Stage 5 CKD: I'm 71, and had a cancerous... - Kidney Disease

Kidney Disease

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Stage 5 CKD

MPJ1 profile image

I'm 71, and had a cancerous kidney removed 3 months ago. My remaining kidney is stable and not improving. I have a gfr of 15 and creatinine of 4.1. My nephrologist wants me to go to plant based protein and low potassium. Finding it hard to plan after looking at all nutrition values. Could use some suggestions

54 Replies

We have similar problems. I had my right kidney removed in June because of a level 2 cancer as well as a major blood clot. I am 71 as well. We have fantastic support here in Winnipeg, and I just recently started taking iron pills which has given me a lot more energy. My remaining kidney is working at 15% but I have finally started to understand the word moderation. Also I have started to listen to the Drs and have cut my water consumption back to 2 litres per day. Things seem to be improving. Good luck

MPJ1 profile image
MPJ1 in reply to BigDino

I've been taking iron for a few months.Still a little anemic.

orangecity41 profile image
orangecity41NKF Ambassador

WeIcome to the forum , in which we share information and give support to one another. I am 80 years old and was diagnosed 5 years ago at CKD level 3b. My Doctor put me on a diet that also restricts protein and potassium. It has helped me. Did your Doctor offer a diet or referral to a dietitian?

MPJ1 profile image
MPJ1 in reply to orangecity41

he did not refer me. Had me read a book called Plant Fed Kidneys. Which was good. Putting it together is another story.

orangecity41 profile image
orangecity41NKF Ambassador in reply to MPJ1

Yes can be difficult, because you want to be sure getting right nutrients too.

I have read that plant based iron isn't absorbed as well as animal iron. Is that way people on plant based diets are taking iron pills? I do have mild anemia but iron is not the cause.

orangecity41 profile image
orangecity41NKF Ambassador in reply to horsie63

Thanks I will check that out. I am taking it on my own as felt needed to do something.

I worry because too much iron is toxic.

orangecity41 profile image
orangecity41NKF Ambassador in reply to horsie63

I take one 18 mg capsule a day and is ferrochel iron bisglycinate. I will ask my doctor about it.

Bassetmommer profile image
BassetmommerNKF Ambassador

Hi MPJ1,Switching to plant based is something that can be done gradually. Stop eating red meat of any kind, and less and less of chicken until you do not eat any. Switch dairy to almond milk. You might be surprised how yummy it is. Cut down and then out eggs by going to egg whites first. No animal protein is hard to get away from at first. If you are there, good for you.

Potassium is tricky with plant based, but you will learn that there are plenty of things to enjoy.

Start fresh. Salad is your new best friend. I eat a salad every night. Then I might have something else with it, if it is a small salad, and then sometimes, its really big and my total meal. Making salad every night is a pain. So every couple of days or so, I prepare peppers, red and green, cukes, radishes, and maybe shredded carrots and put them into baggies. They will keep for a while and then you just put what you want on your salad. All of those veggies are low(ish) in potassium. I eat red or green leaf lettuce. Better than iceberg, more nutritious and less potassium than romaine. I prepare that in big bunches as well. I soak it for a couple of hours to revive the wilt and then rinse with lots of water, spin dry and store in a Tupperware container for a couple of days. I add apples, grapes, tiny cauliflower florets or broccoli florets. Truth told, I add shredded cheese because sometimes my protein is too low.

My favorite veggies are asparagus and broccoli and I love them with pasta. I soak both to help remove some of the potassium, which is called leaching. I eat breads, usually ones with ore texture and fiber. I make my own. I eat Tumaros wraps with hummus, and then stuff with salad fixings. Add beans and salsa and you have a nice taco or burrito. I make my own salsa but there are lots out there that fresh. Try to look for them in the diary area. Stay away from the jar stuff as it is loaded with salt.

