I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: F.A.Q. (Frequently Asked Questions) => Topic started by: tyefly on June 07, 2009, 04:24:37 PM
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Hey I have got to know can a person get up out of their chair while on dialysis..... I mean like just stand up and just stand there..... I know we can walk around but what about a treadmill or stair master or just standing..... I am seeing only people who sit in the chair the entire time...Do they make you do that while in center..... I can not sit in a chair for more that 15 minutes maybe 30 with out my legs really bothering me.... I never sit down very long.... I am one of those people who need to keep moving.... I am really worried about sitting that long.......and I can not sleep during the day and never in public places..... so does anyone know if we can get out of the chair to stand..
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Standing, in general, lowers your blood pressure. When someone is actively receiving hemodialysis, their blood pressure is generally on the low side to begin with, so standing could be dangerous.
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Plus there is the danger of pulling your needles. Definitely NOT something you want to do.
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I have a hard time getting off the machine to go to the restroom - and you do not want to move your needles - that hurts like hell and you may have to be stuck again - there was a man who used to stand up and act like he was conducting music - it made me so nervous and he blew his needles all the time -
you can have your legs up or down and that is about it -- the last hour for me is pure torture..
how long have you been on dialysis and do you stay for 4 hours ?
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In center, the nurses and techs would have fits if you stand up. On home hemo, you have more freedom to do what works for you. I was on home for over a year, but I generally found that standing made me dizzy almost immediately, and the machine would start alarming because I was moving my arm and the pressures were shifting. One of our posters, Adam, was on home hemo and used to ride his stationary bike while he was hooked up.
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I was afraid of that..... That is why every one that I see in the center is alway sitting in a chair..... That will be hard for me....I am not on dialysis yet...... just trying to get a feel for things to come...... what happens when a person gets leg cramps... I get them now usually in the middle of the night and I have to stand and walk it off.... I could never laid in bed and wait for them to go away... I dont think they will ....they usually last 15 to 20 minutes or so.....
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THey do have those sitting cycles that might help you to keep your legs and feet moving. Ask your unit to get one, or find out how much they are and buy one.
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yep no standing any time (they should get one of those parking signs for the unit :p ) and yes, cramping is one of the dire problems !!!!
What our nurses do when we get leg cramps is usually make you lie back, stick your crampy leg out as straight as possible(yeah I know this is hard) and they push against the leg (as in they stand with your foot against their leg so you have something to push against).. it works on and off. The one time I was allowed to stand but they were very careful I kept my needled arm VERY straight and that was only the once. Usually they make you lie there in pain while they give saline and the cramp usually passes in 5 or so painful minutes). I would have to say this is one of my biggest dialysis hates but luckily I can count on my hand the number of bad dialysis cramps I have had. This is where you need to be sure with your dry weight and how much fluid you are taking off - taking off to much, or not allowing your body to "refill" quickly enough is what causes the cramps. This is one reason I use a UF profile as it gives me time to refill. In generally that works for me.
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Our center has chairs that have a panel that slides out at the bottom of the footrest for pressing against to alleviate the cramps. They even sent one home with us for home dialysis. Perhaps you will get lucky!
Aleta
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I've (almost) had cramps twice. I don't know what to expect. This morning I've gained more than ever before so I'm afraid they are going to take off too much today. (I'm sure I've gained real weight too as the dietician kept saying Just Eat, Just Eat. Anything you want. So I did.
Any way I'm about 5 or 6 pounds above what I was on Friday. I don't know exactly how many, but that is a lot of Kilos..... I'm scared.
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Dan if you feel you've put on body weight then ask that your dry weight be upped by 0.5kg or so. You'll soon know if you've upped too much because your BP will tend to go higher. You should also be able to tell them how much fluid YOU want off (within reason). If you're worried about cramps I think that's a reasonable thing to discuss with them.
