Can’t figure it all out

[42108]

So my husband went to the hospital today they said his GFR has dropped from 32 about a month ago now it’s 27, his creatinine is 216 umo1/L

Sodium 140mmo1/L

Potassium 3.9mmo1/L

So maybe you could shine more light on it for me. Thank you

[Skeptix]

Firstly creatinine and eGFR are two sides of the same coin. It's creatinine that goes into a formula (involving race and age) to produce eGFR.

Secondly, whilst a shift downwards is never welcome, there can be fluctuations in creatinine (and so eGFR) due to test fluctuation and amount if exercise, meat eating, hydration prior to the blood draw. One swallow doesn't make a summer.

That said kidney disease is often progressive and the question is whether it can be slowed or halted. Recent science and guidelines based on science indicate that diet can preserve kidney function.

Have you and your husband heard of low/very low protein plant based diet? For implementing dietary adjustments appear to slow progress by removing load on the remaining kidney function / lowering kidney damaging toxins in the blood

[42108 in reply to Skeptix]

This is where I get more confused as Nephrologist says he’s in kidney failure not kidney disease. Not not really aware of diet you mentioned can I find it on google 🤔

[Bassetmommer NKF Ambassador in reply to 42108]

ohhhh I hate when they use kidney failure..... it means there is a decline but does not mean it will his kidneys are not working anymore. They are impaired.... big difference. There could be much you can do to slow the progression. I have stayed in Stage 4 for over four years now and I, for the most part, feel fine. I follow a plant based, low protein, no meat, chicken or fish or even eggs, and low potassium. Yes it is challenging, But it beats dialysis. Would you like more information?

[42108 in reply to Bassetmommer]

Pete has only one kidney

[Gotthecall_123 in reply to Bassetmommer]

Agreed kidney failure in not considered until 10% function or less ! it is a definite sign of decline with the creatinine so high a renal diet would be the first step in at least maintaining function 💚

[42108 in reply to Gotthecall_123]

Thank you for your reply 😊

[Dina0210 in reply to Bassetmommer]

Yes, i would like more info on olant based protein plaease. I am at stage 4 ckd and to really slow down progression and not be on dialysis. Help please. Thanks

[Skeptix in reply to Dina0210]

Any diet is going to be specific to you. Some will need to limit potassium, some not. Some have diabetes, some not. At its most basic plant-based means no meat or meat products. Vegan in other words.

The next main intervention is to lower (plant) protein intake - the indications are for a diet that is either low protein (0.6gr protein / kg body weight) or very low protein (0.4 /kg body weight + keto acid analogue supplements) - with very low indicating better results, according to the latest research.

At least two things are achieved with this:

- meat is acidic and plant alkaline, the latter being better for your kidneys. Other acidic foods are limited/avoided too.

- protein (which is found in meat and plant) when metabolised, produces toxic waste which is represented by you urea /BUN reading. If you're urea is out of range you will suffer the damaging effect of elevated uremic toxins in your blood. They are both kidney and body damaging.

There's lots more to it but that's the start. Ideally you'd have a renal dietician guiding you in a diet suitable for you. They'd want to be abreast of the latest guidelines, which isn't a given, since this low protein, plant diet-based recommendation is a relatively recent development (2020)

I'd give a part-recommendation to kidneyRD.com who I considered engaging when it appeared I couldn't get an RD in my home country. They are up to speed and progressive with this dietary intervention. They are board certified dieticians so you'd be under proper supervision. Only trouble is that they ain't cheap.

You could also do worse than buy Lee Hull's book 'Stopping Kidney Disease" which explains the wider principles at play and how diet hits many of them. You can read a bit of it using Look Inside on Amazon. It's dense but choc full of good info.

[Bassetmommer NKF Ambassador in reply to Dina0210]

There is a lot of information out there with positive results for CKD with Plant Based diets. You really should work with a dietician to make sure you are getting what you need. For example, protein levels need to be determined by each patient. What I eat would be too low for someone else. Potiassium and phosphorous levels also need to be determined and weighed in as to what you can and cannot consume. Also do not be fooled with all the new foods out there that say plant based. They are often highly processed with tons of additives. Go natural. Eat from Mother Earth is my rule.

kidney.org/atoz/content/pla...

[Skeptix in reply to 42108]

Reading your bio indicates your husbands declining kidney function over years which, to my mind, indicates a disease. You could say they are heading towards failure (such is CKD) but with a still significant level of function and the fact of slow decline they can hardly be declared failed at this point.

