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Kidney failure & backwards food requirements!!!

Thursday, June 23, 2011

So I got some unfortunate news on Tuesday. My kidneys (which I always knew were bad) have gotten REALLY bad. There are 5 stages of kidney failure and I am in stage 5, the worst one. I'm meeting with my nephrologist August 4th to discuss what we are going to do - transplant list, dialysis, etc.

UNTIL THEN - I have been sent back into the world having to change my diet around. Everything that I thought was healthy, isn't healthy for me. For example - I have to switch from whole grains to white bread and white rice. I have to eliminate tomatoes!! I can have cauliflower but not broccoli... I am so confused. I've put in a call to talk to a renal nutritionist but who knows when that will happen. Everything I'm learning, I'm learning from good online sources but it's really hard!!

My new nutritional goals are:

1) Limit protein to 60 grams per day
2) LOW sodium (but no # was given yet)
3) LOW potassium (again, no #)
4) LOW phosphorus (....)

The protein I can deal with. The sodium I can watch. The other two - SO HARD! I'm geting a smart phone this weekend (thanks to my wonderful parents) because I think it will make it easier to track things and look up food while I'm out.

I think the worst part of this is that it makes no sense to me. It's easy to eat "healthy" - fruits, veggies, low salt, good quality protein, and good carbs. Easy peasy. But this??? I never would have thought that mangos, papayas, and raspberries would be bad for me!! I just need to get a handle on it...



This is my lunch today. It's my first real meal that meets all the goals.
Salad: lettuce, red pepper, carrots, cucumbers, and low sodium turkey. Dressing is balsamic vinegar and oil and some Mrs. Dash because I couldn't find a low sodium dressing.
Fruit salad: strawberry, blueberries, and a fresh pineapple! Only $2 a pineapple so I bought 2.
Side: 2 pieces of italian bread, no sesame seeds with a little butter on it. (I still need to buy unsalted butter but I forgot).
And a ginger ale. Non-diet!! haha Only good part of this...

If anyone has an suggestions, I'm all ears!!
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  Member Comments About This Blog Post:

CINNAMONCAT9 7/20/2011 1:58AM

    you are both gorgeous and intelligent, and your youth will make it easy for you to eventually get a transplant. I am helping my dad right now with his new diet, as he just got told his kidneys are only operating at 25%. He has to go to an educational class to learn about dialysis. Transplants aren't even an option for him, due to his very poor health: diabetes, heart disease, Hepatitis C, etc. along with disabilities and age (77). You will lose weight on this diet. The less you eat, the better it seems to be for your kidneys. It taxes them less. I am using the Da Vita website, and this site also has that great team that I see you joined. You are going to be fine. Keep using your brilliance to make good choices, and love yourself and relax all that you can.

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CRYSTLE4HIMTX10 6/26/2011 2:02PM

    Praying that you will find what works best to keep you healthy.

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I.M.MAGIC 6/25/2011 9:54AM

    I'm sorry you're having to go through this scary stuff. You are NOT alone, m'dear. The whole ESRD team--and then some--is right with you.

BAckwards food requirements?? I LIKE that terminology, 'cause that's EXACTLY what it feels like! LOL

I'm warning you, this is going to be a novel! LOL

Have you checked out the ESRD library yet? Until you can get to that renal nutrition specialist to get a customized program, there's a basics list there of things that can help... along with a lot of links to things like that AAKP nutrition info brochure...

...and posting regularly and asking the team for help works too-- Just ask WENDYJM4! She's amazing! She's also stage 5 and has actually had some small improvement in kidney function following the protocols and a self-customized exercise program. Myself, I went from stage 4 to stage 3... though other health issues are making it difficult to stay there right now! LOL

It may not do miracles but using those protocols certainly won't hurt! LOL

As for numbers... Once you see the nutrition specialist, this may be different for you, as we all have differing issues, but just for now:

US RDA for sodium for adults with chronic health issues was recently lowered:

No more than 1500mg per day.

My own potassium requirement is 2000mg or less.
Phosphorus is about 600mg, or 60% of the daily RDA.
Protein, my nutrition specialist told me about 114g, which is 4oz-- higher than yours, but then I am at the bottom end of stage 3...
And I'm allowed ONE dairy serving per day--butter, sour cream and cream cheese do NOT count toward that.

The hardest thing ever having to curtail chocolate--I'm reduced to a single tiny piece as a rare treat! LOL

Having SP's nutrition tracker, and some parameters to go by, makes it a lot easier than it might be otherwise. You can still have some of your favorites by planning ahead and tweaking the numbers so your daily total isn't completely off. I use salted butter... and make up for it elsewhere, trying to do so without sacrificing flavor--and you're right, it isn't easy! LOL (The library has some ideas for that too. Check it out...)

And oh, yeah, 9-18 x 8oz glasses of water a day.

Of course, this is true ONLY UNTIL you are directed otherwise, like when you start dialysis or are being prepped for transplant. Then all bets are off! The rules will change AGAIN... That renal nutritionist is going to be your best buddy then!

...fun, huh? NOT! LOL

But it's do-able. And emoticon

Do keep posting, it helps SO much!