The worst part about cramps is that there's almost usually no warning.. One minute you're sitting there thinkng now boring and sucky dialysis is... next you're sitting there in hellish pain thinking of painful and sucky dialysis is!!!
I hope you never have to endure a bad one!!! The last two cramp attacks I've had have been in my foot which is slightly less painful than in the calf or other part of the leg. Oddly I heard the other day someone had a cramp in their dialysis arm (!)
I can now so relate to women who complain about period related cramping!
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I do home hemo, and get really, really bad leg cramps. The one time I stood during the cramps, my needle came out. Hubby is emphatic that I never do that again. He absolutely will not let me, and during dialysis I am too weak to argue. Those cramps are horrible and not being able to stand is the worst part. My son and husband both let me press against their leg, which helps a little, but in truth, I mostly have to bear it until the needles are out so I can walk again. Even then, because the blood pressure is low, the "walking" is really just taking steps in place so I can sit down when I start to feel faint.
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Boy I keep hearing the same thing.... which does not sound very good.... I am not on dialysis yet... so I really dont have a clue what is the reality of it all, but.... Sounds like most of you guys are very dizzy and so weak while doing dialysis...... I need to know is this ok or is this not ok.... I would think that being dizzy and feeling very bad or weak while doing dialysis is something that should not happen...... Is this because we are trying to dialysis too fast....with the speeds up (400 to 500) does this make you dizzy....What is making everyone weak and dizzy.....does everyone have these same types of feelings..... and the cramps .....just having to sit there an endure the pain.... whats is with that...... how can we not get cramps.... I know that I get cramps so bad now at time that my muscles in my upper thigh can be sore for days like I have been injured and I sometimes I have to walk with a limp..... Does a slower speed and longer dialysis help from getting dizzy and feeling weak and the cramps....... I would like to get a handle on this if possible before I start going into a center while be trained to do it at home....
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cherpep - when you get those bloody awful cramps (I know the feeling!! *hugs*) does your hubby give you extra saline back to reduce them? I find if I have a horrid cramp and they give say 200ml of saline back the cramp will go away in ~5 minutes. That's bad enough but at least I can finish my session without wanting to run out the door and/or kill someone(myself, mostly!)...
tyrefly - Speaking for myself only. I do not feel weak or dizzy while on dialysis EXCEPT if I am about to, or in the process of, crashing. Indeed a sure sign for me (the 5 minute warning, if you will) is I get very hot and clammy (yeah it's pretty yuck) and if I don't do anything or alert the nurses to stop my UF for a bit, or give me some saline or something then I probably will crash and that's when you go faint, dizzy, low BP (or high, sometimes it varies just to be different :) ) and that's not much fun. However "normal" dialysis just feels like, well, nothing. I mean it just feels like sitting there bored out of my brain and daydreaming about drinking large glasses of iced water with my IHD mates in Vegas! :) Really that's it. Down here in the land of Oz we run at slower speeds, and I run the fastest in our unit at 350(they won't go over that because they claim higher speeds are damaging to fistulas though I have also heard some other units here go to 400) - so I can't answer your q about the higher speeds affecting things. I would say 98.5% of my dialysis time is the "boring" sort and only a very little bit is the painful or dizzy/sick feeling sort... but when it hits boy do you remember it!!!
So try to not be too scared or aprehensive about it. stable dialysis normally doesn't involve anything like cramps or crashing or any of that. Mostly boredom and REALLY wanting to move around the 3 hour mark... (I recommend a super comfy pillow for your back and one for your backside....)
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Something else you need to keep in mind, Tyefly is that you will start with in-center dialysis until they get your needle size up to what you will be using with NxStage. It was about 5 weeks of in-center for my husband. Then we had about five weeks of training. Some centers do the NxStage training in a shorter period of time, but our center is very conservative.
I have to agree with Richard. Most of dialysis is boring. My husband has yet to crash. He mostly reads, does computer work or listens to books on tape or music while dialyzing.
