Renal Diet

[kitkatz]

I know I know I keep posting here alot, but I promised Epoman to keep this section alive and well and dammit I am going to do it!  So here is what is on my mind today about the renal diet.  Warning this may be a rant or a pleasant journey through my thoughts...We shall see.

When I first bgan dialysis over seven years ago I thought it was just a matter of cleaning my blood with a machine three times a week.  They don't tell you when you are in the hospital that your diet is about to undergo a radical change; as is your entire life.  I wondered what Renal Diet meant when I was eating off the hospital trays and would read the menu offered to me. I also wondered why they were not bringing me what I checked off on the menus. I finally talked to a cafeteria dietician in the hospital and told her if they were going to feed me mouse portions, they should at least bring me a snack every now and then. They started to send up tuna salads in the afternoon, or a sandwhich.  I even had to throw some of it out because it was too much! They even tried one day for dinner to JUST give me a baked potato for a main course. I damn near threw the entire dinner tray at the nurse. 

However the topic here is that they do not TELL you what you are getting into when they first put you onto dialysis.  You should have seen the two page letter I wrote to the nurses and doctor asking for information on dialysis.  I finally got the welcome packet for dialysis patients and read everything in it.  I still have the info, too and reread it periodically.
     I looked at all of the information on diet and tried to apply it to my life for the first several years I was on dialysis.  Then one year I gave up and applied just the basics to the diet.  The blood work did not change any, so I must have figured something out.  The phosphorus is high all of the time, around six usually.  But the PTH is crazy right now and is affecting that too. It is all interlinked and the PTH cannot be controlled by diet.  I can work on the phosphorus and I do. 
   Essentially I learned how to cheat the renal diet.  I think everyone has to learn how to do it, or you will go crazy.  Rice cakes and water just do not do it for me.  Oops no water. not allowed.  Then rice cakes and ice just do not cut it. Well, there are some thougths.  There's more coming later.

[Black]

Some told my husband to watch his diet closely to stall the progression and multiplication of the PKD cysts.  Others said the dialysis diet will start soon enough, eat what you want while you can.  He bounces back and forth from the two extremes, with long periods in between when he is doing pretty well on his diet.  He has always been a meat and potatoes man w/ a penchant for salty snacks, frequent pizza and loaded sub sandwiches.  He has learned to cut his meat consumption and to add rice to almost everything.

Since he is not on dialysis yet and his labs are still good, he is really not that restricted yet -- just has to watch the protein.  For example, when I make my Mexican casserole I cook it with much less tomatoes, less cheese and less meat, then to mine I add extra tomatoes, cheese, meat and kidney beans, and to his I add extra water and rice.  I made the changes to his so gradually that he says he really can't tell the difference.  When I make stir fry I cook most of the meat on the side and add to mine -- to his I add extra greenbeans and lots more rice -- I get soy sauce, he doesn't.  Actually most of the time he cooks for himself -- always lots of rice, and neither of us ever add salt to anything.  He has puffed rice cereal for breakfast but does sometimes splurge by having a sausage patty in a biscuit, or grits with an egg.  His cousin occasionally makes him potato salad with soaked and over boiled potatoes, and very light mayo -- he loves her potato salad!

The Northland brand cranberry juice blends have been a great way for him to get extra liquid w/o getting a lot of things he shouldn't have.  His weight is always a concern.  His normal weight is around 220 but the huge kidneys probably have added at least 20 pounds to his weight, along w/ some fluid retention, and the inactivity has added some fat -- he's around 270 now.  The director at the dialysis clinic said his weight is okay for the NxStage, but I wish there was some way for him to take some of it off.  You'd think that at GFR 11, his appetite would be poor but he's always hungry.

When he does finally start dialysis, especially if for some reason he can't start on the NxStage right away, I'll be here every day wanting diet and recipe help!

