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  1. #1
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    What protein do you eat to stay off dialysis?

    Hello, new to the site. Diagnosed with kidney disease in 2006. Everything was maintainting at CKD 3 with no diet restrictions until I had my daughter (2008) and hospital made mistake, blood loss, blood transfusion and exteme dehydration without IV had me drop to a GFR of 15%. I am now at around 11 and 12%. Have been for awhile. (and i'm 40 now.
    Was wondering since protein is limited is fish better than beef etc..? or what about soy protein or is that bad as well?
    I do not have high blood pressure, not on meds, not diabetic, not restricted for potassium or sodium which are normal range but am taking tums as phosphate blocker and aransep shots weekly. There is no plan for me for going on dialysis as of now..since i'm still symptomless i'm guessing?.
    Any advice is helpful! Thanks!

  2. #2
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    Re: What protein do you eat to stay off dialysis?

    Why hasnt one person answered me??? Kinda depressing it shows 84 people read this and i'm new to the forum and worried like the rest of you.. Cant someone tell me what there eating to avoid being on dialysis? How much protein and any other tips? Again, it would be appreciated.
    Thanks!

  3. #3
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    Re: What protein do you eat to stay off dialysis?

    Hi Lana,


    So sorry to hear about your kidneys. Sorry it took me awhile to respond to your post. Sometimes post get buried with new ones and we don't see them. If you had not posted this new one, I would've seen it for a couple more weeks.

    Have you talked to your nephrologist about this? Maybe he/she needs to send you to a renal dietitian.

    Each patient is different. The recommended diet at your stage ( pre-dialysis) will be based on labs. But general rule is to limit protein intake (yes fish is better than beef, but that goes for even healthy people). Try to limit sodium because it can raise your blood pressure, therefore; doing further damage (or more quickly) to your kidneys. Keep an eye on potassium because it can be VERY very dangerous if the levels are elevated. Avoid any of the Mrs Dash products, some may contain potassium for flavoring. Phosphorus is one to watch also. If levels remain high for long periods of time, it can damage not only your bones but also your heart. Avoid as much of the pre-packaged foods, dairy, soy, nuts, dark colas and beer.

    I started dialysis with a GFR like you have now. I had been on a low protein diet close to 15yrs. I wasn't very knowledgeable about phosphorus nor potassium, pre-dialysis. My dr did give me Phoslo (phosphate binder), I never questioned what it was or what it was for, I just took it as intructed. Yeah, looking back now, that was a bad mistake. I wish I had known more about it, and had avoided some of the high phos and potassium foods. I'm assuming my levels weren't too out of range or my dr would've brought it it.

    I would like to recommend http://www.kidneyschool.org/mods/ it's a great site. It's got 16 "chapters" you can do at your own pace. It's a great teaching/learning tool.

    take care!

    Marina
    I received the GIFT OF LIFE on Nov 9, 2010 thanks to my wonderful donor Laura and her family!

  4. #4
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    Re: What protein do you eat to stay off dialysis?

    Hi Lana, Welcome to the forum and I am very sorry that your first post was missed. Your experience at the hospital was really an unfortunate one. As Marina said, fish is a healthier source of protein, but it still counts as protein. Seeing a renal dietician is vital in maintaining your health, regardless of stage. I've got to say I am surprised you have not seen a renal dietician yet with your kidney function being that low. I would get a referral right away. This will take the guess work out of meal planning. Your dietician will look at your present labs and determine the best diet for you.

    Let us know how your doing and again I'm sorry your post was missed.

    Toni
    May you always have Love to share, Health to spare, and Friends that care


    Acute Kidney Function Loss 12/07 - GFR 39
    Current GFR 46 - Stage 3 - Controlled HBP

  5. #5
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    Re: What protein do you eat to stay off dialysis?

    my kidney failure statrted back in 1980 and only just last september started Hd at my locla renal unit. My diet has always been home cooked foods made from fresh foods, no salt at all. pleant of fresh veg & fruit. No alchol. Even my neph was suprise how well I keot and prolonged the start of dialysis. I was stable for 2 years at GFR 13 then sunndly dropped to 8 GFr.
    Am well happy as I am am trying to get on transplant list but need to lose weigth!
    Audrey
    Kidney problems starrted 1980's when I had Saracoidosis
    Recenty started HD at my local renal u Init in Telford.Still having a few problems with my 2nd line.

