I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Diet and Recipes => Topic started by: tweetykiss on May 27, 2007, 01:12:22 PM
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The nephrologist told my husband to avoid all red meat and just eat poultry and fish....the hospital dietician told us to avoid salt and sodium and I am surprised she never said potassium and phosphate......now I learn that from this site.....no one ever mentioned that starfriut has fatal effects until reading this board and I never even knew what it is.....
Now she did tell us to watch the protein but I am not sure how to measure protein,,,,,,,if my husband eats chicken drumsticks, he likes two of them and I think he should only have one but he complains of a lot of hunger....same thing when I only want to give him one third of a chicken breast....then with the fish, he wants to eat the whole piece of fish and he should only eat a third of it but he gives me a hard time and this is frustrating me since all he mentions is hunger.......
They also didn't tell us the limit on fluid intake other than to not to drink caffeine.........his creatinine is now at 2.8 by the way.....
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I was told to reduce my daily meat intake to 5 oz or less. Mostly chicken and fish but beef is OK sometimes. Get boneless chicken at the grocery store because it is easier to measure. Hope this helps.
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every one is different. i eat 6 to 9 protines a day do just fine. a protine is 1 egg, 1 oz of meat, chicken or fish or 1 oz of cheese (which i don't eat) i also eat lot's of fruit and vegetables. i don't eat much dairy. that has to do with calcium and para thyroid levels. use your lab results as a guide. use the dietition as well as the doctor as a guide, they aren't perfect. the diet isn't about denial, but moderation based on you individually. this is a very good web site to check food content. http://www.nutritiondata.com. starfruit is the only thing you should never eat.
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Protein level is determined by whether one is predialysis or if they are on dialysis.
Predialysis protein is usually very limited.
Once on dialysis it is recommended to have 1.2 grams of protein per kilo of dry weight and that albumin be 4.0 or higher and at least 3.7 at minimum. If below 3.7 they recommend to eat protein on the level of 1.5 grams per kilo dry weight.
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If he's pre-dialysis, the low protein will help his kidneys function longer. If they haven't mentioned phosphates and potassium, it may be because he's still got enough kidney function that they aren't a problem for him yet. I would ask what his labs are, though, and keep an eye on them. I had problems with phosphate build-up quite a while before I needed dialysis.
And how lovely of the nutritionist to simply eliminate red meat! I'm not reccomending he eat it on a daily basis, but an occasional burger or slice of meat loaf won't hurt him.
If he's hungry all the time, you need to start giving him more high fiber foods to help fill him up. Taking away the protein is no reason to let him be hungry all the time!
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Thanks everyone for helping me.....also what do you think of this website?
http://uuhsc.utah.edu/pated/handouts/handout.cfm?id=858
JBeany, You have been a lot of help and I honestly appreciate it.......just this morning when he came home from church he said he was weak and I was ready to take him to ER but he wouldn't go saying that I just don't feed him enough so he went to the store to get celery, carrots and ears of corn.......he wanted another fish (3 oz) so I gave that to him for lunch and then he had those carrots and celery and an ear of corn and now he feels better.....he said he just was not eating enough which I can see since he always was a big eater and I had cut his food consumption by at least a half only because I have to save his health.......I know you understand that part of it.......but he had a point too so I am now just going to limit his fish and chicken and give him a lot of veggies.....fresh veggies......he is not diabetic thank goodness.....so if a burger and slice of beef won't hurt him on occasion, I will let him have it......
I really don't mind learning how to cook again and even if it means making each and everything from scratch, I just want to give him what helps him.....now someone told me he can have rice and pasta but what do I put in there?
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what about breads? Sucks to be hungry and you do not want to give him starvation portions either-if he is hungry there has to be somethings that he can eat- the body needs fuel too. What about angel food cake, or maybe a vanilla cake? You can cook using non-dairy creamer instead of milk- i make pudding with it. My husband loves rice crispy treats and vanilla wafers too. cinnabunns too. I do not know if weight is an issue for him or cholesterol-
is he limiting fluids? If not then what about extra portion of pasta or rice? I hate to hear of someone being miserably hungry.
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what about breads? Sucks to be hungry and you do not want to give him starvation portions either-if he is hungry there has to be somethings that he can eat- the body needs fuel too. What about angel food cake, or maybe a vanilla cake? You can cook using non-dairy creamer instead of milk- i make pudding with it. My husband loves rice crispy treats and vanilla wafers too. cinnabunns too. I do not know if weight is an issue for him or cholesterol-
is he limiting fluids? If not then what about extra portion of pasta or rice? I hate to hear of someone being miserably hungry.
I agree with you.....he needs fuel and cannot afford to feel weak....this restricted diet thing just started three weeks ago when his creatinines were going up into the 3s....now it is at 3.7 so I want to be super careful and at the same time not let him starve.....he is not on dialysis and we are trying to keep him off that....
Now to answer your other questions, he is slightly overweight but he wants to lose around 15 pounds.....the doctors never told us about his cholesterol so I have to assume that is not an issue now and his systolic blood pressure is now at 112. I will start getting copies of his bloodwork like someone suggested....