Read around here for the jist of low and very low protein diets. There's a book by a guy called Lee Hull called Stopping Kidney Disease which is instructive re: the thrust of such diets. You can read some of it on Amazon.com using the Look Inside feature.

But in the first instance some guidance from your kidney doc would help. What do they make of the KDOQI 2020 guidelines on such diets

(Kidney Disease Outcomes Quality Initiative guidelines 2020 are the result of analysis and distillation of the latest science by an international panel of kidney docs/researchers. Dietary modification is strongly recommended as a step in non diabetic CKD amd may have relevance to your husbands case. Certainly lowering the load and managing kidney limitations with diet makes sense: your kidneys have to deal with what you put into your body. If they are ailing then you need to manage things more in their behalf

[42108 in reply to Skeptix]

Thank you for the information 😊

[42108]

Yes please more information would be great, as he started to cry as if there was no hope anymore

[Skeptix in reply to 42108]

Info is Power so start reading and self informing.

I've the same level of function as your husband and I'm not crying. I might be if I thought there was no hope but there is: if you are heaping trouble on your ailing kidneys and then you stop heaping that trouble on them with dietary change you can expect decline rates to slow down or even stop

There are no guarantees but that diets help is certain for sufficient number of people. Sufficient to cause the advice to attract a grade 1A (top grade) recommendation by the world's foremost authorities on the matter.

[Skeptix]

For info:

Up until very recently it wasn't considered that much could be done for declining kidney function. Diet as a preserving intervention came to the fore in 2020.

That it came to the fore doesn't mean you'll hear about it from your GP or even a nephrologist. It will take years before things trickle down to front line clinical practice. The reason you'll hear about it here is that there are lots of folk here who take a proactive stance and for whom the doctors view 'nothing to be done' isn't acceptable. They seek, they find.

But its complicated and not straightforward to learn, to dig, to fight and press the docs to consider other ways..

If you think you might struggle get up to speed on medical jargon and figuring out diet plans then you could consider going straight to a renal dietician. Since diet is key, the renal dietitian becomes preeminent in guiding you. They can instruct on diet and monitor so that nutritional aspects don't fall between cracks.

Trouble is, a lot if renal dieticians aren't themselves up to speed on diet at your husbands stage (moderate). They have been practicing with the paradigm that sees no or little dietary intervention until late stage.

So you'd need a dietician who is practicing this latest way. Low or very low protein. Meat and animal products more or less out. I managed to get a renal dietician in Ireland but was seriously considering kidneyRD.com, US board certified renal dieticians who can steer you via Zoom. They have stepped out of the dialysis arena and into this new, kidney preserving space. They ain't cheap so if you want to let them do all the lifting it will cost. The alternative is to take guidance and get occasional checks done on your walk so that you stay on a good path. That would cost less. Their Yanks but came across well in my checking the out. You might find others in that field but whatever you do press them on low protein plant diets - if they are suggesting cutting your meat portion sizes down to deck of card size and red meat once a week then hang up the phone. That's not 2020 guideline material.

Of course, a lot hinges on you and your husbands preparedness to follow this path. It's not hard but it's not easy either. Some simply can't consider stopping eating meat, dairy, eggs and the like. But them appears to the options. Preserve (hopefully) kidney with diet. Or keep piling the pressure onto them and follow them down the rabbit hole. One thing that might help is Lee Hull's suggestion to try the diet for 90 days. You should see blood figures improve if diet is going to help. And that helps spur you on to keep it up. After a while you kind of forget about meat, the recipes get grooved and it eases somewhat.

[Sophiebun11]

Hi, My eGFR dropped from 35 down to 29 a few months ago within a months time. It dropped from 58 within 3 years. Now it's gone back up.

I see you said your husband only has one kidney. Did he lose that due to CKD or cancer? I can see why it's of much greater concern, but he is still in Stage 4. They don't call it Kidney Failure until low Stage 5.

It can be scary but no need to give up. As Skeptic said, educate yourselves. If your husband hasn't been on a CKD diet before now, he should get on one today!!!!

This Kidney School link is full of info which will help you both learn and see that others have been in the same boat and are doing fine kidneyschool.org/mods/

Education and attitude make all the difference.

Good luck to you both.

[42108 in reply to Sophiebun11]

Thank you. Pete has his other kidney removed when he was 7 as it was deformed and didn’t form

[RoxanneKidney]

I was just tested twice this month: Nov. 1 my creatinine was 1.2, and Nov. 15 0.9...It has not been that low for years and years. This however, does not mean things have changed. It just means that my kidneys are not working as hard becuase I have been careful with my diet. Maybe too careful because something is up with the iron. So my advice is the same as those below me: if your husband is not on a plant based diet, he should be. And watch the salt. Plants really are amazing in regards to their healing powers.

