I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Lillupie on August 15, 2011, 09:41:36 PM
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:rant;
hi,
What is wrong with me that i just cant get used to being on dialysis and being ok with it??? ITs been 4 years, and I feel like Im still haivng a hard time with it. I am just so sick and tired of doing it day after day. It feel worse now then when I first started. It just feels that this lifestlye is impossible for me to do. Iam so tired of being so poor a nd not being able to afford anything. Im tried of the diet.
Here is the newest struggles. The diet. OK, I was told to avoid the phos. foods. Now, Im told to avoid anything that is prepackaged. Are you kidding me??? Most food takes alot of time to make from scratch. The newest thing is stay away from kool-aid. Are you kidding me??? Im not a diabetic, if its not dark, I dont see a problem. Oh and anything that comes out of a can. Are you kidding me?? Ok, I get the no Coke, Dr. Pepper, or Pepsi. But you mean to tell me that no Sprite from a can?? Oh and the newest thing is Apple Pie, the flour has phos.
So, now I starve myself. Im sick of the lack of food allowance. I dont always have the energy to sit there and cook all day from scratch.
Like lunch I gave up on ever eating lunch. Before I say it, I hate tuna fish. No way I could eat it on a daily basis. Im used to eating lunch meat. My dietiction (sp?) said it was ok to eat delli meats, they have less phosphates. But guess what they cost more then the other lunch meats!
Im so sick of these nurses and dietections telling us what to eat and what not to eat when they are the ones making the $20-$40 and hour, while I make a whoop $600 a month. THey are not the ones buying my food.
Here is the worse part that I feel like crap. Is the lack of working, and no money. Im sorry I know of people on here who do work, not personally, there are some that do, I DONT KNOW HOW TO DO BOTH WORK AND DIALYSIS. I dread going on the machine because I rarely ever go to sleep right away. I can survive on 6 hours a sleep, while I am stuck on the cycler for 8.5 hours or so.
I feel like im constantly at the doctors, and at home waiting for Baxter to come with supplies. I also have to do a dialysis once during the day. Im so tired of not being able to afford anything and not having any money. Not working Im not getting ahead with my bills. My student loans with Sallie Mae, the intrest rate keep racking up, and now I dont think im ever going to be able to afford it. My doctor doesnt think Im sick enough to want to sign that I cant work to get out of my loans. But every year Im not working the payment goes up an extra $100 a month. So say I graduated on dialysis in 2008, my payments 6 months after graduation would of been $230, manageable. Now I looked and they are up to $530. No way in hell am I ever going to be able to pay that!
I feel obligated as much as I hate to to drive my mom to and from where she needs to go, because well, Rerun once said "she does pay the bills".
So here is my day. So I shoot out of bed by my mom waking me up because she cant be late for work. FLy off of the machine, drive the 45 to an hour (barely awake mind you) min to Detroit, turn around and drive another alomst hour to get home to crash. Crash at home (almost immedately), wake up almost noon, either wait for supplies, have somewhere to go, figure out what to make for dinner, shower, or do a dialysis manually. And before I know it it is already about 3:45, time to leave and pick up my mom, and I dont get home until 5:30-6, that is if I dont have to take Miss Daisy shopping. And by the time I get home it is about an hour or so of cooking and eating.
THis day to day routine is even more busier when I have my 5 year old daughter. Then I have to make sure she is ready for bed, bathed, and fed, and we go places to keep her entertained. So in this process, i hate to admit it though, it has been a good few years since I kept up with my daily logs. ( never had to take my mom to work until we moved). I just forget about them. I dont really have time in the morning, and Im too tired when I get home, so I just end up forgetting about them. I take my weight, and pb, not never keep track of it. I hate to admit it, but I just do not have the time. WHen I tried, I usually end up losing the logs somewhere in the house, or in my room. Or I had nothing to write with. THe pen got lost somehow. Now I get a call reminding me to bring in the logs and the prescrptions. Well Im only on 3 prescriptions, but the logs....I dont have them. Havent had them in a long time. So, I expect to get yelled at. I hate to be honest and say this is the reason that I forget about it, and I feel like I Have too much on my plate now. Its not like I wake up and lounge around. I have to drive someone to work without crashing my car, and get up when I am not ready to get up. I hate to admit this, but if i had to, I would make up all the logs. I understand the importance of them, but it is out of sight and out of mind.
No way in hell am I going to go on hemo. If I think my life is hectic now, it will be worse on hemo. I have been on hemo for 3 months. I had a lot of car problems (another reason why im sick of being on dialysis. I want to work full time to be able to make car payments on a nicer car), one day I felt fine, the next day I was craappy for the rest of the day because of dialysis. Cant eat most food. only few foods I like on PD and it will be a lot worse on hemo with more food restrictions.
Going to a center is an issue for me, not counting I utterly refuse to get a fistula. No offense to those who have one, but they are ugly. I hate needles. I cant even deal with a little butterfuly needle.
Im tired of not being able to afford anyything. I would work. I suspose working would be easier if my mom retired. But she has told me if i work she would quit her job because then she couldnt get home from work. SHe makes decent money, so I cant let her quit so that I can make $8.00 an hour. But then if she retired then she will only make 1/3 of what she makes now and for sure we wont be able to afford the raw meat and all the ingredients it takes to make a meal for everyday of the month.
Not only I have dialysis center to go to, but stupid Baxter, then other doctor appointments. I have therapy once a week. I just cant see going to a job and saying "I need this day off and this day off" Its not like I go to the dialysis once every few months. I go a lot less often then hemo, but a lot more then the average person my age.
Im tired of being so poor. I wold like to say "by such and such time I will be able to afford this or that", but on SSI that is NEVER the case. I cant get a better car. Ihave had 4 cars in 5 years because they just simply do not last., my bills dont seem to go down any. I cant even afford to buy my daughter a bike she likes. My mom has hte money but refused because my daughter, Alex goes from us to her dads every two weeks. My mom says if Alex stayed with us all the time and never going over there then she would get Alex a bike.
