Renal diet: Wanted to know opinions of all... - Kidney Disease

Kidney Disease
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Renal diet

vinadhun2
vinadhun2

Wanted to know opinions of all based on shared experience on the following:

My Nephrologist was once saying that with age gfr is going to drop and depending on his/her present age, everyone who is at stage 3 will move to stage 4 and 5.

My question is if we maintain our health issues and follow proper renal diet can we keep away dialysis and transplant

32 Replies
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Hi, if your doctor said that everyone who is in stage 3 will move to stage 4 and 5, your doctor is irresponsible. There are no absolutes. There is no cure for CKD, you can only slow the progression. If you have CKD and your underlying health issues, like diabetes and high blood pressure, are under control, follow a renal meal plan, stay hydrated, exercise, and a number of other things you can slow things down. However, humans don't come with an expiration date and nobody knows when the call comes.

Transplantation is a very personal choice that you may or may not choose if the time comes to make that decision. Dialysis is another option for you, and depending on the modality you should be able to continue with an active lifestyle. In both of those situations, you will have moved on to stages 4 and 5.

There are many people in this community who are in the early stages, including stage 3 who have been there for years without moving on to stage 4. Near the end of this month, I'll be three years past my diagnosis of CKD and except for one outlier of a GFR of 65, I have been in stage 3 for four years. Hopefully, I may never get to stage 4 and stage 5.

Perhaps what you should do is contact your physician and ask for a deeper explanation of what was meant by "will move..." There may have been a miscommunication there but remember, there are no guarantees.

vinadhun2
vinadhun2 in reply to Mr_Kidney

Thanks for your thoughts.

I have no health issues except high creatinine which is around 1.85 and diagnosed around 4 months back when I got blood test done for first time in my life.i am 72

Celtic
Celtic in reply to Mr_Kidney

Particularly relieved to read the first sentence of your response to vinadhun2, Mr_Kidney!

Mr_Kidney
Mr_Kidney in reply to Celtic

Part of the oath that physicians take is "first do no harm" and that doesn't just apply to physical harm, but also to mental harm. Telling someone that Stages 4 and 5 are absolute is not helping the patient. It rankles me when a physician makes the patient feel that their life is over when they get to the later stages of CKD. Of course that's just my opinion and I could be wrong.

vinadhun2
vinadhun2 in reply to Mr_Kidney

Thanks for your comforting words.i am 72cyears old male.

In my case I am absolutely fit.no diabetes no blood pressure and thyroid issues.no urine in protein.all blood counts results within normal limits.All electrolytes perfectly normal.so virtually all is perfect except creatinine which I got tested only in December 19.it is around 1.85.

I have started renal diet.

Hope that egfr will increase.

Mr_Kidney
Mr_Kidney in reply to vinadhun2

Good luck with all you are doing. Stick to your kidney-friendly meal plan, and don't overdo your exercise regimen.

Celtic
Celtic in reply to Mr_Kidney

You’re not wrong. Problem is some doctors are on another planet when it comes to ‘bedside manner’!🙄

Mr_Kidney
Mr_Kidney in reply to Celtic

I agree, and that's why it's important to interview your physicians before you hire them to be on your Care Team. Stay well.

Celtic
Celtic in reply to Mr_Kidney

Aah! Therein lies a problem. Here in the UK we’re lucky to have a free NHS. But we don’t interview them - we have to take who we get!

shortmat
shortmat in reply to Celtic

I am in the UK too Celtic. Makes me a bit envious when the US peeps on here talk about their "Care Team" - we are lucky if we see the same GP as last time when we go to the doctors. I have kept myself safe during the Covid scare, I did not receive a "Vulnerable" letter as I am at stage 3 & I believe they were issued to stage 4 patients. But as I said to a friend at the time " I don't want a letter because if I get ill & they see that I'm on the "Vulnerable " list they probably won't give me a ventilator" - well, what I actually said, getting my words muddled up was "they won't give me a vibrator" , which caused a cerain amount of hilarity!

