High BP and Stage 4

[horsie63]

I noticed most people have diabetes which I do not, per my biopsy my CKD was caused by untreated High BP. Well now I'm on 3 different meds and while my BP is good I still have a lot of protein in my urine and my eGF is 22 with a creatinine of 2.35. I haven't had red meat in several years, watch my protein intake, sodium and potassium as due to the Losartin it runs around 4.8. While not totally plant based I don't have any dairy, eat chicken once a week and quit eating any fast food/restaurant stuff with the pandemic. My sodium intake is around 1500 mg a day. I have no idea what to do next. I see my neph on June 7 and have requested a consult with a renal dietician as I'm having a hard time eating enough.

[userotc]

I understand your concern/confusion and hope the RD can help. But, if not, Id suggest a naturopathic practitioner (ideally specialising in kidneys) is considered.

When you state "still have a lot of protein in my urine", what level is it and upon which measurement is that based on eg 24h or total urinary protein? My mum has significantly improved her BP and CKD via natural means. She has been able to come off a BP tablet and maintain it at ~12/80 and eGFR increased from 36 post-nephrectomy to 76 latest. The only real concern is her increasing proteinuria (particularly 24h) although its not yet reached a level where the neph is interested eg if/when tot u/p >0.2 g/l.

[horsie63 in reply to userotc]

I haven't had a 24 hr for a few years so I'll bring this up on the 7th when I see my nephr. My dipstick on the 24th ACR was 1,779.3 with a ref range if 0-30. It's been consistently in that range for several years now. LOL I have a whole list of things to discuss with the nephr at my next appt. He better be prepared 😀

[userotc in reply to horsie63]

My mum also speaks with her nephro on 7 June!! We've primed her to ask about her proteinuria but don't expect much interest since it hasn't reached the level at which NHS can do something about it (drugs). We don't plan to allow it to do either!

All improvements to date are down to our natural approach yet the nephro seems to want to take credit despite his only input being to say " carry on with what you're doing". And yet he never asks what we are doing!

So good luck on 7 June but I repeat that I suggest you consider alternatives if not happy.

[userotc in reply to userotc]

I hope yesterday's consultation went well. Mum's was brief, as usual, with little contribution from nephro except to say he remains happy with her results and that her urinary protein "won’t ever be a worry". I hope he's right 🤞 but think he normally works with patients at much higher protein levels ie more than her 24h fig of 0.44g.

I notice below that your total urinary protein is 119.6 which I assume is in mg/l. If so, mum's did reach 150 mg/l approx 6m ago before falling back to 80.

[horsie63 in reply to userotc]

Mine went well thank you. I'm grateful I have good docs. I had a list of questions in a notebook I brought and we went through each one. He's very receptive to anything I bring up. I brought along the info on the plant sterols from Piper and he's going to look into it. He did put me on Zetia for my cholesterol as I refuse to take statins ever again. He's referring me to a renal dietician. I talked to him about the low protein and he said I should not go very low but he likes the idea of plant based. Since my kidneys are scarred from the BP there's really nothing that will heal that. The Losartan seems to be helping some with the spilling of protein but I'll always have some. He says doing what I am will keep me stable but no telling for how long. He's happy I have started walking again. What I did find very annoying was all the people in the waiting area with no mask on. I had 2 texts and one phone call to remind me to wear mine. These are kidney patients and most were elderly, prime Covid targets and even the people checking us in had no mask. I'm happy the nurse and my doc did though. I'll probably continue to wear mine forever.

[Jamok in reply to horsie63]

The no mask thing in a medical facility is really bothersome. Do you have the option to do virtual visits?

[horsie63 in reply to Jamok]

I do but I wanted to sit down with him and go over my list. I do know the people had to get a mask before they could go back but at their age they should know better.

[userotc in reply to horsie63]

I didn't realise you had a cholesterol issue too. What level is it?

Mum refused statins after reaching a total 7.2mmol/l and her nephro seems to have got the message as he doesn't mention it now!

[horsie63 in reply to userotc]

The last time I did total chol was 8/27/2021 and it was 262...May 2022 tri was 221 and LDL was 207 which is what caused the doc to recommend Zetia. Statins gave me daily migraines that were so bad I had to start seeing a neurologist who thought I had a tumor. Stopped them after the worst 3 months of my life and the migraines cleared up. My insurance will only pay for once a year total cholesterol so I have to wait til Aud again. Which is kind of good as I've cleaned up my diet, started walking again and maybe the Zetia will help. I'm hoping when I see the RD they will help me stop losing weight.

[itzmich in reply to userotc]

What kind of natural products/suppliments does she take?

[userotc in reply to itzmich]

The only kidney-related supplement is Cordyceps although she takes various other supplements e.g. vitamin D. But her natural approach is wider than just taking supplements so includes diet and wellbeing aspects.

Her full protocol is specific to her as an individual, as it should always be.

[Blackknight1989 in reply to userotc]

And “prescribed” by someone approved by the nephrologist!

