Early CKD Support
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Why diet???

Hello all. I was recently diagnosed with kidney disease with a gfr of 60. My doctors says no special diet is needed. But I decided to look into a diet play anyways. It seems crazy! No way I could follow such a strict diet. Seems impossible. I have no interest in diet so please don’t go on about diet. I don’t ever plan on following one. I figure this disease is terminal regardless of diet. What’s a few more years. I’d like to hear from people who do NOT adhere to a kidney diet. Do you still fell good? Does any food or drink make you feel worse then others?

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I like your candor. :D

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I don’t think you need to be too concerned about diet with a GFR of 60 anyway. Most diets are to restrict your intake of potassium/phosphate when you’re dialysing/close to dialysis. Which you’re no where near so I wouldn’t worry,

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I guess I am the opposite. I want to live longer.

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I agree!

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to me cutting sodium, watching other things, exercising is the way to go no matter what the health issue. I basically have one good kidney, a blip of another. Giving up sure isn't for me. So glad to know we are on the same page.

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My philosophy is: If and when my kidneys get bad enough, they are going to put me on a special diet. If I can do something not to prevent getting worse, why not. So I limit my sodium, potassium, phosphorous and protein. I improved my GFR from 34.4 to 54.0 and creatinine from 1.4 to 1.0, so I guess I am prolonging my life.

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many many congrats to you!!!

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I agree.

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in how many months?

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Six months, but, I am still working on it.

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I agree also. Anything we can do to improve our health.

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Me too

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You do not give your age or cause of your CKD. You say it is fatal. However just being classified having "CKD" is not necessarily fatal. One has to understand why you are in this condition. For example. If a person has a kidney removed, for whatever reason, it is usual to have from that point on an increase in Creatinine level as one remaining kidney tries to do the work of two. For some people the remaining kidney gradually increases it's performance (by growth of filters) and levels return to normal. But this is not always the case and is highly age dependent. But even without the increase, it is possible to live a normal life, and life span, with one kidney. Yet, you will have elevated Creatinine. This will therefore classify you as CKD. But the remaining kidney is not failing, it is just doing the best it can. This is just one example. It is too easy to classify a person with CKD, based on eGFR. Perhaps a person has excessively high blood pressure. They neglected it. It caused some kidney damage. They are classified CKD. But with treatment of the blood pressure, and if the damage was not excessive, the kidney will not fail further, other than the amount it normally does with aging. There are many variables to understand before it can be called fatal. Of course in most cases it is caused by truly failing kidneys for which nothing can be done. another consideration is research. You choose to enjoy the time left and not prolong it. Certainly a persons prerogative. But every day advances are made in treatments. There are even attempts at artificial kidneys. Sort of a "built in" dialysis machine. What if in the next 5 to 10 years something is a breakthrough. All must be thought of.

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You say most of the time with CKD nothing can be done. This is false, most of the time with the right treatment ckd progression can be stopped or at least slowed.

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Just a poor choice of wording on my part. Sure it can be slowed and one would be foolish not to do everything possible to do this, including diet. My point was all CKD is not fatal. All CKD is not actually based on failing kidney but can be result of something like removal of other kidney. Or most certainly age is a huge factor as the eGFR of a totally healthy person declines with age. Stopping I have not heard of before. I have read many instances though of people for example who have been at stage 3b for over 10 years and still holding. CLEARLY each of us is different and one should always try all possible things. Thanks.

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I too had not heard of stopping progression and was told by Doctor it could only be slowed down (maybe in my situation). Agree though that each of us is different, and at different ages and stages.

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I have been between 45 and 60 gfr for past five years it fluctuates within that range my nephrologist say many patients stay stable or even increase gfr if diabetes and blood pressure as well as protein in the urine are controlled.

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Wow, that is a big range between your low gfr and your hi. I have seen many who get a 3 to 5 point swing, but yours is really big. Keep up the good work. Get it to that 60 point all the time, or just one point higher and you won't even be classified with CKD. After my kidney removal I was in the 35 range, then 3 months later was and has been about 38 or 39. My last test I was 41. Now they are stopping my lisinopril. That while great for blood pressure, reduces your gfr. So we are hoping for another 2 or 3 points. An interesting thing is how it is calculated. If you go to the kidney.org website you can calculate it using the typical formula used by doctors labs. But this just gives you an eGFR. For more accurate, on this website you can entire your Creatinine level, your age, your height and your weight. The result is more specific to you and not just a "typical" or "normal" range the doctors use. On that formula I get a result of 45, about 10% greater than using the eGFR.