I like beans, legumes such as black beans but I eat the sparingly, like a 1/4 cup. I like hummus as a snack. I eat a lot of strawberries, cherries, (in season) pineapple and apples (all year) No citrus and no melons, sadly. I don't like blueberries but they are good for you.

When you eat a high potassium food at one meal, just don't eat high potassium again all day. A food tracker that has accurate levels is the best way to learn and then have a library of what you can eat. I use MYFITNESSPAL. I eat 2 meals a day. Breakfast hardly ever changes. it is oatmeal, with fruit, and almond milk. Dinner is salad and then maybe pasta and a veggie.

Want some changes. Try grilling fruits and veggies. Use lots of seasonings to change up flavors. Add balsamic vinegar and oil for yummy goodness. Even salsa can really zip up a meal of cauliflower and rice. There are recipes for making "red sauce" out of red peppers that replaces traditional spaghetti sauce. I prefer olive oil and tons of garlic on my pasta. I even have avocado oil spray to use on stuff. I use half a red pepper grilled with all the regular trimmings for a hamburger. Big mushrooms are also good hamburger replacement.

Be careful reading recipes that say they are good plant-based meals. They often have tomatoes, beans or potatoes, and squashes which are all a no no. Also, the fresher the better. You will learn to really appreciate food when you grow it, or specially shop for it when you know it is going to make you feel better.

Last piece of advice: The people I know who are successful on plant-based eating are those of us who are not afraid of eating the same thing over and over. Once you get a repertoire of what is good and safe, then it is easy to stick with it. Just remember this, its for your best interests to stay off dialysis which also has huge dietary restrictions. I have actually raised my GFR up and lowered my creatinine. The other improvements in my lipid panel amazed my cardiologist.

Ask questions. I love to talk food.

MPJ1 profile image
MPJ1 in reply to Bassetmommer

Thank you so much. I was thinking along the same lines. One step at a time.

Hello - that reply was so interesting - I will be adapting it for myself. you seem to have a lot of food knowledge - my favourite go to is Biona Rye bread with sprouted seeds made into a toasted sandwich with a small portion of cheese which is the only protein I eat. Would be bread be dangerous for me to eat with ckd 4. Also I know I am naughty but I have 5 prunes and 2 apricots for breakfast with a spoon of flaxseed - it keeps constipation at bay. That is the only potassium food I have in the day. My diet is restricted by myself as I do not want to go down the dialysis route. What are your thoughts on taking magnesium either in powder form or tablets - thank you for sharing.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to fartikins

HI Fartikins, We, I , cannot tell you to take anything. I can share what I do, but you should always run things by your nephrologist. Why do you want to take magnesium? I will tell you this. I was taking magnesium to help with cramps I was having with a medication I was on. I kept it up even after I was not taking the med. Two years ago, I had a lab done, and my magnesium level was extremely high and so I stopped. I had been on it for years, and then all of a sudden, it became a toxic level. That is why you need to always tell you doctors what you are taking and have them check the levels.

Pontios profile image
Pontios in reply to Bassetmommer

Thank you Bassetmommer, that is really detailed advice on managing a plant based diet. I will certainly use it. As you say it is all about planning ahead, having the food ready and sticking to routine. I try to prepare my items (low salt, vege, fruit, tofu, textured soy protein, rice, pasta dishes) at the weekend so that I have them ready during the week when I have no time for preparation.

Just one thing, on my list of kidney "no nos" is garlic

Hi Bassetmommer, just to clarify on the garlic, it causes kidney stones in females over 60 who are on Furosemide, and that is me.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to chicablue

Hii Chicablue,Who told you that garlic ever causes kidney stones? Please site where you found that if you saw it on the Internet. It is not true. Furosemide is a diuretic and that may cause stones if you do not drink enough water. But garlic is great for kidney health.

Some cited sources:

medicalnewstoday.com/articl...

ncbi.nlm.nih.gov/pmc/articl...

dharmakidney.com/garlic-goo...

sciencedirect.com/science/a...

