What do you do whilst on dialysis?

[kristina]

Has anyone any ideas what to do at the long dialysis sessions? Can we use a laptop (to keep in touch with IHD  ) or does it interfere with medical instruments? Can we use our own DVD- or CD-recorder with ear-phones? I haven't quite reached dialysis-stage yet, so I don't know what is allowed, or what a patient is capable of doing whilst on dialysis. Is it possible to read a book or work on some project or other or is it too exhausting and patients are too unwell during dialysis? Is it possible to concentrate? Has anyone got any thoughts on this because it sounds rather daunting and complicated. Thanks for your thoughts, Kristina.

[draven]

I used my laptop all the time when i was on dialysis. in fact it was the only thing that kept me sane for those 4 hours. im sure you can use a laptop at your center. i can really recommand a ipod or mp3 player.

[RichardMEL]

I use:

* ipod
* laptop
* radio (to listen to football games which usually are only good for upping my blood pressure and induce more pain than the needles  )

oh and when all else fails I use my mouth! (as in talking you dirty minded people!)

I've never heard of a dialysis center not allowing use of a laptop, cell phone or ipod etc but who knows there may be an exception out there.

Other folks in my unit use portable dvd players, or sleep (still don't know how they do it on those chairs ) or talk to visitors or whatever.

[swramsay]

Has anyone any ideas what to do at the long dialysis sessions? Can we use a laptop (to keep in touch with IHD  ) or does it interfere with medical instruments? Can we use our own DVD- or CD-recorder with ear-phones? I haven't quite reached dialysis-stage yet, so I don't know what is allowed, or what a patient is capable of doing whilst on dialysis. Is it possible to read a book or work on some project or other or is it too exhausting and patients are too unwell during dialysis? Is it possible to concentrate? Has anyone got any thoughts on this because it sounds rather daunting and complicated. Thanks for your thoughts, Kristina.

Yes...all of the above plus the centers that I went to have televisions.

[Rerun]

If you have a catheter then both hands will be free to knit or use both hands to hold a book.  Otherwise you will only have one hand.  Some people still move with needles in their arm but I call them "stupid".

I take my portable DVD player and subscribe to Netflix on the 3 DVD plan.  Works out perfect if I remember to mail them back.

At first you will be looking at everything and maybe not be able to focus on much.  There is a lot to take in at first.

[msleeter]

The center I go to has individual tv's so I end up either watching tv or reading a book or listening to my iPod. Most days, however, I end up falling asleep for an hour or so.  But it helps the time go by faster 

[twirl]

I sneak eat --- I have permission to eat but fellow patients do not and I don't want them to know that I eat and they can't -- but I see them sneaking too.
I used to grade papers and grade papers of other teachers --- that really passed the time-

how do you do a laptop with one hand ?

I got a pedaler to use but it walks and gets too hot ---- bike with only the part for you legs
- you do not have to stand up -- I am taking it back to Walmart  --- the more expensive ones would work better - but I think I do not want one

I also am a clock watcher which sucks

I watch tv but am sick of the programs that are on between 6 - 10 am.
I have a dvd but I hardly ever get a movie -
sleeping is out of the question --- my chair is the first one by the nurse station.
I used to do brain teasers on this little game thing but I got tired of that and I also played games
on different hand held games I would get at TOYS  R US but tired of that -
sometime I read and when I have good book time goes by faster -

we are not allowed to have visitors --- they have to put on a gown and can only stay less than % minutes
- we used to get visitors unless someone was being placed on but things changed

[cherpep]

When I was in clinic, I couldn't plug anything in.  I could use the laptop or dvd player, but I was limited to the battery time.  At home, I watch ALOT of TV and use my laptop.  They really help time pass.  I get dizzy and light-headed during dialysis, so reading or other projects that require thinking or focusing are out of the question for me.  I do have needles in my arm, but I have no problems typing on the laptop.  It really doesn't require much arm movement, if you do it right.

[Adam_W]

When I'm on dialysis, I usually work on models, draw, do computer related stuff, and sometimes watch TV. When I was in-centre, I only did the first two. I am one of the few "lucky" patients with a very forgiving access as far as movement goes, so even with the needles in, I can still do just about anything with both hands (I just have to be extra careful with how I tape the needles down).