Recently, I lost a friend I have had for 20 years over money.. We both decided to take our kids to the Toledo zoo on Thursday. Well it is an hours drive from her house. Now this girl has two kids. Both boys (not that it matters) a 3 y ear old and a 1 year old. She lives with her husband who works 80 hours a week, both her parents who bring in money. Her kids are so spoiled that for the one year old, she spent nearly $400 on his birthday party! THey have tvs in the car, she has a new Dodge Durango, 50" tv, so many toys you cant walk anywhere, a $500 swing set, a trampoline, a year pass to two water parks, while they have a slip and slide and a little pool in the backyard. Not to mention a year pass to the Detroit zoo that will get her 50% off admission to the other zoos. So, she had the nerve to ask me for gas money and to help pay for parking! I dont have extra help! She was going to the same place! If i were working and had more money coming in,t hen maybe. Ugh! No. I never had anyone ask me for money. and here is the kicker. She knows my situation. and she was like "my hubby works to keep up with everything", and she sees it as she was saving me money from wear and tear on my car and my gas.
Im due to get married in June. I should be happy but Im not because I feel so guilty. My fiance is going to have to pay for some of my debt, getme a car or something when he shouldnt have to. He is going to be paying for all of the wedding himself because i cant help. I cant even buy my own wedding dress. I feel so horrible about it.
I just cant take it anymore,
Lisa
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"Overwhelmed" doesn't even begin to describe your situation, does it. :cuddle;
You are not obligated to ever being "OK" with dialysis. There is nothing wrong with you. Being sick and still having to be a parent and a dutiful daughter and not being able to work to support yourself in some modicum of comfort is a crappy way to live life. I don't know if anyone would ever be "OK" with that.
There is such a thing as being too rigid with the diet. My own nurtritionist told me to lighten up! The real trick to the diet is portion control. Oh, and label reading. Most grocery stores have a section with fresh foods already made; maybe you could find the phos content of some of those. Like one of those rotisserie chickens...do they have a lot of phos? I really don't know. Does your mom ever cook? It's generally true that dark colas are too high in phos, but to be told that you can't drink anything from a can is just not true. But yes, the trouble with fresh prepared food is the cost. You will always pay more for anything you don't have to cook yourself.
It's not fair of your doc to get to decide whether or not you are too sick or not to work. He's not living in your skin. He's not being particularly helpful.
And your ex-friend is thankfully your EX-friend. What is wrong with people? It seems like recently all of the greedy people are coming out of the woodwork like zombies. I am appalled that she could not be more generous.
I'm so sorry that all of this is piling up on you.
Will being married lessen your burden in any way? I can understand you feeling guilty about unloading all of this onto your new husband; is he fully aware of what he's getting himself into? If he is, and he still wants to marry you because he loves you and wants to be with you, accept his help and repay him by being the best wife a man could ever want. I doubt he cares about paying for the wedding; surely he just wants to be your husband. As long as he understands that you come with some baggage (and don't we all????), then let him make his own decision; he's an adult and can decide what he wants or what he doesn't want. But yeah...will being married to him make your life easier and happier? If it will, then cast aside any guilt and let him help you.
:cuddle; I feel tired just reading your post. I can't imagine what it must be like to live your life. I wish I could take away a big part of your burden. If you could name one thing that would help you the most, what would that be? Is there ONE thing that you can reasonably work toward that would make your life easier? Out of all of the things that you've written about, is there ONE problem that might be solvable?
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Lisa you have a LOT to deal with. Tell me again why your mom just can't take the car once in a while? Let you sleep?
I'm sorry about your selfish friend. Wouldn't it be nice to be her........ no worries?
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I am totally with you on the dietary restrictions. My neph told me to limit my sodium to 1500mg a day, and my K to 1500mg a day. Well, I work FT and do in-center HD 3 times a week. How am I supposed to accomplish this, when Lean Cuisine is relatively low enough and makes a great quick work lunch or after-D dinner? (I get home after 9pm usually, then need to get to bed so I can be at work at 7am the next day. Do you really think I want to make a home made meal?) I cannot limit my sodium like that. If I don't eat enough in a day, I start to lose weight. I don't want to lose weight. I enjoy eating. I will avoid the high sodium foods, of course, but there is no way I can limit myself to a mere 1500mg a day, especially with my busy lifestyle. NOT gonna happen!
Oh, and Sprite in cans? Yes indeed! Knock yourself out and enjoy! (or - haha - have it in a bottle!)
KarenInWA
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"Overwhelmed" doesn't even begin to describe your situation, does it. :cuddle;
You are not obligated to ever being "OK" with dialysis. There is nothing wrong with you. Being sick and still having to be a parent and a dutiful daughter and not being able to work to support yourself in some modicum of comfort is a crappy way to live life. I don't know if anyone would ever be "OK" with that.
There is such a thing as being too rigid with the diet. My own nurtritionist told me to lighten up! The real trick to the diet is portion control. Oh, and label reading. Most grocery stores have a section with fresh foods already made; maybe you could find the phos content of some of those. Like one of those rotisserie chickens...do they have a lot of phos? I really don't know. Does your mom ever cook? It's generally true that dark colas are too high in phos, but to be told that you can't drink anything from a can is just not true. But yes, the trouble with fresh prepared food is the cost. You will always pay more for anything you don't have to cook yourself.
It's not fair of your doc to get to decide whether or not you are too sick or not to work. He's not living in your skin. He's not being particularly helpful.
And your ex-friend is thankfully your EX-friend. What is wrong with people? It seems like recently all of the greedy people are coming out of the woodwork like zombies. I am appalled that she could not be more generous.
I'm so sorry that all of this is piling up on you.
Will being married lessen your burden in any way? I can understand you feeling guilty about unloading all of this onto your new husband; is he fully aware of what he's getting himself into? If he is, and he still wants to marry you because he loves you and wants to be with you, accept his help and repay him by being the best wife a man could ever want. I doubt he cares about paying for the wedding; surely he just wants to be your husband. As long as he understands that you come with some baggage (and don't we all????), then let him make his own decision; he's an adult and can decide what he wants or what he doesn't want. But yeah...will being married to him make your life easier and happier? If it will, then cast aside any guilt and let him help you.
:cuddle; I feel tired just reading your post. I can't imagine what it must be like to live your life. I wish I could take away a big part of your burden. If you could name one thing that would help you the most, what would that be? Is there ONE thing that you can reasonably work toward that would make your life easier? Out of all of the things that you've written about, is there ONE problem that might be solvable?
Aww thank you so much moosemom :thx; :grouphug; I have no idea. Me getting a job, which i dont know how to do and do all this, my mom driving, which ishe utterly refuses to do or me getting a transplant, which i guess that is not going to happen any time soon.
