My husband’s GFR is down to 32 it’s come down over a few year was 65 then 46 now 32 he only has one kidney he was 3b does this mean hes 4

[42108]

I’m just worried as lot of telephone calls no face to face recently and it came as a shock thanks

[Skeptix]

That's a fairly rapid decline. What do the docs say about what it is and what he should do.

You might ask the doctors about the latest (2020) guidelines from the US based National Kidney Foundation. The world tends to follow this lead. They advocate low or very low protein diets (necessarily plant based, I.e. vegan or near enough to vegan) as a way to slow the progress of CKD.

Given the guidelines are fresh off the press, nephprologists often won't be up to speed on the implementation and so won't offer this intervention. Also, patients very often refuse to comply with such diets So the docs don't bother giving them as an option. Also, given its diet, a nephrologist isn't the one to drive it, a renal dietician is. And they are hard to find.

Certainly lowering protein intake will cut urea levels in the blood and urea is both damaging to kidneys and aids vascular calcification (a big killer in CKD) so worth checking out.

There's loads on it on this site: search very low protein / Lee Hull / KDOQI 2020 nutrition / keto acid analogues

But first ask the docs what they suggest doing. If they just say "wait and see" or " cut the amount of red meat, salt, potassium your husband eats" .. then consider going your own path.

If you can afford it there are renal dieticians online you can consult with. They are US board certified so properly qualified and authoritative on diets. KidneyRD.com are one crowd who came across well when I chatted to them once

[42108 in reply to Skeptix]

Thanks for the advice, We are in the UK . To be honest it was a phone call after Pete went to see Nephrologist consultant the time before at the hospital after tests and ct scan . I just wished he would have had a face to face meeting so could have let it all sink in . Thanks again

[Skeptix in reply to 42108]

You'll have to start pushing and kicking to get the service you require. A face to face and a clear direction on proposes treatment plan (which you can then seek commentary on here).

I've lost count the number of people coming on here talking of docs ignoring their condition - and I'm only here a few months. Grabbing the reins and driving the cart yourself /your husbands self is advisable until such time (if ever) that you feel the docs are in control.

[orangecity41 NKF Ambassador]

Here is a link to information, from National Kidney Foundation , on eGFR, and CKD level and age. kidney.org/atoz/content/gfr

[42108 in reply to orangecity41]

Thank you for the link.

[orangecity41 NKF Ambassador in reply to 42108]

If you are in UK, here is link to calculate eGFR ukidney.com/nephrology-reso...

[userotc in reply to orangecity41]

Based purely on eGFR (as you attached) my mum would now be stage 2 at an estimate of 76 ml/min following surge from 59 just 4m ago. That after steadily increasing since her nephrectomy 4.5y ago. Would you agree she's stage 2 if she maintains 60-89?

The reason I ask is because other guidance/docs refer to other factors eg urinary blood and/or protein. Mum has no blood now but her urinary protein continues to increase at a high rate. Also her serum urea is stubbornly high at ~12 mmol/l. Before you suggest it (!), she continually asks her nephro and urologist about the protein but they're unconcerned and only appear interested in eGFR and creat ( improving in tandem).

My research indicates the urinary protein may be due to a single kidney (as per OP here).

[Skeptix in reply to userotc]

On that urea. FYI, in the vascular calcification thread I've highlighted the role of uremic toxins (urea and the other stuff not measured bit latent in the urea reading) in VC.

I'm keen to know what the mechanisms of urea-causing-decline are. VC is one of them.

[userotc in reply to Skeptix]

What do you mean by "vascular calcification thread"?

[Skeptix in reply to userotc]

Link below. The thread is expanding to cover the heart-aspect of CKD/kidney disease - since cardio is the thing that tends to fell CKD-ers first. As I trip across topics and areas of interest, I add them to the OP. As I understand it vascular calcification is the biggest cardio issue (and cardio the biggest CKD issue) given the consequences of VC result in innumerable other knock on issues. There are probably lots of contributors to vascular calcification: vit K and urea being but two of them.

healthunlocked.com/nkf-ckd/...

[orangecity41 NKF Ambassador in reply to userotc]

Yes there are other blood work that enters into Doctor's diagnosis. Here is a link to information on eGFR. labtestsonline.org/tests/es...

[userotc in reply to orangecity41]

The eGFR link is interesting, thanks. But I'm unsure if you are saying staging is simply based on that (as per your links) or other factors too eg urinary protein?

[42108 in reply to userotc]

The Nephrologist didn’t say anything about anything else as we are quite new to all this didn’t know what questions to ask

[orangecity41 NKF Ambassador in reply to userotc]

My urologist monitors by urinary protein connected to CKD.

[userotc in reply to orangecity41]

Precisely. Reputable organisations indicate staging is only related to eGFR and so it is possible to move up or down the stages eg to "non-CKD" status. But, in practice, other factors can prevent that. It doesn't help my personal understanding of CKD.

