I am new here. I started in center dialysis this past March. I am still adjusting to this new normal. I m also a Type 2 Diabetic. I am struggling to keep my sugars in control. I am so hungry after dialysis that I eat too much. I live alone so it would be great to connect with others who understand what I am going through.
Hi Everyone!: I am new here. I started in... - Kidney Dialysis
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Ribbit60
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hello, my name is rick and I started in march too,lol diakysis that is, I live by my self too, since my mom past at 90 but had dementia for the last few years of her life but knew everyone but didn't talk as much as she once did etc. i'm getting a pd catheter put in this thur right now incenter hemo I. m guessing your incenter hemo also? ps lived aloned before my mom got sick and we promised our dad we wouldn't put her in a rehab house etc.
Hi Rick, I am in center. I go 3 times a week. I don't think I could handle dialysis at home. I haven't decided if I want a transplant. I guess I will be in center for a long time. It is hard dealing with all this alone. I am also a Type 2 diabetic so that makes it worse. I am sorry about your mom. She was lucky to have you. I have one daughter who is married and lives in Arkansas. Good luck with your catheter!!
yeah i go mon wed fri im in a private room with glass walls but its colder then rest of building sometimes i wear a knit winter hat lol do you have people next to you that like to talk? you should have a social worker at the center to talk to about your concerns etc. how long of time past after being told you might need dialysis to startimg dialysis? sounds like everything hit you all at once, thanks surgery should go well, i'm use to it now since i've have a few surgeries in past months lol
it is not possible to speak with anyone during dialysis because the chairs are too far apart. The other reason is that most of the other patients speak Spanish. I watch TV and read. There is a social worker there. She isn't much help. I wasn't feeling well for a couple of weeks. I saw my doctor on Tuesday and started dialysis the next day. I am still adjusting to it. I am used to being alone all the time. It's been difficult having to be around people and being poked and prodded. Sometimes I wonder how I will be able to do this for the rest of my life.
you might not have to do hemo incenter for the rest of your life, can you be put on a list for a transplant, i'm on one at iu downtown indy. and you could do pd dialysis for a month, then use a cycler at night while you sleep. you don't have to have anyone leaving with you to do that also. thats what i'm starting to do
It gets better as you feel better, keep strong I walk my dog daily walking helps me through alot of my thoughts.
The surgeries will be a long list, but in turn life is precious, I wear hats and freeze during treatment it's because your core temprture changes with the blood flowing through the Dialysis cycler.
TamekaSNKF Peer MentorNKF Ambassador
I be starving too after dialysis, but I still eat healthy, but see at my center we can have snacks, so that makes it a little easier. I been living this new normal way of life since 2009.
Thanks for your reply. I am having a very difficult time dealing with the immense hunger I feel after dialysis. I can't seem to control my eating. I am a Type 2 diabetic. Before I started dialysis I was doing so well. My Ac1 was 5.9 which is nondiabetic. Now I can't manage to eat enough to be satisfied. What do you eat?
Pretzels, popcorn and oatmeal I eat at dialysis and when I come home eat 2 pieces of fish and rice. Or I order Chinese. Or I eat a sandwich and some popcorn and fruit. U are suppose to eat to get full not stuffed. U have to practice portion control and ur body will get use to it. But if u eat and still hungry snack on things that won't hurt u, like pretzels and chex mix or popcorn . I even eat cereal like corn chex or rice chex.
I usually have a fruit and the protein bar they give me. Sometimes I have a bottle of Boost. When I finish dialysis it feels like I ate nothing at all. You make good choices. My problem is that I have to also watch my sugar. I am not able to eat unlimited carbs such as popcorn and pretzels. I've spoken with the dietician about it but she doesn't seem to be too concerned about my sugars. You are right about portion control. I am trying to find a balance. It is very frustrating. Do you think I need to eat more during dialysis?
Not necessarily more cause sometime that can make u sick. Can u eat a toasted egg sandwich with cheese and ham slices...hmm can u have tuna? How about vegetable like carrots, cucumber, tomatoes, bell peppers...cause u could make a cucumber salad and soak ur vegetables in a little olive oil, salt, pepper and lemon juice, unless u can just use Italian dressing.
I spoke with the dietician at the dialysis center yesterday. u are correct. It isn't good to eat more because you can get sick. She also said that patients aren't suppose to eat at all during dialysis. She told me if anyone comes around checking on the place I should tell them I don't have anything to eat while I am getting treatment. That didn't sit well with me. All your suggestions are good. I was told not to eat tomatoes or cheese. Your salad suggestion sounds great. I only use olive oil and red wine vinegar on my salads. Do you have diabetes? It makes dialysis so much more challenging.