It sucks about my friend. I mean they have health problems too. She weighs alomst 300lbs at 5'2". Her husband is diabetic with high blood pressure and still works 80 hours a week. But still it is not like i asked her to pick me up or to pay my way into the zoo. I had to pay full admission and sitll drive to her house. ANd if she were that poor her bratty kids would not have half the stuff they have.
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She does not drive and refuses to try.
yes it would be nice to be my friend and not have to worry about fiances.
Lisa you have a LOT to deal with. Tell me again why your mom just can't take the car once in a while? Let you sleep?
I'm sorry about your selfish friend. Wouldn't it be nice to be her........ no worries?
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I kn ow what you mean, and I dont know how you do it. The sodium is hard plus with the added limitatioins of the phos and for you the potassium.
Oh and another thing i was told that we should not drink anything out of a plastic bottle, just glass. THe plastic bottle has phos. You mean to tell me that one bottle is going to knock out labs off?? Everywhere you buy something plastic bottle drinks are cheaper then the glass. I know it should not be that big of an issue, but it is when you are only making a whooping $600 a month, and they are making, what?, $20-$40 an hour. I know being a nurse or dietection gets more then mim wage.
Lisa
I am totally with you on the dietary restrictions. My neph told me to limit my sodium to 1500mg a day, and my K to 1500mg a day. Well, I work FT and do in-center HD 3 times a week. How am I supposed to accomplish this, when Lean Cuisine is relatively low enough and makes a great quick work lunch or after-D dinner? (I get home after 9pm usually, then need to get to bed so I can be at work at 7am the next day. Do you really think I want to make a home made meal?) I cannot limit my sodium like that. If I don't eat enough in a day, I start to lose weight. I don't want to lose weight. I enjoy eating. I will avoid the high sodium foods, of course, but there is no way I can limit myself to a mere 1500mg a day, especially with my busy lifestyle. NOT gonna happen!
Oh, and Sprite in cans? Yes indeed! Knock yourself out and enjoy! (or - haha - have it in a bottle!)
KarenInWA
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Lisa :
Being on PD twice, I know how you feel about diet restrictions. I also understand about making meals from 'cans/boxes' vs. from scratch.
Doing manual PD is time consuming, I wound up cooking dinners from processed foods alot. I found that doing the prep work from scratch was time consuming, but throw in manual PD and you won't have any free time at all. Being on the cycler helped free up some time to make meals from scratch.
as for pd diet, it sucks, i won't sugar coat it. my dietician kept telling to make fresh food, cut down on processed stuff (lots of salt/potassium), and keep fluid intakes to a minimal. I'll admit I never really listened, i'd sneak in a big mac once in a while just to treat myself and worry about the consequences later.
as for the baxter delivery, maybe ask your hpr about a lock box. I got one from baxter, so each delivery i would leave a house key in the lock box, attach the lock box to the back door handle, and the delivery guy would just let himself in, drop off my supplies, lock the door and leave. that way you won't have to stay home for the delivery (only issue is trust, do you trust the baxter delivery guy in your house unsupervised).
whether you're on pd or hemo, dialysis just plain sucks. both methods of dialysis has their strengths and weaknesses, but both are time consuming (factor in setup of machine, undergoing treatment, then strip down of the machine after).
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I have personally decided that the entire mindset of the renal dietitian needs to change entirely. They seem to be so focused on a culture of "NO". They are armed with lists and lists of what we cannot/should not have but never with what we should do. Then they say "eat less processed food" but don't give us any REAL WORLD steps we can take to do this. I'm with everyone else - I work a 40 hour a week job, with commute time and lunch that turns into 52 hours per week. Add in 12 hours a week at dialysis, taking care of a household and God forbid, some time for fun and that doesn't leave a hell of a lot of time to spend in the kitchen.
I think I may have found a step in the right direction. When I was fishing around this site for ideas on how to lower my phos, I came across a book entitled "Dialysis Dining on the Go". It has easy to understand information about Red Light, Yellow Light and Green Light foods for many dining out situations and ideas for general cuisines (Chinese, Italian etc) I am REALLY looking forward to receiving this book. Here is ordering information for anyone who may be interested:
Thanks so much for your interest in Dialysis Dining on the GO! I would be happy to assist you with ordering information. We accept check payment only and total cost, including shipping would be $12.95. Check payment can be made payable to Dialysis Dining on the Go % Allyson Almeida, 1130 Riggs Ct, Washington, PA 15301. Once check payment is received, a book will be mailed to you.
Let me know if you have any additional questions.
Warmest Regards,
Allyson Almeida, RD, LDN
Renal Dietitian
Dialysis Dining on the Go!
I will be happy to post a review of this book when I receive it.
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There are also a couple of podcasts on www.rsnhope.org that feature interviews with renal dieticians that you might find helpful. For instance, instead of getting a cheeseburger with everything, ask for a plain burger with all condiments on the side. That way you control how much you use (and how much sodium you get).
The problem with processed foods is all of the additives, but more and more people are not wanting all of these additives, so it is becoming easier to find processed foods without them. For instance, my local grocery store stocks bacon and sausages that are uncured, so NO PHOSPHATES!
Maybe you could sit down with your renal dietician and tell her exactly what you have told us. Her job isn't just to tell you what you have to restrict. Her job is to help you incorporate your renal diet into your particular lifestyle. Tell her that you don't have time for making every meal from scratch, and ask her to give you a list of acceptable easy-made meals. Ask her point blank to tell you what you CAN eat considering your time and budgetary constraints. I guarantee you that you are not the only PD patient on planet Earth who has little time and/or money, so she should get off her butt and work WITH you to find practical options. You shouldn't have to do her job for her.
As for the plastic vs glass, well, there is some truth to that, but that's good advice for everyone, not just renal patients. But maybe you can find yourself some glass jugs and decant whatever is in plastic jugs into the glass ones (like juice, obviously not carbonated drinks).
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I agree wholeheartedly about the additives. In fact, here's a perfect example. This weekend, I heard about a new 40-30-30 snack bar called "nimble". I thought hmmm....maybe this might be another idea to try at dialysis instead of the current protein bars that I'm bringing. I got the nutrition information and found that one of these little bars has 35% of daily phosphorus. Of course, the phosphorus came from added phosphates. I posted a message on the company's Facebook page stating that I would have loved to have tried these bars, but as a renal patient, I cannot do so because of the added phosphates. I asked what the phosphates were added for and if there could be a reformulation without phosphates that would make these acceptable to the large renal population.