I got it today off the internet. I cant send you a link because I dont remember how to. I also read it in a list from a book written by a doctor. Also, I want to thank you for the info on your plant based diet, and noticed you didnt mention soy beans. I;m glad because I cannot tolerate soy. it;s the one thing I disagreed with in the Lee Hull diet book. soy causes cancer, which the food industry in the U S doesnt seem to recognize, as they put it in everything!

I found that nfo on several places, one is ehealth.com/garlic kidney stones

I previously read those links. Where I found my info mentioning that diuretic was on the right side of same search pg, it says related searches, and it was one of those.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to chicablue

The link did not work. It is a site for insurance. The only reason why I am pushing this is that everything I have read says garlic is very good for kidneys. And when I hear something like you are saying, it makes me wonder. Also, other people read these posts and I don't want misinformation being given. Make sure that you understand that I am speaking of garlic, natural cloves used in cooking and not supplements. But even everything I have read, even supplements, say garlic is beneficial to CKD and it can lower BP.

spandidos-publications.com/...

academic.oup.com/ajh/articl...

I did read about garlic being good online, The reason I was researching was because I wanted to see if I could find out why a dr. put garlic on his list of things CKD patients should not eat, which i read in a book. I found two references online about what I told you. If you do a search for "garlic kidney stones" I think you will find it too. I am disabled and have time to research online. It is surprising how among the kidney "experts' there are so many different opinions on diet. Since I was in hospital for over 6 months, i learned from nurses to check out everything and dont blindly trust. I have researched every prescription I've been given before taking it. One renal diet book says you can use horseradish (lee hull). I also happened to find that on another list that kidney patients should not eat. So if i read something in a book I dont understand, I researched it, because I happen to like garlic.

is there a way to private msg you on here that wont get published on the blog. i have a question

SANDRACEE profile image
SANDRACEE in reply to chicablue

As a lover of garlic, I had to search and all I could find was this link when I searched "garlic + kidney stones"

dietaketocustomplan.com/is-...

Sorry, I can't post it live you'll have to cut and paste. I think we're safe eating garlic thank goodness.

😅

chicablue profile image
chicablue in reply to SANDRACEE

Thanks, good to know. My potassium is too high, maybe I shouldn't eat a lot of it.

Well now I dont know what to think about the garlic. I know what it is by the way. Back when my old dr told me he didn't believe in any vitamins or supplements except vit d and fish oil, i was reading about supplements and one thing I remember was that garlic supplements were not recommended for anyone, not even healthy people! Even drs dont all agree re supplements! One dr once wrote that people who take supplements have a 50% higher chance of staying out of the hospital than people who don't take them. My neph also told me never to take magnesium, yet I see patients here in this blog that say they were told to take it.

These are wonderful but do you work also? I work full time and live in a very rural area where the only grocery within a 1 hour drive is Walmart. Now that it's May the farmer's market in a somewhat nearby town should open.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to horsie63

I am extremely busy, more so than when I was working fulltime. Its all about making priorities. I always ask people when they say they do not have time...how much TV do you watch? Everyone has a different journey with a different path. Its what you make of it that works for you.

I don't watch TV but I do have 2 horses, 4 dogs and a few cats. What I find most frustrating at this particular time is finding low potassium, low salt foods that I like to eat. I'm at the point where food holds no interest and some days I have to make myself eat. Just another step on the journey.

I was diagnosed +30 years ago.

One of the major change I made is my food habit. It was a lifestyle change, not just diet. It was a commitment - I figured my health, life and mobility is worth the change.

I carried that lifestyle for years and it did not affect my career, family, etc. I have enjoyed basically a normal life. Never went to dialysis.

I am now 67, going 2 years after transplant and still living life as normal as it can be. Of course there are obstacles - but nothing I did not researched, read, prepared for and expected. My options, my choice, my positive outlook.