Kathy emoticon emoticon

P.S. I make my own bread when I can--no phosphate based preservatives that way, and it's a good upper body workout! LOL

Comment edited on: 6/25/2011 10:06:11 AM

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DIETSAFARI 6/25/2011 4:42AM

    The best thing I can think of if for you to drybrush your skin everyday, in the direction the lymf flows, to the heart.
That should help your kidneys get rid of toxins through your skin, to take a bit of the load off your kidneys.
I am so sorry that you have this crisis to cope with...
Hope it will improve soon.
emoticon
I am sending you a Spark Heart, just until you get a kidney
Hugs

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CBEVNOW 6/25/2011 1:28AM

    Every thing i use to eat , as you said we were taught its healthy for us and it is if you dont have CKD. Strawberrys i would ask about, but only eat organic ones, because they are planted and sprayed with a horrible pesticide. As i have said the only way to go is with a RENAL DIETITIAN they know Kidneys. Percjester, has some good sites listed, dont forget the National Kidney Organazion, also remember the AAKP, AMERICAN ASSOCIATION FOR KIDNEY PATIENTS, THIS WAS STARTED BY KIDNEY PATIENTS,FOR KIDNEY PATIENTS. Most of us are told NO SODA POP at all. Eack CKD patient is different and your needs will probley change from time to time. I'm allowed 6-oz of dairy a day, i also drink almond Milk, there again it depends on your blood work, I only do organic foods, and it has helped me so much, The best to you. emoticon emoticon emoticon
Caroline emoticon

Comment edited on: 6/25/2011 1:29:28 AM

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TERRBEAR12 6/24/2011 10:44PM

    Whoa! Hang in there. It sounds like you are doing good keeping your spirits up, but remember should you need some help or some laughs or whatever blog or send a message direct!
Take care.
TerrBear

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LIFE-FAITH 6/24/2011 8:10PM

    Phosphorous can be challenging as it is in many foods we dont think about... check out the national kidney foundation nutritional guidelines - it will tell you. I hung mine on my fridge until I got it down pat by heart. Orange juice was one of the hardest things for me to give up. I miss it very much..but I love my kidneys more. Most dairy items have phosphorous. I only have butter ONE day a week and then it is less then a serving. Milk - I dont touch it anymore!

You will adjust. You will find your way and what works for your body and once you do, you will feel so much better.
jean emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon

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DARLENEK04 6/24/2011 1:29PM

  Good luck and God bless. I have kidney disease also,
or so the dr. says....I am looking for a new nephrologist
because the one I have herds people thru his office like
cattle, and if you are lucky he might say hello. He has
no answers for any questions I ask, like what I should/should
not eat or drink.
Just lose weight and get off my high blood pressure meds.

Let us know how things go.
Darlene

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BARBARAROSE54 6/24/2011 1:00PM

    emoticon emoticon emoticon

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ANOTHERMOMOF2 6/24/2011 8:15AM

    Hoping you get to meet with the renal dietitian soon. Tell her you track things with SparkPeople. She will be glad to know you are used to tracking food. Good luck!

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LORIAPO 6/24/2011 12:06AM

    I'm sorry about your news. Hopefully after meeting the nutritionist, it won't be so overwhelming.
I will keep you in my prayers.
Hang in there!
emoticon emoticon Lori

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SLOLOSER 6/23/2011 10:08PM

    I hate to tell you this, but you may want to avoid blueberries and strawberries as well. I believe that all berries contain significant levels of oxalates, and people with kidney damage should avoid them.





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THETURTLEBEAR 6/23/2011 9:23PM

    I will keep you in my thoughts - hang in there and Spark on!

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MILLISMA 6/23/2011 9:05PM

    Wish I new what to tell you but hope you can meet with the nutritionist soon. So sorry to hear what you are going through. Will keep you in my prayers. Sending lots of hugs. emoticon

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PERCJESTER 6/23/2011 2:17PM

    Sorry to hear about the news from your doctor. Hang in there and try to stay positive.

I was surprised to see raspberries on your list of "no-no's". I thought they would be okay for your situation. the link below might assist you.

Stay strong!

http://www.davita.co
m/kidney-disease/diet-and-nutri
tion/diet-basics/diet-tips-for-
diabetics-with-kidney-disease/e/5328

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LINDAJ0621 6/23/2011 1:39PM

    Sorry to hear that news. My DH also saw a kidney doctor on Monday and found out he has 31% kidney function, so that puts him on the line between stage 3&4. He is a longtime diabetic with hypertension and coronary artery disease. So, we have to not only consider the diabetic diet (he is on insulin) but also the very strange kidney diet. I haven't figured it out yet either and I can't seem to find enough information anywhere. We see his doctor again on July 8th for more tests and I will have a list of questions with me. Take care and good luck to you. By the way, we have a niece who had been on dialysis and rejected her kidney transplant and went back on dialysis again. She has been living an amazingly full and happy life with this disease for about 20 years now (she is now 40).
emoticon emoticon

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NEWCCBARBIE 6/23/2011 1:37PM

    Oh man! Sending lots of prayers your way and hope that you're feeling better soon! emoticon

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NCREMEENS 6/23/2011 1:31PM

    I'm so sorry to hear about your bad news. You are very strong to be still working towards your weight-loss goal even with all the restrictions to your diet - you don't seem to be giving up! I don't know anything about a renal restricted diet, so I can't offer any suggestions - but I will keep you in my thoughts. Hopefully the nutritionist will get back to you and tell you more strict guidelines to what you are supposed to be eating/drinking.

Best wishes and good luck!

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