Of course, my realistic side thinks they will probably not do a damn thing about my post ::), but I figured I it was the least I could do to maybe educate someone about the unnecessary need for added phosphates. ;D
The problem with processed foods is all of the additives, but more and more people are not wanting all of these additives, so it is becoming easier to find processed foods without them. For instance, my local grocery store stocks bacon and sausages that are uncured, so NO PHOSPHATES!
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Lisa :
I'll admit I never really listened, i'd sneak in a big mac once in a while just to treat myself and worry about the consequences later.
The kicker to this is. THey are ok with Big Macs! Would you believe it. Especially without cheese! She told me those really arent bad! So, pretty much anything that is healthy for you is bad, but fastfood is ok. :urcrazy;
Its like they would rather me have a Big Mac and fries then a ham sandwich because the ham is processed! and dont get me started on Peaunut Butter and Jelly because I think Peanut Butter and Jelly (once in awhile) is way healthier then a Big Mac.
EDITED: Fixed quote tag error - jbeany, Moderator
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I feel for you…..I’ve been there. PD and dialysis in general is not easy. Please don’t take offense but you sound really codependent. I am not by any means a therapist but I am codependent. And I try to keep it in check every day. Nothing is going to change concerning your relationship with your mother unless you change the way you react to your mother.
“She does not drive and refuses to try.” Why is this situation your problem? Why should she learn to drive? Because she has you to drive her around like her own personal taxi. What if she didn’t have you to drive her around? She would quit her job?? Oh well….then mom is going to be without a paycheck. You’re going to go live with your new husband and take care of each other. Mom is going to be on her own. Is she going to yell and scream at you and try to make you feel guilty? Oh well…let her kick and scream like a 5 year old…..so what? Eventually she will have to learn to find her own way to work. Eventually she will have to learn to survive on her own without her personnel taxi driver. You have to stand up for yourself and stand firm!!!!!
Ask yourself a few questions.
Do you have a hard time saying no to others, even when you are very busy, financially broke, or completely exhausted?
Are you always sacrificing your own needs for everyone else?
Do you feel more worthy as a human being because you have taken on a helping role?
Did you grow up in a family that had a lot of emotional chaos or addiction problems?
As you were growing up, did you think it was up to you to keep the family functioning?
Codependency doesn’t mean you’re a bad person or anything like that. It shows that most of your energy is spend on other people and very little of your energy is spent on yourself. Unload the mom and unload the stress that comes with her.
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:grouphug;
My question for you is about the diet mess. What are your lab results? Because really, I ate what I wanted, as long as the bad stuff was in small amounts and my dietitian didn't have a word to say. As long as the lab results are good, what difference should it make?
And what's up with the can nonsense? I have NEVER heard or read anything about not having stuff packaged in plastic for a renal diet. That just sounds like total nit-picky nonsense. If I were you, I'd learn to start nodding politely and ignoring the dietitian when she gets off on crazy, impractical tangents. Advice on how and when to adjust binder dosages is useful. Expecting you not to buy anything packaged in plastic is insane.
My guess about your ex-friend and the "works to keep up with everything" comment---- she's crazy about the money because she's so over-extended on credit cards and car payments that she's completely cash poor but charging crap she doesn't need to feel like she's keeping up with everyone else!
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My guess about your ex-friend and the "works to keep up with everything" comment---- she's crazy about the money because she's so over-extended on credit cards and car payments that she's completely cash poor but charging crap she doesn't need to feel like she's keeping up with everyone else!
I was thinking exactly the same thing, jbeany. She sounds like a compulsive spender to me, probably because her life feels empty somewhere else. Spending all of that money on a baby who could not care less is none too bright. I bet they have credit card bills to turn your hair grey.
Perhaps somewhere in the universe there is a person with kids, a full-time job, a perfect diet, loads of exercise, and somehow they manage to seamlessly work dialysis in without missing a beat. Those of us here on Planet Earth know that there is a breaking point where something has got to give. I like BrightSky's advice. How did your mother cope before you could drive? How is she planning on coping when you get married? I have lived in Detroit so I know that is one town that is purposefully built to force residents into car ownership, but people do manage with public transport, even there.
Are you on disability? Are you willing to take a job from home as a call center rep? I received a message about this just last week, you would make a small enough amount to keep your disability, but perhaps it would be an important first step to building the life that YOU want for YOURSELF. ((((Lisa))))
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There is noithing wrong with you at all. I feel like you do most of the time. Believe me when I tell you that you have a lot of company and we know exactly what you are experiencing. If you get a chance, read my post in general discussions titled "just one day".You will appreciate it.
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I am so sorry Lillupie, I thought you were still in Germany enjoying yourself,
and I did not know the stress you are under.
I do hope this stress does not cause you further Lupus-flare-ups
and I send you my best wishes, Kristina. :grouphug;
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I've been thinking about this mess all day, Lillupie, and while I know you were upset when you wrote your post, it's the only thing I have to go by; it seems like your clinic isn't really helping you. The whole diet thing illustrates this. Lots of members here write that you need to dialyze to live, not live to dialyze, but it seems to me that some clinics are more helpful than others in this regard. It's one thing to give you all of these restrictions you have to incorporate into your life, but it's another thing for them to help you LIVE with these restrictions, and that's where your clinic seems to be letting you down.
I'd really like to see you sit down with your social worker AND your dietician and tell them that you need help on how to better incorporate dialysis into your life. Do they have any idea what your usual day is like? Maybe you should tell them, and maybe they should start thinking about what you CAN do and not just about what you SHOULDn't do. I'd be really interested in the book that cattlekid is getting.
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i was told that we should not drink anything out of a plastic bottle, just glass. THe plastic bottle has phos.