No I don't have diabetes but I do have Lupus and I'm supposed to stay away from cheese tomatoes potatoes my dietitian also says that I can have those things they're all in moderation so I eat like spaghetti maybe once a month because of the Tomato products I have a binder that I take if I eat any cheese or other kind of dairy and potatoes you're supposed to soak them in cold water for an hour pour the water off soak again for another hour pour the water off and then prepare them however you going to prepare them so if you're going to mash them then obviously you got to add more water and then cook them this time because when you're soaking them you're just soaking them in cold water and sitting it on the counter you know and they're supposed to pull out the potassium some of the potassium that is in the potatoes so then if you mash them or roast them or whatever they won't start causing plaque around your heart and when all of this first started with me 15 years ago nobody told me that and so I have plaque around my heart right now and they noticed it two years ago when I ended up having to have open heart surgery so yeah I'm here for making sure that I can help people do the right thing because I know what happened to me when I did the wrong thing so I don't want people to make my wrong mistakes and though I don't have diabetes I definitely still understand how that works because I have a friend that has diabetes and I have other people at my dialysis center that has diabetes and so I talk a lot to these people and I'm also in a dialysis group on Facebook and some people have diabetes and so I got a lot of information talking back and forth to them and then I research a lot of stuff and then I know what my dietitian told me and what my doctors have told me so I've been doing a lot better at taking my binders when I eat anything that has Dairy even when I eat cereal I try not to always drink the milk that's left in the bowl my dietitian did make one suggestion which was to eat your cereal with a fork I'm not trying that cuz it just don't seem natural to me anyway I just try not to drink whatever is left at the bottom of the bowl yeah that's about it I hope you're doing well. Oh and as far as the not eating while doing dialysis my clinic give us a waiver that says I know that I am not supposed to eat while on the machine but if I do these are the things that I am allowed to eat then they make us sign it and they got a list of little suggestions on there like the stuff I've already said to you even if we come in with breakfast you know cuz some of us go in like really really early and it's kind of hard to not be hungry when you're sitting there for hours not able to move or do too much of anything so they said that we can have like crackers or pretzels or popcorn but back to the breakfast thing they said that we can have like, turkey sandwiches or egg salad sandwiches or something else I can't quite remember but oatmeal is what I take. It's the choking in the past on the machine but I mean you can easily choke off of the machine. I mean you understand what they saying.so obviously they can't stop people if they're going to eat. Some other Centers do is if you insist on eating they take you off the machine and won't give you your treatment but then some Centers no that is not that easy like I said to just sit there for that long and not be able to eat or drink anything at all but also when they know that head people are coming in they do let us know to kind of put our things aside and I'm okay with that that's not so bad but you have some people that try to bring in a 4 course meal we had this one lady that would bring BBQ all the time first of all you shouldn't have all that barbecue sauce so you already on the machine doing the wrong thing she would have ribs and mashed potatoes and coleslaw and like all the stuff they tell you to try to avoid you eat right there on the machine and in they face and it's just crazy that people want to abuse the ability to snack not have a four-course dinner, thing LOL
Hi Tameka, Thank you for the helpful info. One of my biggest mistakes is that I eliminate foods completely from my diet. I stopped eating potatoes, tomatoes, bananas, and oranges. I will try soaking the potatoes. I really miss having them. I am so confused by the different guidelines that various organizations give. the American Association for Kidney Patients says to avoid oatmeal, pears, and peanuts. Another organization says pears are okay. My dietician gave me a handout that lists peanuts under snacks. It is all so confusing. I am still trying to follow a diet for kidneys and for diabetes. The problem is some of the tenets are the opposite . The diabetes diet tells you to eat whole grains. The kidney diet says white bread and white rice. I can't find two sources that say the same thing! Do you have to follow a special diet for lupus?
There are a couple of patients that bring bowls of food and large drinks. There is one lady that has a cigarette as soon as she gets outside. It sounds like you have friends at the center. Most of the patients at my center are Hispanic and only speak Spanish. I can't really speak with anyone.
I have been having severe cramps during dialysis. Do you suffer from cramps? I get them in my access arm, both legs and feet, and my stomach. I also get them during the night on the days I have dialysis. Any suggestions on how to deal with this problem?
Thanks for taking the time to write to me. I really appreciate it!
