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  1. #1
    decapitated_baby
    Guest

    Smile I have a question

    i am frustrated by the amount of things i have had to give up recently, for over 29 years i have had CRD, 5 months ago they gave me a list of everything i had to give up and i have to say it was hard but i managed it it ranged from things like chocolate, mushrooms, french fries, anything with a high pottassium level or a high salt level, as u can imagine this pretty much left me with almost nothing but bland horrible food to eat, however i managed as i refused to give up red meat. but today i heard that if u itch as constant as i do then it could be sodas that is causing it.

    my question is this, if i give up Sodas what else am i to drink, I dont drink anything other than Diet Coke or Water, I dont like fruit juice or any other form of liquid refreshment.

    Now it is going to be not only bland food but boring water too, what kind of living is this for anyone, ok it might very well save my life i understand that, but at what cost, i have done everything they have asked me to do, giveing up everything they asked me to give up, from as i said french fries to cigarettes to alcohol. I have done everything they want me to do, take all medication they want me to take, why does it have to be so hard>?

    I am on 7 tablets in the morning and 9 at night so every day i take 16 tablets just to stop from dying, i know a lot of you will say im being over dramatic but its not fair, everything on their stupid list i love.but yet i still follow what they tell me and still they dont tell me anything. still i continue to do what im told. WHY?...

    If i refuse the medication I know exactly what will happen, I will be feeling great for about 3 months then my face will swell from the poison and toxans, i will start to hyper ventilate or appear to, where as in fact my body will blackout constantly for 10 mins at a time for about 4 days then my body will shut down completely, if i dont get hospital treatment my bicarb level will drop tremendously ( last time it went to 3) and my pottassium level with reach the sky. my creatine level will hit in the upper 900's..my kidneys will start to fail and i will need emergency dialysis, this may not help. or it might ( it did the last time), my heart will weaken and most likely give out, or i will suffer from extreme brain damage.. I guess you are all wondering why i know so much about this...Well to be honest 2 years ago around this time i started to feel despondant about my CRD the lack of information from my doctors, So i decided to experiment and refused medication the result was i nearly died, wont be playing that game again, but i just wanted to tell you all incase someone out there is feeling the same way, yes it takes its toll the constant doctors visits, the lack of information the lack of understanding HOWEVER if you look hard enough you will find all you need to know, but no matter what DONT stop taking your medication and no matter what age you are some of you will even consider it..It isnt worth the pain and misery it causes. So please dont even consider it for a moment

    Thank You

  2. #2
    Senior Member
    Join Date
    Dec 2004
    Posts
    136
    you don't have to eat bland food you can use spice sand herbs. i have learned to make my food enjoyable. as far as diet coke it is high in propurus which causes the inching when it get to hig in the blood. you can have most soda jst not the cola drinks. you can even have root beer.

  3. #3
    handy capped lady
    Guest

    Wink Sheila Ann Spafford

    Quote Originally Posted by sheila ann spafford
    you don't have to eat bland food you can use spice sand herbs. i have learned to make my food enjoyable. as far as diet coke it is high in propurus which causes the inching when it get to hig in the blood. you can have most soda jst not the cola drinks. you can even have root beer.
    I'm in the same boat as you and feeling the same way. not only that I went up 2 dress sizes in a week (fluids) I look like a puffer fish. The Doctor wants to keep the fluid on he said it is a trade off. weight for better kidney function. this I just don't understand. how do you get answers?

  4. #4
    Senior Member
    Join Date
    May 2005
    Posts
    383

    Bland and deprived

    I guess I approached things differently when it came to what I could and could not eat. I was able to find a list that explained WHAT I could have instead of what I couldn't have. Amazingly, that approach made a big difference and feeling deprived wasn't an issue. As some of you are, I am a big soda drinker and continued to drink them but in moderation. I was faithful in taking my binders and that helped. As far as bland food that simply doesn't need to be. There is a site that you can download a cookbook from that is excellent and you also found a site that sent me a free cookbook. There are many ways around bland and a good cookbook will show you the way. Deprivation isn't necessary and good food isn't a thing of the past. I confess I didn't follow the dietary guidelines faithfully, though not suggested. I did experiment with various foods so as to not deprive myself of things I liked. I would try something, wait for labs and then try something else. Mrs. Dash really doesn't take the place of salt for us diehards but it can add an exciting new flavor. In order to maintain a healthful diet you must experiment and like the 'weight-watchers' diet deprivation is not the key. I'm sure I can run down the "what is allowed" list and also the cookbook site if anyone is interested.

    Linda - transplant 7/28/05 and still watching what I eat!
    "Within every adversity lies a slumbering possibility"
    Linda
    Tx: 7/28/2005
    St. Louis University Hospital

  5. #5
    Amby
    Guest
    The dark cola is what you Can't drink. It's due to the Carmel coloring, Carmel is very high in phosphorous. You really shouldn't drink milk either.
    you can drink sprite, you can have root beer (which I don't understand cuz it's dark, something about the carmel?)
    No chocolate (high in phosphorous) The list goes on.

    If the doc is worried about the phosphouros you need to be on phosphate tablets. You will take x amount with each meal/snack.

    I'm also on a low sodium, low phosphorous, low potassium diet. But my food isn't bland. Just buy things labeled low sodium/sodium free, don't add salt while cooking or at the table. I never like salt anyway.
    I found a very good chicken boullon that is sodium free. Boullon usually is HIGH is sodium, but this is a powder and sodium free. There is a beef that is reduced sodium also.
    Just depends on how creative you wanna be.