Who told you this??? :thumbdown;
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Lisa, I'm just addressing the food issue here at the moment and here is a link with some lists and some ideas concerning the renal diet...there are many such resources out there BUT I have the sense that the far bigger issue is just how overwhelmed and behind the 8 ball you're feeling.
http://kidney.niddk.nih.gov/kudiseases/pubs/NutritionLateCKD/
When I was on D I definitely did not have all the stresses that you do and so I hope that any suggestions I make don't sound like I didn't "hear" your struggle. I did and it really sounds like you're in a catch 22 situation in many ways, one that I hope you can see forward to getting out of...like when you get married. As far as food goes, I do think that it is super important to eat as well as one can in terms of the diet and that does mean as fresh as possible, low sodium, potassium, phosphorus, never miss binders etc. However, in order to do this, I had to simplify things as much as possible so that they weren't impossible....I had lists of the foods I liked that were OK, veggies, fruits etc and I'd only buy things on that list and I made sure that my protein was of high quality....egg whites were a staple, so was chicken. A pre-cooked chicken is a great idea, as long as the skin goes cuz that's loaded with salt. Cream cheese is good and so is parmesan for flavour. I used fresh herbs that I grew for flavour. I did cook from scratch but easy prep. Stir fries are easy (I use Hoisin sauce in small quantities for flavour...less sodium than soya sauce) and I used to keep the stuff I could eat already chopped in bags in the fridge so I could put it together in a hurry. I'd buy chicken and cube it and freeze it so that was ready for last minute. I'd cook up a couple of cups at a time of white rice and keep that in the fridge so it could be microwaved to heat it up or sometimes made into fried rice with acceptable veggies and little meat. Egg goes into the rice once it's heated through since it separates the grains (rice must be good and cold to start with for fried rice). I used to make bigger batches of things too and freeze them or keep in the fridge so cooking isn't an every day thing. Zach's chili is a good example. Pasta with a cream cheese sauce, flavoured with herbs, Mrs Dash and some parmesan was a dinner staple for me too. I love food and I generally like to cook but on D I had not enough energy to really be bothered so I focused on the health aspect and limited variety to what was easy but still OK to taste too. Any one else in my house, like my husband, had to more or less fend for themselves.
The reason I think this is SO important is that without good nutrition, dialysis is even harder on the body and dammit things are tough enough. Was the dietician talking about canned goods??? I know that things like canned iced tea or lemonade can contain stuff we don't want and too much reliance on canned things can add a lot of sodium and phosphorus.
I hope this doesn't sound like I think it's easy...I don't...I know it's not but I do think that you will maybe feel a bit better if you can get ahead of at least the food part.
One other thing...oh crap, I should have known I couldn't just stick to one thing...please try to do your logs more regularly, I know I know....sounds like I didn't hear how tight time is...BUT if you want PD to keep working as well and efficiently as possible then this becomes a priority.
I'm hoping things get better for you Lisa. :grouphug;
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I had lists of the foods I liked that were OK, veggies, fruits etc and I'd only buy things on that list and I made sure that my protein was of high quality....egg whites were a staple, so was chicken.
Lisa, I've got a list the dietician gave me when I was in-center, a list of foods you CAN have. What I did with it was run off copies and use it as my shopping list. If you'd like a copy I can send it to you.
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i was told that we should not drink anything out of a plastic bottle, just glass. THe plastic bottle has phos.
Who told you this??? :thumbdown;
Okay, with a little digging, and lot of wishing I'd actually been good at chemistry - I came up with this.
Phos is used to make plasticizers.
Plasticizers are used to make hard plastics flexible.
From Wikipedia:
Plasticizers for plastics are additives, most commonly phthalates, that give hard plastics like PVC the desired flexibility and durability. They are often based on esters of polycarboxylic acids with linear or branched aliphatic alcohols of moderate chain length. Plasticizers work by embedding themselves between the chains of polymers, spacing them apart (increasing the "free volume"), and thus significantly lowering the glass transition temperature for the plastic and making it softer. For plastics such as PVC, the more plasticizer added, the lower its cold flex temperature will be. This means that it will be more flexible, though its strength and hardness will decrease as a result of it. Some plasticizers evaporate and tend to concentrate in an enclosed space; the "new car smell" is caused mostly by plasticizers evaporating from the car interior.
So, yes, in theory, a plastic bottle might add more phos to a liquid than a glass bottle. But telling a D patient not to buy food in plastic bottles because of it is total BS! If the tiny amount that might leach out is making a difference in the D patient's diet, it's time for another freakin' binder.
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Lisa, I have a book called "living well on Dialysis: a cookbook for patients and thier families". I can send you copies of it if you like. Look, I agree with MM, it is not so much what you eat, but your portions! Yes there are a few things, salt and Hi phosporus foods, but it doesnt mean you can't have them, it just means don't cover your food in salt and to eat very little of the high phosphorus foods.
Seriously, J. eats about anything he wants, he just doesnt eat the same things everyday and he has a reasonable portion size! He never was a soda drinker, but really more a milk drinker. Now he hardly has milk anymore, he has water and that is it!
I just hate that you have to go through all this, I really do! You and only you can change the situation you are in. Its hard for you, I know! Dont give up Lisa! You are a beautiful young girl and we love you for who you are! Just hang in there and think about your life with your fiance! He loves you and your daughter and I truly believe, it will get better for you both.
Just keep on keeping on, as best you can girl! You have come along way, Lisa! And quite frankly, I am proud of you! You have not only cared for yourself, but seeing to the needs of others! You shouldnt have to do that, but you do!
lmunchkin :kickstart;
P.S. THERE IS NOTHING WRONG WITH YOU, my friend!
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Pasta with a cream cheese sauce, flavoured with herbs, Mrs Dash and some parmesan was a dinner staple for me too.
Do you have a recipe for a cream cheese sauce that doesn't call for a lot of butter and milk? I've tried looking online for a pasta cream cheese sauce, but they all have so much more dairy. Could you tell me more about this dish? My husband loves pasta and so do I, but he likes his tomato sauces and me, not so much. Thanks!
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i was told that we should not drink anything out of a plastic bottle, just glass. THe plastic bottle has phos.
Who told you this??? :thumbdown;
Maybe you misheard/misunderstood, or your dietician misunderstood or didn't convey this correctly. I've heard this advice with respect to bottled iced tea and certain other drinks. It's more a rule of thumb than anything to do with the bottle itself. Cheap iced tea in plastic bottles, like Nestea and Brisk, made with tea extract and concentrates and things like that, tend to have added phosphates (quite a lot). The better, brewed iced tea like Lipton PureLeaf tends to come in glass bottles.
You can probably also rely on the ingredient list for things like that.
