I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: cattlekid on February 03, 2012, 10:14:38 AM
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What does everyone snack on during treatment? I am currently bingeing on hard candy and DH is concerned about my blood sugar (I am not diabetic but he is worried anyhow).
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When I was on D, I snacked on a variety of things. I would go to McD's and get 2 plain hamburgers and 3 choc chip cookies (protein and a treat, lol), other times I would bring in crackers, cookies, apple slices, peanut butter sandwich, things like that. I never ate a whole meal while on the machine, but I did snack at all treatments. Probably the biggest thing I'd have was a bowl of clam chowder (bad, yes I know, but the staff all thought it was great!) I find that if I didn't, I'd be so hungry I'd be shaking at the end. Now that I think about it, I stll got that way sometimes even *with* the snacks! (and yes, including the bowl of chowder - go figure!)
KarenInWA
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I used to bring some carrot sticks, 1/2 a turkey or tuna sandwich, some crackers, red vines, graham crackers,grapes, thinly sliced apple, cucumber slices, and my favorite was to get a loaf of some sort of dense bread that had some fruit in it. There is not much fruit but be careful because dried fruit has lots of potassium. I would slice is thinly and brush each slice with melted butter and sprinkle with the large sugar crystals then back till crispy. A few slices of that and I was in heaven!
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When I did do hemo, the center I was at did NOT allow food whatsoever, a reason why I will NOT do hemo.
Lisa
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i am on nocturnal. my on time is 7pm. i often take dinner. sometimes a sandwich from home sometimes a rice and vegie bowl or fish tacos. i usually have crackers or popcorn with me. if i don't by midnight i'm starving. once or twice a month i even bring a banana!!!!!!!!!
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I'm at home, I can snack on whatever I want during treatment LOL
But yes, when I was in-center, I fought to be able to eat a protein bar during treatment. And this was starting at 3:00 PM, lunch was at 11:30 and I didn't get home until 7:00. A dinky protein bar didn't really cut it.
When I did do hemo, the center I was at did NOT allow food whatsoever, a reason why I will NOT do hemo.
Lisa
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Ooh...popcorn! I have a whole crate of SmartPop. I think I should get to popping LOL
i am on nocturnal. my on time is 7pm. i often take dinner. sometimes a sandwich from home sometimes a rice and vegie bowl or fish tacos. i usually have crackers or popcorn with me. if i don't by midnight i'm starving. once or twice a month i even bring a banana!!!!!!!!!
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I need to snack on something. I cannot sit for 3 + 3/4 hrs with nothing to snack on. I take a small blueberry muffin and some digestive cookies. My unit offers soda crackers (no salt) everytime I'm there. I drink nothing, even though I pee.
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Cordelia - that's why I would get 2 PLAIN burgers. Nothing but bun and burger. I was actually told/read (can't remember which) that if on a renal diet, that is the best thing to get from a fast food place. Protein and the least amount of sodium/phos, etc. I would never dream of getting a loaded burger!
I did the McD's thing because I drove to D from work. I only had enough time to pick up that snack at the drive thru. You make do with what you have to.
KarenInWA
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I'm at home, I can snack on whatever I want during treatment LOL
But yes, when I was in-center, I fought to be able to eat a protein bar during treatment. And this was starting at 3:00 PM, lunch was at 11:30 and I didn't get home until 7:00. A dinky protein bar didn't really cut it.
When I did do hemo, the center I was at did NOT allow food whatsoever, a reason why I will NOT do hemo.
Lisa
they can't actually stop you from eating, especially if your diabetic. but sometimes you have to squeak loudly to make them shut up and go away.
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I'm at home, I can snack on whatever I want during treatment LOL
But yes, when I was in-center, I fought to be able to eat a protein bar during treatment. And this was starting at 3:00 PM, lunch was at 11:30 and I didn't get home until 7:00. A dinky protein bar didn't really cut it.
When I did do hemo, the center I was at did NOT allow food whatsoever, a reason why I will NOT do hemo.
Lisa
they can't actually stop you from eating, especially if your diabetic. but sometimes you have to squeak loudly to make them shut up and go away.
Umm they take food away from you at my clinic. I feel bad for those who are diabetic.I have actually seen the staff take away people's food.
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Cattlekid, Im going to be totally honest with you here! We eat when and what we want, seriously. We have had full meals while he was dialysising, but not deliberate, just because of time constraints. We snack on anything we want. As of late, he and I share a cup of milk with Honey Graham crackers, "they are so good".
Im not going to deny him anything, especially when he continues to dialysis for the times he has been doing. What ever he takes in, in time it will be D'd out. Now his portion size has been smaller, and mine too, by the way. But we still eat all the wrong & right foods.
