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Author Topic: I had to move  (Read 3352 times)
Adam_W
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Me with Baron von Fresenius
« on: August 27, 2013, 04:53:02 PM »
Because my health is so unpredictable, my dr. and family insisted I move to an assisted living facility. I've been there five days and I can't stand it! I feel like I am living in a nursing home. There is no one my age and I feel like I can't fit in. I can come an go as I please, but I still don't have the independence than I'm used to having. I also lose all but 52 dollars per month of my disability pay.The staff keep telling me I'll get used to it and I'll like it but right now I don't believe them. I also live in a city 10 times larger than where I used to live. I hate that. 
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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"
willowtreewren
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My two beautifull granddaughters

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« Reply #1 on: August 27, 2013, 05:38:23 PM »
That really sucks, Adam.  :cuddle;
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Icare
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« Reply #2 on: August 27, 2013, 06:08:14 PM »
 Adam
 I wish I could say what I was thinking! But I didn't know all the details why your family would put you in assisted living. I work and take care of my wife,clean,shop,laundry you name it. But it would be a last resort to give her to someone else! All I can say is I will pray for you that your family could get you home.
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jbeany
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Cattitude
« Reply #3 on: August 27, 2013, 07:46:59 PM »
$52 a month?  So you can leave whenever you want, but you can't afford to do anything once you walk out the door...  ugh.

I'm guessing you've already lost the money for this month, so that's going to limit your options for leaving anyhow.  Maybe set a solid date, just before they take the next check.  Either you've figured out how to live with it, or you move then?  Then no one could say you didn't give it a shot - and anything is easier to endure with an expiration date.

 :cuddle;
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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.
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #4 on: August 27, 2013, 10:00:03 PM »
It seems like unpredictable health goes hand in hand with dialysis (or CKD.)
What kind of help do you need that you cannot live on your own?
Can your family help you?
I hope you can live somewhere that makes you happy.  :cuddle;
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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
Jean
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« Reply #5 on: August 28, 2013, 01:40:59 AM »
That sounds just plain stupid!!!! You are far too young for that type of a setting. Could you maybe rent a room from someone nearby???At least you would not be alone then.
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One day at a time, thats all I can do.
Sugarlump
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10 years on and off dialysis
« Reply #6 on: September 09, 2013, 12:20:33 PM »
I would hate that too  :Kit n Stik;
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
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