Mum's nephrologist appears to largely ignore her urinary protein and its acceleration. He didn't even ask for it to be tested this time! Her urologist also appears less interested than we are and simply states that everyone's kidney is different in terms of urinary protein. Glad yours is monitoring it though.

[orangecity41 NKF Ambassador in reply to userotc]

I am unable to get referral to Nephrologist until reach level 4. I am on original Medicare.

[Skeptix in reply to orangecity41]

You couldn't have a bit of a meat fest before a blood test, boost your creatinine and "spoof" the results a bit to game the system?

[42108 in reply to Skeptix]

Ha ha just might do that well he will

[orangecity41 NKF Ambassador in reply to Skeptix]

Might try that LOL

[WinJ3]

Stage 3b: GFR 44 - 30 suggest he’s at stage 3b moderate to severe.

[RoxanneKidney]

I hope they checked for protein in the urine. For whatever reason, a lot of doctors don't. This can cause that drop.

[userotc in reply to RoxanneKidney]

I'd agree, particularly as single-kidney people appear to have more urinary protein. You may recall our earlier communication re my single-kidney mum and links I sent (can resend).

But that alone doesn't explain it. Mum's eGFR has steadily increased (now 76ml/min)!

[RoxanneKidney]

Most people eat WAY too much as it is. So I would guess a long time eating only 30 grams a day. LPD.

[Skeptix in reply to RoxanneKidney]

It'd have to be based on body weight surely. Like, little me might work with that amount. But my next door neighbour is 6'6" and a big fella widthways too. He'd shrivel on 30gr.

In fact, he could do with a bit of shrivelled!

[Skeptix in reply to RoxanneKidney]

When I think of it now: a full Irish breakfast 1-2 saturdays a month: 2-3 big sausages, 2 rashers, 2 thick slices of black pudding, slice of white pudding. A fried egg or two and some fried tomato. A few slides of toast dripping with butter and a pot of coffee. And the Irish Times print edition.

And that was just breakfast. Now you'd not be able.for lunch after that (indeed it would take you til lunch to finish it all). Then a meat fest dinner later on.

My poor little kidneys. Forgive me, I knew not what I was doing!

[Skeptix]

0.6gr/kg appears to be the bottom drawer of sustainability. Not too difficult to achieve if all protein intake is dietary. You have to limit high protein plant like soya and obviously, no animal protein or animal derives products.

I'm averaging 0.46gr/kg dietary protein supplementing with ketoacids to achieve 0.8gr/kg overall protein intake currently. I'll be looking to trim the dietary back to 0.4gr if I can whilst still maintain a bit of wiggle room with the ketos.

[42108]

Thanks everyone a lot of it goes over my head. The consultant said if it drops to 20 he will have dialysis and be put on transplant list it was the first time of hearing this so got really worried , especially when it was all over phone .

[userotc]

I suggest you write down a number of questions which you or he can ask by tel/videocon in the absence of (or before) a face-face. Some of these have been suggested in your replies or comments here and you may have others. This is a possible list, in any order:

1. What stage CKD is Pete and on what do you base that eg eGFR alone or anything else?

2.Can you measure and report back all relevant parameters including protein in urine?

3. Can a renal dietician and permanent nephrologist be assigned to Pete asap?

4. What is your prognosis and treatment plan?

Delete any that are N/A eg if he has a parmanent nephro (unclear from your comments)?

As some of our comments illustrate, there are many uncertainties with CKD but I believe that diet & wellbeing are more important than the medics in its early stages (which Pete is imo). Their importance increases at later stages eg dialysis.

Please let us know how you get on eg by reply to this post or private message (click on our name). Note also that my mum/me are also in the UK so we share your frustrations.

[42108 in reply to userotc]

Thank you so much, I wished they would have put it in a letter so I could remember what he said. I thought they would of sent one to our doctor . I think I will call the gp and ask maybe I haven’t asked enough questions

[Skeptix in reply to 42108]

userotc's advice is good advice. The first thing is to find out where your docs are in this and getting docs to pay attention. These questions will establish whether they are giving it due attention.

I suspect you won't get a renal dietician (the standard, out of date treatment paradigm doesn't necessitate one at this stage) and it may be that a nephrologist will take a low action view, again due to out of date paradigm.

But at least establish were you are at present. And start from there. Folk here could inform you as to the significance of blood and urine results. Advice from here can then be run via your doctors. Folk have often found their doctors don't stand in the way of dietary interventions suggested.

There is action you and your husband can take, apart from doctors, so don't worry overly.

[42108 in reply to Skeptix]

Thank you for the help it’s been so useful I do appreciate it 😊

[42108]

Thank you il take it all on board and make an appointment see if I can ask the right questions and hopefully get some answers thank you all for the help 😊