His labs reflect his job well done. My Lord, you guys are Dialysising, give yourselves a break and lighten up on yourselfs.
Now PD does reguire a Boat Load of Protein. No matter how much protein I shoveled in J. it was never enough. With Hemo, it is not like that. I truly believe that people with this Disease can eat the same things as others, but have to limit it due to their kidneys failing. I think I read somewhere, that when kidneys fail, dialysis is doing 16 - 20% of what working kidneys do. So logically, J still eats the same things that he has always loved, but in moderation.
Due to his diabetes he has pretty much given up the really sweet deserts, but may have something sweet every now and then, but still in moderation.
If anyone is doing NxStage at home, you can eat and do anything you want, just do remember your binders. They definately help!
My motto in regards to ESRD, eat what you want but less of it!
God Bless,
lmunchkin
:kickstart;
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I have a lap desk I use to cannulate and inside it I keep an assortment of graham crackers, animal cookies, Special K bars and a whole bunch of cheese and crackers (the little Keebler and Lance packs). Sometimes I throw some miniature candy bars in there. Just enough to hold me if I get the nibbles. I ate a big meal once but that turned out to be a bad idea; my blood pressure dropped.
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Yeah, I did that once at the hospital when I was dialyzing after my first catheter placement. The resulting projectile vomiting was not worth it.
My nurse did tell me that I could pretty much eat whatever I wanted as long as my husband was right nearby in case I aspirated or something like that.
I have a lap desk I use to cannulate and inside it I keep an assortment of graham crackers, animal cookies, Special K bars and a whole bunch of cheese and crackers (the little Keebler and Lance packs). Sometimes I throw some miniature candy bars in there. Just enough to hold me if I get the nibbles. I ate a big meal once but that turned out to be a bad idea; my blood pressure dropped.
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Lmunchkin, I tend to have the same philosophy as you, and just modify a normal diet. That is the great thing about home HD, I can eat if I want to. Don't tend to, but it's great to know that I can.
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Because of our schedule, we came home from work, got Carl set up on the machine, and then ate dinner....every night. If we had not done it that way we would have been getting off the machine after midnight and having to be back at work at 7:15 in the morning.
I just wrote on his flow sheets that he had eaten dinner. LOL
Aleta
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Aleta, you know the times that we have had dinner while he dialysized, he has not upchucked, but he does gag. But he does that anyway whether on D or not.
Im just not going to deny him some pleasurable food. He really does work to keep his intake down, and never complains when he meets his UF goal with 30-40 mins cleaning toxins. At first, yes, cause he really did not understand how it would affect him physically to STOP D when goal was met. It just doesnt work that way does it. Those toxins that have been building up, have got to come off too!
Once when we first started at home and were just begining to get comfortable with it, he met his goal a little sooner, 2hrs, and he wanted me to take him off. I looked at him and asked where he was going that he needed to get off. He said no where. I said lets just stick with this and see if it really improves the way you feel even more. He has stuck with it and is reaping the rewards.
If it hadnt been for the nurse telling me in a monthly workup to please not take him off when goal is met and said there was toxins that needed to be removed. That word "toxins" sounds deadly, and yes, if enough of it gets built up, you will be deathly sick. No way will I ever stop his D when his goal it met. So therefore, I will not deny him what he loves to eat. I do not think its necessary!
I don't know about the In-centers anymore! I had hoped they would have eased up a bit on the rules. I think some have maybe changed, but it aint like doing it at home. I look at it this way, yea it takes commitment, but so does in-center. If you got to D and sit in a chair for so many hours, why not sit at home and do the same thing. Try to D at In-center in your underwear talking loudly or laughing loudly. Nope, don't think so!
You D. in-center and they want to tell you not to eat this or that. Just eat what you want, take your binders, and eat in moderation! Most times, they will never know. If your labs come back and your hi in something, then you will know what caused it and do the adjustment on your own.
By all means, you guys are too hard on yourselfs and you really need to just relax. Yes, this is a scary disease. Just try to make it the best way you can, but don't deny yourselfs when you are the one sitting in that chair for hours on end! That's just not right IMHO.
Take care now, & God Bless!
lmunchkin
:kickstart;
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It's more than 6 hours between when I leave my house for D and when I get back home. When I first started a few months ago, I was getting horrible headaches. DUH! I wasn't used to going without food and coffee for so many hours. I bring a coffee and one slice of bread with peanut butter and binders of course. It's still not enough to keep me from getting hungry before I leave, but at least I don't get a headache. But I find if I eat any more than that it makes it much more difficult to take off the fluid. I believe that when you eat your digestive systems draw fluid from your bloodstream to aid in digestion (contribute the acids and enzymes you need) this is on top of the fluid that the machine is drawing out, and your tissues just can't replace it fast enough. My heart speeds up and my blood pressure drops after I eat on D. So I have to play it carefully and always do the same thing each time so that I can control what happens.