It is good to ask questions so you have a good idea what to expect, but it doesn't help to stress out about it. My husband still has some residual kidney function and his worry was having to go to the bathroom during a treatment. Hasn't happened.
:waving;
Aleta
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tyefly - sorry, didn't mean to alarm you. Dialysis affects different people differently. I am very sensitive to the process, which makes me feel woozy, dizzy, and get the cramps. It does not affect many like that, most just sit there, have dialysis, and then carry on. Unfortunately, that is not my luck. But, I only know of a couple of others who have the same problems as me. My kidneys are done - defunct - very little going on in that area when I'm not on dialysis. Therefore, my treatments are doing all of my kidney function, which might have something to do with my problems.
Richard - we have tried giving back saline when the cramping starts, but it really doesn't make a difference for me. We have tried everything, and my cramps do not appear to be related to too much water coming off. I get them even if I'm not pulling off any fluid. I have adapted the "It's only pain" philosophy. That's what I tell myself during those moments - it's only pain - it's only pain. My hubby thought it was crazy when he first heard me say that - but I tell him I mean it. It's extremely painful, but it's only pain - it's temporary - it will stop. There are things that are worse, and pain means I'm alive, and I know the pain will stop. It's only pain. Most times this gets me through.
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Boring is the operative word. I still can't find anything to amuse me.
At first I though this thread was about "bathroom on dialysis"...."movement on dialysis".
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pray you do not need to have a movement on dialysis and you have a slow tech who does not give a damn - they do not like to take you off and it can get real touchy if you have a problem
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they took 2 1/2 kilos of flulid. I did not have cramps but my bp is low right now . not seriously 90/52
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Oh My.... I never thought about the bathroom thing... but I can see how it could seem that way...... I am hoping that I too dont have to deal with that at the center......
Dont worry about telling it like it is..... cause for some people many things are different...... I am just trying to get a feel as to what I can expect with out having to go to the center here soon and finding out that I cant do this and that when I could..... I sometimes have a problem with people telling me what I can do and what I cant do.... And I know there are many of us...... When I had my kidney biopsy... the nurse kept yelling at me to not move..... not sit up in bed , not move my body at all.... she told me she was going to tie me down..... hey no one is going to tie me down........ are they????
Some people are too literial about everything.... follow the book to the tee..... I am not like that...yet sometimes I wish I was... I wont find myself having to redo things...again and again...
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THey do have those sitting cycles that might help you to keep your legs and feet moving. Ask your unit to get one, or find out how much they are and buy one.
A guy has this at our center and rides it for about a half hour after he gets on.
I got cramps so bad last night! OMG! Forget "water-boarding" just hook up prisoners to dialysis and suck the life out of them until they cramp and they will tell you anything you want to know just to make it stop!
:bow;
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pray you do not need to have a movement on dialysis and you have a slow tech who does not give a damn - they do not like to take you off and it can get real touchy if you have a problem
We think alike..... From the Title.. (Movement during dialysis) I thought "Oh Oh" - Not a good thing!
:rofl;
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Lol Dan - great minds think alike!!!
I too thought of that other kind of movement..but it's covered in another thread anyway :D
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Two years ago I had ulcerative colitis. There's no way I could have survived an hour without movement, never mind four.
:oops;
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Tye, I am also not yet on dialysis and I get some hellacious charley horses in my legs. Again, like you I am sore for days. Neph said maybe I was not drinking enough water, so I doubled my input and they stopped. Dont know if that would work for you or not. Dont know what it's going to do to me when I go on dialysis and fluis is limitedeither.
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When I was hooked up to my catheter I got cramps in both calves. REALLY bad cramps! All the techs and nurses were in a different part of the center and I was balled up. I jumped out of the chair I was in so much pain. That got there attention. They ran over telling me that I can't do that! They pushed some saline and it pretty much relieved the cramps right away.