Okay so you said a lot and so I'm going to try to cover as most as I can remember at this point. So as far as the peanuts on my phosphorus binder thing it says peanuts boiled is the lowest form of phosphorus that you can have. Pears if they're cooked in heavy syrup you don't like the canned pears that you would get inside of the heavy syrup or inside of a juice pack those are lower and potassium not if you just go get a pair out of the fruit section you know what the apples and oranges and stuff like that or that pair is higher in phosphorus and I think you said something about an orange and the Orange is actually higher in potassium so as far as the potassium the fruits that would be good as like apricots blueberries cranberries cherries dates figs grapes lemons limes peaches that are canned in heavy syrup pineapple pieces from a real pineapple prunes that are dried rhubarb that is cooked and then watermelon is the best. So now we have a lady that smokes too she was smoke and make them wait before treatment and as soon as she can get off of the machine she smokes her another cigarette so you just have some people that don't want to do right and ain't going to do right. I do bring a little bowl of oatmeal when I come in so that's my breakfast I eat oatmeal and sausage while I am on the machine and I'll take crackers and pretzels as extra snack if I need or want something else. Okay and for the cramps usually people get cramps when they're pulling too much fluid off because yes I have experienced the cramps in my hands and my chest and my neck and my foot my leg my stomach and then later on that day sometime when I stretch I get those cramps again so usually that's because they're pulling off too much fluid so you have to be really careful about what you gain and not taking too much off your no maybe you've gained way maybe if you lost weight or something like that so it's kind of really hard to always gauge but you have to really be careful. and no I've never seen any to diet things really match up with one another because I mean people with kidney problems are necessarily have to do with people with diabetes or people with heart issues so for me I just follow the kidney protocol and yeah that's it but you know there are a lot of good recipes on davita.com for kidney and dialysis patients so you might want to look at that and see if you see anything you like I hope I helped.
Orange is high in potassium so I don't eat many the pineapple should be canned in juce, I snack on frozen blueberries in the summer and grapes, Cranberries are to high in potassium so are pomagranate 28 seads is not enough. I always ask my diatition new ? It will help you in the long run.
Talk to nurse and ask about dry weight and salt tell her you are cramping frequently
Hi ribbit 60 I'm MJ. I'm on PD dialysis(the nighttime one) I've been on it since September 2017 and I am also a type 1 diabetic. I was so scared when I first started dialysis but doing the night time dialysis was the best decision I ever made.I have a lot more energy now than what I had before. Like you I suffered painful cramps in my ankles,feet,fingers,groin and places I didn't even know you can get cramp but thanks to quinine tablets I don't suffer as much. I'm on restricted fluid (2L) and I have cut down on salt which is very important while you're on dialysis. I hope this helps
Those people who abuse what their treatment have more health complications. I try to stay healthy as possible. Rice milk works on cereal. The DaVita recipes have things like coslaw with the proper way to make it. I appreciate your insight to help others. thanks
Sounds great without the cheese is to salty
Try bring deli lunch meat and caronts talk to the diatition for suggestions
I bring a sandwich and apple stay away from salt.
Thank you Tameka your reply was very helpful. About the peanuts. Do you buy peanuts in the shell and boil them? I never heard of boiled peanuts. I'd like to try it. I haven't really explored the recipes on Davita yet. I need to do that. I tend to eat the same things all the time. I am not much of a cook. I live alone and keep my meals simple.
Last Monday I cramped badly because I overate over the weekend causing my sugar to be high which made ne very thirsty. Usually I don't drink enough. Can that cause cramping too? I hope they adjust things for me soon. The cramps are so painful.
My mom told me about a site called MyFitnessPal.com. You can keep a diary of what you ate each day. It gives you how many calories, carbs, protein, sodium, and fat you consume for each day. I just started on it today. Ever since I had my access surgery I can not write neatly at all. I had to get it in my right arm because my veins were too small in my left arm. Being able to enter my meals online is great. The only drawback is that is doesn't list potassium and phosphorus. Now I have to be diligent and do it every day!
hi. sorry about the cramping. it is sooo painful! i haven't started dialysis yet but occassionally get cramps in my legs, hards and arms. i think i go too low on the potassium which is what i think causes it. what do you do, or what can the dialysis center do for you to elminiate or reduce the cramps
hope there is something to help you and me, as well.
thanx for any input you can provide.