Adam

[Wallyz]

Computer and sleep.

[jbeany]

I usually read.  I've got an upper arm graft, so I have pretty good range of motion, so I've also taken small sewing projects into the center.  When I was on home hemo, I used to do sculpting with polymer clay a lot, but that's too messy for traveling.  My new center lets me use a cell phone, but most of the people I would want to talk to wouldn't want to hear from me at 6am!

[twirl]

we must have the same chair time
 

[paddbear0000]

I use:

* ipod
* laptop
* radio (to listen to football games which usually are only good for upping my blood pressure and induce more pain than the needles  )

oh and when all else fails I use my mouth! (as in talking you dirty minded people!)

I've never heard of a dialysis center not allowing use of a laptop, cell phone or ipod etc but who knows there may be an exception out there.

Other folks in my unit use portable dvd players, or sleep (still don't know how they do it on those chairs ) or talk to visitors or whatever.

My center won't let us use cell phones. It's the dumbest rule though since it's been proven that the cell phone has to actually be touching the equipment for the phone to actually interfere with it (and that's if it's even going to). I mean, who talk on their phone with their head pressed up to machinery anyway? My cell phone is my only phone number and that is what my transplant center will call when I get a kidney!

Kristina, to answer your questions, every clinic is different. There is no set standard for whether you can use a computer, etc. When the time comes to start dialysis, you will have to contact the clinics in your area to find out what they allow and what they don't. My last clinic (it was actually the dialysis unit in the hospital) had wi-fi, wide screen televisions with a large selection of cable channels, the nurses were lenient and said I could snack or drink as long as a certain nurse didn't catch me and you could use your cell phone. The clinic I'm at now however, doesn't have wi-fi, has tiny little televisions (and no cable), you can't even chew gum or hard candy (they are really strict about it too for fear we will choke!) let alone eat or drink and cell phones are strictly forbidden.

To fill my time, I watch movies and tv shows on my laptop and read magazines, the newspaper or a book.

[petey]

Yes, paddbear, all centers are different.  When Marvin was in-center (all total, about nine years -- with a break in the middle for a transplant), his center DID NOT allow cell phones, snacks, drinks, ice, or laptops (no wireless) -- I guess you could have used it without the internet?

They did have those little tvs with the headphones.  That was about it.

Marvin would turn on the tv, put on his earphones, and sleep.  He said it was boring, boring, boring.  He liked "visiting" with the other patients on the way in and the way out, but that was limited when he was on the machine -- especially when he was the last chair and next to the wall.  Since he's had staph and MRSA, he spent many treatments in the "isolation room" -- oh, he hated that.

Now that Marvin's on home hemo, he does NO sleeping.  He's on his laptop (pecking with one hand because he has a mid-arm fistula -- he's good with just his right hand, but kind of slow).  He also has his big tv on, a drink by his side, along with his cell phone and the house phone.  He has visitors come by.  He saves all his "sitting down" chores for his dialysis time.  He fills out his inventory for NxStage, makes his batting line-ups for his youth baseball team, talks on Facebook almost non-stop, and totally hogs the remote control.  Marvin says D passes so much quicker now that he's at home.

[paddbear0000]

I so wish I could do home hemo! Unfortunately the only clinic anywhere near us that offers it is Davita and my insurance company won't cover it.lus, i've met my yearly maximum for durable medical supplies. Arrgghh.

[RightSide]

I do crossword puzzles and other paper puzzles.  I buy those Dell/Penny Press crossword puzzle books.  Crossword puzzles have helped me to improve my vocabulary too.

At home, I have a powerful desktop computer with a large monitor.  I don't want to spend my scarce dollars to buy a laptop just for use at the dialysis center.

[TynyWonder]

I agree with what some others have said................it does depend on each clinic and what each one will allow and won't allow.    However, our clinic use to allow drink/ice but now they won't allow either one!   It sux but I still see people sneaking a drink in but I don't blame them either.   Yeah, I can see maybe why we are not "allowed" something to eat for fear of choking but what is so wrong with a drink or a few ice chips?   Yeah, I realize you can choke on those just as easy but it is not as likely to happen from a drink as it is food.   Our clinic does not have internet access; therefore, it would be of no benefit to me to buy a laptop but sure wish we did have internet access because for those of you who do have that "luxury", I am sure it DOES make time fly by!   