Lemon Brisk:
WATER, HIGH FRUCTOSE CORN SYRUP, CITRIC ACID, INSTANT TEA, SODIUM HEXAMETAPHOSPHATE (TO PROTECT FLAVOR), NATURAL FLAVORS, PHOSPHORIC ACID, SODIUM BENZOATE AND POTASSIUM SORBATE (PRESERVE FRESHNESS), CARAMEL COLOR, CALCIUM DISODIUM EDTA (TO PROTECT FLAVOR), RED 40
Lipton PureLeaf - Lemon:
BREWED TEA FROM LIPTON TEA LEAVES, SUGAR, CITRIC ACID (PROVIDES TARTNESS), NATURAL APPLE EXTRACT (COLOR), NATURAL FLAVOR, PECTIN
It might also apply to fruit juices/punches (see Hawaiian Punch).
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Pasta with a cream cheese sauce, flavoured with herbs, Mrs Dash and some parmesan was a dinner staple for me too.
Do you have a recipe for a cream cheese sauce that doesn't call for a lot of butter and milk? I've tried looking online for a pasta cream cheese sauce, but they all have so much more dairy. Could you tell me more about this dish? My husband loves pasta and so do I, but he likes his tomato sauces and me, not so much. Thanks!
MM, I just made up my own by using ingredients I could eat...so, I'd take a portion of cooked pasta...not someting like penne that needs a load of sauce to cover everywhere then I'd take a skillet, add some olive oil plus a bit of butter, throw in some minced garlic and diced onion, perhaps some green onion as well and get them softened on not too high a heat so the garlic doesn't burn (a tiny amount of diced pancetta could go here too but it is salty so I usually skip it) Then toss in the pasta and get everything heated through. Remove from stove and then add the allotted cream cheese that has been creamed up with herbs (basil, parsley, chives,) or even some pesto for ease. Herbed Boursin cheese could also be used sparingly for good flavour but again watch the salt. Toss everything together then add fresh ground black pepper and a controlled amount of parmesan. Toss again and eat. This is not a very wet sauce obviously so if you want you could add a little bit of milk but I try not to dilute the flavours too much. Crostini made from stale baguette is good here too. Mix olive oil with crushed garlic, let sit for an hour or longer (I often have this around for cooking because I like garlic)...brush onto stale white baguette sliced half an inch thick and then dry out in a 300 degree oven for 15 minutes or so. Can be kept in a tin for a week or so.
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my :twocents;
The only difference between you and I is....................
I do not have any children
I make $50 more a month
I have NO FAMILY at all
I have only been doing this for about one year (one year will be 9-23-11)
My boyfriend who I only have been with for about 8 months pays for everything and takes pretty good care of me ;)
I have $60K in Sally Mae loans (all for a degree so I could have a career which I managed to have for all of 2 years before Kidney failure took that away from me)
I do not even know what to say to you to make you feel any better, because I feel the same exact way and I am (as I am sure you are too) so tired of people with all their working organs telling me to stay positive!!!
:grouphug;
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Yea Lisa, my organs work fine, so stay "NEGATIVE". But as far as my husband, I do try to keep him upbeat and positive even though he has his moments too! He knows I do it out of love, just as many others who have functioning organs try to do! Sometimes we just don't know what to say to those who suffer this disease and yes somethings we may say sounds "stupid", but it is said with good intentions.
T. Barrett, some of us who do caregiving to our loved ones do our best and bend over backwards for those with chronic illnesses! We may not have what you have, but we do know about all the affects this has had on most of you, so please don't take a comment of "staying Positive" the wrong way! When I say it, I truly want to help pull these people out of their deep depression! Some have actually tried to commit suicide. I firmly believe that my husband would, If I were not here to keep him up!
I know alot of you are not crazy about what we say, but please, give us the benefit of the doubt! We are here for all of you! This is not easy for any of us, with CKF or the caregivers.
lmunchkin :kickstart;
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as for pd diet, it sucks, i won't sugar coat it. my dietician kept telling to make fresh food, cut down on processed stuff (lots of salt/potassium), and keep fluid intakes to a minimal. I'll admit I never really listened, i'd sneak in a big mac once in a while just to treat myself and worry about the consequences later.
as for the baxter delivery, maybe ask your hpr about a lock box. I got one from baxter, so each delivery i would leave a house key in the lock box, attach the lock box to the back door handle, and the delivery guy would just let himself in, drop off my supplies, lock the door and leave. that way you won't have to stay home for the delivery (only issue is trust, do you trust the baxter delivery guy in your house unsupervised).
whether you're on pd or hemo, dialysis just plain sucks. both methods of dialysis has their strengths and weaknesses, but both are time consuming (factor in setup of machine, undergoing treatment, then strip down of the machine after).
Yes this does suck...but on that note I was always told to eat potassium (I guess a major perk for PD dialysis).
As for the Baxter guys I am not totally sure I can trust them because everytime I have a delivery there is a different delivery guy there.
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I have personally decided that the entire mindset of the renal dietitian needs to change entirely. They seem to be so focused on a culture of "NO". They are armed with lists and lists of what we cannot/should not have but never with what we should do. Then they say "eat less processed food" but don't give us any REAL WORLD steps we can take to do this. I'm with everyone else - I work a 40 hour a week job, with commute time and lunch that turns into 52 hours per week. Add in 12 hours a week at dialysis, taking care of a household and God forbid, some time for fun and that doesn't leave a hell of a lot of time to spend in the kitchen.
I think I may have found a step in the right direction. When I was fishing around this site for ideas on how to lower my phos, I came across a book entitled "Dialysis Dining on the Go". It has easy to understand information about Red Light, Yellow Light and Green Light foods for many dining out situations and ideas for general cuisines (Chinese, Italian etc) I am REALLY looking forward to receiving this book. Here is ordering information for anyone who may be interested:
Thanks so much for your interest in Dialysis Dining on the GO! I would be happy to assist you with ordering information. We accept check payment only and total cost, including shipping would be $12.95. Check payment can be made payable to Dialysis Dining on the Go % Allyson Almeida, 1130 Riggs Ct, Washington, PA 15301. Once check payment is received, a book will be mailed to you.
Let me know if you have any additional questions.
Warmest Regards,
Allyson Almeida, RD, LDN
Renal Dietitian
Dialysis Dining on the Go!
I will be happy to post a review of this book when I receive it.
Yes please let us know how you liked this book.
My question to you is "HOW DO YOU WORK 40 hRS a week and still do dialysis?? How do you feel?"
