Confused Low urine creatinine & proteinuria

[lakeheadguy]

I am a 75 years old male unofficially diagnosed Stage 3A (blood work and symptoms). Family history great maternal grandmother diagnosed at 75 died at 77 with Acute Interstitial Nephritis, her brother died 71 acute kidney failure. Maternal grandmother died 81 and mother died 78 with chronic kidney disease. For 10 years my eFGR 60, 6 months ago 56, 3 months ago 51. Current Albumin/Creatine ratio 2.7. Albumin urine 6 g/dL. Creatinine urine 2.2 mmo/L. Creatinine Blood 120 mmo/L. New symptom foamy urine (proteinuria?). Sodium, calcium, phosphorus, potassium within normal range. My nurse practioner "don't worry until ACR is 3.0". Monitoring done every 3 months. Other symptoms puffy eyes, weak ankles, balance problems, sore lower back, muscles ache. Recently unable to sleep more than 1 hour at a time. Lost at what to do. I've reduced my protein intake under 50 g/day. Stroke survivor taking 10 mg Ramipril/day. Prostate cancer survivor 1500 mg calcium/day. Dieting can be confusing. Is protein connected to both creatinine and proteinuria? If so what to do?

[Bassetmommer NKF Ambassador]

Welcome to our Forum. We are here to support you. Sounds like you might do well to speak with a renal dietician who can work up a diet/lifestyle program that you can work with. For now, general rule of thumb is to cut down on salt, not only table salt, but in foods, limit any processed foods, drink water, limit your intake of red meat especially, but you are already limiting your protein which is great. The details are different for everyone which is why I suggest seeing a dietician. For example, I am doing plant based diet, which is not easy but has helped. But there are things I have to watch for like potassium and phosphorous. This is why it is important to see a dietician. Also have your nephrologist go over your medications to make sure they are all kidney protective. Very concerning about you not being able to sleep. Is it because you have to go to the bathroom? That is something your doctor should help you with. Sleep is important for general health. I know that lots of people have sleep issues with CKD. I did for a while but now I take 2.5 mg of melatonin at night. I sleep well and I do have to get up at least twice, even though I do stop fluid intake at 7pm. But I drink a lot of water all day. (over 62 ounces) But I also do not have fluid retention at all. So consult your doctor about how much water would work for you daily. To me, I am happy I still have to pee....

[Skeptix]

Them's some seriously tough breaks you've had lakeheadguy. Cancer, stroke and now this. I stand to be corrected but I gather you wouldn't have symptoms from kidney disease a eGFR 51. Like, I'm at eGFR 30 and have no symptoms.

But you sound like a survivor!

Being told "not to worry until" is a refrain that isn't exactly uncommon if you're around here a while to hear others experiences. Folk have had signs of advancing kidney disease and their doctors don't inform them. Others, like me, were told (or were led to believe) "not to worry" ... until an eGFR point was reached upon which I was suddenly asked did I know anyone who could give me a kidney

It would appear that dietary intervention at early stage (i.e. 3) offers the opportunity to slow (or perhaps halt) the progression of the disease. The National Kidney Foundation's 2020 guidelines talk of low protein and very low protein + supplement protein-substitutes as kidney protective.

The previous guideline, issued in 2000 didn't promote such intervention at early stage. The paradigm there (and the one I and many others encountered) more or less took no intervention until end stages.

It follow that it is important that whoever you nephrologist /dietician happens to be is abreast with the latest science and is embracing it. One of the general problems in medicine is that it takes years for newest techniques to trickle down to clinical practice on the ground.

It has been suggested that you seek a renal dietician. That's very good advice. However you may find that you have trouble obtaining the services of one. Folk report them as being a little like hen's teeth. In Ireland where I live, for instance, you can't get one either privately or publically at early stage - they simply don't operate at that level, being focused on end stage / dialysis / transplant. If you do have trouble you can try KidneyRD.com. They are US based, board certified and keen on the idea of low/very low protein diets at early stage. They are not cheap but it may be that you can get the jist for a while and DIY after that rather than having them hold your hand forever. I checked them out and they come across well (for Americans!). It was only when the impossible happened and I was gifted an Irish RD who was prepared to work with me on a very low protein diet than I passed on the Yank option.

Its all online/zoom but renal dieticianing lends itself to that form of interaction.

The things to do are:

- not panic. There are likely avenues open to you to delay progress of CKD, assuming that's the official diagnosis. You have a decent amount of kidney function

- start learning about the disease and how to best manage it. Here's a great resource: lots of folk advocating for themselves and who make themselves more knowledgeable.

- if you can handle a technical read, I'd recommend Lee Hull's "Stopping Kidney Disease". Lee has fought CKD for years and you can get the jist of it and his approach using the Look Inside feature on Amazon.com. The book has flaws and I wouldn't say everyone ought to go as all out as he does but it's a great resource for getting yourself up to speed on the kinds of things that are kidney protective and kidney damaging. Diet is a huge one but there are other things.

[userotc]

As Skeptix indicates being told "don't worry until ACR is 3.0" is not unusual in our experience. Mum's nephro and urologist appear totally unconcerned (more focused on serum data which are improving) that her urine ACR has increased rapidly to 8.97 mg/mmol/l last reading! Whilst there may be specific reasons for that with mum eg 1 kidney, we are trying to reduce by diet & wellbeing including low sugar, moderate-low protein.

[RoxanneKidney]

If you haven't stopped eating meat and dairy, I would do that ASAP, and get on lisinopril becuase it protects the heart and kidney and you have had a prior history with all that. Lisinopril, can drop the GFR, but the protective benefits outweigh this. Change your diet and start walking. Walking will help with the stress and again, even if you don't have high blood pressure, bringing it down further will be beneficial to the small tubes in the kidneys.

[HisLittleOne in reply to RoxanneKidney]

I take Losartan instead of lisinopril. My nephrologist said Losartan is his drug of first choice and better (in his opinion) than lisinopril. Just depends on the doctor I suppose

[RoxanneKidney in reply to HisLittleOne]

they say and ACE or and ARB