.Anyone else been through this?
I have 4th stage. No nephro has never been ... - Kidney Disease
I have 4th stage. No nephro has never been interested in protein or diet
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minntt
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24 Replies
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BassetmommerNKF Ambassador
Sad to say that is not unusual. Ask for a dietician referral. And if not, you have to start looking for yourself. There is a ton on information out there on the results of renal diet slowing the progression. I stayed off dialysis for almost 6 years because of good diet and healthy lifestyle. Ask us questions as there is a lot of good info we can provide.
Thank you. I've read a lot and watched videos--plant based is best in my opinion. I'm scared and sometimes go into a depression.
Don't be scared, be in control....because you can be. Plant based is great and as long as you do not eat processed foods, even if they say they are plant based, you'll do fine.
Trust me, it is very natural to face a chronic illness with depression. You are grieving and there is nothing wrong with that. I am going through something similar as I did have to start dialysis. But I am learning, as I did when I was first diagnosed, that although I have sad thoughts at times, there is a lot to be thankful for. And you will find strength in your ability to carry on and be a Warrior.
What a lovely reply, and so true , thank you for making a new year that much better and positive xx
May I ask if you had a biopsy and got a diagnosis? Because it might be because of that. For example I am at stage 3b and I have secondary fsgs-without any obvious reason. Other than the creatinine being high in my blood, my blood levels are between margins; including salt, sugar, phosphate, protein etc. Thats why I don’t get a dietary restriction. When I am in the last stage, then I will definitely be restricted, or if my kidney disease would be occurring due to obesity or high blood pressure, I definitely had to prevent eating salt. But for me thats not the case. Actually on the contrary, I was given a very harmful diet at the beginning, it was purely bases on carbohydrates. But I found out that, that was neither necessary nor healthy.
so I suggest you to focus on the diagnosis. If you have still have other blood levels in margins, and you dont have kidney disease because of obesity, diabetes or high blood pressure; it might be okay for you to eat normal.
When it comes to the protein, I have a similar approach from my doctors as well, they are specifically looking at the creatinine.
I have been diagnosed since 2017. From the beginning, after much research, I decided that I would use a ckd healthy diet. Why wait until last stage? If you do what you can to protect your kidneys, you may never reach the last stage.
But you should that in every case. You just dont have to limit your salt intake just like you are in ESRD, or limit the vegetables you are consuming. Of course eating healthy is positive on your body on every level. But when you are in esrd everything you eat changes. I am just suggesting that it doesn’t have to be in that level when you are in stage 3 or 4, of course depending your diagnosis.
also unfortunately it’s not only up to your nutrition. Based on your root cause you might get esrd even though. Nutrition is supportive treatment in kidney disease.
Very well said. Kidneys generally do not fail out of the blue- there's something driving it. In my hubby's case, it's diabetes - condition requiring strong control over sugar and carbs, the diabetes diet, more so than a renal diet. Other reasons for kidney decline can be polycystic disease, autoimmune condition, lifestyle, and many more. Some conditions benefit from a renal diet, others may not. And the renal diet should only be given to those whose labs indicate that it's appropriate. The renal diet can indeed be harmful for some. It manipulates electrolytes needed (protein, magnesium, sodium, etc.) required for proper function of other systems - cardiac, brain, muscular, and more. It's very important for people to keep an eye on their numbers on their labs and seek proper guidance for medical professionals if anything is flagged.
that’s exactly what I’m trying to say. When I was first diagnosed with stage 3B, I visited two different dietitians. Both of them gave me so strict dietary list, which, for my case was quite unnecessary. it wasn’t helping my disease at all. But it was turning my life into a nightmare, I was eating very unhealthy. Because all I was allowed to eat was bread without salt, overly cooked vegetables-to remove phosphorus- and all carbohydrates, because I dont have diabetes. There is common mistakes when it comes to nutrition in CKD, because its not a treatment; its supportive action for your disease.