Celtic
Celtic in reply to shortmat

shortmat, all true, But oh your last sentence did make me chuckle!🤣

vinadhun2
vinadhun2 in reply to Mr_Kidney

It was interesting to note that you have been at stage 3 since many years and have been able to control gfr well.

Do you have any other health issues?

Glad to learn that with proper diet exercise and hydration you can stay at stage 3 or may be even improve

Mr_Kidney
Mr_Kidney in reply to vinadhun2

I have both of the leading causes of CKD, diabetes, and high blood pressure. Diabetes is controlled without meds and the HBP is controlled with meds. I also have AMD.

I was diagnosed three years ago with CKD. When I asked for hard copies of my previous labs I discovered that I actually was in Stage 3 for a year prior to that.

Bet117
Bet117NKF Ambassador in reply to vinadhun2

vinadhum,

Welcome! Great supportive and knowledgeable people here.

Unfortunately there is no cure for kidney issues, but as some of these great folks have stated to you, the goal is to keep as healthy and stop the progression of the disease.

Life has no guarantees but with a communicative medical team, proper medication, a diet designed to your individual needs via labs and nutritious food suggestions as well as water, exercise and medication, hopefully the disease will be contained.

It's about staying positive, a lifestyle change and finding something great about each day!

It's a process/ journey and we are all walking together here.

Reach out..

Bet

vinadhun2
vinadhun2 in reply to Mr_Kidney

Just one question on exercise:

I have been working out in Gym since past 25 years and I do moderate exercise not very strenous.

Now I am doing only aerobics and stopped weight training completely.

Is this OK?

What are your thoughts on exercise

Mr_Kidney
Mr_Kidney in reply to vinadhun2

My thoughts on exercise are that you should have physicians okay any exercise regimen you use. It's not always what you can do, but what you should do. I bike, hike, and in bad weather, I use an elliptical machine, all my workouts have been approved by my PCP, nephrologist, and cardiologist.

Bet117
Bet117NKF Ambassador in reply to Mr_Kidney

Well said, Mr._Kidney!

I agree.

Every person is different and has different medical issues with the kidney disease as well as food content and quantities which is best for them.

Any physician who is not listening to and working with a patient and the other members of their health care team, should be discharged from the case.

Approximately 15 million people are diagnosed yearly with CKD in the U.S. and based on the creatinine eGFR standard, millions more would be diagnosed if they were tested. Less than 1/2 million people in the U.S. are in end stage renal failure, and a fraction of those ever end up needing a transplant. Most people in Stage 3 never progress to stage 4 or 5. In theory, the eGFR standard for CKD was created in the U.S. to "get earlier intervention" in the progression of kidney disease. There is little evidence that diagnosing people earlier has any positive effect on patient outcomes. Before you change your life, get your cystatin-c levels checked. I am Stage 3 CKD based on creatinine (less than 60) but by my cystatin-c, my kidneys are healthier than most 20 year olds (my last cystatin-c eGFR was 115) . The creatinine standard is just an average they came up with from a small test group of kidney disease patients, it does not consider natural variation among people.

vinadhun2
vinadhun2 in reply to MattKansas

My Cystatin C is 1.46.

I am stage 3b CKD as my creatinine is 1.85 and I am 72 year old.

Kindly advise your views.

