When were you going to mention I had early CKD? Oh I see, stage II isn’t anything to worry my little head about 😠

[DisillusionedRN]

As my profile name implies, I have spent 20+ years in the healthcare industry. It took longer than I’d like to admit to awakening to how broken, corrupted and frankly dangerous this “Healthcare Industrial Complex” is.

I recently had my annual exam with a PCP that I have always had great respect for. However after having her review my labs briefly and spending the allotted 15 minutes allowed for this visit, I was able to look more closely and realize that my GFR had dropped from 8 to 7 in the past year. When I contacted her to question this, I was told that “we don’t worry about it until it drops to 6”.

Essentially I have now learned first hand that medicare does not concern itself with prevention and while this may not be important to the system, it is very important to me and anything I can do to slow or reverse the damage already done would be something I would have expected my provider to encourage.

In fact when I sought the insight of a nutritional consult I found this would not be covered by insurance until I dropped to the magic number 6.

Having a clinical science background I opted to research on my own and found how much conflicting and out of date data there is around renal disease.

Much of the mainstream organizations have lost their credibility with me.

I have been studying Lee Hulls’ program, “Stopping Kidney Disease” and found it chock full of research backed science and full disclosure where there are gaps and lack of comprehensive data.

While I admit to feeling overwhelmed, I am jaded and more trusting of someone working outside the system to offer preventative solutions.

I am catching this early and thankfully have time to make the dietary and lifestyle changes warranted.

I hope to be able to find a nephrologist in my area that is worth their salt (no pun intended) and will help me manage this very complex issue.

I have seen comments from others for and against the methods Hull promotes. I would also like guidance in finding a good app to help track “all the things” I need to track in my dietary intake appropriate to this disease.

Thanks in advance for your support.

[Smmy]

thanks for pointing me in the direction of Lee Hulls Book. I know nothing about kidney disease, but have suddenly ( to my mind) been told I’m at stage 3b which is a dreadful shock to me. I also seem to be getting no information from the Drs and certainly no treatment. I’m trying to follow this up but being in the UK at the moment means that GP services are severely restricted in most areas. If there’s anything you can tell me, I’d love to hear it. All the best with your diagnosis. You seem to be proactive and to have more idea what you’re up against than I do. Good luck with it all. Do you mind if I ask your age. I’m 69. Should say I’m all in favour of doing as much as I can independently but realise I’m in a dangerous position.

[DisillusionedRN in reply to Smmy]

Hi Smmy,

I am turning 68 soon. I have to admit to being torn between aggressive dietary modification and enjoying my life with friends and family.

Lee Hull food restriction diet is a bit overwhelming and rather depressing. I hope at my level of renal disfunction, I’ll be able to keep it slowed down by eating mindfully.

[peggykd]

I have recently read the book "Toxic Superfoods" which is about limiting foods containing oxalates. Since I have been trying to limit them for the past 3 months I have seen my egfr go from 56 to 73. It seems that oxalates are bad for the kidneys in general - not just kidney stones. So you might want to research that and see if that might be helpful.

[Cruze44]

I assume you mean 60 as the magic number? If your eGFR dropped from 7 to 6 you’d be in end stage renal failure. My doctors are the same way. In fact, all doctors are trained this way. My eGFR has always been in the 60’s. 65, 66, 62 and so on. When I realized this was kinda low and mentioned it to my doctors they shut it down immediately. I was told that a GFR of 60+ was absolutely fine. So unconvinced I paid out of pocket to have my chart read by an online doctor from the Cleveland Clinic. Again, they said the same. They said 60+ was perfectly normal. He said it would be extremely unlikely to advance to CKD. So I gave up and quit worrying about it. No dietary changes or anything and after 20+ years my eGFR has remained steady at about 65. No changes whatsoever.

[DisillusionedRN in reply to Cruze44]

Yes you are correct Cruze…my thumbs sometimes get ahead of my brain. This is reassuring news. Thanks

[Willowdene in reply to Cruze44]

hi Cruze 44 . I am 76 very fit and active in life. My GFR was 59 and of course I was shocked , I am healthy I said. Anyway, my GP [ uk) said this is normal for my age. All our organs do not work as they did in earlier life and kidneys are the same, they don’t function as they deteriorate gradually. I believe this as I was a qualified nurse for 42 yrs so have some understanding.

Anyway, of course I was anxious and studied renal diets etc, what a nightmare, they all conflicted with each other. One said cut out tomatoes and the next said eat them. After awhile I dropped it. Depends on your blood results re potassium phosphorus etc all mine are normal.

A year later I asked my GP again a different one re my 3a diagnosis and reassuring me that is normal for my age and indeed had gone up to 60. They do fluctuate. She said she has an 88 yr old man fit and well with a GfR of 5 and not needing dialysis. Expected at his age. She was very reassuring and encouraged 2 litres a day which I do anyway. In fact now I don’t worry at all except I have cut back on meat consumption eating maybe 3 times a week.

My levels are same . Impossible to find renal dietitians in Uk unless maybe London. Seems so subjective anyway. I Keep eye on levels but I won’t panic if they change up a point of two. Just enjoy life and reduce salt onto food and cut back on heavy meat meals. That’s my philosophy.

My husband has one kidney due to kidney cancer and GFR 32 very fit healthy and GP pleased with progress.

[Darlenia]

Diagnosing CKD in individuals, particularly in seniors, is controversial. If you're a senior, this may have been the reason your PCP was low-key about it. GFR generally declines as one ages...indeed, all our organs wear out as one ages. Because the current kidney equation doesn't take that "wear and tear" into account, some believe CKD is over-diagnosed in that population. (See link below.) Hence it becomes more relevant if one's personal lab report also flags albuminuria or proteinuria and so forth. One's medical history is important too - for example, the two main underlying reasons for kidney disease are diabetes and high blood pressure. Or maybe it's the overuse of pain meds like those in the ibuprofen family, etc. So people in those situations can anticipate possible harm to kidneys. As for nutrition needs, it's important to keep all organs functioning well, not only the kidneys. Since the "renal diet" manipulates key electrolytes needed for proper body function (heart, brain, bones, etc.), it's essential to keep one's labs in mind before taking major action. So, if one's labs are in normal range, there isn't a need to track dietary intake as such. (Generally, dietary restrictions aren't recommended for those in early stages of CKD .) However, if there is a problem, then it's exceptionally important to get approval from a medical professional who can also follow up with regularly scheduled blood tests. Thankfully, many with a CKD diagnosis have gone on to live full and trouble-free lives.

healio.com/news/primary-car...

[Bax509 in reply to Darlenia]

Here here!

[Badger2024 in reply to Darlenia]

Thanks so much Darlenia. I always learn something new every time you post or comment xx