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My husband's on Nxstage at home, we have the small sitting cycle Kitkatz mentioned. Walmart had them for about $29.00. I've heard some units actually also have them . Small, light weight with bike pedals that sits in front of chair,
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I got one of those cycles and I took it back to Walmart -- it tended to "walk" and the thing got so hot - the directions warned about how hot it would get - and it did -- mine was about 30.00
I guess I should get a heavier one but then it would be too heavy to carry around to dialysis -
but then the nurses would have to move it and recline my chair when I was tired - they do not want to recline you but one time
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I have insisted with my centre that I do 3 hours only dialysis 3 times per week. To do four would send me stir crazy in the last hour. Even in the 3rd hour I get restless legs and can hardly keep still. Fortunately I don't get cramps as yet possibly because I don't have any UF taken off. I wish they would let you stand up but at my centre it's out of the question even if your accessing through lines and not needles.
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That 4th hour is hell in many way. Last night the neph asked if there was anything he could do for me. I said yes. Let me do just 3 hours. Answer: Maybe later. (worse part is my back starts to hurt as I keep moving down in the stupid little chair of horrors.
No leg cramps yet and they do remove fluid (but not as much as with most of the other people). Last night was 2 kilos - the most ever from a bad boy weekend - and I made it ok (save for a little low BP). I've had the beginning of a cramp in my abdomen. Don't know if that is the same you're talking about or not. They say yes, they can be anywhere. I've had those severe leg cramps (Jean called it Charley Horse) for a few years now, but only once or so per year. You have to stand on the leg to make iit goi away. Is that what you mean?
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You're complaining being on 3 or 4 hours?!!! hoo baby!!! Come spend 5 hours in my chair!!
No it's OK I totally understand where you guys are coming from. That last hour or two is just horrible. Some days - like today - it drags on and on and on and you look at the clock and just go stir crazy.. and that then gets my BP going and then I get all pseudo crampy (like I feel like I'm about to cramp, so i tense up a bit expecting it, and that just makes it worse!!).. tried to distract myself with a video on my laptop but it was actually making me laugh which for some reason wasn't actually helping.... ugh.
Even though my clearances are over 75% they just won't give me 30 minutes off... I just keep getting told "the more you do the better it is" and in my brain I know this is very true... but tell that to my sore backside at the 4:15 mark....
oh well the things we do.....
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Yes I always get cramps when I take my water pills too many days in a row..... its is because I swell up with water when I dont take the water pills and when I do I get cramps in the middle of the night....Sometimes I have to walk for 15 to 20 minutes before they go away.... while I am cussing and saying all those bad works...... I have tried to just stand in one spot and this does not help..... I need to put pressure on the muscle.... I never get cramps in my calf muscles I always get them in the thigh muscel.... some times both legs.....what a mess....Then I am sore for a few days and I dont tak the water pills and then I swell up...... what a mess...... the only time I ever had cramps before all of this was when I was 8 mo pregnant..... And I am not pregnant.....LOL any way sounds like we all have to do what we have to do to make it work...... I will be no different.... I will hate to sit their all that time and I will complain and I still will still appreciate being alive..... That is truely a rock between two hard places..... Thx for everyone input..... I will try the cycle when its time.......
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As for standing during dialysis, I usually have very stable blood pressure, and a very forgiving graft as far as arm movement goes, so it's not uncommon for me to stand up and move around my room. I don't do it a lot, but sometimes I'll get up to open/close my window, adjust my fan, etc. For a while I was even riding my bicycle on a stationary trainer while I was on the machine. I had to stop doing it because I simply didn't have enough space to keep the bicycle next to the machine without it being in the way. In-centre on the other hand, they would have kittens if a patient stood up while on the machine.
Adam
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Since we are talking about dialysis comfort, or discomfort. Can you lie on one side or the other during dialysis? When I had a heart attack they did an angioplasty on me and tried to keep me on my back and I fought the techs, drs, and nurses, trying to get off my back which hurt like a son of a gun, until one nurse took pity on me and shoved a pillow behind me. I cried at the relief.