When I get on home hemo, I will just use a slower removal rate and I won't have to worry about that.
I think the clinics probably don't "like" people to eat because it makes it harder for them to keep accurate track of dry weights. But hey - just weigh in the food! (it's going in your stomach, right?)
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But here is the thing, Fearless, that some do not realize. In-Center is 3 days a week, Nxstage at home is almost everyday. You are taking it off, like in our case, starting out 6 days a week, now he is doing 3 on and 2 off. If his clearance does not meet D standards, then he can pick up another day here or there. But he is a good patient, and meets his clearance all the time, (knock on wood). If doctor said to pick up another day, we would, but as of now, no need!
So I can understand a little about the In-Center vs Home hemo. 3 days out of 7 vs 6 out of 7, there is a huge difference there. But I also understand the aspects of Leting some one else be responsible too. As a caregiver, I can see some real luxury to that, but I did not like being left out either. I didnt like picking up my husband where they "drained" him to the point of drunkeness. It was horrible to witness, but I understand there reasons for it. They only have those few days to get it off, whereas we have almost every day.
Iam a firm believer in the more dialysis the better you feel. But some go to in-centers because they have become very comfortable and routinely so, with it. But we just like being in control of it, and having the freedom to miss a day if we want or plan our lives around D instead of it interferring with it. You go m,w,f or t,th,sat @ set times all the time. You miss a trmt yea you gonna know it, not just by the staff but you will feel awful. It is very important that those going In-center get there trmts when scheduled.
That was another thing about In-center was when we would get there early, he never got in on his time and was always late getting out. We couldnt plan for anything. He worked full time and I worked, and we were always late due to D in center. It was just a hassel for us, and we didn't last a year there.
So, Fearless, there are good reasons not to eat a full meal or alot of snacks when Incenter. I can see it to that point. But to not allow a few snacks is rediculous IMHO. I just hate it for all of you, sincerely! The things that you have to go through!
Didn't mean to write this boring novel. Got carried away.
God Bless,
lmunchkin
:kickstart;
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Take whatever you want into that foreboding hemo center. Hide it in your pocket or where ever. Then stuff it in your mouth so that you look like a chipmunk. Smile at them when they walk by. If you are eating baked goods, let a few crumbs fall out when you smile.
Not helpful? Damn!
gerald
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ha ha ha! I tthink I will try that Gerald!
lmunchkin,
I do in-center dialysis 3x a week right now, so I understand what a shit-pile of a life that is. And if I could eat a real meal while on dialysis and not have it cause me to pass out, I would. As it is, I don't even dare eat more than a smidgen of a breakfast either, for fear that I'll have to have them shut off the UF before I'm done. So, dialysis days are hungry days and that's my choice to make my treatment easier, BUT NOT my choice if I were able to do what I want. If that were the case, I would eat a normal breakfast and take a nice lunch with me. But dialysis days are non-life days: I get up, I prepare, I go, I suffer through it. By hour two I feel like I'm buzzing and vibrating all over. I can't read my book after hour 3 because I can't focus. By the end I am drained and really vibrating. But I'm able to drive myself home. I sit at my computer and continue to vibrate until I go to bed. By the next day I'm OK. So, I think if I weren't looking forward to home hemo, I'd be looking forward to NOTHING, because I don't see why anyone would want to continue a life like this indefinitely. I'm not like those patients who go to sleep on the machine, or just watch TV and seem to be OK and fine to go out to dinner or something when they're done. When I leave, I drive straight home because I'm starving, but I could never enjoy eating out - I look and feel like crap.
So, I think we're probably saying the same thing: in-center dialysis SUCKS, and if it doesn't cause you physical trouble to eat while you're doing it, then you should EAT! And, you should probably eat anything you want because otherwise life is even more intolerably shitty.
(please dear readers excuse my unpleasant language, I use it only for effect and truth!) :)
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It's unfortunate that home treatment isn't for every one. In center is the option available for lots of people. Once I start, after about six months or so....I am hoping my nephro will endorse home hemo for me, but as I live alone I'm not sure he will.
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Oh fearless, I can only imagine the hell that all of you go through. I hope you can get home D soon. Its not perfect, but at least you can do things when you want and yes, you will have control of your own care.
Todd, is the reason your neph wont prescribe home for you, is because you are alone?
