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Author Topic: I know best , im in housing , you ONLY have kidney failure  (Read 7768 times)
KICKSTART
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In da House.

« on: February 04, 2008, 07:38:38 AM »

As you know i have been trying to move for ages now , to be nearer to my family for support and then consider the transplant list. Today i got a call from a lady at the housing assoc saying they were updating their records. Now on my application , i have put i require a 2 bedroom property, one bedroom and one bedroom for dialysis , supplies etc. The lady starts with , so you live alone ? why do you need more than one bedroom then? (This is despite the fact that there is a letter from my neph and gp strongly saying i need to move, quality of life etc) So i explain to the lady I DO HOME DIALYSIS and need two seperate bedrooms. Her reply , well those machines are a lot smaller nowadays , so i dont see why you need 2 bedrooms. Hang on a mo i said , i do CAPD , i dont have a machine. Her reply , oh right , whats that then ? Tell me what you have to do?  WHAT???You want me to explain to a housing receptionist all about CAPD? you are joking ? All you need to know is i require 2 bedrooms and i do dialysis, i require a sterile area and storage room for my supplies. So she then moved onto , so why do you want to move ? My reply , to be near my family for support etc. Her reply ..so its not on medical grounds then , you ONLY have kidney failure and they dont help you with dialysis then?
Well by this time i was nearly at screaming point with the stupid woman who obviously thinks kidney failure is a walk in the park and no big deal, she also said my doctor had not stated in her letter that i need 2 bedrooms, so i replied no she wouldnt as that wasnt really medical , the same as i dont expect a housing receptionist to comment about kidney failure!!!
She then informed me that she would need to consult 'their' doctor as to if i need 2 bedrooms ..excuse me ? You are going to ask a gp that advises a housing assoc about how much room i need ?
I told her she could go and ask anyone she wanted , but if for one minute she thought it would matter to forget it, i wont compromise my health for anyone , let alone some second rate gp that knows nothing about renal failure and dialysis.
The outcome ? ..shes ringing me back tommorrow with their doctors suggestions ...Bring it on i say !
Im stressed , got high bp , going through a divorce right now and mad as a wasp!!! >:(
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
MyssAnne
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« Reply #1 on: February 04, 2008, 08:19:00 AM »

Oh, KS!!!!

I see that beurocracy (sp?) is alive and well in England as it is here in the United States!!! Why oh WHY do pencil pushers feel the
need to push our buttons and ask stupid questions??????

Give her heck, KS! :boxing; :boxing;
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rose1999
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« Reply #2 on: February 04, 2008, 08:44:01 AM »

Oh to be a fly on the wall tomorrow - you go girl!!!  :clap;
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KT0930
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« Reply #3 on: February 04, 2008, 08:47:36 AM »

I would've told her that the better solution, rather than asking her GP, is for her to come to my place on delivery day and see exactly how many supplies I have, then make a suggestion as to where to store them in a one-bedroom....(of course, I have an idea where SHE could store them!!)   >:D

Give 'em heck, KS!!  :boxing;
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"Dialysis ain't for sissies" ~My wonderful husband
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I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
Adam_W
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« Reply #4 on: February 04, 2008, 11:02:17 AM »

Oh, geeze! What a moron. We shouldn't have to explain every little bit of detail about our treatment to EVERYONE. I'm looking into getting an apartment, and I told the apt. owner that I would need a place with sufficient storage space because I do home dialysis, and she was just like "Oh, OK that won't be a problem". Give her hell, Kickstart.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
The Wife
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« Reply #5 on: February 04, 2008, 11:03:51 AM »

You can add Canada to the list.

I suggest you call back and ask to speak with the supervisor.  If that doesn't work, ask for the name of the head honcho.  I did this once for an old neighbour.  The doctor signed a form that stated he needed either an electric wheelchair or scooter to get out.  He had insurance but the insurance company refused.  When I called, they gave me the run around.  Finally, when I asked for the name and phone number of the CEO, a supervisor suddenly became available to speak with me.  Within a week, he had his scooter.  

Good luck!

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kitkatz
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« Reply #6 on: February 04, 2008, 11:10:26 AM »

Need my big stick?  And what is it to them if you are single and want two bedrooms!  Thhhbbbttt!  Go get them!
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

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
stauffenberg
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« Reply #7 on: February 04, 2008, 11:51:14 AM »

Let's just hope that when she speaks to 'their' doctor, the doctor is a nephrologist or an internal medicine specialist and not a GP, since in my experience, GPs know less about dialysis and renal disease than the average hypochondriac can find out about it in an afternoon of thumbing through 'Reader's Digest.'
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Deanne
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« Reply #8 on: February 04, 2008, 12:32:52 PM »

What about sending her a pictures of how much space your dialysis supplies take?
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
mmmmdeedee
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« Reply #9 on: February 04, 2008, 01:15:25 PM »

Why don't we all send pictures of what our normal load of supplies looks like and how much space it takes up???

Then ask her if she could fit that all into a one bedroom.

Stupid people.
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1st on dialysis: 1986
1st transplant: 1990
1st failure: 05/06
CCPD
2nd transplant 07/24/07
KICKSTART
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In da House.