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Er, well the chairs aren't really made for being on one's side - it could work if you were on/in a bed I guess but the real issue is (and I have seen this) is that you'd have to lie in such a way as to not obstruct, or worse, lie on/over your lines/access (that would not be good!!) and I think if you were lying/sleeping it would be so easy to roll over or move in such a way to cause problems (even with a cath I reckon) that it's probably not a good idea.
With the chair I use 2 pillows along with the "standard" pillow for my fistula arm. I use a pillow for my back and one to sit on(the chairs are so hard).. it mostly works... mostly
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Okay, now for the real question. Being anemic, I take iron pills, taking iron pills, you get constipated, being constipated, you take a stool softener. They don't give you a lot of notice when the movement is going to begin, and often give diarrhea. Sooooooo, will I need a note from some one to "Please excuse Jean from dialysis today, she has the trots"? Or will they let me get up 3 or 4 times in and hour, or, will I just have to P**p my unders.?
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Well not really my area but I would imagine that they would set you up with a pan - you simply could NOT be disconnected several times an hour to go - and since you'd have little advance notice it would be over before they were half done (alas!) so i imagine if you informed them you'd get a pan and curtains - I can't think of any other obvious solution to that one.
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Jean,
You may start getting your iron by IV while on dialysis and you may also be getting Epogen for the anemia. Hopefully between those treatments you will not be hot to trot!
Aleta
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Aleta, thank you. that does sound like a reasonable thing. I would hate to have to use a bedpan and hope that works out okay for me. " Hot to Trot" , haha that's funny....
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I use codeine phosphate. At the first "trot" I take one 15mg tablet and that's it for the next 24 hours. Works every time for me.
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Jean,
Before dialysis my husband was VERY anemic. He just wanted to sleep all the time that we weren't at work. Getting the Epogen and Venifer made a huge difference for him. And then, with doing daily dialysis his overall health improved, too. He started dialysis a year ago this month. Just the other day he mentioned that a year ago, he simply could not have done something that he doesn't even think about now.
Not everyone responds that well to dialysis, but he is one of the lucky ones. We never wished to go have to do it, but it has made life more enjoyable for my husband. :clap;
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Thanks so much for that Aleta. I have high hopes for feeling at least a little bit better on dialysis. Today was such a bad day, my energy level was in the cellar. But, once again, we charge ahead and do something, even if it is wrong. And Stoday, I hate to sound dense, but if you are on the cycle of anemia, iron tablets, stool softeners, dont you find that one day you are p**ping your brains out and the next day you can't go due to what you took to make you stop in the first place??? That is how it works with me.
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Amen! that is how it works for me. same with the blood pressure meds, they tell you to take them before you come to treatment, then your pressure drops way low during treatment. Your potassium is too low, eat some potassium, your potassium is too high, what did you eat? Will somebody make up their freaking mind!
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RichardMel,
Thank you for your input. Yours is always the voice of experience. I didnt realize the chairs were so hard. I tried to get a tour at Fresenius and they said no, since they are private ( Kaiser only ) Soon I will try DaVita. Are there others? Maybe I will get an egg crate also.
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And Stoday, I hate to sound dense, but if you are on the cycle of anemia, iron tablets, stool softeners, dont you find that one day you are p**ping your brains out and the next day you can't go due to what you took to make you stop in the first place??? That is how it works with me.
Oh dear! I think you must have misunderstood me. I only take one on a day when I want to go out somewhere and would otherwise have a "problem". Not every day! You have to catch up!
They work for me. It's one of the few medications that I have found that work really well.
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re BP meds. We *never* (well OK, in the vast majority of cases) take BP meds on day of dialysis - only on days off. Indeed under D I have become so stable they took me off BP meds all together which was good but for those on them it was always only on non-dialysis days because D already takes the BP down(as we know) so that could cause crashes all on its own. I am surprised some units would be suggesting to take BP meds *before* dialysis.... I suppose everyone's different and has different needs though.