My cramping at dialysis happens when I eat or drink too much water. The extra weight causing the need for more fluid to be removed. When I cramp they turn off the machine if it is really bad. There have been times when they end my treatment earlier. that happened yesterday. It was stopped 18 minutes earlier. I have neuropathy in both feet and ankles. That causes cramps at night. My doctor reduces my dose of Lipitor but it didn't really help. My mom has always had leg cramps and used to eat a banana a day. Now she eats kiwi fruit. My potassium levels are normal though. have you beento a doctor about your cramping?
Do you know of a site where I can get a form for a food log that is spefically for dialysis patients?
I need friends badly!!!
Hi Judy, I am here if you want tom chat.
Thank you, Ribbit60
I am struggling with my BS too. A1C was 8.4 a week ago. How do you the kidney and diabetes diet! When you say vegetables, does that mean all green or some low carbs?
I am having a really hard time with the two diets. they contradict each other. I follow the American Association of kidney list of foods to eat and foods to avoid. My biggest mistake is cutting out some foods completely. Has you doctor given you any information on diet? Is the dietician at the dialysis center helpful? Mine isn't. In fact, there isn't any concern about my sugars at all.
How long have you been on Dialysis? I started this past March. I go 3 days a week for a 3 hour treatment. I am still adjusting to it.
I am not on dialysis yet, just trying to know what's coming up for me. Want to get ahead of things if I can.
Okay. Anything I can help you with just ask. What stage of kidney disease are you in. I was diagnosed with kidney disease in 2010. I started dialysis this past March. I am new at this but I will try to help. I could use a friend too!
I am in stage 4, GFR is 18 and creatnine is 2.4. About 9 years ago mine dropped to 70 so my Dr. began watching it closely. This year it has been dropping_----50, then 33 , then 24 and now 18.
Hi Judy, My sister is also diabetic, on dialysis for 9 years and has cardiac problems. So I understand the problems because I have been the cook, grocery shopper, meal planner she too lives alone and doesn't cook.
We have done a lot of looking and there really is not one guide that takes care of everything she can or cannot eat.
Sometimes it is as simple as making things from scratch instead of buying them frozen. For example, it had been quite a while since she ate waffles. You know they are in the freezer section, pop them in the toaster, boom breakfast. She cant eat them too much phosphorous, I made them from scratch( no preservatives to keep them fresh while frozen) and boy did they taste good. I made a few extra she popped those in the freezer. Now she can go boom, breakfast.
Anything frozen is going to have a lot of sodium, and preservatives. Anything (ok alot of things) prepackaged is not good.
The recipes on the Davita sight are pretty good. We count the carbs for the diabetes,
we count everything else for dialysis and cardiac. She is also on a fluid restriction of 32 oz per day. She does veer from the guidelines at times but then she knows it is going to affect the run she has at the center.
I know it is overwhelming at first. Just remember, everything you can buy use to be made in the home kitchen and much healthier.
Give yourself some credit, you are trying to find out before you start. Way to be proactive. White flour, white rice, rice flour, Panko breading crumbs, soaking potatoes,
READING LABELS. Maybe it would helpful if they did a cooking class, or shopping class for those going into dialysis. Just ask and see if there is anyone out there like that.
Hang in there, take a deep breath, and know we are here for you.
cs65NKF Ambassador
Hi, ribbit60, I am also new to dialysis since last October. I am not diabetic, but i also get starved right after I get home from dialysis. I usually have four Stoned Wheat Thin low sodium crackers with peanut butter and either a little water or coffee. Then, because of the phosphorus in the peanut butter i take another phosphorus binder. I'm not sure if that's ok if you're diabetic. We're not allowed to eat while we're on the machine due to danger of choking. We can have a drink, some people have more than one drink depending on what they are allowed by the doctor. I read about your problem with cramping during treatment. Our nurses help us by lowering us down to minimum for a few minutes. Also, I 've learned if you wrap the hand or foot or leg with a warm blanket it helps. I'm lucky to have one technician who knows acupressure and know where to press to get relief from a cramp. The cramp happens because they're trying to take too much fluid off. Tell your doctor or nurses if it happens too much because they can change your orders for dialysis.
Good luck to you and don't be afraid to ask the staff any questions you have about dialysis. Oh, and they should be able to help you get nutrition information, too. There are lists of foods with calorie counts, carbs, sodium, potassium, phosphorus, sugar,etc. Also, try the National Kidney Foundation for cookbooks, recipes for diabetic kidney patients.
Not the only one I eat alot to, I bring lunch and am starving by the time I get home. My husband has been cooking so I am fortunate.
Crockpot is a good idea
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