you are nearing dialysis stage) woke up enough to get me a renal dietician. That dietician was amazed at how informed I was and had taken me on - in a country where you cannot get a renal dietician pre-dialysis stage. I'm 3b. I can see she's intrigued and motivated: she's heard the science but the standard paradigm and financing doesn't allow her to apply the science on the ground. I walk in and say "Hey, I'm doing this thing myself" and she's hopped on board. No way with Lee Hull's book having laid the groundwork

Whether or not you go on a low protein + keto acid analogue diet is for another day. The thing you can do is get yourself informed. From there you plot your route. Absolutely guaranteed you will get a better outcome that sitting around waiting for doctors to give you a steer. Guaranteed.

NB: the book is long and quite medical tech in places - he is citing the science afterall. "Tough!" is about all that can be said about that. Delving into the papers a bit further reveals that one of the problems encountered/predicted is a reticence to follow diets that remove all the stuff you've eaten for a lifetime. Folk simply don't want to. The talk in the scientific papers is of "motivated" patients. People who will stick to diets because the alternative, dialysis, horrible symptoms, early death are figured to be worse. And of course, they are worse.

The diets aren't that bad - I've quite taken to not eating meat anymore, for instance. Indeed, if you preserve what you have you'll have quite a lot of flexibility and won't necessarily have to forego meat.

Take control, however you do it.

* Lee published in 2019, he was digging this stuff up in 2017/18. The US based National Kidney Foundation gave a nod to the idea of dietary intevention at early stage CKD in their 2020 guidelines. Those guidelines were last produced in 2000. That's right: the guidelines haven't changed in 20 years.

Talking to an Irish renal dietician. She said they'd been waiting on the US-based NKF (who seem to be the leading international body on the subject) to update since 2016. She talked about the committee-like to-ing and fro-ing that queried whether dietary intervention at early stage CKD ought to appear in the guidelines. And that the whole idea was "controversial".

You know how these things go, you can just smell it. It takes (apparently) on average 17 years for latest medical understanding to trickle down to what happen on the street. This is a case in point. Paper after paper indicating a very low protein + supplement diet slows the progression of the disease if embarked upon at early stage (2,3,4). But the nephrologists and the dieticians are still operating according to the 2000 guideline. Indeed, I came across a slide presented by my dietician at a conference given May last in which she talked about evidence based dietary advice. She quoted the 2000 guidelines as the evidence base. 20 year old evidence.

FFS!

Vorhees profile image
Vorhees

It does look like you are being proactive, my only suggestion would be to limit your animal protein. I switched to a plant based diet when my kidney function had dropped to 13%, that combines with medication changed got my function up to 26% and bought me a few extra years before it started to drop again and I needed a transplant.

Had I made those changes earlier I probably could have bought myself a lot longer before I needed a transplant. By plant based I mean fresh vegetables, fruits and grains not a lot of meat substitutes. If you have an issue with your phosphorous or potassium that could prove and additional challenge. I would ask to see a renal dietitian to help you out if you can.

Blackknight1989 profile image
Blackknight1989

So it took me just about 3 minutes to find the NKF guidance updated just this year. Before we state something as fact let’s be sure we do our research. Hulls book, you can find all that info on NKF, NIIH, or AKPF…in my opinion he simply reads reports and gives info that we can all find for free. Also, read and research supplements…in my opinion they are the most dangerous things we can put in our bodies.

New York, NY—July 27, 2021—The National Kidney Foundation (NKF) releases today a position paper developed by 16 experts in nephrology and transplantation from 13 institutions that plots a path for research and innovation to address the most pressing barriers to kidney transplant access, organ availability, and long-term allograft survival in the United States.

March 18, 2021 — Today, the National Kidney Foundation (NKF) unveiled a review by its Kidney Disease Outcomes Quality Initiative (KDOQI) of the global Kidney Disease Improving Global Outcomes (KDIGO) Clinical Practice Guideline on the Evaluation and Management of Candidates for Kidney Transplantation. Published online in the American Journal of Kidney Diseases, it includes a general endorsement as well as additional guidelines.

KDIGO is the global nonprofit organization developing and implementing evidence-based clinical practice guidelines in kidney disease. NKF’s Kidney Disease Quality Initiative (KDOQI), which produces guidelines and commentaries primarily for U.S. practitioners, reviewed KDIGO guidelines on evaluation and management of candidates for kidney transplantation. The team spent the last year going over the guidelines, which were published in April 2020.

And the updated nutritional guidelines from 2020:

Aug. 20, 2020, New York, NY — The National Kidney Foundation (NKF) in collaboration with the Academy of Nutrition and Dietetics released today the 2020 Kidney Disease Outcomes Quality Initiative (KDOQI) Clinical Practice Guideline on Nutrition in Chronic Kidney Disease that will guide health care practitioners who treat people with all stages of kidney disease.