[RichardMEL]

I guess we're pretty lucky in my hospital unit (plus the staff stupidly like me so I suppose I get a little bit of leeway).. I plug in my laptop no issue, use ipod etc. Half the time they come along and want to know what I'm watching. Yesterday some of them watched a bit of Iron Chef with me.. then got upset because they got hungry!  I have a lower arm fistula so I don't move much at all but at least they provide a snack (not a very good one, but it does break up the 5 hour block) and the lovely PSA gives it to me half way through which is very kind and she makes the best cup of tea I also have a bit of water from my own small bottle I bring and take my phosphate binder when I have the snack (renagel) to be a good little munchkin.

It is definitely something to plan for - strategies for coping with boredom because that's what dialysis is 99% boredom. Yeah sometimes there's some "excitement" - either personal (like a crash or cramp or something... a blown needle etc) or someone else (I haven't yet seen a code blue, but I bet I will before my time is done - sadly) and if the staff are nice (like at my unit) then you might find you can chat with them from time to time if they're not too busy - and that helps too. The challenge is definitely there to stay entertained!

[dwcrawford]

This is totally off topic (though I'm working on it) but, Richard, why are fistala sometime lower  arm, as your, and sometimes wrist area or upper arm?  I haven't had the mapping yet (next week) but I think I'd prefer upper arm (and may right arm even though I am right handed).  Does it matter what I prefer and am I all wrong about it?

[RichardMEL]

Well I didn't get a choice re fistula... they took me in, put me under and when I woke up BAM! there it was!!! No just kidding.. they went through it with me but to be honest I don't remember the convo much. However I have since been informed that the lower arm/wrist area is preferred for an initial fistula because should it clot up, fail or whatever they can then form another one in the upper arm HOWEVER if they form the initial one in the upper arm area they can't then go lower (I am not sure why... probably something to do with the blood fvessels being blocked further up so no use further down). So in essence I am happier to have it down lower - yes, it stands out more but if I do have a problem at least I know they can hopefully have another shot in my upper arm before they might have to head to my primary arm, or leg or some other place.

[dwcrawford]

I think I'll ask for it in the upper right arm and then they can have the whole left non dominant arm  later if anything goes wrong with it.  Sounds reasonable to me.

[kristina]

Gosh! There are really lots of things to think about here! Thanks for the many suggestions about what to do in dialysis. It was particularly interested to know that dialysis-units vary considerably in what they allow. Why can't there be a consistency there, it seems strange and unfair. It seems there is more planning involved than I initially thought. Thanks again, Kristina.

[paddbear0000]

I also got a few subscriptions to magazines. I save them and only read them at dialysis. I also get the newspaperr everyday and take that. When I'm done, I give it to one of the men that sits with his wife everyday while she dialyzes.

[Wallyz]

I think I'll ask for it in the upper right arm and then they can have the whole left non dominant arm  later if anything goes wrong with it.  Sounds reasonable to me.

I would suggest doing the right forearm first. Then if that fails you can move tot he upper arm, then the left forearm, then the left upper.

If you do an upper, you cant use the forearm on that side ever.  Give yourself as many options as possible.

[RichardMEL]

I think I'll ask for it in the upper right arm and then they can have the whole left non dominant arm  later if anything goes wrong with it.  Sounds reasonable to me.

I do not agree with this idea.

You say your left arm is non dominant - that means you use your right arm/right handed. This is not a smart move and they probably will not do it that way anyway.

1. You need your primary free and also to do blood pressures on, have needles (non dialysis I mean.. like flu shots or having blood taken out of center etc).

2. You should have the lower arm done first, and on your non dominant arm. If it has a problem they can thus move to the upper arm of that arm. If you do the upper arm they CAN'T move to the lower arm there. Thus that reduces an option.

Get your lower left arm done. That is the best option IMHO.