What you need to know to help control or stop the progression of CKD

[motolas]

Lee HULL, a CKD patient himself, just published an authoritative and comprehensive 500+p book “STOPPING KIDNEY DISEASE”, available on Amazon. In my opinion ( a CKD patient) as well as experts in the field, this book provides the best information available to help control or even stop the progression of this incurable disease.

[Hidden]

Which is it? Does it stop the progression or is CKD an incurable disease?

[orangecity41 NKF Ambassador in reply to Hidden]

I checked the book out on Amazon and it explains the book better.

[Bassetmommer NKF Ambassador in reply to Hidden]

I do not understand your question. CKD is incurable. We know that. But you know, as well as many, you can stop the progression and can get control over it. Does not mean you are cured.

I was grateful for his information.

[Hidden in reply to Bassetmommer]

You can't stop the progression. You can only slow it down. It is incurable. Any book or individual that claims to have a way to stop the progression is selling snake oil and just plain misleading others, perhaps to sell a book?

[orangecity41 NKF Ambassador in reply to Hidden]

I followed a link to the organization. They do give information about CKD, but are also selling a supplement.

[motolas in reply to orangecity41]

Please post that link. If it is referring to a product called Albutrix, I can explain what that is.

[orangecity41 NKF Ambassador in reply to motolas]

The web site mentioned in information about your book is Kidneyhood.

[KidneyCoach NKF Ambassador in reply to motolas]

Its all about buying the supplement Albutrix-S3 and selling a book about a journey through kidney disease with FSGS. I applaud his work. Buying and reading a book and a supplement is great but the proof is in the pudding. Where are the studies which prove it works for everyone who uses it? I was diagnosed with PKD in 1980 and managed to live well for 22 years before needing dialysis. Dialysis was needed only after a dentist refused to give antibiotics after pulling an abcessed tooth. I have little doubt if I'd received those meds I could have gone at least another 5+ years. Each person is different though. Blessings & Peace

[Cathy12156dsrjad in reply to KidneyCoach]

What does dental work have to do with our kidneys. Just interested and confused. Having lots of dental work done and want to be safe. Thank u!!

[KidneyCoach NKF Ambassador in reply to Cathy12156dsrjad]

The vessels in the mouth/teeth are often direct lines to the heart. For instance when a person receives anti nausea meds or nitro glycerin for the heart it's given under the tongue. This then goes directly into the blood and distributed to the entire body. Any cavities, abscessed or poor dental health can have adverse impact on one's health. Once a transplant is received the persons immune system is lowered or shut down. If you have a cavity this could easily progress to an abscess and with no immune system to protect you can quickly cause sepsis and death. Therefore good dental health prior and after transplant is crucial to life. Blessings

[orangecity41 NKF Ambassador in reply to Hidden]

It is a question as to whether Chronic Kidney Disease can be completely stopped. Maybe for some it can, but others it can only be slowed down?

[motolas in reply to orangecity41]

I would agree. Every case is different and according to stage and how much you want to be in full compliance. It’s hard to do but up to those who wish to try.

[orangecity41 NKF Ambassador in reply to motolas]

Yes, other medical conditions could also have effect on CKD

[KidneyCoach NKF Ambassador in reply to motolas]

full compliance? I manage my disease well, but being obedient to someone's idea of a dietary, exercise, medication regimen without taking into account the person's individual health concerns, comorbidities can be quite dangerous for some. I've managed my chronic kidney disease for 40 years. I taken it well in hand and done everything needed to slow the progression and live well ON dialysis (17 years). If it works for you that's great but I don't necessarily believe the book or the supplement is a requirement for every person with chronic kidney disease. NKF, AKF, PKD, AAKP and the networks along with HDC and others offer so many resources in education, diet, exercise etc. that are better tailored to individual needs. Blessings

[motolas in reply to Hidden]

I understand your skepticism. I suggest a look at https:kidney.org/news releases/0314

This is a Dec 13, 2005 from the National Kidney Foundation. NOT SNAKE OIL.

Mr Hull’s book should be read by all with CKD. Certainly incorporates all this info but provides, in my opinion everything you may want to know about kidney function as a CKD patient and what is described as methods to halt progression. Much about nutrients, diets, etc.

Those of us with CKD should keep an open mind. Evaluate all info.

Mr Hull has been writing and posting all the chapters in his book over the past 2 years and now published the entire info on Amazon. To keep cost down it is $16+ and worth every penny.

I am not involved with Mr Hull in any way other than one of many followers who appreciate his knowledge. All chapters with multiple references that can be researched.

[orangecity41 NKF Ambassador in reply to motolas]

Thank you for the information and clarification. I will look at the news release on Kidney.org

[orangecity41 NKF Ambassador in reply to motolas]

I tried the link but could not find the article.

[motolas in reply to orangecity41]

I will check.

[motolas in reply to motolas]

To all I hope this is correct address very long I could not copy and past.