Lorelle

[Panda_9]

Black, does your husband still urinate normally? If he isnt then some of the extra weight could be fluid. Rice contains fluid, so it needs to be factored in any fluid allowances too. I just noticed cranberry juice is lower in potassium than apple juice, no one ever told me that!! I have gone without juice for ages! You get little 110ml juices in hospital, but I like to have a huge glass of juice, mainly ones with apple, pear, mango, pineapple or passionfruit.
I am now on nocturnal, so my diet is very free THANK GOD. But when I was on conventional, it was extremely restricted. I really have empathy for those who only have conventional on offer. If you want a nice treat occaisionally, eat it while on the machine in the first few hours. I dont know if this is actually allowed, but it seems to be what alot of others do. Just dont go overboard!

Rant away angie, because the renal diet does suck!!! It would have to be one of the worst diets ever! Even a low fat diet is better than a renal diet. When I first started hemo I had alot of trouble with potassium and I got to the point where I just didnt eat, because I was scared it would go to high. I asked the dietition how much K+ I could have and she said 90mmol per day. Well if you add all that up it is a pretty decent amount to eat. The problem was, I stuck to it like a T, and alot of the times didnt even have 90mmol, and my K still went up! 

I hope this diet and recipe thread can help us, and help those who havent yet ventured into the world of a renal diet. I will try and post as many recipes and ideas as I can. And I hope the K list is a help!

[angieskidney]

it makes sense. I remember when I still had my kidneys I had to watch my protein and was encouraged to drink lots to help the kidneys. Then with dialysis it seemed like it went to the total opposite over night and was hard to adjust but not impossible. I just wished they woulda warned me about the diet.

Rant away angie, because the renal diet does suck!!!

I hadn't even posted yet

[Panda_9]

Whoops I meant kitkatz!!

[kitkatz]

Are sweet potatoes any higher or lower in phosphorous or potassium than regular potatoes?

[BigSky]

Are sweet potatoes any higher or lower in phosphorous or potassium than regular potatoes?

They are lower in both.  397mg potassium, 63 mg phosphorous.  Baked with skin.

[Panda_9]

Check here kitkatz http://ihatedialysis.com/forum/index.php?topic=819.0

How much sweet potato are you referring to BigSky? Its important to include portion sizes.

[allison]

if you guys want to check the potassium or phosphorus level of any food, including for a specific portion, definitely look here:

http://www.ars.usda.gov/Services/docs.htm?docid=9673

here's some of what it says for potatoes:
potato, baked w/skin (wt 202g) - 1081 mg K, 141 mg PO4
sweet potato, cooked, then baked w/skin (wt 146g) - 694 mg K, 79 mg PO4

[Rerun]

if you guys want to check the potassium or phosphorus level of any food, including for a specific portion, definitely look here:

http://www.ars.usda.gov/Services/docs.htm?docid=9673

here's some of what it says for potatoes:
potato, baked w/skin (wt 202g) - 1081 mg K, 141 mg PO4
sweet potato, cooked, then baked w/skin (wt 146g) - 694 mg K, 79 mg PO4

If you cut up your potatoes and soak them overnight in water and rinse them off you will leach out some of that potassium.  Not sure how much, but it is better than nothing.

[BigSky]

Check here kitkatz http://ihatedialysis.com/forum/index.php?topic=819.0

How much sweet potato are you referring to BigSky? Its important to include portion sizes.

5 inch long 4 oz sweet potato.

[Black]

Check here kitkatz http://ihatedialysis.com/forum/index.php?topic=819.0

How much sweet potato are you referring to BigSky? Its important to include portion sizes.

5 inch long 4 oz sweet potato.

LOL, I didn't know sweet potatoes came that small - I'd consider that half or quarter of a sweet potato.

[Black]

Black, does your husband still urinate normally? ...

Don't know how I missed this but I did -- better late than never?

Well, he sorta' does.

PKD kidneys frequently process a huge volume of fluid, sometimes even after all filtering function ceases.  He is on bicarbonate of soda 1,000 mg twice daily for two reasons - to combat metabolic acidosis (on your blood work as CO2 level), and because PKD cyst growth and multiplication appears to slow if blood and urine are kept akaline.  The bicarb does make him retain fluid due to the high sodium content.  He therefore has to take lasix twice a day, which increase the fluid output.

