Angelicfury
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« on: February 04, 2014, 12:06:15 PM » |
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I know that I'm more of a lurker but I have been impacted tremendously by everyone here. I wanted to say thank you to everyone and let you all know I got the call. I felt it very important to share the information with those who are close to me. All of you.
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Has thou felt the fury of an Angel . . . .
In-center 7/7/08
4.5 hrs 3x wk
Formerly 161.8 Kg
Currently 129 Kg (dry)
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Deanne
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« Reply #1 on: February 04, 2014, 12:17:53 PM » |
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Congratulations!  Are you waiting for surgery or home recovering? Did everything go well? |
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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
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Angelicfury
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« Reply #2 on: February 04, 2014, 12:19:42 PM » |
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Sitting in the Transplant office waiting for them to call me back so I can get the pre tests done.
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Has thou felt the fury of an Angel . . . .
In-center 7/7/08
4.5 hrs 3x wk
Formerly 161.8 Kg
Currently 129 Kg (dry)
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Deanne
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« Reply #3 on: February 04, 2014, 12:27:04 PM » |
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Fingers crossed for you! I'm waiting (im)patiently for the call and can only imagine the excitement, possibly mingled with a bit of fear.
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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
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Angelicfury
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« Reply #4 on: February 04, 2014, 12:57:16 PM » |
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It was a rough ride since I've been dealing with MRSA for the last few years. But hopefully my days of home hemo are over.
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Has thou felt the fury of an Angel . . . .
In-center 7/7/08
4.5 hrs 3x wk
Formerly 161.8 Kg
Currently 129 Kg (dry)
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Darthvadar
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« Reply #5 on: February 04, 2014, 01:25:17 PM » |
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Thinking of and praying for you and the donor family...
God bless...
Darth....
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
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Angelicfury
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« Reply #6 on: February 04, 2014, 02:21:28 PM » |
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Update: Kidney did not pass the biopsy and flow test. Going back home. Thank you for the kind words.
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Has thou felt the fury of an Angel . . . .
In-center 7/7/08
4.5 hrs 3x wk
Formerly 161.8 Kg
Currently 129 Kg (dry)
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Big E
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« Reply #7 on: February 04, 2014, 02:24:14 PM » |
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I'm so sorry. What an awful letdown.
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PKD diagnosed June 1996
Started in-center hemodialysis May 2010
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MooseMom
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« Reply #8 on: February 04, 2014, 02:52:57 PM » |
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I'm sorry to hear this. It must be terribly disappointing for you. On the other hand, you want your new kidney to be as near perfect as possible. You don't want to go through surgery, etc, with a kidney that did not pass basic testing. I'm glad to hear that you got a call, though! That's a great sign!
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"Eggs are so inadequate, don't you think? I mean, they ought to be able to become anything, but instead you always get a chicken. Or a duck. Or whatever they're programmed to be. You never get anything interesting, like regret, or the middle of last week."
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Darthvadar
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« Reply #10 on: February 04, 2014, 08:12:41 PM » |
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Sorry to hear that!...
Glad the problem was discovered now though, rather than cause all sorts of problems later...
Better luck next time....
Darth.....
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
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Angelicfury
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« Reply #11 on: February 05, 2014, 05:48:38 AM » |
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Yeah, it's hard to deal with in this situation. Hopes and dreams crushed like a grape in the hands of a toddler. At least they called me in right?
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Has thou felt the fury of an Angel . . . .
In-center 7/7/08
4.5 hrs 3x wk
Formerly 161.8 Kg
Currently 129 Kg (dry)
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jeannea
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« Reply #12 on: February 05, 2014, 05:59:08 AM » |
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Yes, at least they called. You'll get another call. It's sad to not get the kidney but you don't want one that won't work. Hang in there!
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ToddB0130
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« Reply #13 on: February 06, 2014, 03:14:20 PM » |
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Sorry for your loss. Here's hoping that soon you'll get a call for a healthy perfect match.
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No day but today
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cassandra
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« Reply #14 on: February 06, 2014, 03:21:34 PM » |
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 Love, Cas
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I started out with nothing and I still have most of it left
1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96
still on waitinglist, still ok I think
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Angelicfury
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« Reply #15 on: May 20, 2014, 06:28:45 PM » |
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Update: Got the call again. New kidney is working great. Ever since I was a teenager I've had to see a Nephrologist due to 2+ in the urine. Blood test from Monday showed a 1.2. The new one works better than my originals ever did.
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Has thou felt the fury of an Angel . . . .
In-center 7/7/08
4.5 hrs 3x wk
Formerly 161.8 Kg
Currently 129 Kg (dry)
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Bambino_Bear
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« Reply #16 on: May 20, 2014, 07:16:22 PM » |
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I am a caregiver to my wonderful husband, He is 4p and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go.
He had a transplant in November 2019.
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MooseMom
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« Reply #17 on: May 20, 2014, 08:25:37 PM » |
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THIS IS WONDERFUL NEWS!!!! CONGRATULATIONS!!!
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"Eggs are so inadequate, don't you think? I mean, they ought to be able to become anything, but instead you always get a chicken. Or a duck. Or whatever they're programmed to be. You never get anything interesting, like regret, or the middle of last week."
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cassandra
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« Reply #18 on: May 21, 2014, 02:05:53 AM » |
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Fantastic news!!!  Have an extra drink on me, love, Cas |
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I started out with nothing and I still have most of it left
1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96
still on waitinglist, still ok I think
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Ninanna
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« Reply #19 on: May 21, 2014, 04:50:45 AM » |
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Congrats! So glad it's working great!  |
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
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cariad
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« Reply #20 on: May 21, 2014, 07:44:15 AM » |
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Glad to hear you got your kidney in the end! Drink up! |
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria
People have hope in me. - John Bul Dau, Sudanese Lost Boy
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Angelicfury
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« Reply #21 on: May 21, 2014, 10:31:36 AM » |
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Thank you for your thoughts and prayers. It's hard to eat and drink after seven years of restrictions (still can't finish a plate of food) but I'm not going to complain and enjoy the blessing I was given.
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Has thou felt the fury of an Angel . . . .
In-center 7/7/08
4.5 hrs 3x wk
Formerly 161.8 Kg
Currently 129 Kg (dry)
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MooseMom
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« Reply #22 on: May 21, 2014, 10:33:59 AM » |
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It takes some time to get your appetite back after any kind of major surgery. You'll get there.
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"Eggs are so inadequate, don't you think? I mean, they ought to be able to become anything, but instead you always get a chicken. Or a duck. Or whatever they're programmed to be. You never get anything interesting, like regret, or the middle of last week."
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jeannea
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« Reply #23 on: May 21, 2014, 11:32:18 AM » |
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That's great news!
For me, the eating thing was as much psychological as physical. We spend years with Don't Eat That and then 2 days after surgery there's a plate full of forbidden foods. It's very strange.
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SooMK
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« Reply #24 on: May 21, 2014, 11:42:41 AM » |
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This is such great news. Congrats!
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
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