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KICKSTART
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« on: July 22, 2010, 02:44:40 PM »

come to dialysis to be comfortable  :Kit n Stik; you do not come to dialysis for understanding  :Kit n Stik; you certainly do not come and eat and drink  :Kit n Stik; you do not come to dialysis and talk  :Kit n Stik; you do not come to dialysis to be warm/cool  :Kit n Stik;
We would prefer it if you came , got in your chair , slept for the whole time, got up and went home  :2thumbsup;

YES im MAD ! After spending half my day in A & E the other day , i went in for dialysis prepared today. I trailed round, spent good money and finally found one of those wheatgerm pillows you put in the microwave (as recommended by the doctor at A & E .
Excuse me ..could someone pop this in the microwave for me? it only needs 90 seconds . NO ..simple answer you cant have that in here . I can fully understand why people get so p****d off , they are REAL lucky i can control my temper ! :boxing;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Riki
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« Reply #1 on: July 22, 2010, 03:38:56 PM »

Holy crap.  What the hell is that deal?  The nurses at my unit will make you a cup of tea if you ask nice.  They get that you don't really want to be there and they try to make you as comfortable as possible while you are there.
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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
natnnnat
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« Reply #2 on: July 22, 2010, 06:43:58 PM »

Whaaaaaaaaaaaaaaaaaat? 
I wonder if there are many nurses at your clinic?  If there are a few, you could try my approach to beaurocracy:  each day, ring again and ask just as sweetly as before, you always get a new person and one in 6 says yes!  That tactic worked at the tax office, worked at Social Security...
Meanwhile, did you try the bag out at home?  Did it help?  Hope so.  Neck seizure = misery.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
thegrammalady
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« Reply #3 on: July 22, 2010, 06:46:37 PM »

i worry about you. never in 4 years has my clinic ever told me i couldn't use something i brought with me.
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« Reply #4 on: July 22, 2010, 06:49:15 PM »

NO ..simple answer you cant have that in here .

You can't have that in here?  What is it, a rat?  A joint?  Come on, KS:  No gigolos either.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
RightSide
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« Reply #5 on: July 22, 2010, 07:09:33 PM »

KICKSTART,

That's terrible.

But I am curious:

Is it just the nurses at your dialysis center who act that way,
or is this just how the British NHS treats everybody?
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RichardMEL
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« Reply #6 on: July 22, 2010, 09:35:25 PM »

I think the same people that look after kristina clearly seem to "look after" (in the most general sense) KS.

Geez, pathetic. No understanding or compassion there. I think my unit's nurses would be aghast. They'd do the microwave thing if they had time. Sure, it's not technically their job to do that sort of stuff, but like the other say they know we don't want to be there, and any little thing that helps us is better for them too.

Just yesterday I was allocated a spot I hadn't been in for months, and I forgot that the nearest power outlet is quite some distance from the chair and I was concerned my laptop cable may not quite be long enough. The nurse said oh I can go find an extension cord for you... but it was actually OK in the end. Still, it was so nice of her to offer.

KS you seem to have the unit from hell :(
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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!
Jean
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« Reply #7 on: July 22, 2010, 11:45:43 PM »

KS, tomorrow morning when you get up, go outside and look up into the sky and see if there is one little dark cloud directly over your head. I truly think you need to change units if you can.,as that nurse's attitude is just moronic. Anything that only takes 90 seconds cant be that much of a problem. And, not to allow a pillow? Hello????
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One day at a time, thats all I can do.
KICKSTART
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« Reply #8 on: July 23, 2010, 04:30:06 AM »

I know our units crazy ! We are a 'nurse lead' clinic which means there are no doctors at the unit. So the only way to get to my neph is through the nurses ..yep !  I wouldnt say any of the nurses are actually horrible more ..no compassion ..more like the standard nurse who sees a patient come in , gives the basic care the sees that patient go home well ! I seriously think we need more the Macmillan type of nurses , who will go that extra step to help you. I think because i seem to have a few more problems than other patients im deemed a pain in the a**. They still stick me under the main lights , now it seems i wont get any help with my neck and then they have the nerve to have a go at me because i cant do my 4 hours for pain or migraine. Im really at a loss now. I just see dialysis as torture , because for me it is. I dread going in now. Because i couldnt use my neck wrap i asked for extra pillows to support my head ..we havent got any they said , i was stuck slap bang in the middle of the room ablaze with those dreaded lights and the air conditioning blowing freezing on the top of my head. I told the nurse it was freezing , she stood there for about 30 seconds , said oh yes isnt it , then walked off ! I wouldnt care we havent got the nurses to do those little tasks, we have what are called health care assistants (they havent made the grade) who do all the menial stuff to save the qualified nurses from doing it. But really its the attitude that gets to me . I watch a lot of what goes on ,yesterday it was half hour chat with a returning nurse , catching up and plenty of laughter, but no time for us. To the other day no staff on the floor at all for 15 mins (sister had gone home) now imagine if someone had crashed , and for some reason ALL nurse suffer from CRBA syndrome , every single one of them ! (cant remember bugger all ) because if you ask them something 2 seconds later they CRBA !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Des
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« Reply #9 on: July 23, 2010, 05:01:03 AM »

KS I can honestly say that I know what it feels like to just get enough treatment and nothing more.

