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Old 03-06-2008, 07:35 PM   #71
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Originally Posted by DawnT View Post
Now that I've had a chance to really look over the sites, I really feel like s***. Jim has been eating ww bread everyday, steamed vegies, everything wrong. What have I done to his kidneys!?
Sweetie, you didn't do this, his illness did it...Now, you start over and do what needs to be done. You can do this..I'll help all I can so will Bilby, she is way ahead of me in this game...Tell me what they want him to eat and how it is to be prepared. Maybe we can work on that with you. Just relax, re-think and then we do...The main thing, get that protein in there.
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Old 03-06-2008, 07:52 PM   #72
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Kades, Thats just it. They have only told us 50-60 grams of protein, only 2000mg of potassium. We were never told not to have ww bread, not to steam the vegies,arrrggggg!!! I feel so rotten right now. :( The dietician told me he could have rice crispy treats, so I made them. Now I am not sure if I should let him have them or not! And of course, I don't know how much either.
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Old 03-06-2008, 08:58 PM   #73
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Kades, Thats just it. They have only told us 50-60 grams of protein, only 2000mg of potassium. We were never told not to have ww bread, not to steam the vegies,arrrggggg!!! I feel so rotten right now. :( The dietician told me he could have rice crispy treats, so I made them. Now I am not sure if I should let him have them or not! And of course, I don't know how much either.
Dawn,
how did they want you to cook the darn veggies? Raw is not gonna get it with most veggies..I'd let him have some of the treats, just monitor the amount...Put some in the freezer that way hard as a rock is not so appetizing Give him some bread, find out what type they think is best. I feel calories are not as important as the correct amounts of protein and such..But the no steaming, the only thing I can think of is maybe they feel steaming pulls off to much of the nutrients.I'm looking in the cookbook they gave me..If you want I can PM you some recipes..These are for a renal diet..I've not made them as They pretty much let me pick and choose for my self as I've been doing this for many years now because of the diabetes...
Just let me know, I have a nice carrot recipe, meat balls, breads..
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Old 03-07-2008, 04:16 AM   #74
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Dawn!!!!!!! You are going to be told oodles of conflicting information - one medical person will tell you full cream milk only, another hilo or skim only, or boil all the nutrients out of the vegetables, another, don't do that but just have a smaller serve! It is never ending. You won't work out what works for Jim until he is having very regular blood tests and you not only get to see them but get to understand what they mean. As an example, EVERYBODY told me not to drink milk, but my body craved milk so I had it - every day and nothing happened other than I was happy. Everyone is different and all the medical people talk about is in the average, not specifically. The bread and the veges are doing nothing to the kidneys or negligible anyway (unless Jim is part rabbit I guess). Potassium is bad for a renal patient's heart. And all of these things are much worse once the kidneys have completely packed up. Jim's hasn't. He can still process some of these things from his body without intervention.

Every new patient (and their supports) go through what you are dealing with now. Every one of us. It is all new and we all go looking for advice from the professionals but pretty much they all talk in lists and absolutes. After a while, you will realise that you find what works for the patient. You know how Kadesma and I talk about "moderation"? Well, that's cos that's how it's done away from the medicos. It is all a balancing act. You want Y, well don't have Z, or cut down on it. At dialysis, we were provided with sandwiches that we could preorder BUT they would only let us have three fillings and only one of those could be a protein. That meant no ham and cheese toasted sandwiches and the like and how basic is that!! But most of us ate more complex sandwiches etc away from the centre. Cos real life has to sneak it's head in every so often.

And I will tell you now, I never ever boiled my veges. I steamed, I stirfried and I roasted or I had a salad but I just didn't have huge amounts of them. What's the point of eating them if all the goodness has gone from them? I also chose veges/salad/fruit that I liked and completely avoided those that I wasn't overly keen on or actively disliked. (What's the point on wasting your allowance on something that doesn't appeal??) If I liked it, I had it, just not a lot of it if it was on the banned list.

