movement during dialysis

[tyefly]

 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..

[David13]

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. 

[willowtreewren]

Plus there is the danger of pulling your needles. Definitely NOT something you want to do.

[twirl]

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 ?

[jbeany]

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.

[tyefly]

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.....   

[kitkatz]

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.

[RichardMEL]

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.

[willowtreewren]

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

[dwcrawford]

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.

[RichardMEL]

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!

[cherpep]

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.   

[tyefly]

 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....

[RichardMEL]

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....)

[willowtreewren]

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.

 
Aleta

[cherpep]

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.

[dwcrawford]

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". 

[twirl]

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

[dwcrawford]

they took 2 1/2 kilos of flulid.  I did not have cramps but my bp is low right now  .  not seriously 90/52

[tyefly]

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...   

[Rerun]

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! 
                           

[Rerun]

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!

                                                 

[RichardMEL]

Lol Dan - great minds think alike!!!

I too thought of that other kind of movement..but it's covered in another thread anyway

[Stoday]

Two years ago I had ulcerative colitis. There's no way I could have survived an hour without movement, never mind four.

 

[Jean]

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.