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In my case today the gfr was 60, I have type 2diabetes but have kept the a1c right around 6.0 and blood pressure hangs around 110-120 systolic and 60-70 diastolic, no protein in urine. I have lost about 20 pounds in last five years and exercise almost everyday for 45 minutes. I really think this disease can be put in remission if people do what it takes.

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One more thing on the lisinipril I was on 20 mg a day and because blood pressure was a bit low he reduced the dose to 10 mg a day and gfr Improved from 45 to 53 and as I said the last gfr was 60 so that can certainly have an effect. Good luck to you and know there is a lot you can do to stop or slow the disease.

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I really appreciates your info, may I ask where you found info in regard to one good kidney, other not so much, creatinine levels, gfr. have one good kidney, other possibly destroyed by stone, born that way, etc. Thank you in advance.

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Sally. The amount of information regarding a person with just one kidney and its effects on gfr, creatinine, CKD, etc. is so limited it is sorrowful. but there is some. Go to google and do different searches. Such as "solitary kidney". One I found most useful is "normal creatinine levels with one kidney". There you will see that a creatinine level with one kidney of 1.8 is normal. with that level you will be classified as having CKD. But what the GFR/CKD calculation does not take into account is why a person has a high creatinine level. It is why everyone of my four doctors (all with different specialties) are to say the least, not fans of the eGFR system. a person may be stage 3b because their kidneys are actually slowly failing, or have some progressive disease. BUT with the existing methodology a person with just one kidney, who is it normal therefore to get a high creatinine level, might get this classification of stage 3b, even though the existing kidney is doing it's job. Now that in mind my doctors tell me it is hard to tell the difference. Is it real CKD in the remaining kidney, or is it producing these results because you only have one. The answer is time. If your egfr became stage 3b immediately after the other kidney was removed, and it remains constant, it is likely normal results for a person in this situation. Now, in younger people the remaining kidney is much more likely to accept the additional workload, actually internally grow to handle the additional work, and produce far better results and just slight elevations in creatinine. That is why you hear so much about how you can live a normal life with just one kidney. It's true. And many with normal blood results. But you can also live a normal life with just one kidney with "not normal" results which as you will find are in your google searches are typical (creatinine 1.8) for a solitary kidney.

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I highly appreciate your response, info. My gfr numbers were dropping, creatinine changing some. It was determined one kidney wasn't draining. An almost 7 mm stone dropped down. I really hadn't had any pain, have a very high pain tolerance. It was scheduled to remove stone, I passed it never knowing, but when doc went in to get stone, it was gone, but said my left kidney had taken a hard hit at some point, maybe stone..not sure. He put in stint that helped a lot. But those can only stay so long. I really appreciate your help for I have oftener wondered if the gfr and creatinine would be affected when only basically having one good kidney and about 25% of the other.

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I have taken a screen shot of all this info. Thank you so so much!!

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ps. A dear friend of our family just found out her son (age 21) has his entire life had only one functioning kidney. the other kidney was present, but not functioning. Was only about 25% of the normal size. His entire life his blood results were normal. He had no problems. It was found by a routine xray recently. It just shows you that "normal" can mean a wide range of things. As my primary care doctor always tells me, the word "normal" should be replaced by the word "usual". It is usual to have Creatinine levels at a certain range. It is usual to have egfr levels at a certain range. But given all the different circumstances of each person, your "normal" may just be not the "usual" but yet perfectly okay.

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I'll let you know next month ...

I was getting pretty strict when i first found out but now have been sliding slowly back to before except no milk products except yogurt and no chocolate and just a little junk food very occassionally.

I think mine is age related ??? ... im 78 now ... but if i find out its something else i'll be more careful.

Im not interested in a l-o-n-g lfe as much as a healthy one but since it seems everything thats good for everybody else is harmful for us its depressing.

I have a kidney doc appt in oct and feel like my "carelessness" will put me in dialysis right away.

Message me after the 10th to remind me to let you know if youre interested.

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I too am your age. I decided to stay on the strict diet. If I do not stay on diet I feel will damage my kidneys further and push me to dialysis, and with this thought maybe quality of life is most important. I do feel a loss though in food choices etc.. Everyone's situation and reason for CKD can be different. Mine is more than age related. Hope all goes well with your plan.

