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Author Topic: Totally PO'ed  (Read 6553 times)
7piglets
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Me and the boys
« on: March 26, 2008, 11:21:59 AM »
I was one week (One Ekg and stress test) away from getting on kidney list and now I get a call today that my cancer has returned and in mylung...
It is bad enough I have cancer lets add some salt in the wound and tell me BTW now you cant get on kidney list until you are cancer free for 2+yrs..however, if you were on list we would just put you in inactive status but still get your time in ...
arghhhhhhhhhh :banghead;
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kellyt
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« Reply #1 on: March 26, 2008, 11:36:24 AM »
That's horrible.  I am so sorry!

I was placed on Status 7 on Dec 5th and "activated" on Feb. 13th.  They placed me on Status 7 first because I had just begun my transplant testing in Oct 2007.  Did they say they were going to put you on under Status 7 or just that "if you were already on the list" they could put you on Status 7?

Again, I'm so sorry!
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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
7piglets
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Me and the boys
« Reply #2 on: March 26, 2008, 11:42:06 AM »
they said I can't get on the list...IF I was on list then they would put me on inactive status (Is that what Status 7 is ?)
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okarol
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« Reply #3 on: March 26, 2008, 12:09:10 PM »
I am so sorry to hear this about the cancer. What will they do to treat it?
I believe you still accrue wait time if you're on dialysis, listed or not.
A candidate listed as Status 7 is temporarily inactive. Candidates who are considered to be temporarily unsuitable transplant candidates are listed as Status 7, temporarily inactive.
 :grouphug;
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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
Deanne
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« Reply #4 on: March 26, 2008, 12:27:52 PM »
I am so sorry!  :grouphug;
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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
paddbear0000
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« Reply #5 on: March 26, 2008, 12:34:29 PM »
I'm so sorry!  :big hug: :big hug: :big hug:
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
KR Cincy
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« Reply #6 on: March 26, 2008, 12:45:27 PM »
I lost both my kidneys to cancer last year so I know firsthand what a bitch it can be. I'm being screened regularly in case it comes back...if it does, it'll probably be on my lungs...so you know I'm pulling for you with the biopsy! It's helped me to talk to a apecialized cancer counselor...she works for a local agency and it doesn't cost me anything, but she has been a big help during some pretty dark times. With all those chillun' around, not sure when ou'd have time to go, but I'd certainly encourage it.

Good luck and keep us updated. My cancer keeps me off the list for 5 years, so I'm hoping you can beat this and get on that list!
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Not giving up...thanks to Susan.
twirl
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« Reply #7 on: March 26, 2008, 12:48:53 PM »
I am so sad.
you have a couple of adorable boys
I will pray for you and God Bless
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kellyt
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« Reply #8 on: March 26, 2008, 12:52:19 PM »
Quote from: okarol on March 26, 2008, 12:09:10 PM
I am so sorry to hear this about the cancer. What will they do to treat it?
I believe you still accrue wait time if you're on dialysis, listed or not.
A candidate listed as Status 7 is temporarily inactive. Candidates who are considered to be temporarily unsuitable transplant candidates are listed as Status 7, temporarily inactive.
 :grouphug;


That is really good to know!  I met a 76-year-old man at my transplant evaluation back in Oct.  He was and still is on dialysis.  He was just placed on the list as Status 7, but I wonder if he knows he's been accruing time since he started dialysis?  Are you 100% sure on that, cause I would love to tell him if he doesn't know!

It's amazing how much I learn here on IHD, tell my new friend and then he confirms with his coordinator.   Why can't our coordinators and/or transplant team inform us about all this during the evaluation?  It's no wonder there are so many of us out there who have no idea about our disease and/or treatment!  It's frustrating!!
Thanks Okarol!
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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
paris
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« Reply #9 on: March 26, 2008, 12:53:14 PM »
Wow, you just can't catch a break right now. I am so sorry for everything you a dealing with.  It really is too much for one person.  I'll keep saying lots of prayers for you and your family.  :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
KT0930
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« Reply #10 on: March 26, 2008, 12:58:20 PM »
So sorry to hear this.  :grouphug;
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
KICKSTART
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In da House.
« Reply #11 on: March 26, 2008, 01:03:08 PM »
 :cuddle; so sorry to hear this, thinking of you.
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
lola
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« Reply #12 on: March 26, 2008, 01:08:44 PM »
 :cuddle;
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www.caringbridge.org/visit/ottomachado
angellady07
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« Reply #13 on: March 26, 2008, 01:10:31 PM »
Sorry to hear this. Sending prayers your way.  :cuddle;
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willieandwinnie
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« Reply #14 on: March 26, 2008, 01:18:07 PM »
7piglets, I am so sorry. Please know you are in my thoughts and prayers.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
Ang
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« Reply #15 on: March 26, 2008, 03:36:10 PM »
7piglets  keep :boxing;

in  australia  you  accrue  time  from  when  you  start  dialysis,don't  know  what  its  like  other  places
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live  life  to  the  full  and you won't  die  wondering
kidney4traci
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« Reply #16 on: March 26, 2008, 03:45:28 PM »
I am sorry to hear the troubles you have been through.  I missed your intro and just went and read it.  It sounds like you are due a good turn of events.  Pray it gets better for you.  I don't have cancer, but I know the woes of dialysis and the transplant list. 
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Married - three children.
Alports female, diagnosed ESRD 10/04
11/04  Hemo in clinic
6/07 hemo at HOME! 
2/3/09 - Transplant from an angel of a friend!!!
del
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del and willowtreewren meet
« Reply #17 on: March 26, 2008, 04:09:56 PM »
So sorry  :cuddle;
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Don't take your organs to heaven.  Heaven knows we need them here.
annabanana
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« Reply #18 on: March 26, 2008, 04:37:53 PM »
That's so sad. What a giant let-down. My thoughts are with you.
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caregiver to Randy:
HepC and stage 4 ckd
1 kidney removed (cancer)Aug07
Romona
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« Reply #19 on: March 26, 2008, 08:26:52 PM »
 :grouphug;
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Phillip_20
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« Reply #20 on: March 26, 2008, 08:58:27 PM »
Wow... I'm SO sorry to hear that. You are in my thoughts and prayers :grouphug;
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Mimi
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For any who do not like me I use - prayer.
« Reply #21 on: March 26, 2008, 10:00:38 PM »
My goodness that just sucks.  How are they going to treat the cancer in the lung?
Please know that you are in my heart and prayers.

Love, Mimi
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Death is not extinguishing the light;
it is putting out the lamp because the dawn has come.
skyedogrocks
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Rob showing off his pot of gold!
« Reply #22 on: March 27, 2008, 11:27:55 AM »
Oh I am so sorry to hear this.  I will say extra prayers for you, you deserve to have good news come your way.   :big hug:
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Wife to Rob who is currently doing Nx Stage Home Hemo Dialysis.

11/17/09 After 4 years on dialysis, Rob received a kidney from our George.  Kidney is working great!  YEAH!!!!
Psim
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« Reply #23 on: March 27, 2008, 11:56:22 AM »
Thinking of you, sending hopes and prayers.
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Slywalker
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« Reply #24 on: March 28, 2008, 04:59:23 AM »
Sorry to hear the news 7piglets.  Some days it is hard to catch a break!!!  I do wish you good luck fighting the cancer.  that in itself is a tough thing to get through.

Hang in there.

Sandyb   :grouphug;


 :bunny:
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