[Sophiebun11 in reply to RoxanneKidney]

I truly believe that about plant based diets. I was shocked about learning I had Stage 4 kidney disease after being a life long vegetarian, but my CKD is due to autoimmune disease not diet, hypertension or T2D. I still strongly support a plant based diet. I could be Stage 5 if I hadn't been on such a healthy diet. Plant based diets are good for most health problems, not only CKD.

[drmind]

Listen to the suggestions given about a plant food diet. It works. I'm struggling with the diet now, but I am eventually finding good recipes that I enjoy. My GFR dropped to 26 from the high 30's but seems to be stabilizing there for past six months. I know Its difficult to de-stress when you get lab results that show decline. We've all been there. But, it should give you more motivation to educate yourself and get busy controlling what you can, namely diet, hyd

[42108 in reply to drmind]

He got taken into hospital but he had a lot of fluids before and on way he has much of an appetite at the moment and would find it very difficult to eat a plant based diet. I’m going to try him but we will see how he goes. Thanks for replying

[drmind in reply to 42108]

Start off slowly with diet otherwise it can be overwhelming. I started with cucumbers and tomatoes only and added greens, carrots, red onions, peppers slowly. I actually do a vegetarian diet that includes small portions of meat, fish, cheese, and/or eggs twice a week. I also made some soups that turned out well, such as, split pea soup with a tiny touch of ham and toasted croutons the same with vegetable soup. And, one of my favorite desserts is cut up apples sprinkled with a little sugar and cinnamon, microwaved for a few minutes and served with cool whip. Go slowly. The main thing is to do is diet to your lab results (no one person is the same) and cut down on animal protein. It is also important to run this by your medical team, but as others have indicated many front line kidney doctors are not up to date with the Kidney Association latest recommendations on diet. Go slowly. I was a "meat and potato " person most of my life, but if I can make changes, anyone can. Once again the best to you both.

[drmind]

(Oope hit REPLY too fast) diet, hydration, no salt, and some exercise. I want to wish you and your husband the best. No more crying because you both have work to do. Keep us posted as to how things are going. We care

[lowraind]

You mentioned that your husband went to the hospital. Was this for blood test only, or was he there for some other reason? I was in the E.R. recently for a bowel obstruction. While there, I became dehydrated and my first blood test came back with an efgr of 41. I had become pretty vocal about having ckd, and finally was put on a saline solution, then, the next day, a liquid diet. By the end of the second day, my efgr was back up to 53.

[KidneyCoach NKF Ambassador]

Check out kidneyschool.org

[TR6872]

Hello 42108,

My experience with CKD may be helpful to you and your husband, particularly in regards to your mental attitude and optimism.

In April 2019 my GFR was also 27 and my creatinine was 2.4 (U.S. measurement, which I believe is about 212 in the UK measurement.)

I made changes in lifestyle and diet at that time, and this month my latest blood labs showed a GFR of 46 and Creatinine of 1.5 US, 132 UK. My necessary lifestyle changes were fairly small, as I was not overweight and did not smoke or drink. I do more moderate exercise (brisk walking) than before. I'm 71 years old, so no extremes for me.

My dietary changes were based on my lab numbers, and your husband and I are both fortunate in that our sodium and potassium levels are within normal range (how are his phosphorus and BUN numbers, those are important as well?) I do watch my sodium carefully, as I have a history of high blood pressure. I cut out most meat, but not all: I still eat small portions of poultry or fish, and an occasional egg. I cut out all highly processed food and fast food and seldom eat in restaurants these days. I believe that was the most important change - going full vegetarian or vegan was not necessary for me. My daily protein goal is .6 to .8 grams per kilogram of body weight - low but not very low, no need for expensive supplements.

So stopping the decline or even improving the numbers can be done. Do your research and educate yourself - my nephrologist was not that helpful (just the usual "limit salt and cut down on red meat" advice, which seems to be common but not sufficient at all.)

Best of luck to the both of you!

[42108 in reply to TR6872]

Thank you for the reply was very helpful I will make some soups too and hopefully things will get a bit better. Have a good day 😊

[newbie1956 in reply to 42108]

Enjoy those veggies. Mom was right. 💪

[42108]

Thanks for advice he is my husband not my dad lol

[Darlenia in reply to 42108]

Lol! My apologies!