Once you complain you are screwed forever.

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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...

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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)
romanyscarlett
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« Reply #10 on: July 23, 2010, 05:22:56 AM »

The people at your dialysis centre sound really mean :(

I'm in the UK too but my unit sounds like the polar opposite from yours. The nurses are so lovely.

When I arrive for treatment, once I'm connected to the machine the nurse will plug my headphones into the wall for me, put them on my head and then go and fetch me a remote control for the tv. I'll be offered biscuits and a cup of tea after about 30mins of treatment. Also, at least twice but usually three times, a nurse will check I'm not too cold and ask me if I want a blanket.

There is one nurse who is a little rough when putting the needles in but that is the only negative thing I have to say about the entire unit. From what I've read, I think I'm very lucky if that's the only thing I have to complain about!
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« Reply #11 on: July 23, 2010, 07:12:44 AM »

Is it just the nurses at your dialysis center who act that way,
or is this just how the British NHS treats everybody?
I hope the following answers your question ... !

The people at your dialysis centre sound really mean :(

I'm in the UK too but my unit sounds like the polar opposite from yours. The nurses are so lovely.

When I arrive for treatment, once I'm connected to the machine the nurse will plug my headphones into the wall for me, put them on my head and then go and fetch me a remote control for the tv. I'll be offered biscuits and a cup of tea after about 30mins of treatment. Also, at least twice but usually three times, a nurse will check I'm not too cold and ask me if I want a blanket.

There is one nurse who is a little rough when putting the needles in but that is the only negative thing I have to say about the entire unit. From what I've read, I think I'm very lucky if that's the only thing I have to complain about!
Blokey's unit seem to be more-or-less okay too.

KS, I agree with romanyscarlett ... the folk at your unit do sound really mean and horrid.  You poor thing. 

*hugs*
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RichardMEL
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« Reply #12 on: July 23, 2010, 07:26:07 AM »

Yes, we have the PSA's which are like your health care attendants. The usual one is a former Flight Attendant (!) and is the most wonderful lady ever. We all love her. She's so lovely and she DOES do the menial stuff, and is always cheerful. She cleans the chairs and machines, gets us our lunch(well sandwiches and a cup of tea) and blankets and stuff. If anyone wants biscuits, another cup or something she's always happy to. On weekends or when things are a bit slow and one of us offers to pony up the cash, she'll go and pick up real coffees (make mine a Latte!). Sometimes one of the nurses will do this also. Of course I always make sure to buy HER a drink too! She went on a big holiday for a month recently and brought us back little gifts!

Sorry KS I guess I'm rubbing it in going on about how nice my unit is. I guess what I'm trying to say is that they're not ALL the same, and I think some of the other UKers here have said as much. Wouldn't want someone reading to think they're all so 'orrible.

I just hope somehow you can get off the "treat like dirt" list and be treated more respetfully and with some consideration.
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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!
KICKSTART
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« Reply #13 on: July 23, 2010, 07:34:30 AM »

Thanks RM (is it not your bedtime?  :rofl;)  I cant say the unit is horrible , not to the extent Kristina used to say ! Its just they do the very basics, and i mean the very basics. Comfort, consideration and compassion do not enter into our nurses duties. As long as you are on the machine , its doing its job and you stay there for 4 hours , then there job is done ! I honestly get the impression of ..well i didnt train for x number of years to make you comfortable !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
billybags
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« Reply #14 on: July 23, 2010, 08:08:49 AM »

KS have you looked more into doing home hemo, they are trying to promote it more in Nottingham. With you living near your mum could you not try and drag her into helping you.
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KICKSTART
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« Reply #15 on: July 23, 2010, 10:58:51 AM »

I would love to do home hemo ..but it would be along way down the line , not even having a fistula yet! Tbh i think they would be glad to be rid of me !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
paris
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« Reply #16 on: July 23, 2010, 12:17:09 PM »

If those nurses only knew how much a little kindness makes a difference.  I don't understand.  They need to find a new profession.  Wish we could help you.  Sending lots of love and good thoughts.
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« Reply #17 on: July 23, 2010, 01:06:23 PM »

Oh, heck.  My nurses wouldn't reheat mine either, but it was more about clinic rules about what was allowed to pass from the clinic area into the break room where the micro was located.  I used one I made with uncooked white rice.  So I nuked the living daylights out of it when I was home, and brought it along, still too hot to touch.  It tended to get scorched, and smelled rather odd.  They complained about the smell, but oh well!