PKD kidneys also work better on very dilute urine so he has to force fluids.  He used to be a heavy coffee drinker but now only has one or two small cups of decaf in the morning.  He has learned to instead drink lots of water, and cranberry juice and Sierra Mist Free, over ice.  Even though his GFR is a little less than 11 he still produces 60 to over 80 ounces of urine a day.  When he did the 24 hour urine test the jug was almost to the top.

Other than the large fluid intake he does try to stay on the "Renal Diet", but as everyone knows it is very hard, especially since he stays hungry all of the time.

[BigSky]

LOL, I didn't know sweet potatoes came that small - I'd consider that half or quarter of a sweet potato.

Ya most of the time anymore potatoes and sweetpotatoes tend to be bigger than that.

One should also note that sweet potatoes and yams are not the same thing and should watch out for vitamin A in sweet potatoes.

A 4 oz serving of sweet potato has roughly 2500 micrograms in it.  Intake recommended for a healthy adult is 900 micrograms.

Vitamin A is one of the vitamin that is poorly dialyzed out of dialysis patients and many tend to already have higher levels of vitamin A in their system.

[kitkatz]

OKay, now what is the difference between a sweet potato and a yam? Aren't they the same thing?  I like food, but I guess I am just not a foodie, in that i want to know everything about what I eat.  That is just NOT me.   I like good well prepared food.  However I am not a good cook.

[kitkatz]

Okay here I am again off on another rant.

Dear Dietitian:
     I am 43 years old and have been told by YOU to change my entire way of eating.  Are you not aware that in the United States food is equal to status and or happiness?  I suddenly have foods that are NOT good for me and I should NOT eat.  I get that list, but where is the list of foods I CAN eat?  Where is the listing of fast food places and foods I can enjoy.  Why do we have to make this diet so damned hard? 
    Tell you what I will tell you what is in my cupboards at home, and you tell me what I should get rid of and replace it with.  But do not take away all the fun foods.  Rice cakes and water do not make a happy   dialysis patient.  Help me to help myself.  Do not just shove a booklet of recipes in my face and say "here you go." Six renal recipes does not cut it. Besides you are supposed to be a resource.  I will not follow a diet of protein and carbohydrates in a certain amount all day long.  Help me put REAL food to the counts!
     I realize some people get off on the stickers and smiley faces, but I could care less.  I am 43 years old and do not need incentives.  Is staying alive as long as possible incentive enough for me to take care of myself? If that is NOT enough, then your little sticker or smiley face is not going to do anything for me anyway!   
     When you see me sit down and TALK to me.  I mean really TALK to me. If you see a sudden weight gain or decrease ask me about it.  Get details about my life and how I relate to food.  You can use that to teach me things I am struggling with.  Do not just be a "data giving dietitian". Really struggle to get to know us.  We need you help whether we acknowledge it or not.  You are the expert, become one about your dialysis patients. You can make a difference in our lives.  

Katherine

[BigSky]

There is no list of foods you can eat because there doesn't  need to be one.

You can eat anything you want as long as you first achieve your ideal protein intake in conjunction with not going over your sodium, phosphorus and potassium limits.

[Panda_9]

Not going over your limits means eating like a rabbit in my case when I was on in centre Dx.

[Zach]

Okay here I am again off on another rant.

