I have PKD stage 5. My GFR is 11. I have recently started to eat primarily raw fruits and vegetables. I have only been serious about it for about a week or so and haven't had bloodwook since starting. Has anyone had any success treating your pkd with diet?
I also have psudotumor cerebri and a pineal cyst in my brain. I know this has been found in some PKD patients. Do any of you have any of them?
Try going to davita.com. They have many recipes for all seasons and it would give you a lot more of a variety to eat to support your meal plan. Diet and exercise can only help you. There is no cure but in many cases you may be able to slow the progress down, and even then the healthier diet will make the work your kidneys do perform, easier for them to handle.
Thank you.
I have a glomerulonephritis, but am also stage 5, GFR of 13, not on dialysis. The main things I focus on as far as my diet are limiting sodium, phosphate, potassium & protein. I was told by the transplant clinic dietician that smaller meals are easier on me as it's less for my kidneys to process at a time. Potassium can be high in many fruits and vegetables, so be careful with that and Google their potassium levels to check that. Phosphates can be found by looking at ingredients and anything that says phosphates or ending in "phates" you should avoid. I was also told you can look at the calcium level of something and generally the phosphate count will be about the same. I don't rely too heavily on that one though. Avoid dark sodas and red meat. Sodium, I try and keep any snack around 100 mg or less, when I do feel like snacking although appetite is less these days.
As a side note, you didn't mention, but if you are looking into transplant and haven't yet many transplant centers will accept you to start testing when your GFR is under 20, or 25 at some. You can look into a preemptive transplant if you're not on dialysis and are able to stay off until receiving a transplant. Either way, that can lessen your time on dialysis if you do end up on it, by getting on that UNOS list and starting your waiting time for a deceased donor while looking for a living donor in the meantime. Just in case you weren't in that spot yet, wanted to share. Good luck!
As yet I am not looking into a transplant. I haven't seen that they have given that much more quality of life than the transplants have. They have just extended life when dialysis wasn't working. My dad was allergic to the medication he had to take to keep the kidney from rejecting. He ended up having to go back on dialysis after a few years. I am just trying to keep what I have for as long as I have. I was resistant on giving up things early on, but now I wish I had. I am not worried about the potassium as I take two different diuretics for other problems. I figure if I am eating fruits and vegetables with only a few nuts and seeds, I cannot get too much phosphate or sodium. Thanks for your reply.
Have you ever tried gluten or dairy free diets. I have IGA Nephropathy which is a form of glomerulonephritis. Apparently several studies (though small) were done in the 80s and 90s where patients gave up gluten and or dairy. There was a reversal in proteinuria and in some cases the disease went into remission. I don't think they noted the stages of CKD.
Here is a paper that discuss several such studies.ncbi.nlm.nih.gov/pmc/articl...
Cutting out gluten sit not stop my proteinuria, but it did bring my GFR up. Cutting out other food intolerances helped raise it even further. From my understanding, our glomerulonephritis unlike other forms of CKD- those caused by diabetes or high blood pressure, involves inflamation. By reducing any forms of inflamation (toxins in your environment, food or environmental allergies orvintolerances) can help reduce the strain in the kidneys. Easier staid than done, but I have noticed a big difference when I am able to control that.
Not sure if this would pertain to you or not, but thought I'd throw it out there as something to research.
Hi. Longtime CKD. Stage 4. Recently switched nephrologists because former one said dialysis was inevitable. New one (very renowned) says as long as you're still urinating you don't have to go on to automatically go on to dialysis. gfr 12-14. Yes lessen sodium and phosphorus and protein. Stay well hydrated. Both nephrologists said transplant is much better than dialysis: allows much higher quality of life and, generally, longer life too. And, of course, then you're not stuck with needles 3 times a week indefinitely. Hope this helps.
worldnurse1, I am eGFR 27 due to loss in 2016 of one ureter/kidney due to cancer. My knowledge about dialysis is limited, but I like to keep ahead of the knowledge curve. I understand those on hemodialysis have a fistula placed in an upper arm into which a needle is inserted 3x a week. Any reason why this isn't a permanent port that can be hooked up to the dialysis machinery? I would think needle sticks are not only uncomfortable, but also at 3x a week, week-after-week, would create an irritated site.