Skeptix profile image
Skeptix in reply to Blackknight1989

What I'd say about Lee Hull is that the info he presents is presented in one, easy to access place. And the book costs relative buttons. He drives you in a direction - all you've got to do is hop on aboard. Whether or not you decide to follow his path to the letter (or at all), you won't be poorer for the ride.

The problem is that virgin-CKDers are uninformed and dazed by their diagnosis and not at all up to speed. A single source, who drags you into the mindset of being in a Life & Death battle (which it is) has a lot going for it.

You say the info is easily available? Well, let's suppose someone who's just been told they have CKD navigates their way to the NKF site.

There they'll click on "Kidney Basics" as the most appropriate of the options.

From there they'll click on "Newly Diagnosed? Start here"

From there they'll get to Treatment & Support which has articles on Dialysis, Transplant and, encouragingly, Palliative Care. Wowzers!

That's KDQOI 2000 stuff! They'll doubtlessly be told to head to a nephrologist who is unlikely to tell them anything about the latest NKF guidelines.

Can I suggest you'll only easily dig up the information contained in Lee Hull's book from the NKF site .. if you're already quite well informed on the subject? I found reference to the guidelines when navigating through the Kidney Professional tab on the NKF website. Few virgin CKD-ers can be expected to do the same

-

I recall the NKF blurb around the guidelines talking about the difficulty in implementing the guidelines relating to low protein and very low protein plus keto acid at early stage CKD. The problem they alluded to was the dearth of renal dieticians required to put legs on that guidance. Thing about it: a whole host of early CKD-ers armed with the 2020 guidelines all arriving looking to be managed through the new dietary regimes.

Where are all these extra renal dieticians to come from? Where are the training centres to train the renal dieticians required, going to come from? The NKF were talking of efforts put into recruitment and training. I don't know about health budgets in your country but in mine....?

Some of us haven't got that kind of time...

Blackknight1989 profile image
Blackknight1989

Here you go skeptix….sound like Hull or vise versa. Full link

ajkd.org/article/S0272-6386...

Protein Intake

Reducing protein intake may impair nutritional status in individuals at risk for PEW. However, it is a well-known fact that adults in Western countries eat above their minimum daily requirement (1.35 g protein/kg per day) as compared with their optimal daily needs, estimated to be 0.8 g protein/kg per day. Further, metabolic balances in healthy adults and patients with CKD have confirmed that, provided there is sufficient energy intake (eg, >30 kcal/kg per day), the protein intake level can be safely decreased to 0.55 to 0.6 g protein/kg per day. A further reduction in protein intake to 0.3 to 0.4 g protein/kg per day can be achieved with the addition of pills of ketoacid analogues (KAs) to ensure a sufficient balance of the essential amino acids (EAAs) normally brought by animal proteins, which are basically absent in these low-protein vegan-like diets. Optimal metabolism of this lower range of protein intake requires adequate amount of caloric intake to promote protein sparing.

Protein restriction alone

In adults with CKD/kidney transplant, 13 RCTs reported the effect of protein restriction only (no supplementation) on outcomes of interest.149,151,156,157,161, 162, 163, 164, 165, 166, 167, 168, 169 The duration of follow-up in the included studies ranged from 3 to 48 months (Table S8b).

Survival/renal death

Research reports a beneficial effect of protein restriction (0.55-0.6 g/kg per day) on ESKD/death in adults with CKD. In adults with CKD, 5 RCTs reported findings on the effect of protein restriction on survival/deaths. Three studies clearly indicated a beneficial effect of moderate restriction in dietary protein on the development of ESKD/death.153,164,168 Rosman et al168 indicated that people consuming 0.6 g/kg per day of protein had better survival (55%) compared with patients consuming free protein intake (40%). Hansen et al164 indicated that death or ESKD was significantly lower in the low-protein-intake group (0.6 g/kg per day; 10%) compared with usual protein intake (27%). Locatelli et al153 also showed that an LPD (0.6 g/kg per day) had fewer events (27/192) compared with usual protein intake (1 g/kg per day; 42/188), borderline significant (P < 0.06), whereas Cianciaruso et al161 indicated that cumulative incidences of death and dialysis therapy start were unaffected by the diet regimen, and a low-protein-intake group (0.55 g/kg per day) does not seem to confer a survival advantage compared with a moderate-protein-intake group (0.80 g/kg per day) but may be explained by a relatively small sample size. Pooled together, results from the secondary analysis of the number of events of death/ESKD combined from the 3 studies indicated a beneficial effect of protein restriction on death/ESKD (OR, 0.621; 95% CI, 0.391-0.985).153,161,164

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