After the transplant, my nephrologist encouraged me to start eating what "normal people" eat. But I always drift back to my old habits. Surprisingly, the enjoyments I was expecting never stayed for long. Not guilt, but just didn't care for them anymore.

From the moment we wake up, we make choices. The options are abundant, but we must make that choice for us. Only you can make that choice. But once you do, get full buy in. So you can continue to enjoy life.

Take care. Be well.

You had transplant without going through dialysis ?? If you had started dialysis, will that have delayed transplant for 5 to 10 years ?? How long did you have to wait, to find match for transplant ?? What was your eGFR before transplant ??

- Yes, straight to transplant. Never planned to go to dialysis. The success factor goes lower if I do dialysis first.

- 5 years before any further intervention required, I already weighed my options and have chosen transplant. I lined up living donors (3 relatives have voluntered) and ready anytime.

- my egfr was 5 when the transplant was done. I had very good Nephrologist and his team who partnered with in my journey (15 years with them) and monitored the right time for yhe transplant

- +30 years planning, research, read, etc. I had to pay for my own so I also saved 50% of my take home pay - half of which went to medical preparation, not only mine but fir everyone. This while raising (with my wife) 4 children, building a house and career, travelling etc, enjoying whatever God allows me. My children are now all grown and have their own lives.

BTW, I still work full time and will complete this month the last of my medical bill.

Takes a lot of planning, foresight and discipline.

Hope this helps

Hats off to you my friend. Really great planning and discipline with positive attitude. What is your profession ??

Thanks, Fatbuddy.

Am a CPA - started as auditor and hopefully will retire this year as Finance Director for Asia. The last of my savings' plan can now last me 10-15 years' worth of my meds (they are really expensive and am still paying for them, no insurance).

I have to be positive - can't worry on things I can't control. But I can always move forward.

Take care. Be well.

WIW... no insurance ?? Wish you were in USA. I am engineer, but did Commercial Real Estste loans, as private mortgage broker.

God help all of us This is life.

My 66y old mum had nephrectomy 5y ago for same reason and has followed a healthy diet since including limited protein (0.8g/kg), fruit/veg and 1-2l/dy water etc. Her eGFR took a few months to get going but has now increased from 36 post nephrectomy to 76 latest. Increasing proteinuria is her main problem now

Fatbuddy profile image
Fatbuddy in reply to userotc

Wow, great improvement in eGFR. Protein is not limited. That is standard for any healthy person. 0.8 to 1 gram protein per bbn kg body weight.

userotc profile image
userotc in reply to Fatbuddy

Sorry I meant limited compared with mine (but I weight train daily)! We are not currently focused on protein for mum.

Fatbuddy profile image
Fatbuddy in reply to userotc

Okay. Thanks. Still great increase in Gfr Do you do weight training or mom ??

userotc profile image
userotc in reply to Fatbuddy

It's me that weight trains most days. Mum does her pilates, walks etc though so is quite active which likely helps.

SANDRACEE profile image
SANDRACEE in reply to userotc

Hi there, if you don't mind me asking what are you doing, naturally for protein in the urine, my neph is really focused on it and even though min is low and not present in all labs she's put me on Forxiga because she (and many other nephs believe protein is a huge indicator of kidney heath more so than egfr) I also train with weights regularly, do you think that has any effect on your creatine levels, also do you take a rest day or two before you do your labs? Thanks in advance!

userotc profile image
userotc in reply to SANDRACEE

Hi we are currently focused on a low carb approach plus normal, good health and wellbeing for mum. She doesn't weight train and doesn't alter her moderate training schedule for labs eg creatine.

If this approach doesn't work, the plan is to lower protein from 0.8g/kg.

Her neph is currently unconcerned with protein and seems only interested in eGFR so no consistency there with medics!

SANDRACEE profile image
SANDRACEE in reply to userotc

Sorry, I thought you had CKD, that's why I was asking questions about training. :-)

userotc profile image
userotc in reply to SANDRACEE

No. I'd assumed you'd read my earlier conversation with Fatbuddy. I'm only 30!!