Those cakes, do I need to make them out of scratch? I will give him the non-dairy creamer since you said that is fine....the dietician said breads are fine as long as no salty top to it....never knew there were breads like that.........
I am also wondering if ice-cream and chocolate donuts are safe.....
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I buy deli items my husband has no kidneys so he is more restricted with chocolate- but he eats donuts and all kinds of sweets. adding a loaf of really good bread to dinner with no salt butter is a favorite-I know he can't over eat- but he can certainly eat enough.
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I buy deli items my husband has no kidneys so he is more restricted with chocolate- but he eats donuts and all kinds of sweets. adding a loaf of really good bread to dinner with no salt butter is a favorite-I know he can't over eat- but he can certainly eat enough.
I am sorry your husband has no kidneys...no one deserves to have to be put in that position....can you please give me the link to your story?
My husband eats bread and the no salt butter......
Now, does your husband not able to have a hearty appetite because of no kidneys? Forgive me for all the questions but I want to give others including you all the support here and I also want to learn as well.......
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my husbands story it kind of fragmented over this board lol- I should write it up in a whole place.....long story short- lost a kidney in 1982 to bike wreck- had a front end loader fall on him in Jan 06- broke collarbones,shoulder and ribs in 12 places- had a catscan that found RCC. Last Kidney removed April 14,06. On dialysis hemo since then. He had no symptoms- getting squished was a blessing- it was found early enough they believe he is cured.
but you asked about his appetite- the first year my husband was gravely sick-puking and losing weight-in and out of the hospital for infections and high BP, it was a very long very bad year- but this January he seemed to turn a corner-
he has had to learn to eat slowly so he does not get sick, and he eats about half what he used to, because his stomach shrunk last year-BUT
he has regained most of his weight- he works out every day-he stays outside a lot (we live in Florida) so he can work on our property to rebuild his body and so he can sweat. Luckily he is a profuse sweater- and it has allowed him to increase his fluids by 200% (yes thats right) and he is never over 3 kilos- even on weekends.
he has to eat 94 grams of protein a day, which he does 3 out of 4 days- and he is as compliant as possible. His labs are perfect. (Took a year) they just decreased his dialysis time from 4 hour to 3.5 because his URR? is 78%- (might not be URR- but something I cant remember is 78%)
he is wanting to go back to work around Christmas this year, and I think he is actually more fit then he was before. But remember my husband was not sick before dialysis. and maybe thats why he is coping so well now....he certainly suffered the first year.
you can ask anything you want- this website IHD actually taught me 1000% more about his labs and diet then the dietician or the Neph-
even though my husband has no kidneys he is doing very well, his cholesterol is 166, his heart is that of an 18 year old- his BP is around 135/85, (with meds)
I saw in another thread where you mentioned the dr and nurses and techs do not want you to get too much off the internet- I personally think they just want to keep patients ignorant because they are easier to 'handle' you could also check out the National Kidney websites
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I am sorry about the motorcycle accident.....was he bleeding internally and is that why they took the kidney out? Sorry but what is RCC? Is that why the other kidney was removed?
I am sorry about last year......I am so glad he survived all those infections as I am learning that infections are very bad for dials patients.....
I understand that his diet is different from my husband's since someone here told me that the pre-dials patients and dials patients have different diets....
That is interesting that medical pros find the "ignorant" patients easier to work with......his doctor keeps telling me to stay away from the Internet...
Another problem we are having is that my husband had to have an aorta surgery back in 02 because of a car accident and now they want to do a bronchoscopy since for a few weeks up until a month ago he was spitting up blood so the lung doctor wants to rule out anything with the lungs and aorta......he thinks if there is any bleeding in the lungs, then it could cause kidney problems....those doctors there want to rule things out and that is why I like them but I also like to read on the Internet......
I also have learned many things here...you guys have helped me keep my sanity....if not for you guys I would be in the looney bin......
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I also have learned many things here...you guys have helped me keep my sanity....if not for you guys I would be in the looney bin......
Huh? Hey, i thought this was the looney bin :urcrazy; ;)
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Regarding Poultry - My husband Rob's renal dietician told him that Perdue is the best chicken to eat. They pump the least amount of phospherus in their chicken. We only eat that kind anyway, but it was interesting to hear!
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RCC is renal cell carcinoma- kidney cancer...and the bike wreck in 1982 the handlebar crushed his kidney-
Its nice to trust your Dr and nurses- but after all the times I have caught mistakes in the last year- I verify everything they tell me --recently I was arguing with his dietitian -she said daily phosphorus was 4000 mg for a normal adult- I disproved that with the internet in about 5 min (its 1000mg) then printed out 5 different sources and took them to her- she apologized. Your Dr is being an ass- he should be advocating education not scaring you off the net.
Zach gave us this website to check nutrition content its excellent
http://www.nal.usda.gov/fnic/foodcomp/search/
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That made me laugh goofynina.......I may be the only one who is a looney here.......
Thanks Skye for your tips......I will get perdue and I only learned of the phosphates and potassuim issues on the Internet...the doctors and the dietician didn't even tell us to watch them but when I asked the GP, he said my husband's phospates are fine so he does not need binders......
