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Author Topic: How do you get comfortable?  (Read 18735 times)
Bruno
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« on: November 11, 2010, 01:29:10 AM »

Fellow sufferers...forget about your fear of needles...don't worry if the sight of blood makes you feel faint...it's not really a problem if the nurse puts in 50 litres to come off instead of 5 and you immediately faint and go into convulsions...nor does it really matter if dialysis bores you witless...no siree!
I talking about the real problem with dialysis...the one we dare not speak of.
And the minor one that seems to follow so much so that I suspect they may be related.
Yes, numb ass is its name and it is too often accompanied by a sore back for this little black duck not to be very suspicious.
Am I the first on this site to have discovered this dialysis problem? Why was it never mentioned to me when they were sweet-talking me into dialysis?
More importantly, what are all you fellow sufferers doing about it?
And don't tell me you are jumping up and exercising or having a good stretch every now and then - because I've tried that and we had to call an Ambulance. And smoking pot is no good (even if you get a medical certificate) because whilst I've been OK my 3 cats have become addicted and now sleep on my machine making it extremely difficult to use.
So help me here, IHD veterans, how do you handle the NA sydrome and the strange SB phenomenon?
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Ken Shelmerdine
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« Reply #1 on: November 11, 2010, 06:49:41 AM »

Bruno did I read this right? Your cats are potheads? :rofl; :rofl; Did they smoke it or did you putit in their food?? :rofl;

In answer to your question about comfort, you can (in spite of what they might tell you) get out of your chair and step a few paces round as far as your lines wil allow you. Just make sure that if you are needled with a fistula (don't know about a graft so couldn't recomend it) that you don't do any sudden movements with your needled arm.

What you do is get a nurse to turn take your BP and turn  down your pump speed to about 150-200 and get up slowly out of the chair without putting any weight on your fistula arm. I do this anyway because after about 3 hours I have to get up to pee in a bottle. I then just stand up for about 5 minutes, move about a bit. When I get back in my chair I find I feel more comfortable just through having that short break. Hope this helps.

Oh and you could try getting the cats into rehab!!
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Ken
greg10
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« Reply #2 on: November 11, 2010, 08:27:01 AM »

Fellow sufferers...
Yes, numb ass is its name and it is too often accompanied by a sore back for this little black duck not to be very suspicious.
...
So help me here, IHD veterans, how do you handle the NA sydrome and the strange SB phenomenon?
You aussies sure have a way with words  :bow;
Do you have access to the great American invention called the Lazyboy?
http://ihatedialysis.com/forum/index.php?topic=17941.msg312176#msg312176
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Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
jbeany
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« Reply #3 on: November 11, 2010, 11:07:26 AM »

I just kept readjusting the angle of the chair back.  The butt still goes numb, but at least the numb spot moves from place to place as you shift angles.  Standing up never worked for me - I either got dizzy or the movement wiggled the needles too much.
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KICKSTART
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« Reply #4 on: November 11, 2010, 01:21:24 PM »

Ken you talking about getting up on the unit ?  You must be joking! Its totally unheard of in mine ! I have a really bad neck and asked could i sit in a chair to make me more upright (instead of at a hideous angle that puts all the pressure on my neck to support my head) and was told certainly not, you need to remain on the chair/bed type thing at all times !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
needlephobic
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« Reply #5 on: November 11, 2010, 01:36:07 PM »

Ken you talking about getting up on the unit ?  You must be joking! Its totally unheard of in mine ! I have a really bad neck and asked could i sit in a chair to make me more upright (instead of at a hideous angle that puts all the pressure on my neck to support my head) and was told certainly not, you need to remain on the chair/bed type thing at all times !

Who ever said them things were confortable never set in them things long enough I hate them
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KICKSTART
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« Reply #6 on: November 11, 2010, 03:17:22 PM »

I totally agree ! We have one bed by a window (nice i know) but it blows a gale through it, everyone tells the staff about it and they just say 'yes it is draughty isnt it' then walk off !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Phil
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« Reply #7 on: November 11, 2010, 06:26:31 PM »

In my unit there are 2 beds and 10 chairs with adjustable everything.....I'm on the bed.... A few weeks ago I did a session with the chair.....and the chair is WAY more comfortable than the bed in my opinion!
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1993 - Diagnosed with Alport Sindrome
April 2010 - Fistula surgery on right forearm
May 2010 - Started HD
Still waiting for the call!!!!!
sullidog
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« Reply #8 on: November 11, 2010, 06:41:23 PM »

We're suppose to get new charirs tmorrow, one thing that bothers me is when they stick you were you have a lot of scar tissue, god that hurts!
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
RichardMEL
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« Reply #9 on: November 11, 2010, 07:55:55 PM »

wow that SO explains kitty's expression in the pic!!!  :rofl;

Yeah, the chairs are SO uncomfortable.. though the worst part is the current batch we use (a couple of years old) are lightyears ahead of what they had when I started.. omg those things were like grey torture devices!!

I have found I just max up on pillows. I have a pillow for my backside, and a pillow for my back and most times I am OK. I have to shift positions during the 5 hour sessions, but in general apart from major relief to stand up when I get off the machine I don't feel any major back pain or other problems.

