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Author Topic: Glad to find you from Texas!  (Read 3338 times)
Concerned Step-Mom
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« on: October 24, 2013, 05:28:18 AM »

My step-daughter started dialysis in '98, got a transplant in 2009, which failed last spring. She has been very ill over the years and required a lot of support from her father, mother, and me. She is now in the hospital, and once again giving us quite a scare. I am glad to find a place for support and information. I always seem to be the one that gets on the internet to educate myself as much as possible in order to help her. Thanks for letting me join!
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Step-mother to a 44 yr. old that went on dialysis '98, at 29 yrs of age
Got transplant '09, lost early '13
Has Lupus; now diagnosed with calciphylaxis
Been very involved in medical care
Believe in Patient Advocacy
UkrainianTracksuit
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« Reply #1 on: October 24, 2013, 06:01:04 AM »

 :welcomesign; and sending best wishes to your step-daughter.  It's wonderful she has such a support system around her.
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Concerned Step-Mom
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« Reply #2 on: October 24, 2013, 07:43:23 AM »

Thanks. She has been in the hospital for 4 weeks now for calciphylaxis, has had 2 surgeries, and scheduled for another tomorrow. She isn't doing well at all. I am hoping to find some helpful info here.  :sos;
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Step-mother to a 44 yr. old that went on dialysis '98, at 29 yrs of age
Got transplant '09, lost early '13
Has Lupus; now diagnosed with calciphylaxis
Been very involved in medical care
Believe in Patient Advocacy
Rerun
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Going through life tied to a chair!

« Reply #3 on: October 24, 2013, 08:21:03 AM »

Hi, I hope she is doing better today...  How old is she?

Rerun, Moderator    :welcomesign;
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MooseMom
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« Reply #4 on: October 24, 2013, 08:28:22 AM »

Stepmoms are special people and are very much underappreciated.
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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."
Concerned Step-Mom
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« Reply #5 on: October 24, 2013, 08:34:31 AM »

She is 44 yrs. old now, and she isn't doing well today, either. She has been on so many narcotics for the pain, she is hallucinating. However, the pain is so great it is hard to reduce the pain meds. It is just a tough situation. They did dialyze her an extra day yesterday, to try and get her calcium down, and get rid of some of the narcotics. It caused her pain to worsen. The debriding they did on one of her ulcers has more necrosis, so surgery is scheduled early in the morning. She is on a downhill slide. She has been on dialysis for 15 yrs , and she has had close calls before. This is the worst, and I feel so bad for her.
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Step-mother to a 44 yr. old that went on dialysis '98, at 29 yrs of age
Got transplant '09, lost early '13
Has Lupus; now diagnosed with calciphylaxis
Been very involved in medical care
Believe in Patient Advocacy
MooseMom
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Posts: 11325


« Reply #6 on: October 24, 2013, 08:39:11 AM »

Calciphylasis is a horrible condition, and no doctor should ever allow a patient to suffer from it.
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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."
Bambino_Bear
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« Reply #7 on: October 24, 2013, 09:03:07 AM »

Welcome Step Mom.  Sorry things are not going well.  Sending positive thoughts your way!
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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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