Lisa
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There are also a couple of podcasts on www.rsnhope.org that feature interviews with renal dieticians that you might find helpful. For instance, instead of getting a cheeseburger with everything, ask for a plain burger with all condiments on the side. That way you control how much you use (and how much sodium you get).
The problem with processed foods is all of the additives, but more and more people are not wanting all of these additives, so it is becoming easier to find processed foods without them. For instance, my local grocery store stocks bacon and sausages that are uncured, so NO PHOSPHATES!
Maybe you could sit down with your renal dietician and tell her exactly what you have told us. Her job isn't just to tell you what you have to restrict. Her job is to help you incorporate your renal diet into your particular lifestyle. Tell her that you don't have time for making every meal from scratch, and ask her to give you a list of acceptable easy-made meals. Ask her point blank to tell you what you CAN eat considering your time and budgetary constraints. I guarantee you that you are not the only PD patient on planet Earth who has little time and/or money, so she should get off her butt and work WITH you to find practical options. You shouldn't have to do her job for her.
As for the plastic vs glass, well, there is some truth to that, but that's good advice for everyone, not just renal patients. But maybe you can find yourself some glass jugs and decant whatever is in plastic jugs into the glass ones (like juice, obviously not carbonated drinks).
Thank you for all of your response Moosemom,
I have been getting hamburgers, but after the last few years, im soo sick of them. ITs just that its really hard to not eat anything that is pre-packaged because nearly every single thing in the grocery store is pre-packaged. If I avoid anything that is pre=packaged then I just wont eat. lol, i Know im emblishing. But it does seem to be true....Soooo much is pre-packaged. Do you mean pour what comes in a plastic bottle into a glass jug?
THanks,
Lisa
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:grouphug;
My question for you is about the diet mess. What are your lab results? Because really, I ate what I wanted, as long as the bad stuff was in small amounts and my dietitian didn't have a word to say. As long as the lab results are good, what difference should it make?
And what's up with the can nonsense? I
:grouphug; :grouphug;
My labs are usually pretty good, except for last month when I came back from Germany. lol. The phos is usually in the 4s. and my pb is usually pretty normal. But that doesnt stop the dietiection from nagging and it seems like she puts me in the same group as people with really high bp, and high phos.
Yeah i think the can thing is going over the line. She said something about having Arizona Sweet Tea (which isnt a Cola dark), as having too much phos because of the can!!
Lisa
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Perhaps somewhere in the universe there is a person with kids, a full-time job, a perfect diet, loads of exercise, and somehow they manage to seamlessly work dialysis in without missing a beat. Those of us here on Planet Earth know that there is a breaking point where something has got to give. I like BrightSky's advice. How did your mother cope before you could drive? How is she planning on coping when you get married? I have lived in Detroit so I know that is one town that is purposefully built to force residents into car ownership, but people do manage with public transport, even there.
Are you on disability? Are you willing to take a job from home as a call center rep? I received a message about this just last week, you would make a small enough amount to keep your disability, but perhaps it would be an important first step to building the life that YOU want for YOURSELF. ((((Lisa))))
Well before our house in Detroit got broke into, we lived in Detroit. Before I drove she was able to take the bus to and from work. At some point they cut back the buses and got rid of a few routes. When this happened, it just so happened that I was driving, and she then insisted on that I drive her home from work (which at the time is only 7 miles away). Until January, she took a cab usually (depending on the weather) to work. Starting in January, she got too scared to walk to the bus stop, so she started waking me up to drive her to work.
When I get married, she is hoping to have retried by then, when wont be until June 23, 2012 is my wedding date.
Yes I am on disability. THat is how I get the whopping $600 a month. I would not mind being able to work from home. I just really do not have any clue on how to go about doing that.
Thank you for those suggestiongs,
Lisa
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I am so sorry Lillupie, I thought you were still in Germany enjoying yourself,
and I did not know the stress you are under.
I do hope this stress does not cause you further Lupus-flare-ups
and I send you my best wishes, Kristina. :grouphug;
Aw thank you Kristina :grouphug;
No I left Germany and my now fiance July 3. I was glad not to be under the stress while I was gone.
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i was told that we should not drink anything out of a plastic bottle, just glass. THe plastic bottle has phos.
Who told you this??? :thumbdown;
The unit renal dietction (sp?). She apparently dont like cans either. She had said something about an Arizona Iced Tea to avoid drinks from a can because of the phos and she says the same about plastic bottles. Im thinking "are you serious? is there really that much phos in a can or plastic bottle v. glass?" I do know that glass is more expensive. I know by a few cents, but still. I just personally think that is going a little overboard. Then again, what do I know.
Lisa
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http://kidney.niddk.nih.gov/kudiseases/pubs/NutritionLateCKD/
Pasta with a cream cheese sauce, flavoured with herbs, Mrs Dash and some parmesan was a dinner staple for me too.
Thank you for the link. How do you do a cream sauce with the pasta? Did you mix it with anything else? To get it creamier.
Was the dietician talking about canned goods??? I know that things like canned iced tea or lemonade can contain stuff we don't want and too much reliance on canned things can add a lot of sodium and phosphorus.
I hope this doesn't sound like I think it's easy...I don't...I know it's not but I do think that you will maybe feel a bit better if you can get ahead of at least the food part.
I dont usually drink too much tea, if any out of a can. But pop I do. She hasnt said too much about pop per se. But she perfers that we make tea homemade, which I do not think I have the time to do. YOu know with tea bags.
One other thing...oh crap, I should have known I couldn't just stick to one thing...please try to do your logs more regularly, I know I know....sounds like I didn't hear how tight time is...BUT if you want PD to keep working as well and efficiently as possible then this becomes a priority.
I'm hoping things get better for you Lisa. :grouphug;
Yea those logs are a major problem. After the last few years, now they are starting to ask for them. I just have kept forgetting about them. Kind of like outta sight, outta mind.
Lisa
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I had lists of the foods I liked that were OK, veggies, fruits etc and I'd only buy things on that list and I made sure that my protein was of high quality....egg whites were a staple, so was chicken.
Lisa, I've got a list the dietician gave me when I was in-center, a list of foods you CAN have. What I did with it was run off copies and use it as my shopping list. If you'd like a copy I can send it to you.
is this for hemo or Pd? You can send it to me.
LisaMarieB1982@gmail.com If you get the chance.