[userotc in reply to Blackknight1989]

I'm unsure what you mean - is that a question? Her nephro has not approved anything including supplements nor recommended anyone. Mum/dad asked him for advice years ago but he disputed the value of vitamin D and just suggested an on/off approach with any supplements.

[Futureckd]

What is your protein level in urine? and What is your BUN in blood test? In all cases, I am following VLPD (very low protein diet) which means no meat, no chicken, no fish, no dairy , and no grains. I follow the recipes of the book of Lee Hull ( stopping kidney disease ). Most of the food is dark green vegetables, cauliflower, and corn. Search for the key word VLPD and you can read lots of posts with good info in this blog. So far (bit more than 2 months on the diet) it lowered the BUN in blood test from 58 to 28 (other people noticed the same ~50% reduction) and protein in urine from 323 to 118. The normal range is between 0 and 12. It did not improve the the creatinine level in blood test and consequently the eGFR. Be aware that most nephrologists will not ask you to get on the VLPD. From what I read, it is a controversial diet among nephrologists and renal dietitians.

[horsie63 in reply to Futureckd]

119’.6 urine protein…BUN is 23…Alibun in urine is 2,128. I eat no dairy very little protein and I also have Graves Disease which causes hyperthyroidism so I’ll wait to talk to a RD before relying on a book

[Helloyall]

Sounds like you are doing everthing you can diet wise. Aim for 700 mg. I'd phosphorus a day. And ni more than 4 ounces of protien at a time.ask nephrologist cause ie what type if kidney disease you have.

[horsie63 in reply to Helloyall]

My phosphorus levels are fine but my potassium runs high normal. I had a biopsy and know BP caused the damage.

[Blackknight1989]

Have you seen the research into SGLT-2 inhibitors? All studies look promising at halting CKD in its tracks! Jardiance seems to be the preference for non-T2D patients even down to eGFR as low as ours. It reduces all-cause mortality 30%. I’ll seek it out compared to statins for sure! Here are a couple jardiance specific studies. Link:

pubmed.ncbi.nlm.nih.gov/331...

diatribe.org/sglt-2-inhibitors

[horsie63 in reply to Blackknight1989]

I'll definitely look into this. I had my yearly cholesterol yesterday and although my total and LDL were still "high" they've come down from last years and my tri and HDL are much better and in the green. I'm taking 25 mg of Zetia for the last few months so between diet, exercise and a full year of Zetia I might get the best numbers but I think it'll always be somewhat high as if's a problem throughout my family. Good news was no diabetes and no hepatitis.

[Blackknight1989 in reply to horsie63]

Statins are the devils drug especially to CKD patients. Plenty of studies it’s just the Cardiologists, their association and the 50 drug companies that make cardio drugs control the publication of any study that claims the reduction a total Cholesterol, or LDL to their levels using as large of a dose of statins the patient can tolerate to lower saves or extends lives is mostly just bunk. Sure it can extend life or quality of life due to high lipids but at what cost. I’d encourage if you are going to continue taking any statin never research the long-term issue those poisons cause. Maybe the Jardiance can help versus the statin? My total cholesterol has always been 220/230, but my “good” is high and LDL is only about 10 points high. But I won’t take a statin, I’m too fearful of taking one and having total kidney failure or a-fib or heart failure. Lucky my care team has always agreed with me and to try to lower my total 20/30 points or my bad 5 points isn’t worth the risk of a blood clot in the lung or any of the other wicked statin side effects. Sometime so much is wrong you can’t try to treat everything!

[Blackknight1989]

Yes that is good news…protein is like playing bumper cars with your nephrons just wiping them out in large swaths! Thanks for the indulgence! I apologize if I sounded harsh! Just want everyone to be okay! My best! Let me know your thoughts if you are willing to share. Thanks!

[horsie63 in reply to Blackknight1989]

No worries. After growing up in the military and 4 years in the Army I have some tough skin.

[Blackknight1989]

Lol thanks for letting me off the hook! Thanks for your service! Ever venture to lovely FT Polk, LA? The armpit of the world… good food but not much else. Not my most favorite place I was stationed! Anyway thanks for making me feel less bad! Take care!

[horsie63 in reply to Blackknight1989]

Yep 3 years there...I call it Fort Puke Lousyanna. I love reading your posts. I'd rather a harsh truth than a lie designed to make me feel better but doesn't help in the end.

[Blackknight1989 in reply to horsie63]

Ain’t that the truth. The only thing good about FT Polk is when it’s in the rear view! Thanks for your kind words. Seens many new folks recently and a lot of misinformation. I just want to help. In my 16 years at stage 4 I’ve seen too many folks make bad decisions based on misinformation and cause the need for transplants early or even death. That is something I can help with and y’all help me with. But sometimes peoples minds are made up and they believe falsehoods that may ultimately cause harm to our issue instead of the good claim. Also, I try to back up with med facts or studies and links. I hope that helps someone! Thanks for your kind words!

[horsie63]

As an internal auditor I’m used to doing lots of research and follow the “trust but verify” protocol. As far as I’m concerned statins are evil and I fefuse to take them, my docs are well aware of my feelings concerning them.