movement during dialysis

[YLGuy]

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. 

[boclark54]

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,

[twirl]

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

[Ken Shelmerdine]

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.

[dwcrawford]

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?

[RichardMEL]

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.....

[tyefly]

  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.......

[Adam_W]

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

[Jean]

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.

[RichardMEL]

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

[Jean]

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.?

[RichardMEL]

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.

[willowtreewren]

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

[Jean]

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....

[Stoday]

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.

[willowtreewren]

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. 

[Jean]

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.

[marti824]

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!

[Jean]

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.

[Stoday]

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.

[RichardMEL]

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.