A person with obesity, high blood pressure, obesity should of course be on a strong diet; because these are the root cause of the kidney disease. So by changing your eating habits, you can definitely prevent your disease worsening. But if you have primary fsgs, iga nephropathy… expecting a miracle by changing eating habits just might lead to heart break. Because thats what happens to me. I went over everything that put in my mouth excruciatingly. But I was definitely under that pain unnecessarily. Thats why I am trying to inform everyone as much as possible. Look at your diagnosis.
My mum's nephro has also been useless re support to improve her kidney function. He was happy when egfr was 36 after a nephrectomy so didnt feel the need to improve (but he is a surgeon!). Mum adopted a Nutritional Therapy protocol to increase it to a stable 60.
Yes. Many nephro has this fatalistic approach. Nothing could be more wrong. We all know CKD most of cases is not reversable. And that's fact. On the other hand diet and lifestyle can give you years far from dialysis and transplant need. You can really do a lot for yourself prolonging as much as possible your residual function. All the best.
Before my kidneys failed in 1998, nephrologists told me there was nothing I can do. In 2019, my husband was told he was in stage 3 and that modifying his diet, getting better control of his diabetes would postpone dialysis. We went low potassium, started having more vegetarian meals, etc. The gfr hovered in the 30s for a while. When his gfr got down to 20, he got on the list and received a transplant in 2023, which is just a miracle. I think doctors vary in their knowledge of nutrition. My husband’s nephrologist referred him to a dietician initially. She was helpful with the diabetes which was not enough because she did not address the kidney disease specifically. We went to a different dietician who was more knowledgeable and did our own research.
you have to be your own advocate. Research see what work for you . I know I limited red meat but I also did a lot of excerise which help me stay off of dialysis wailed but I had to start in February if this year . But I was told five year before I started I would be on it. I never had any problems with my protein or my potassium . The only problem I had was my phoursous . I am on pd dialysis I need more protein now cause on dialysis I can eat almost anything cause my numbers are really good there more options what you can eat on pd then hemo dialysis.
That's not necessarily true. I actually had more restriction on PD because it wasn't clearing my phosphorus and I had to take binders. Right now on hemo I eat and drink what I want as the potassium, phosphorus and other electrolytes are all within range. I have no restrictions and so far just need to eat more protein. Just like PD or at any level CKD you need to eat to your individual labs.
Everyone differnt I know the majority is what I learn glad hemo working better for you guess diet would be an individual thing
It's slightly different than the hemodialysis diet due to the differences in the dialysis treatments. Unlike hemodialysis, PD is typically performed daily. As a result, the body does not buildup as much potassium, sodium and fluid, so for most patients the diet is more liberal
Will Medicare pay for you seeing a registered dietitian? The plan I have will pay for it but unfortunately there are no RDs in my area and so it would have to be a phone visit. If you can do it, even via phone then you should . Since you are diabetic, you are probably no stranger to having dietary restrictions. I don't have a whole lot of experience with Nephros - just this one who I am seeing - but I have a feeling they concentrate mostly on kidney mechanics and not so much lifestyle, which unfortunately is a big component of staying healthy. Sometimes I don't know whether to listen to my guy at all 😘 - he tells me that it's really important that I eat protein which is exactly opposite of what I've heard others say (doctors must HATE the internet...lol). I am stage 3B. I did cut back on salt - I don't add it to anything (I still use a reduced amount in baking. Over the years I have found that for me, the best diet is the Mediterranean diet (not really a diet - more of a lifestyle). I cut out red meat altogether and drinking alcohol.
Clinical practice takes 10-20 years at least to catch up with medical research. The studies that show the impact of a plant based, low protein diet are solid, but current practicing Dr's never learned about them in medical school. My Dr. "knows" but dismisses the impact saying most patients can't/won't follow a plant diet.
I think it's sad. I never had a nephro that ever talked to me about diet. I was alo told that protein doesn't matter.
It is sad, but that's the way it is in so many professions. The people doing cutting edge research are separated from the people working on the front lines. There have been several studies presented at various kidney summits in the last three years that promote the plant based diet. It doesn't "cure" ckd, but can slow it down.
I am deep into stage 4. My nephrologist hasn't given me much advice on the kidney diet, but I just try to decrease the amount of salt that I use (but I still use too much) - and cut my meat serving size down to about the size of a deck of cards. I know I should do more.
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