Glitter, thanks for explaining what RCC is, now if my husband had that, would it show up on the kidney biopsy?
That is horrible that the handlebar crushed his kidney, I am glad he made it through that surgery....it is so unfortunate that here he had only one kidney to survive on and that one gets cancer.....I cannot understand why the people with just one kidney (born with only one or had to have one of the two removed) have to deal with having the one and only kidney failing.....not fair at all.....
What sort of machine is he on? PD or hemo and home or center?
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I would imagine a biopsy would show RCC. My husband is on In-center Hemo three days a week-
And as for it being fair- life ain't fair, BUT everytime I think we have it bad- I always think of all the people who have to struggle even harder thewn we do.
My daughter has a friend who lives in a family of five- of the five only one has no severe medical issues- the other four all have some kind of severe condition- iI just think of them when I get discouraged-because they never seem to let it get them down.
;)
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That made me laugh goofynina.......I may be the only one who is a looney here.......
I don't think soooo!! :urcrazy; :yahoo;
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Oh, no - plenty of us loonies around here!
tweety, anytime a doctor or medical staff memeber starts using "absolutes", it's time to wake up and be on your guard. They have a bad habit of lumping things into one-size-fits-all boxes, and anyone who has ever tried on one size fits all clothes knows that just never works for everyone. Any sentence that starts with "All ESRD patients. . . ", "All information on the web. . .", or "All foods in this food group. . ." is generally going to include a certain amount of BS!
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Looney, did someone say looney around here? Count me in.
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The nephrologist said yesterday there is a lot of controversy on the protein issue for KD patients and he told me to not to be overly restrictive but don't overdo it....in other words no seconds on fish and chicken for that night......now in this package of skinless boneless chicken breasts, it said 1.38 pounds so I thought it safe he have a whole chicken breast which is a third of that package......no seconds were given.......
Yes, Jbeany, we cannot go by one size fits all....they have to consider each individual case and then give advice........this mistake is not only made in the medical field but also in the education field since I once was a teacher and yes I got fired for standing up for my students........also these types of mistakes are made in the counseling field.....I use to see it constantly....it is never one size fits all and you worded it great........
Now what I will do with his diet is to make sure he does have chicken or fish each night.....(my father said don't repeat chicken two nights in a row, alternate the chicken and fish like your mother does...screw him...another story that I won't go there)....I know he means well though......I boil veggies for him and give him good helpings of those and now I will add pasta or rise since he should not go hungry.....I need to find a source of fiber too.......
Goofynina and Kitkatz, according to some of my past friends I am not only looney but eccentric as well lol........they still love me though......I may have got these traits from my dear late grandmother since she was eccentric......
Glitter, you are right, life just is not fair........but we all have God.........
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Be careful. Chicken is higher in phosphorous than beef. I do not know if you are watching out for this yet.
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Be careful. Chicken is higher in phosphorous than beef. I do not know if you are watching out for this yet.
They told us that is fine....is that the one that needs binders if you get too much and what is the harm to the kidneys?
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Isn't beef higher in potasium than chicken?
...bd
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Now are pre-dialysis patients allowed to cheat just one night in so many days....he had chicken fajitas last night with the rice and beans and tortillas however his doctor and nurse keep saying that his K levels are fine so they are not worried about K levels at this point. I am right now concerned about his creatinine and I hope the test this Monday the levels don't go up because of the dinner at a Mexican restaurant.........
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Binders are taken for phospherus, Rob takes Renegel. Perdue has the least amount of phospherus in their chicken, so that is what we use.
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Tweety, I live alone so i don't stick to a diet. I know i should. I eat one big meal a day. I try and not cheat but it is hard to do. I know when they take blood for my levels so the week before i am very careful of what i eat.
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Tweety, I live alone so i don't stick to a diet. I know i should. I eat one big meal a day. I try and not cheat but it is hard to do. I know when they take blood for my levels so the week before i am very careful of what i eat.
what is the purpose of that? If you do not just continue what you always do- your labs will not be a correct representitive of what you actually are doing, then when you have a problem with something you will think 'but my labs are okay' when in fact they wouldn't be if you didnt try to skew the results. I insist on no changes in diet lab week for my husband, I want to know we are doing this right every week not just one a month.
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One thing I don't understand is why his creatinie keeps rising while I have him on this restricted diet......
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One thing I don't understand is why his creatinie keeps rising while I have him on this restricted diet......
creatinine is a chemical waste molecule that is generated from muscle metabolism. it is eliminated from the body by the kidneys. the lower the percentage of kidney function the higher the creatinine level.
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One size does not fit all. Agree.
As for diet, can you imagine if the one cook for you have no clue what renal diet suppose to be like. You just eat whatever she cooks for you.
The lab will be so crew up. If someone has a partner to cook and care for them, they should really appreciate and thank them. I do not have one so sometimes I tend to go wild on my diet. I guess sometimes I use food as a way to lessen my pain about my current condition or situation.
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tweety, the restricted diet is only going to slow down the kidney failure, not stop it. The creatinine will continue to go up regardless of what is eaten. It's the speed you're trying to affect.
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Very valid point Jbeany and a good one too :)