I have no health conditions. Absolutely nothing except slightly higher creatinine

MattKansas
MattKansas in reply to vinadhun2

Just remember the CKD standard was created in the U.S. which is a for profit health system. In a for profit system, they have a financial interest in keeping people coming back for "check-ups" and "tests". If you have no other symptoms of CKD, such as proteinuria, water retention, weight loss, itchy skin then you really need to consider the validity of your diagnosis. Like I said, get your cystatin-c tested, especially since you exercise. It is a better indicator because it is less influenced by natural variation than creatinine.

vinadhun2
vinadhun2 in reply to MattKansas

My Cystanin C is at 1.46

Just saw you have your Cystatin-c number, plug it into the calculator to get your cystatin-c eGFR at:

kidney.org/professionals/kd...

vinadhun2
vinadhun2 in reply to MattKansas

Saw it. But again there is Creatinine also in the calculator not only Cystatin C

MattKansas
MattKansas in reply to vinadhun2

You can enter the creatinine number or leave it empty, it will not change the cycstatin-c calculation.

vinadhun2
vinadhun2 in reply to MattKansas

I have just inserted value of Cystatin C and value egfr is 45 which is much better as compared to when I insert values of Creatinine and Cystatin C( 35)

MattKansas
MattKansas in reply to vinadhun2

Results

CKD-EPI creatinine equation (2009)

36

mL/min/1.73m2

CKD-EPI creatinine-cystatin equation (2012)

40

mL/min/1.73m2

CKD-EPI cystatin C equation (2012)

45

mL/min/1.73m2

So I entered your numbers in the calculator, the 36 is your creatinine egfr only, 45 is your cystatin-c egfr and the 40 is the average of both. you are still considered technically stage 3 CKD, but obviously a lot farther away from stage 4. So, like I said, question your diagnosis before you make a lot of changes like giving up strength training. Honestly I would consider age related muscle loss a much bigger threat to a 72 year old than stage 3 CKD.

vinadhun2
vinadhun2 in reply to MattKansas

Really thankful to you for these efforts and I am feeling much relaxed

vinadhun2
vinadhun2 in reply to MattKansas

Just out of curiosity are you a patient or from medical field?

How did you know about Cystatin c based knowledge and that this is more accurate way to calculate egfr?

MattKansas
MattKansas in reply to vinadhun2

I am a patient. My first Nephrologist told me upon meeting him that I had stage 3 ckd (which is technically correct) and that I had to make a whole bunch of life changes. He made this statement solely based on creatinine levels that my general ordered. That was the only information he had at that point. He should have said, we need to run more tests and see if there is actually a problem. I have since done research on my own and paid to have my blood tests run (including cystatin-c which the nephrologist never mentioned) by an independent lab. I am in the process of finding a different nephrologist since I feel I can't trust the previous one (Covid has made that difficult since most doctors here are not seeing new patients yet).

Marvin8
Marvin8 in reply to MattKansas

Thanks for mentioning Cystatin-C. You might be interested to read some of my posts on the subject. At this point in time, it's best to use the combo formula taking both creatinine and cystatin-c into account. Cystatin-C is best used to confirm a prognosis of the likelihood of progressing to renal failure or heart disease. If your cystatin-c eGFR is higher than your creatinine eGFR, that's a good prognosis and vice versa. I won't even get into the subject of doctors using creatinine only for a diagnosis. There are many nephrologists who are quite angry about it and would like to change the system. Btw, my creatinine was around 1.1 twenty four years ago at age 38. It's now around 1.3. Personally, I think it's been due to frequent dehydration and taking NSAIDS. Officially diagnosed at Stage 3a three and a half years ago. Am still there. Had two ultrasounds. Both kidneys are on the small end of normal. First scan showed mild echogenicity consistent with mild renal disease. Since my PCP wrote a diagnosis for chronic kidney disease in order to get insurance to pay for the ultrasound, that's what the radiologist found. Last time I had an ultrasound four months ago, I told my PCP to write the script for "potential kidney stones" instead. Guess what....nothing abnormal found. Kidneys are still on the small side of normal (I'm a only 5'6" and 62 years old), the sizes of each are reversed from the sizes three years ago (lab error), and no mention of any echogenicity. There you have it.....our medical industrial complex. :D

vinadhun2
vinadhun2 in reply to Marvin8

Ha ha ha

Thanks for details

A diet will assist your kidney in its regulating function and you should consult a good renal dietician.

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