You also need to take a note from Rerun.  Get a small, very dark umbrella, and loft it over your head.  It will block out the lights and the draft.  Bring your own pillows as well.  You already don't get along, so when they bitch, just tell them you'll have them charged with theft if they try to take them away!
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KICKSTART
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« Reply #18 on: July 23, 2010, 01:26:34 PM »

jbeany ..hehe  much as i would love to do all that i can tell you straight away that i wouldnt be 'allowed to bring in an umbrella or my own pillows, it seems there is some sort of ratio of things allowed in to prevent cross infection ! Yet get this , yesterday they put me next to an old guy , who they where drawing bloods from to test because they thought he had a virus/infection ..great eh , talk about double standards !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
kevno
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« Reply #19 on: July 23, 2010, 03:11:24 PM »

YOU DO  :boxing; Torment the staff. Whined some of the staff up on purpose  :bandance; Bring your own food and drink in ( only trouble is the nurses some times mug me for the chocolate bar >:( ) . Plus The Nurses usually give me more back than i give  :sarcasm; But if you give it. You must take it :oops; 
« Last Edit: July 23, 2010, 03:14:09 PM by kevno » Logged

But this little saying keeps me going!!

"RENAL PATIENTS NEVER GIVE UP!!!!!!"
KICKSTART
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« Reply #20 on: July 23, 2010, 03:29:16 PM »

I do torment the staff?  Wind some of the staff up on purpose?  Oh yeah i forgot im supposed to sit there and take it , go home with migraines that last 2 days , now i suppose my neck can lock up and the pain hurts like hell . Hey you could join our staff !!!
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
kevno
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« Reply #21 on: July 23, 2010, 03:49:19 PM »

Been at the unit I am on too long! Every time its my turn to be put on the Nurse always says the same thing "HO NO NOT YOU" They seem to know i will give, which ever nurse it is a bit of a hard time. Known some of the nurses for over 13 years on this unit so i get away with a bit more than other patients. I suppose the nurses are use to me by now  ;D Know i am just having a bit of fun with them. But if they get something wrong! They know i will never let it drop :police: So in a sense, we have respect for each other. Which some other patients never seem to get >:(
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But this little saying keeps me going!!

"RENAL PATIENTS NEVER GIVE UP!!!!!!"
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« Reply #22 on: July 23, 2010, 04:58:35 PM »

KickStart, I'll bet your nurses wouldn't do this for you..

Today, a friend of mine messaged me on facebook, and asked if it would be ok to bring me in an iced capp.  I told her that I'd better ask the nurse first.  So I did, and she said it wouldn't be a problem and she adjusted my goal to make up for it.  So, my friend came in, we had a little chat, and I drank my iced capp.  When I got off, I was right on my dry weight.. *G*
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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
jbeany
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« Reply #23 on: July 23, 2010, 05:25:04 PM »

http://www.e4hats.com/_e/dept/17-025/Large_Bill_Microfiber_Sun_Cap.htm

Big sun hat and sunglasses?  Wear a hooded sweatshirt, and sew padding in to the hood so the neck roll pillow is part of your clothes?  If you have to do stealth, we can figure that out, too.

(Kenvo was flippantly talking about what he does to his staff, KS, not what he thinks you do to yours.)
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

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« Reply #24 on: July 23, 2010, 07:50:24 PM »

Wear a hooded sweatshirt, and sew padding in to the hood so the neck roll pillow is part of your clothes?  If you have to do stealth, we can figure that out, too.

 :bow;
jbeany, your inventive genius amazes me.  Yes!  a hooded sweatshirt, with the wheatbag inserted into a tubular pocket around the neck.  Then, last thing at home, nuke the wheatbag, insert in specially designed hoodie neckbag pocket, roll up the hoodie, shove the hoodie into your carry bag.  The hoodie and the carry bag will insulate the wheatbag, keeping it hot.  The neckbag pocket will keep the hot bag from burning your neck (I put my bag in a towel for that reason).

Arrive at dialysis, [yawn, stretch] Pull out hoodie, pop it on.  Lie back.  Smiling sweetly at the dementors nurses.  Make pleasant chit chat.  I always enjoy treating rude people well, so that their rudeness becomes even more stark and apparent.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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