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Oh my gosh!!! You think CKD is terminal? I was diagnosed in 1991 with focal segmental glomerular sclerosis. Back then I was told to be on a "salt-free" diet and to stay away from pre-packaged meals for the same reason. I am not even sure there were renal dieticians back then. I was not referred to one anyway. I did everything the doctors told me as far as my diet and took my prescribed medication.

I was on the UNOS transplant list in 1998 and received the Gift of Life a kidney transplant in 1999. Next month I will be 19 years post transplant and living well.

Please understand that just because you have been diagnosed in early CKD does not mean you have been given a "death sentence."

People that have posted things on HealthUnlocked have been living with CKD for 10, 20, and 30 years and still not at the point that they need dialysis. There are also people like me that have been living well, 19, 25 and even 30 years after transplant.

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Hi, I agree with most people on here that CKD does not necessarily mean a death sentence, obviously depending on the cause. I was diagnosed a year ago but, checking my blood test records, I’ve actually been hovering at CKD level 3 for at least 10 years and no-one ever told me. I’m 52 and otherwise healthy, and there’s no obvious cause. In the last year I have managed to improve my kidney function through diet, and it’s not a strict diet. I mainly eat whole natural foods. I try and avoid processed foods and salt, although I’m not 100% strict on that. I don’t eat dairy and gluten (I’m intolerant to them anyway). I drink water and don’t drink alcohol or any fizzy drinks. I’ve never smoked and I exercise daily. From what I’ve read and discussed with doctors, the vast majority of CKD sufferers never get to the level where dialysis or transplant is required. In summary, I’m fit, healthy and happy and CKD certainly doesn’t hold me back and I definitely do not see it as a death sentence!

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Very good response Julesboz. I agree. We do what we have to, and what we can for our health.

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Thanks for the replies! I also read that the vast majority of kidney patients don’t reach dialysis stage. But I was informed that that is usually because they die of other complications first. Like heart attack. I suspect I have 10 years maybe. I’m not really worried about that though. I just wanna eat good and enjoy it.

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Everyone dies of something. But CKD doesn’t always progress, actually if you work at it you will have a good chance of halting progression.

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Hi TammyReems, I’m wondering what leads you to the conclusion that you’ve got 10 years? You haven’t given any information, like your age or cause of CKD. CKD is not always progressive and at stage 3 I’d say it was unlikely to cause other problems. As I said earlier in my original reply, I have unexplained CKD but I’ve had it for over 10 years and instead of getting worse, mine is better than it was 10 years ago, and that’s because of my diet. I also have no other health issues and I’ve stayed at level 3. If you post your cause and age and any other pertinent info, the lovely people on this site may be able to reassure you a bit more.

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Lol, I kinda feel the same way you do Tammy. I'm a beer drinking, buffalo wing eating, steak eating kinda guy! And that ain't never gonna change! Regardless of any disease. But that said, I adjusted my diet a little bit and have found it not to be that difficult. For example, instead of eating rib-eyes and T-Bones I now choose leaner beef such as sirloin. And instead of deep frying wings I bake them now. And make my own sauce which contains MUCH less sodium then traditional sauces. Instead of a Pepsi a day, I now opt for Sierra Mist instead. Instead of chocolate for desert I'll have like fresh Pineapple. Instead of a Big Mac from Mc'ds that has something like 30 grams of protein I opt for a Filet o Fish with only 15 grams. In the process I've lost a lot of weight and feel much better!! So like you, I'm not willing to give up food for any reason. I'd choose 5 years of enjoying life as opposed to 20 years of eating crap and drinking water! Not my style.

Plus, with an eGFR of 60 you may not even have kidney disease??? That's in the normal range unless you have other evidence of kidney damage. And even if it is CKD it's mild. Many many many doctors don't consider that eGFR "true" disease even if you do have protein in your urine. Protein in urine is often non specific and transient at best.

Also, what is your age? If your 22 with a eGFR of 60 that "might" raise an eyebrow. If your 60 with that eGFR your perfectly fine. Remember, kidney disease is WAY over diagnosed. Probably by far the most over diagnosed disease in history other then depression. Kidney are not even supposed to function at 100% forever. Just like the crankshaft in your car. As is ages it has trouble filtering the oil. It's not damaged, it's completely normal wear and tear. And will continue to perform as long as it's maintained.

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If your blood potassium and phosphate levels are too high, then of course reduced your intake of foods that are high in them. I don't believe there is a diet to prevent or slow down kidney disease (except low sodium), but you may need to adjust your diet due to kidney damage.

The one thing I would be careful with is salt intake as this will raise your blood pressure and high BP WILL damage kidneys.

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