  6. #6
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    Red face Re: What protein do you eat to stay off dialysis?

    Thank you Marina, Tonia and Granny for your responses!
    I live in Vancouver Canada and I did have a renal dietician assigned to me.

    My problem is twofold - I can hardly ever reach her, she will only accept phone msgs no email and hardly never returns my calls. She apologizes and says she's just too busy but it doesnt help much.

    Also, I was starting not to trust her. I was told to eat 6oz protein and to avoid phosphates and to only take binders if/when I was eating protein but if eating white bread or veggies etc.. then dont bother. Why I dont trust her is that I cut back to 4oz and asked if it was OK and she said yes. If that was OK then why had I been eating all this excess protein per day. Also, my neph said to take phosphates at every meal not just when eating protein because my calcium levels are fine?!? Conflicting info..

    I cut back on potassium by myself since no one told me too - because i've learned that reading these forums - and she told me not to do that because its not healthy for me because my potassium and sodium levels are normal. I was eating potatoes every day though and acorn squash and tomatoes, etc etc.. I cut back on sodium now too.
    I'm glad you all told me your diet reminders and Marina - I will look at the kidneyschool site. Thank you. Very good to know.
    I was glad to hear that Granny and Marina both maintained 2 years and 15 years on this diet. Gives me hope. We arent allowed to be on the transplant list here in Canada until you go on dialysis and my neph doesnt think i'm ready for either right now since my lab results are good. Very confusing since im at GFR11.
    So THANK YOU Again!!!

    What was the reason your nephs decided that you are ready to go on diaylsis? Is it just GFR alone? GFR plus symptoms? When you crash and need to go on diaylsis do they give you time to have fistula surgery and mature it first? (assuming fistula is the way you choose to go). AND do I avoid potassium anyway despite what she said? Is cream cheese and sour cream OK? She said yes.. would you eat it? -Sorry for my MULTITUDE of questions... I look forward to hear from you. Thanks for writing.
    ~Lana

  7. #7
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    Unhappy Re: What protein do you eat to stay off dialysis?

    Quote Originally Posted by LanaB View Post
    Thank you Marina, Tonia and Granny for your responses!
    I live in Vancouver Canada and I did have a renal dietician assigned to me.

    My problem is twofold - I can hardly ever reach her, she will only accept phone msgs no email and hardly never returns my calls. She apologizes and says she's just too busy but it doesnt help much.

    Also, I was starting not to trust her. I was told to eat 6oz protein and to avoid phosphates and to only take binders if/when I was eating protein but if eating white bread or veggies etc.. then dont bother. Why I dont trust her is that I cut back to 4oz and asked if it was OK and she said yes. If that was OK then why had I been eating all this excess protein per day. Also, my neph said to take phosphates at every meal not just when eating protein because my calcium levels are fine?!? Conflicting info..

    I cut back on potassium by myself since no one told me too - because i've learned that reading these forums - and she told me not to do that because its not healthy for me because my potassium and sodium levels are normal. I was eating potatoes every day though and acorn squash and tomatoes, etc etc.. I cut back on sodium now too.
    I'm glad you all told me your diet reminders and Marina - I will look at the kidneyschool site. Thank you. Very good to know.
    I was glad to hear that Granny and Marina both maintained 2 years and 15 years on this diet. Gives me hope. We arent allowed to be on the transplant list here in Canada until you go on dialysis and my neph doesnt think i'm ready for either right now since my lab results are good. Very confusing since im at GFR11.
    So THANK YOU Again!!!

    What was the reason your nephs decided that you are ready to go on diaylsis? Is it just GFR alone? GFR plus symptoms? When you crash and need to go on diaylsis do they give you time to have fistula surgery and mature it first? (assuming fistula is the way you choose to go). AND do I avoid potassium anyway despite what she said? Is cream cheese and sour cream OK? She said yes.. would you eat it? -Sorry for my MULTITUDE of questions... I look forward to hear from you. Thanks for writing.
    ~Lana
    Hi Lana, I am Canadian too! Infact there is a Kidney patient forum in your area called Kidney-Friends.net incase you are interested.