Hi. Sorry to say this but even after a transplant if the kidney doesn't work right away you need dialysis. CKD is not curable. You feel tired because the kidney is not filtering out the protein which causes uremia. And with a transplant comes other issues that you need to take care of. Same with dialysis and you can live a long life on dialysis. Medicare approves CKD to have a transplant because it is cheaper than paying for dialysis. I've had 2 trans. and the anti-rejection med Prograf slowly destroyed the kidney. This is a drug you have to take but studies show that about after 10 yrs you are back at square one. And you are not guaranteed the hospital transplant doctors will put you on the list. That's why I am on this site. Doctors, hospitals & kidney info sites give all the positives but none help with the negative. With CKD there is both positive & negative & NO CURE. I have dealt with this a very long time and it is a day by day situation & everyone is different. Sorry to vent on your post but I had the hope taken away from me once & it sucks.
Take care & good luck.
My dad had three transplants, but only one of them worked long term. He was allergic to the medication and his kidney kept wanting to reject. They had to keep changing the meds. He started on Peretonel Dialysis, but in the end he was on hemo-dialysis. I guess watching him is why I don't really want a transplant if I can get by with dialysis. I have recently watched some information about the McDougall protocol which is low protien, low fat, high carb. I have decided to start following that diet as just fruits and vegetables was not satisfying me, and I was starting to smell like amonia. I also took some supplements for colon cleanse by Dr. Sholze After a couple of days, I am feeling better. Took bloodwork today. Will be curious to see if it is any better. When I do dialysis, I want to do the peratineal dialysis that you plug into at night and it pumps all night then you unplug in the morning and go about your day. If anyone has any experience with this I would be happy to hear it.
hi, worldnurse1, STAGE 5 gfr10, tried hemodialysis for 10 treatments then stopped and had temp. permacath removed,still peeing, but VERY weak, in need of a nephrologist, any chance you and your nephrologist are in Fl? thank you for your info.
Hi Jobeth. I did peritoneal dialysis years ago so I don't know if it has changed very much. But I can tell you that once a month you receive all the stuff (inventory) you need which you probably know since your father did peritoneal dialysis. Plus keeping the site where the tube comes out of your stomach clean and not getting an infection or peritonitis. It does free up your day from dialysis but if you have to run so many hours you have to hook up either early or if you hook up late you will run later to come off the machine. There are always pros and cons with whatever treatment you choose.
Can you tell me or where you saw the McDougall protocol. I haven't heard of it. Is it a special diet for CKD people? Even though I have had CKD all my life and have had 2 kidney transplants and now I am back on dialysis a lot has changed and I need to learn what is out there. I joined here because a hospital would not put me on the transplant list for a 3rd transplant. My hopes were dashed, but then I heard you can go to other hospitals and get 2nd opinions. That is what I am in the process of. And I only learned that from a high school friend who was rejected by 2 hospitals. I want people to know that CKD there is no cure and the doctors don't tell you what to expect after you have a transplant or while on dialysis. They make it sound all positive and it's just not. And that is what I am trying to get out to all CKD people just so they are prepared. But like I said a lot has changed in 16 yrs since my second kidney transplant.
I wish the very best to you. Don't know if I helped or not, but this helps me.
Take care and good luck and I'm here if you have more questions or just want to talk.
McDougall wrote a book called "The Starch Diet". If you search for that or for the Rice Diet, you will probably find him. I will try to put the link, but I am not very good at putting links so I will do my best. I am also reading another book that I have been getting in my email chapter by chapter on kidney diets. It goes through all of the research and explains how we need to identify what our kidneys can handle based on their function, and then eat less of a load so they handle it fine. He hasn't gotten to the actual foods part of it as far as how to figure it out. What every diet I have studied has determined is that any animal product is not good for our kidneys. Any oils or added fats are not good either. Vegetables still have protein, but the protein from vegetables is easier for our kidneys to handle. In order to not overload the kidney with protein or fat, starches (rice, grains, etc) are used without adding any oil to them to eat them. Legumes can be used but need to watch depending on the ability of your kidneys as they have protien and phosphorous. The starches give you energy and caleries without adding protein or fat.
drmcdougall.com/health/educ...
I tried to copy the link to the other book, but it would not copy. The author is Lee Hull. You might be able to look him up.
When I did my bloodwork Monday, all of my numbers improved some. Not sure because if it is because I had been eating fruits and vegetables for a week or so, or because I added some start a coupe of days before, or because I took a bowel supplement by Dr. Scholze (herbdoc.com) I was starting to smell something through my skin last week so I think the fruits and vegetables was too much of something. I took several # 2 supplements a day for a couple of days and I could not smell it anymore. I will see how things go in the future. I feel better since starting with some starch.
Thank you for the info. Very interesting. I will have to look into it. Thank you again & good luck to you.
Ddwebangel: Thank you for your helpful information. I agree that many doctors paint an overly-rosy picture of available kidney disease treatments.
Not to be pessimistic, for any of us, but also to have realistic perspective. Diet can help, and new developments from research are always possible.
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