Https:/kidney.org/news/newsroom/ne...

[orangecity41 NKF Ambassador in reply to motolas]

Thanks for the link. It worked

[motolas in reply to orangecity41]

I’m interested in your opinion

[KidneyCoach NKF Ambassador in reply to motolas]

This link is to information from NKF, not from Mr. Hull's book. CKD progression can be slowed down for many but not all and since there are MANY causes of CKD it is near impossible to determine efficacy of one treatment for each person. Lupus, diabetes, hypertension, FSGS, Alports, PKD plus about 10 other conditions causing CKD. I saw nothing in the link at NKF which referenced the book. Thank you & Blessings

[motolas in reply to KidneyCoach]

The link from NKF was from December 13, 2005, thus not be from Hull's book.

[KidneyCoach NKF Ambassador in reply to motolas]

oh I see I felt you were referencing his book was from kidney.org NKF. Of course it isn't. Anyone who is capable of self-managing any type of illness for 2 decades or more had so much experience to share. I've had CKD for 40 years. Sharing is awesome. Blessings

[motolas in reply to KidneyCoach]

Thanks for clarification. Is you comment complete?

[sharonlyn]

i just recently joined a facebook group...natural kidney journey...everyone who has ckd needs to join this group...i have been eating the way that is outlined in this group since the beginning of march...i have lost a considerable amount of weight...i have gotten off my blood pressure meds...losartain and hydradraline...and a diueritic lasix...i have been working on getting rid of my diabetic med from 2 times aday to 1/2 a day and sometimes not even that...i was a stage 4 ckd at 26 now i am stage ckd 3b at 41...i have gained 15 points...it is similiar to vegan but you cut out sugar...oil...salt...potatoes...tomatoes...no processed food at all...mainly a plant based diet... water and herbal teas are fine...low potassium...low phoshorus...i feel really good...the people who started this group were able to get her husband off of dialysis...and he has been off of dialysis for 14 months...there are a couple of people onsite who have accomplished that...others are raising their gfr's dramatically...all with diet...it is a great group and i am so thankful that i found them...i mean 15 points is terrific for just a month of dedication...i am working to get to stage 2 or better...

[Mwachibwago in reply to sharonlyn]

Thanks for information Sharonlyn.Am interested with the group you joined which emphasize on diet .Am new here,but very interested with your supportive information

[Blackknight1989 in reply to Mwachibwago]

Stay off that Facebook group it is almost cult like and will not tolerate other viewpoints. If CKD could be reversed by diet and what they profess wouldn’t all of us be on the professed miracle cure? I have been a CKD stage 4 patient since 1996 and I have seen miracle cures come and go. Diet certainly can help many of us, sometimes plant based and sometimes Mediterranean. Before you buy Lee Hull’s book and I am not knocking it as it does have lots of good info but most of it is on the internet for free. I can give you links to such information if you would like to have them. Just let me know…hope it helps!

[Mwachibwago in reply to Blackknight1989]

Thanks... Well said.. Will appreciate if you give me the links..I can't wait any longer.

[Blackknight1989 in reply to Mwachibwago]

here is the link to the KIDGO guidelines on nutrition for CKD

kidney.org/professionals/gu...

[Mwachibwago in reply to Blackknight1989]

Have not joined the Facebook group..And now,since you've opened my eyes,I have reservations in joining it.thanks a lot Blacknight1998

[Mwachibwago in reply to Blackknight1989]

Very awesome.you a re a true CKD warrior..you said you have been at CKD stage 4 since 1996..You are a true survivor..Tell us, What is the secret behind such achievement..

[Hidden in reply to sharonlyn]

Hello sharonlyn. Love your post. It doesn't sound like you are one of the negative Nellies on here that want to bring everyone down. I'm not on Facebook anymore but when I was, I joined a CKD group and a group for my autoimmune disease. I got a lot of helpful information on both groups but you do have to take everything with a grain of salt. My wife's kidney function was declining so I got her in to see my Neph. The first thing he did was take her off of Hydralazine and Hydrochlorothiazide. He said those are two of the worst medicines for kidneys and Hydralazine is known to cause GPA which is the autoimmune that I have and that is what caused my kidney failure. so that was a very good move on your part. My wife's GFR was down to 41 at one point and now she is back up to 59 and this is over a 6 month period. I would ask if your BP is low enough without your BP meds. High BP is not good for kidneys. I am on Losartin and my Neph told me it is actually good for kidneys because it helps dilate the openings in the kidneys bloodstream. He said he takes it himself just for that reason. I see my Neph every 3 months and I do full labs and urine specimen each time. I have copies of all my labs and I created a spreadsheet that shows my red blood cell counts and my kidney function numbers. As I said above in my comment, I contracted an autoimmune disease in June of 2017 and was in the hospital for 3 weeks. I was on Hemo for 3 months and PD for 6 months. The spreadsheet starts in 2016 when I was a healthy person and then my life went to crap.

Lab results over several year period