SANDRACEE profile image
SANDRACEE in reply to userotc

No worries, I was diagnosed when I was in my 30s, so CKD is not specifically an age-related disease. My damage was a result of chemo.

userotc profile image
userotc in reply to SANDRACEE

Sorry to hear that. I suffered serious side effects from a prescription drug 6y ago. Still not fully recovered - but unlikely to take any medication again now!

Hi, A year ago my egfr went down to 14. I cut out red meat, all processed food and replaced half my meals with veg meals and my egfr improved to 15,16,17,18.So it does help, good luck.

Hi. Many of us have had to modify our diets to accommodate challenges. If you're having a hard time putting a menu together on your own, you may want to visit the huge Davita kidney friendly recipe site (link below) as many others have done. With the right diet, you may well be able to live a good number of years without issues. Sending encouragement your way!

davita.com/diet-nutrition/r...

MPJ1, is your urinary protein measured - how's it looking? I found old research showing its more common with a single kidney. As you'll note in my earlier reply, it's the main issue with my mum post-nephrectomy which we are working on.

I'm curious, for those of you who went plant based or dropped your protein intake and it improved your eGFR, how much protein (meat based) were you eating before? I eat very little meat...mostly chicken once or twice a week, drink rice milk and yet my urinary protein is high, my creatinine level is 2.37. I rarely eat eggs. I will speak with a dietician at my Jun 7 appt as I have no idea what else to do. My weight went from 97 to 92 in the last few month. I just can't get the nutrients I need from eating just fruits and veggies. I used to do ultramarathons but I have trouble just walking 10 min on the TM.

SANDRACEE profile image
SANDRACEE in reply to horsie63

Hi there, I'm totally plant-based now and am but I am spilling protein for the first time. I'm also having a very hard time keeping my caloric intake up. I run and weight train and have definitely noticed muscle wasting; I know my body is not thriving on this diet but, my gfr is up so my neph is happy, however, I look like a damn skeleton and some days am so weak I have to force myself to do my normal routine. But the Doc is happy. I'm not sure what to do, previously I ate very little meat, but I did eat, eggs, cheese, some dairy, fish, and occasionally chicken loads of vegetables, no junk lots of water. I used to have loads of energy and I'm normally really, really active. I have to change my diet because this is not working for me. I have to put some weight back on because I know at 5'8 and 106 pounds I am just not healthy. My neph just put me on Forxiga for protein spillage and it seems to be working by my labs on Friday, but a side effect is weight loss which even after only two weeks I have noticed (maybe 2 pounds??) So, some things have to change.

horsie63 profile image
horsie63 in reply to SANDRACEE

Oh my, you are right Sandracee, 5'8" and 106 is unhealthy. At least at 4'9" my 92 lbs are within a healthy BMI. Do you have a dietician? I have read here that a too low BMI will keep you from a transplant just as a very high one will. I don't think you are taking in enough calories for the ones you expend working out.

SANDRACEE profile image
SANDRACEE in reply to horsie63

Yep, I have a renal dietician. She thinks I'm fine, although I believe she's more focused on my blood and urine numbers than my BMI. I'm a bit away from the transplant list but my quality of life kinda sucks right now, so this diet is not working for me despite the fact that it is working for my kidney function. I'm going to have to find a different plan that is something in between because I need to put on some weight!

Hi MPJ1, I am 75 and gfr 11. My nephrologist has never mentioned plant based diet! My old trusted neph who retired when my GFR was 13, also never mentioned going on plant based diet. I also have read several renal diet books, and only one out of 3 touted plant based protein only. I am not arguing against it, i guess its something new. My only experience is that I tried it for 3 days and gave up. I was suffering from gas and diarrhea, and stomach cramps. . i am not meant to go vegan. I can quit the red meat, but i love eggs and fish. Everybody s different. All I can suggest is do it gradually, and good luck!

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