Now I personally not crazy that J has to D all the time, but I do what I must. But at least we have a routine down and if that routine needs to be changed for any reason, then we change it. We don't have to notify anyone of our changes or go through and act of Congress to get anything done. We make the change because We control it!
At least I can work during the day, and come home and D. hubby. At first we were doing 6 days a week, and he did so well that the neph said to try 3on & 2off. Now I cant remember how long we have been doing that, but it has been at least 6 mths now. But he worked hard to get there. Not everybody can do it for different reasons. Thank God, cause the 2 days off have been really nice!
I have got to do labs on him 2morrow, so we will see what they reflect for the next month. Should know results in about a week. Im not so concerned with them,but the PTH. He is saying that he will not take sensipar due to High co-pay, so Iam hoping the calcitrol continues to do the trick.
lmunchkin
:kickstart;
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Hi LMunchkin ........
I haven't yet started dialysis. At this point, my choice is to start in centre. I am hoping my nephro will find my capable of doing it on my own about six months after I've started.
I see him this week and will be discussing it further. I hope that if he sees I have a plan in place for "nearby" support (even though they won't be here with me during dialysis), that he'll agree to let me try it. I'm trying to arrange something with a friend who lives within a few minutes of my house to be my 'on call' person to keep in contact with during home dialysis should something go awry.
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I think that's great Bill. Starting In-center is probably a good thing, so as to get the "feel" of things. Just do as they say and learn and then "get the heck out". :lol; :rofl;
Do you think this friend close by could possible go a couple times for training with you. I think that would ease there mind somewhat about your back-up. And of course, when you first get home, your friend might just be there the first couple times, in case you need him.
Starting out can and will be stressful, I won't deny that, but after you get the routine down it gets more easier with repetition(?). Once you get the gist of it, you will be so glad that you stuck with it.
I have learned alot doing Hemo on J. I never knew half the stuff envolved, the where & why's ect... I did not learn on PD except doing it properly, and I certainly wasn't allowed to be in his In-center while he D. So NxStage has really given us a whole different outlook on D and the freedom to do the changes if necessary.
Plus we can do "what" we want!!!
Sorry, am I rambling again?
lmunchkin
:kickstart;
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lmunchkin, you couldn't be with J while he did D in center?? My center was not like that at all! They only ask that any and all visitors be respectful to staff and the other patients. They could stay for the whole treatment if they wanted to.
My center also let us eat. In fact, some of the staff encouraged it! Even when a patient ordered pizza delivery, they wouldn't take it away from them. I did see a nurse ask a patient to sit upright instead of eating while reclined, but that was about it. I don't know why my center was so relaxed when it came to food, but I sure did appreciate it! (I never ate a full meal while there, but I would eat snacks)
KarenInWA
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Nope, they wouldnt let anybody stay and to this day, I think it is still that way. He went to 2 different In-centers in the 9 months or so, and neither allowed it. He went to a Fresc & a DCI clinic. You were fortunate KIW and they were right to allow it!
Im sure not all in-centers have those rules. But the majority do.
lmunch
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Clearly there are different rules/practices everywhere - heck it might even be that it depends who is working or running the unit from one shift to the next as to what is accepted or not.
I can vouch for Karen's center - I went with her to a few of her treatments and they were totally cool. Of course the big fistula on my arm and strange accent may have helped.... :)
And we ate chowder together while she was on the machine !! :) mmm chowder.
In my unit yep food was OK and we had sandwiches and tea/coffee delivered as part of the "service" - and guests were always OK - though mostly folks were asked to leave the area when their patient was being put on or off but other than that you could stay as long as you liked, or not. Indeed one long term patient's wife stayed with him almost every single treatment (she was wonderful). By the end she was almost an associate nurse, and getting stuff for other patients, helping around etc. it was sweet.
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that is so beautiful. what a difference!
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I eat complete meals while I'm dialyzing. The only thing you have to be careful about is a "heavy" meal. When you eat your body redirects a LOT of blood to the digestion process, the stomach and intestines. The dialysis process is already taking a toll on your vascular system, if you now want a large amount of blood to be redirected to your stomach and intestines somethings gotta give...and what happens is the body will lessen the flow of blood there. This can cause SEVERE abdominal cramping because of loss of blood flow to your stomach and intestines. You know those leg cramps...imagine that in your gut....trust me..you don't want this to happen.
I know...it happened to me. It hurts like hell.
John
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we were told that eating while on dialysis directs blood flow to the stomach for digestion, and this blood is then unavailable for dialysizing.
now that we are at home, he eats whatever he wants and labs are perfect, but i believe thats due to longer slower gentler almost daily treatment.