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i was told that we should not drink anything out of a plastic bottle, just glass. THe plastic bottle has phos.
Who told you this??? :thumbdown;
Maybe you misheard/misunderstood, or your dietician misunderstood or didn't convey this correctly. I've heard this advice with respect to bottled iced tea and certain other drinks. It's more a rule of thumb than anything to do with the bottle itself. Cheap iced tea in plastic bottles, like Nestea and Brisk, made with tea extract and concentrates and things like that, tend to have added phosphates (quite a lot). The better, brewed iced tea like Lipton PureLeaf tends to come in glass bottles.
You can probably also rely on the ingredient list for things like that.
Lemon Brisk:
WATER, HIGH FRUCTOSE CORN SYRUP, CITRIC ACID, INSTANT TEA, SODIUM HEXAMETAPHOSPHATE (TO PROTECT FLAVOR), NATURAL FLAVORS, PHOSPHORIC ACID, SODIUM BENZOATE AND POTASSIUM SORBATE (PRESERVE FRESHNESS), CARAMEL COLOR, CALCIUM DISODIUM EDTA (TO PROTECT FLAVOR), RED 40
Lipton PureLeaf - Lemon:
BREWED TEA FROM LIPTON TEA LEAVES, SUGAR, CITRIC ACID (PROVIDES TARTNESS), NATURAL APPLE EXTRACT (COLOR), NATURAL FLAVOR, PECTIN
It might also apply to fruit juices/punches (see Hawaiian Punch).
Now that you have explained it this way, It makes a little bit more sense now.
Yeah I knew about the fruit punch all along. I stay away from that as well as the Pepsi and colas.
Lisa
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Hello Lisa,
I actually feel much better now that I am on dialysis than I did late last year/early this year right before I started. I try to keep my fluid gains down (e.g., today I came in only .9 over dry weight) so they don't have to take off too much fluid at each treatment. I go to dialysis on third shift, keep up with work email and projects until about 5:30 PM then rest for the remainder of the time. I usually feel fine after treatment, drive myself home, have dinner and then rest for the remainder of the evening. Sometimes, if they take off 2 kilos or less, I don't even have to rest afterwards and then I'll go out and run errands with my husband.
I feel that I am very fortunate in that I have a relatively sedentary job - I joke with my husband that my entire job consists of sending emails and sitting in on conference calls. So it has been relatively easy for me to integrate dialysis into my life. Also, I live five minutes away from my dialysis center, which helps as well. I think it also helps that I have no other health issues other than ESRD.
Heck, even when I was in the hospital earlier this week, I was able to keep up with my work and take a conference call from the hospital room LOL
My question to you is "HOW DO YOU WORK 40 hRS a week and still do dialysis?? How do you feel?"
Lisa
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My labs are usually pretty good, except for last month when I came back from Germany. lol. The phos is usually in the 4s. and my pb is usually pretty normal. But that doesnt stop the dietiection from nagging and it seems like she puts me in the same group as people with really high bp, and high phos.
I wouldn't change a darn thing if it's working for you! If your labs are good - why change what your diet consists of? Granted, we should all eat healthier whenever we can, but I would ignore the nagging - or flat out tell her you are happy with the results and don't really want to talk about it!
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If you want to work part time from home making about $9/hour, I would call Ticket to Work and see if they can connect you with the place that called me. Karol's daughter also received a call with details about this work, so perhaps she kept hers. I'd give you the information but I deleted the message.
Ticket to Work: 1-866-968-7842
I am assuming you have not been sent a ticket, but if you are willing and able, then they should work with you. I would google the program to get an idea how it works, then call them to access the services. Good luck.
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I agree about the Arizona Iced Tea...it's not so much the plastic jugs, rather, it's about the phosphates in the tea itself. It's a processed product, and frankly, it's not really good for people whose kidneys work well!
While it is true that we should avoid processed foods (again, like renally normal people), not all foods are processed with phosphates, so if you become an avid label reader, you'll do better.
Nothing's easy.
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You see, Lisa, there "AINT ANYTHING WRONG WITH YOU" my dear! They use to nag my husband all the time too, but he never did any talking, cause I did it for him! Yes I do alot of advocating for him, and know that at the moment, you do it alone! But in June, my dear, I truly believe you will see a HUGE change in the way you are treated! Im hoping that He will be a pillar of strength for you! Im not only talking about physically strong, but mentally, emotionally and BY YOUR SIDE strong!
You need someone taking care of you for a change! You have put up with alot, Lisa.
lmunchkin
:kickstart;
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Lisa :
I'll admit I never really listened, i'd sneak in a big mac once in a while just to treat myself and worry about the consequences later.
The kicker to this is. THey are ok with Big Macs! Would you believe it. Especially without cheese! She told me those really arent bad! So, pretty much anything that is healthy for you is bad, but fastfood is ok. :urcrazy;
Its like they would rather me have a Big Mac and fries then a ham sandwich because the ham is processed! and dont get me started on Peaunut Butter and Jelly because I think Peanut Butter and Jelly (once in awhile) is way healthier then a Big Mac.
EDITED: Fixed quote tag error - jbeany, Moderator
the only thing with the big mac is the sodium, but man, does it taste good ! :clap;
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as for pd diet, it sucks, i won't sugar coat it. my dietician kept telling to make fresh food, cut down on processed stuff (lots of salt/potassium), and keep fluid intakes to a minimal. I'll admit I never really listened, i'd sneak in a big mac once in a while just to treat myself and worry about the consequences later.
as for the baxter delivery, maybe ask your hpr about a lock box. I got one from baxter, so each delivery i would leave a house key in the lock box, attach the lock box to the back door handle, and the delivery guy would just let himself in, drop off my supplies, lock the door and leave. that way you won't have to stay home for the delivery (only issue is trust, do you trust the baxter delivery guy in your house unsupervised).
whether you're on pd or hemo, dialysis just plain sucks. both methods of dialysis has their strengths and weaknesses, but both are time consuming (factor in setup of machine, undergoing treatment, then strip down of the machine after).
Yes this does suck...but on that note I was always told to eat potassium (I guess a major perk for PD dialysis).
As for the Baxter guys I am not totally sure I can trust them because everytime I have a delivery there is a different delivery guy there.
my baxter delivery guy was the same guy, so i had no issues there. but yeah, if it is a different person each time, my level of trust wouldn't be so high.