My doctor used to say that patients are generally good with their blood results or good with their fluid levels, seldom both. I was good with my bloods. Sucked badly with the fluids!! LOL

Now - sit down with a book or a (happy/funny) movie and you and Jim have a glass of wine or similar, and just take a break from thinking about it all. You will make mistakes and you will never know all you need to know. Facts. Plain and simple. Worrying about it all will not help either of you and will just make everything much worse - well at least in your mind. Please take a mental break for just a day. You have got this for a long time to come. Don't use up all your reserves before they are truly needed.

Now, think soothing thoughts......... ;-)
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Old 03-07-2008, 05:58 AM   #75
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Thank you Bilby. I think whats getting to me the most is the potassium thing. What happens if it does not come up to the count, what if it's over by a couple of hundred mg, questions that of course don't come up during the time the dietician is available!! That and I can't find peanut butter on the listing for potassium!! Stupid, stupid list.
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Old 03-07-2008, 06:11 AM   #76
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Okay potassium - you have a range that he needs to be in. Too much or too little is bad for the heart. Too much and they dialyse you or give you insulin, something orally and something up the other end too. (Had that twice!! Fun stuff!!) Too little and they put you on a potassium drip or put it in the dialysis fluids. Had that a couple of times too. Vomitting and the runs will change the potassium amount in the body and you can dip below the recommended levels. Thing here is Jim can still expel potassium naturally so provided he isn't exposed to high/low levels for extended times, you just correct as you go. But for the most part you won't know unless the blood tests tell you or something goes wrong (which at this stage is highly unlikely). The day before Jim has a blood test make sure he doesn't eat something that is going to throw the tests out, like I often had a hankering for seafood or Chinese the day before my tests and if I gave into it, I would cop a lecture from the nurses! But that was it. Dialysis took care of the rest.

If Jim eats a mango one day, well make sure he has a lower potassium intake for the next day or two. Work on an average over those days BUT that is not to say he can have a HUGE amount of potassium on one day and next to none the next. A little bit up and a little bit down though is fine.

Some of these recommended levels will change once they really start monitoring his bloods. His body will make a few determinations of its own and then they may say he needs more of this or less of that.

I'll see what I can find out about peanut butter but otherwise, send an email to the manufacturers and just ask them. If you explain your situation they should be helpful. If not, change brands!!
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Old 03-07-2008, 06:22 AM   #77
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Dawn, according to Food Data Chart - Potassium, 100g of peanut butter provides 700mg of potassium and 330mg of phosphorus. An average serve is 20g (about a metric tablespoon) (well I think that is on a bit thick personally) so an average serve equates to 140mg of potassium and 66mg of phosphorus. It doesn't say if it is light, crunchy or whatever so I assume there is little variance in the different varieties although brands may differ. So not a daily food perhaps BUT this depends on his overall diet. Start a food and drink diary and go from there. Makes it easier to balance the scales - which is what you are trying to do remember. Not banning foods.
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Old 03-07-2008, 06:29 AM   #78
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Thank you. That is just it, we have just started this and the testing for potassium isn't until May. Jim has not been screened for potassium levels before this and all of a sudden we are told to monitor and keep it at 2000mg/day, have a good day. No information, nothing. That is why I am so thankful to you, kades and Fisher'sMom. At least with you guys to help steer me in the right direction, I may be able to keep my sanity somewhat in tact, figure things out and keep Jim's kidneys going as long as possible. I will call the company that make the peanut butter and see what they say. Thanks again. :) Dawn
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Old 03-07-2008, 06:34 AM   #79
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We must have been typeing at the same time. Thank you for the info!! Dawn :)
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Old 03-07-2008, 06:36 AM   #80
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Dawn, visit your GP and ask him for a Full Blood Count (or at least for the items that concern you most) so that you can get a level and know how you are doing. Your family doctor should be a lot more accessible than the specialists and he/she is meant to help you both mentally and physically. Not sure what testing they are going to do in May. We just had monthly (or more often) blood tests to monitor. They would take our blood at the beginning of dialysis and part way through the session of four hours, if anyone had an abnormal reading, the pathology dept would phone through before the end of the session.
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