  6. #6
    Senior Member
    Join Date
    Jun 2004
    Posts
    155
    Quote Originally Posted by Amby
    The dark cola is what you Can't drink. It's due to the Carmel coloring, Carmel is very high in phosphorous. You really shouldn't drink milk either.
    you can drink sprite, you can have root beer (which I don't understand cuz it's dark, something about the carmel?)
    No chocolate (high in phosphorous) The list goes on.

    If the doc is worried about the phosphouros you need to be on phosphate tablets. You will take x amount with each meal/snack.

    I'm also on a low sodium, low phosphorous, low potassium diet. But my food isn't bland. Just buy things labeled low sodium/sodium free, don't add salt while cooking or at the table. I never like salt anyway.
    I found a very good chicken boullon that is sodium free. Boullon usually is HIGH is sodium, but this is a powder and sodium free. There is a beef that is reduced sodium also.
    Just depends on how creative you wanna be.
    All good advice. The best way to know what you can and cannot drink as far as sodas go is ask your dietician. The dark sodas are definately a big no-no but there are other soda choices that can be used. MOST root beers, clear sodas and ginger ales is a viable alternative to quinch one thirst for sodas. Not all sodas are alike, even root beers and clear sodas. Some companies still add chemicals such as potassium and phosperous to them. Koolade brand is a no-no but not all koolade TYPE drinks have the same chemical additives. Jello brand is a no-no but not all jello TYPE gelatines have the same chemicals. Ask your dietician for a list of chemical additives that may be found in sodas and other products that are bad for you. If you notice one of those in the list on the outside of the can/bottle then dont drink it. Mountain-Dew is a clear soda BUT has orange juice as one of its ingredients. Everyone on dialysis knows orange juice and oranges are high in potassium. Just an example of reading the label even when all else appears ok.

  7. #7
    Junior Member
    Join Date
    Feb 2006
    Posts
    8

    list of what I can have to eat

    Quote Originally Posted by LindaE
    I guess I approached things differently when it came to what I could and could not eat. I was able to find a list that explained WHAT I could have instead of what I couldn't have. Amazingly, that approach made a big difference and feeling deprived wasn't an issue. As some of you are, I am a big soda drinker and continued to drink them but in moderation. I was faithful in taking my binders and that helped. As far as bland food that simply doesn't need to be. There is a site that you can download a cookbook from that is excellent and you also found a site that sent me a free cookbook. There are many ways around bland and a good cookbook will show you the way. Deprivation isn't necessary and good food isn't a thing of the past. I confess I didn't follow the dietary guidelines faithfully, though not suggested. I did experiment with various foods so as to not deprive myself of things I liked. I would try something, wait for labs and then try something else. Mrs. Dash really doesn't take the place of salt for us diehards but it can add an exciting new flavor. In order to maintain a healthful diet you must experiment and like the 'weight-watchers' diet deprivation is not the key. I'm sure I can run down the "what is allowed" list and also the cookbook site if anyone is interested.

    Linda - transplant 7/28/05 and still watching what I eat!
    Hi Linda, I would love to know where I can find a list of foods that I CAN have to eat and a good cookbook.

    Right now I am trying to watch my diet with a list of some foods from my doctor but the list just tells the sodium, potassium, and phosphorus content of a few foods and the daily milligrams I am allowed. Any help would be greatly appreciated.

    Also, I have an appointment with my nephrologist on Tuesday to discuss dialysis but I have many questions and my thoughts are that it must be a lot better to try to have a transplant before you even have to start dialysis. Do most people have to have several years of dialysis before a transplant? What if I have a family member who is a match? wouldnt it be better to have the transplant before having to start dialysis?

    Searching for answers, I guess.

    Glenda

  8. #8
    CajunSue
    Guest

    Smile

    Quote Originally Posted by LindaE
    I guess I approached things differently when it came to what I could and could not eat. I was able to find a list that explained WHAT I could have instead of what I couldn't have. Amazingly, that approach made a big difference and feeling deprived wasn't an issue. As some of you are, I am a big soda drinker and continued to drink them but in moderation. I was faithful in taking my binders and that helped. As far as bland food that simply doesn't need to be. There is a site that you can download a cookbook from that is excellent and you also found a site that sent me a free cookbook. There are many ways around bland and a good cookbook will show you the way. Deprivation isn't necessary and good food isn't a thing of the past. I confess I didn't follow the dietary guidelines faithfully, though not suggested. I did experiment with various foods so as to not deprive myself of things I liked. I would try something, wait for labs and then try something else. Mrs. Dash really doesn't take the place of salt for us diehards but it can add an exciting new flavor. In order to maintain a healthful diet you must experiment and like the 'weight-watchers' diet deprivation is not the key. I'm sure I can run down the "what is allowed" list and also the cookbook site if anyone is interested.

    Linda - transplant 7/28/05 and still watching what I eat!
    I would also like to have this cookbook. I also have bottles and bottles of meds to take a day and would never think of stopping them unless the doctor thinks I need to be off of one.It is trying for all of us to learn a new way to eat and drink when we were use to doing it different all of our life, yep I sure miss my diet pepsi but have learned to drink clear flavored waters, WalMarts has a good one with different flavors, no sodium, no sugar, and no caffeine and 0 juice. They come in 1 litter bottles so I keep one to drink out of all day, I know I have done my limit plus the coffee I have in the morning when I am through with the bottle. I love Mrs. Dash Garlic and herbs, I am cajun and yes I miss the salt alots but Mrs. Dash makes my food taste so much better.

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