    Also the Kidney Foundation of Canada has a book that might be useful for you and they have it online:

    http://www.kidney.ca/Page.aspx?pid=394

    When I was told to limit protein I was told to not stay away from but limit milk, cheese and meats. I would assume that fish has less than beef but I had to look it up. I was just a kid when first diagnosed so my mom took care of most of that

    Wow ... I can't believe how HARD this information is to find. Sorry but I will have to email my dietitian to email me the information as it seems there is no such thing as an easy to understand comparison list online sadly. Talk about lack of online resources when it comes to early stages of kidney disease.... grrr..

    I mean there is info but it all sucks .. here is something though just for now:
    https://secure.wikimedia.org/wikiped...rotein_content
    Angie
    Kidney Korner Dialysis Ethics Forum Kidney Pix Awareness Shirts KidneySpace Donor Search
    I will be walking a Kidney Walk in Ontario Canada Sept 18th 2011

    • Peritoneal Dialysis = 4 yrs
    • Hemo Dialysis (in center) = 2 yrs
    • 2 kidney transplants = 1990 - 2001 & 2007 to present

  8. #8
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    Smile Re: What protein do you eat to stay off dialysis?

    Wow Angie!! I am sooo grateful that you have written and let me know about these 3 links. Amazing. I had no idea.
    You are so right that there is hardly any information out there for people not yet on dialysis. Its very frustrating.
    I am sorry to hear that you have had to deal with this from a young age that has to definatley be extra tough. I will definatley be checking out those links more and its great to hear from a fellow Canadian.
    I am getting really sick of eating very bland food and all I seem to pair rice with is onions garlic and lemon. It's getting tiring. (noodles too) Hopefully there is more foods to choose from when dialysis and transplant time comes. Or do we really have to eat this strict forever?

    God Bless! Keep strong.

    Lana

  9. #9
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    Re: What protein do you eat to stay off dialysis?

    I am new here too ... I wish there was a site for new people & they could help us with our menu.... I do not find the recipes on this site helpful at all!!

    The dietician I saw said soy products were better to eat than any meat...... (like morning star products). I like the sausage & the California turkey, plus burger. She said choose a fish next, then chicken, last is to be pork & last of all beef..... All of which is harder for the kidneys to digest. . This is just what she said......Pick soy meats when you can...... I already liked them... If you have beef -- limit to 1 x a wk & limit the ounces to what you suppose to have.

  10. #10
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    Re: What protein do you eat to stay off dialysis?

    Quote Originally Posted by LanaB View Post
    What was the reason your nephs decided that you are ready to go on diaylsis? Is it just GFR alone? GFR plus symptoms? When you crash and need to go on diaylsis do they give you time to have fistula surgery and mature it first? (assuming fistula is the way you choose to go). AND do I avoid potassium anyway despite what she said? Is cream cheese and sour cream OK? She said yes.. would you eat it? -Sorry for my MULTITUDE of questions... I look forward to hear from you. Thanks for writing.
    ~Lana

    Hi Lana,
    Drs look at creatinine first then they figure out wha the GFR is. I suppose you can say they take both creatinine and GFR into consideration on deciding when "IT'S TIME"
    My Dr decided it was time for ME when my GFR dropped to 13-15%. I didn't have any symptoms or felt any symptoms (fatigue, itchyness, insomnia, to name a few). Dr told me she likes to start younger patients sooner, so they can maintain the kidney function they have left a bit longer. I know most Drs wait until GFR drops to 10% to start patients on dialysis.
    She decided that if I started at that point, it would be easier on me to continue with my daily life (working and such) rather than wait until I dropped below 10% and had to regain my energy and strength back.

    Do you have monthly labs?
    If your potassium is normal, just keep a close eye on it. It's a good to maintain a low potassium diet, maybe eat the ones on the lower list and avoid the ones on the high list. Although there are alot of foods with potassium, so just keep that in mind.

    Cream cheese is the lower potassium cheeses. But, keep in mind that just because it's low in phosphorus you cannot eat TONS of it.
    Serving size is :
    Cream cheese: 1 tbsp (NA=43, K=17, Phos=15, Protein=1.1, calories=51)
    Sour cream : 2 tbsp (NA=12, K=34, Phos=20, Protein=0.8, calories=43
    order of download your nutrition counter FREE from: http://www.aakp.org/brochures/nutrition-counter/
    They're both relatively low and okay, just stick to the serving sizes.
    I had a bagel with cream cheese every so often, always made sure to take my binders with it!

    Take care!

    Marina
    I received the GIFT OF LIFE on Nov 9, 2010 thanks to my wonderful donor Laura and her family!

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