« Reply #10 on: February 04, 2008, 01:37:01 PM »

Thanks  for al your support guys :2thumbsup; What annoys me the most is having to explain to this person about my dialysis , she was totally clueless in the first place , i felt like saying ..Well firstly i scrub up ..then i drop my drawers .. :rofl; The other thing that annoys me is why should a doctor who doesnt have any renal training or knowledge dictate just how much space i need . You know that saying ..walk a mile in my shoes ..if only ..!!!
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Lori1851
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« Reply #11 on: February 04, 2008, 02:25:07 PM »

What really cracks me up she is the receptionist. You are to get the
 reason their calling , phone # etc. The receptionists job is NOT to ask questions lol! I use to be one! Take the call quick and get off the phone. Someone must not have told her not to tie up the line  LOL!!!!
Geesh dont you wanna say "I see dumb people" lol!!!!
 Lori/Indiana
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kellyt
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« Reply #12 on: February 04, 2008, 02:52:48 PM »

 :boxing; :boxing; :boxing; :boxing; :boxing; :boxing;

Take it to the mat!   :clap;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Joe Paul
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« Reply #13 on: February 04, 2008, 03:11:52 PM »

Said it before, I will say it again - PEOPLE SUCK. The bad part is when we get upset, it hurts us not anyone else. Good luck to you  :thumbup;
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
Romona
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« Reply #14 on: February 04, 2008, 03:41:55 PM »

 :boxing;
Go get 'em!!
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okarol
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« Reply #15 on: February 04, 2008, 06:37:27 PM »

I have always wondered why people who have no clue about chronic illness get put in charge of the destiny of those who need help!   ???
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
George Jung
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« Reply #16 on: February 04, 2008, 06:41:11 PM »

The bad part is when we get upset, it hurts us not anyone else. Good luck to you 

You are absolutely right JP.  We should use our enemies to challenge ourselves to be better people rather than to get upset and all pissed off.  Harboring negative feelings does us no good.

Kickstart, try and show some compassion toward the lady.  She may not be a very happy person and thus her attitude towads you is unkind.  Best wishes in resolving your situation.
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KICKSTART
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In da House.

« Reply #17 on: February 05, 2008, 03:14:27 AM »

The bad part is when we get upset, it hurts us not anyone else. Good luck to you 

You are absolutely right JP.  We should use our enemies to challenge ourselves to be better people rather than to get upset and all pissed off.  Harboring negative feelings does us no good.

Kickstart, try and show some compassion toward the lady.  She may not be a very happy person and thus her attitude towads you is unkind.  Best wishes in resolving your situation.

George easy to say , but bloody hard to do. It wasnt a case of 'attitude' Its a case of someone with no renal knowledge whatsoever telling me what is best for me!! You wouldnt let a car showroom receptionist tell you what you required to do your dialysis would you ? well this is only the same. I think sometimes you need to get angry ,if only to stand up for yourself and stop people walking all over you. I have tried the nice approach in the past and it doesnt get you anywhere. Im sick of being bullied and a doormat because of this illness. Just because i wont be pushed around doesnt make me a bad person, i am a better person , just one that stands up for herself !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Joanniebop
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« Reply #18 on: February 05, 2008, 03:33:05 AM »

There is enough aggravation from just dealing with this disease that you don't need more from some dumb-a** nitwit that is ill-informed and her only purpose in life is to push papers.
Don't let this affect your health with your blood pressure..she's not worth it and as someone else earlier responded, you must go right to the top. Ask for a supervisor.
Good luck!

Joannie
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Joe Paul
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« Reply #19 on: February 05, 2008, 04:01:27 AM »

I just had a thought, why not tell her there ARE 2 of you. You and Dia-lysis. Its is true, I mean you have to live with Dia-lysis until you either get a transplant, or get relief permenant - like, the "D" word. Let them know Dialysis IS your " care giver", without it (her) you would not live. Also let her know you need 2 separate rooms, as you Hate Dia-lysis but as I said, you cant live without it (her). Let her know too - Dia-lysis has lots of box's and 1 room is just not enough , your life is crowded enough with Dia-lysis as it is.

( I hope you get a chuckle from this, maybe its just my bad humor)  :grouphug;
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
KICKSTART
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« Reply #20 on: February 05, 2008, 07:49:24 AM »

RESULT ..RESULT ..RESULT !! :bandance; :bandance; It just goes to show that once in a while you need to stand up for yourself !! The same lady rang back today , with a totally different attitude and said ,'there is no problem with you having 2 bedrooms' woo hoo and just to put the icing on the cake told me im now top of the waiting list !!!! All i need now is a house to come empty near to my family , but at least i got something to hope for now !!!

Thanks guys for all your support , its the hard times that it means so much to me ! :grouphug;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
MyssAnne
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« Reply #21 on: February 05, 2008, 07:51:59 AM »

YAY!!!!!!!!!!! :yahoo; :yahoo; :yahoo; :clap; :clap; :clap; :clap; :clap; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :ukflag; :ukflag;
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Joe Paul
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« Reply #22 on: February 05, 2008, 08:05:37 AM »

Thats great, I am glad all your waiting and standing up for yourself paid off!
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
Joanniebop
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« Reply #23 on: February 05, 2008, 08:35:24 AM »

Great going....good job and

                                                               CONGRATULATIONS!!!!!!!!
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Psim
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« Reply #24 on: February 05, 2008, 09:59:56 AM »

What a great result!! You are my hero for pushing for what you need and not backing down.  :yahoo;  Hope that house comes soon!
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