Dear Dietitian:
     I am 43 years old and have been told by YOU to change my entire way of eating.  Are you not aware that in the United States food is equal to status and or happiness?  I suddenly have foods that are NOT good for me and I should NOT eat.  I get that list, but where is the list of foods I CAN eat?  Where is the listing of fast food places and foods I can enjoy.  Why do we have to make this diet so damned hard? 
    Tell you what I will tell you what is in my cupboards at home, and you tell me what I should get rid of and replace it with.  But do not take away all the fun foods.  Rice cakes and water do not make a happy   dialysis patient.  Help me to help myself.  Do not just shove a booklet of recipes in my face and say "here you go." Six renal recipes does not cut it. Besides you are supposed to be a resource.  I will not follow a diet of protein and carbohydrates in a certain amount all day long.  Help me put REAL food to the counts!
     I realize some people get off on the stickers and smiley faces, but I could care less.  I am 43 years old and do not need incentives.  Is staying alive as long as possible incentive enough for me to take care of myself? If that is NOT enough, then your little sticker or smiley face is not going to do anything for me anyway!   
     When you see me sit down and TALK to me.  I mean really TALK to me. If you see a sudden weight gain or decrease ask me about it.  Get details about my life and how I relate to food.  You can use that to teach me things I am struggling with.  Do not just be a "data giving dietitian". Really struggle to get to know us.  We need you help whether we acknowledge it or not.  You are the expert, become one about your dialysis patients. You can make a difference in our lives.  

Katherine

So true!

But at a patient level, I think BigSky has been able to figure it out.  We each need to have our own "epiphany" when it comes to the diet.

[Bajanne]

Okay here I am again off on another rant.

Dear Dietitian:
     I am 43 years old and have been told by YOU to change my entire way of eating.  Are you not aware that in the United States food is equal to status and or happiness?  I suddenly have foods that are NOT good for me and I should NOT eat.  I get that list, but where is the list of foods I CAN eat?  Where is the listing of fast food places and foods I can enjoy.  Why do we have to make this diet so damned hard? 
    Tell you what I will tell you what is in my cupboards at home, and you tell me what I should get rid of and replace it with.  But do not take away all the fun foods.  Rice cakes and water do not make a happy   dialysis patient.  Help me to help myself.  Do not just shove a booklet of recipes in my face and say "here you go." Six renal recipes does not cut it. Besides you are supposed to be a resource.  I will not follow a diet of protein and carbohydrates in a certain amount all day long.  Help me put REAL food to the counts!
     I realize some people get off on the stickers and smiley faces, but I could care less.  I am 43 years old and do not need incentives.  Is staying alive as long as possible incentive enough for me to take care of myself? If that is NOT enough, then your little sticker or smiley face is not going to do anything for me anyway!   
     When you see me sit down and TALK to me.  I mean really TALK to me. If you see a sudden weight gain or decrease ask me about it.  Get details about my life and how I relate to food.  You can use that to teach me things I am struggling with.  Do not just be a "data giving dietitian". Really struggle to get to know us.  We need you help whether we acknowledge it or not.  You are the expert, become one about your dialysis patients. You can make a difference in our lives.  

Katherine

Couldn't have said it better!!

[Rerun]

Kit, that was great, but.....I don't want to spend "any" more time with my dietition, social worker, doctor, tech, nurse, surgeon, pharmacist, or any other dialysis related person.  I don't want them to become one with me.  NO........

[Zach]

Kit, that was great, but.....I don't want to spend "any" more time with my dietition, social worker, doctor, tech, nurse, surgeon, pharmacist, or any other dialysis related person.  I don't want them to become one with me.  NO........

Now fold your legs together and breath!         

[angieskidney]

I remember when I told my dietitian off. It was Nov of 2005. I ran out of money as I wasn't working since the Peritonitis and was still new to Hemo. My mom brought me over a bag of milk. When you don't have a lot you drink what is given to you. My phosphate was high and the dietitian got on my case. I told her off saying I am poor and I will eat or drink what ever is given to me til I can afford to buy what I need. She got a form filled out so that my disability would cover a bit more for diet. Funny how she has never gotten on my case since then and now for the last 2 months at least and a couple months before, my phosphate has been real good. It seems she can get farther with me but acknowledging that I am human

[Zach]

There's no question that finances come into play when following to renal diet.

[Panda_9]

Over here it is cheaper to follow a renal diet rather than a normal healthy diet. Now Im not on the renal diet we are spending alot more on food. I also eat a hell of alot more now too.