Of course having written this tomorrow I'll probably have a shocker, and I'll know to blame the pothead kitty!
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Riki
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« Reply #10 on: November 11, 2010, 10:17:13 PM »

I just shift positions a lot. The chairs we have, have a head rest on the back of them that I have to get the nurses to removed, because I'm too short to benefit from it, and it actually causes neck pain.  My legs get sore too, so I move them around a lot.  I am forever moving the foot rest up so I can push myself up in the chair.  Getting up at the end of the run always feels good, with the full body stretch, and pulling my underwear out of my butt crack.  I"m told that I'm not the only one who does that.
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transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
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Bruno
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« Reply #11 on: November 12, 2010, 12:35:31 AM »

Thanks everyone...it's nice to know that I'm not paranoid and there are other numb ass sufferers out there...even a numb neck pioneer.
You'll all be happy to know I've solved the problem with the cats...yep, I've given up the pot and found whisky. The cats don't mind it but they won't help with the needles anymore.
I'm not sure I want to try a lazy boy...although it has been legalised in Australia I don't think it's been made compulsory yet?
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Ken Shelmerdine
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« Reply #12 on: November 12, 2010, 03:31:52 AM »

Ken you talking about getting up on the unit ?  You must be joking! Its totally unheard of in mine ! I have a really bad neck and asked could i sit in a chair to make me more upright (instead of at a hideous angle that puts all the pressure on my neck to support my head) and was told certainly not, you need to remain on the chair/bed type thing at all times !

Maybe it's because I'm the only one on the unit who can't go more than 3 hours without a pee. My BP stays round about the same whether on or off dialysis so i don't feel dizzy if I stand up. Although I did have to insist in the first place because like you Kickstart I call my own shots. (No pun intended :rofl;) There' no way I'm going to try peeing in one of those plastic bottles while lying down.
« Last Edit: November 12, 2010, 03:35:08 AM by Ken Shelmerdine » Logged

Ken
Stoday
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« Reply #13 on: November 13, 2010, 09:40:04 AM »

Getting up at the end of the run always feels good, with the full body stretch, and pulling my underwear out of my butt crack.  I"m told that I'm not the only one who does that.
Think yourself lucky you're not a bloke. It's a ballsache when your dangly bits don't stay where they are supposed to be.  :rofl;
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Diagnosed stage 3 CKD May 2003
AV fistula placed June 2009
Started hemo July 2010
Heart Attacks June 2005; October 2010; July 2011
Mandyjane
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« Reply #14 on: November 13, 2010, 10:34:27 AM »

This is a great topic  :rofl;

How many pillows do you guys take to dialysis? I'm up to three with my grandma now, but her tush still hurts after a couple hours.  I've tried regular pillows, and fancy wheelchair cushions, but her butt's still numb by the end of the day. 

Jeesh... I just Googled "dialysis chair cushion" and some of those things are really expensive! I bet they're not worth what they cost either. 
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kitkatz
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« Reply #15 on: November 13, 2010, 11:34:49 AM »

I found the egg crate mattress pads worked well on a dialysis chair.
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Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #16 on: November 13, 2010, 02:30:41 PM »

I googled "Pressure relief cushion" which threw up lots of cushions from affordable to sky high prices. Price depended to an extent on type, such as gel, foam etc.

Does anyone use a PR cushion and if so what type?
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Diagnosed stage 3 CKD May 2003
AV fistula placed June 2009
Started hemo July 2010
Heart Attacks June 2005; October 2010; July 2011
KICKSTART
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« Reply #17 on: November 13, 2010, 02:41:18 PM »

No i just have a fat ass !  :rofl;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
billmoria
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« Reply #18 on: November 13, 2010, 02:45:37 PM »

I sit straight back with my feet on the foot rest. This allows me to control cramping. It does give me the numb ass!!!!! I try to shift positions on the chair.
Actually I find the best thing is to keep busy. I use my computer or my kindle and TRY NOT TO LOOK AT CLOCK!
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WMoriarty
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« Reply #19 on: November 13, 2010, 05:12:02 PM »

I used to use a lamb woolen throw over. It did help. Took ages to find the 'right' pillow.
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Started Hemodialysis Anzac Day 2005
Patiently waiting for a transplant
Started PD New Year 2010
Taken off transpalnt list, Jan 211
Riki
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« Reply #20 on: November 13, 2010, 07:57:45 PM »

I don't use any pillows, except for the one under my arm.. and sometimes I don't even bother with a blanket.. but others in the unit sit on pillows and have blankets behind their heads.. one lady takes in a neck pillow with her.  We have a couple of cushions, but I never use them.  The youngest in the unit uses it, though.. that could be because of her size, though.  Due to her various health issues, she never really grew much.  She's not a whole lot more than 3ft tall.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
Des
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« Reply #21 on: November 17, 2010, 01:43:23 AM »

Lately I take a "travel pillow" with. The one you use on a plane (U-shaped) This is very comfortable. At least when I fall asleep at least I won't be snoring.   :)
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
casper2636
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« Reply #22 on: November 17, 2010, 04:38:38 AM »

I find it hard to get comfortable too, but I bend my knees and use the foot rest. The thing that bothers me the most is that my underwear ALWAYS gives me this massive wedgie! And there is only so much room to keep pulling it out...One handed!!
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Riki
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« Reply #23 on: November 17, 2010, 11:12:17 PM »

One thing about D.. you learn to do a lot of things one handed.  I've learned to untangle my earphones, text, and unwrap candies with one hand.  I'm actually quite proud of myself. *L*
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
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billmoria
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« Reply #24 on: November 18, 2010, 01:29:18 PM »

You are so right Riki - I had a friend who played golf with one hand. I marveled at the time but after trying to read in dialysis with one hand  (solved with kindle) I now understand how fantastic he was doing everything in everyday life. 

Now, Casper  - I know you are a female - so I don't know if this would work for you but:  The only way to go is commando!   :sir ken;   I wear a track suit bottom and it is much more comfortable.
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WMoriarty
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