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Author Topic: My daughter passed away.  (Read 35550 times)
glitter
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« on: July 07, 2011, 11:29:33 PM »
My daughter was only 21. She was a child with disabilities, she also had epilepsy. She was doing so very well, had an eeg that morning- went to bed that night and in the night had a seizure which obstructed her airway and died. She only had 1 or 2 a year, and never at night in her sleep that we know of. I am in the freshest hell. We four have now shrank to two. Today I went to arrange her funeral which is sunday, but the drs are arguing over who has to sign the death certificate. She passed at home, and had just turned 21, hadn't met all  her new Drs, and had been signed off by the pediatric ones. So far her peditrition of 10 years called me today and said he wasn't a neuro and he would not sign without an autopsy. I do not need this p*cking arguement about my child!
the ME signed off on the investigation, why cant someone just sign it?
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

caregiver to Jack (he was on dialysis)
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nephrectomy april13,2006
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Bill Peckham
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« Reply #1 on: July 07, 2011, 11:45:45 PM »




Glitter I am so sorry.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
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MooseMom
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« Reply #2 on: July 07, 2011, 11:47:20 PM »
OH!DEAR GOD!  I am so very sorry!  Words fail me and I will be thinking of you all night long  Is there anything at all we can do for you?
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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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« Reply #3 on: July 07, 2011, 11:48:34 PM »
So sorry to hear Glitter and on top of that the troubles, well shit that your put through before her funeral.
 
I hope this gets worked out in plenty of time. :cuddle;
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
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Lifes Adventures -  Priceless

No two day's are the same, are they?
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« Reply #4 on: July 08, 2011, 12:40:46 AM »
Dear glitter, this is such a shock, and I am just heartbroken for you.
I am so very sorry dear friend.
 :'( :'( :'( :'( :'(
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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: July 08, 2011, 01:09:27 AM »
Glitter, I am so sorry!!!! My first born son died of the very same thing when he was only 14. It is a terrible loss and a terrible disease. My heart just is breaking for you. I hope at least you can get the necessary paper crap out of the way so you can bury your child in peace. I will pray for you and for peace for you too. Hugs, Hugs, Hugs.
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One day at a time, thats all I can do.
Des
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« Reply #6 on: July 08, 2011, 01:27:06 AM »
 :'( Glitter I am so sorry about this VERY sad news.

You have had so much sadness and now this..
Please know I am thinking of you and your family in this difficult time.

God bless you.

Lots of love.
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

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RichardMEL
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« Reply #7 on: July 08, 2011, 01:57:41 AM »
I know there's nothing really I can write right now that will or ever could help.. but I am distressed to read this sad news. I am so sorry and all my hugs go to you at this so very sad and difficult time.  :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
kristina
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« Reply #8 on: July 08, 2011, 02:26:24 AM »

Glitter, I am so sorry to hear about the loss of your daughter

and it is terrible the bureaucracy that can go on
 
at times of great sadness.

I do wish you lots of strengths,

kind regards from Kristina.  :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Darthvadar
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« Reply #9 on: July 08, 2011, 04:45:08 AM »
Oh Glitter...

I'm terribly sorry to hear your news...

I'm thinking of, and praying for you....

May your daughter rest in peace...

Please keep in touch... We're always here for you....

May God bless and protect you and the family as you grieve...

Love, and hugs....

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....
monrein
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« Reply #10 on: July 08, 2011, 06:09:30 AM »
Glitter, there simply are no words that I can find that would help in any way but please know that I am thinking of you and desperately wish that that this had not happened.  You have been through far too much in far too short a time.
 :grouphug; :cuddle; :grouphug; :cuddle; :grouphug; :cuddle; :grouphug; :cuddle; :grouphug; :cuddle;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
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Second trx doing great so far...all lab values in normal ranges
kitkatz
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« Reply #11 on: July 08, 2011, 06:20:13 AM »
God bless you and your family during your time of sadness. There is nothing I can say to make things better, but know there is  love outpouring for you all.  :grouphug; :grouphug;
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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
lola
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« Reply #12 on: July 08, 2011, 06:39:53 AM »
Glitter I am sooooooo sorry :grouphug; :grouphug;
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Brightsky69
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« Reply #13 on: July 08, 2011, 06:49:03 AM »
 :grouphug; I am so sorry for your loss.
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Transplant June 11, 1991 (1st time) my mom's kidney
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Desert Dancer
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« Reply #14 on: July 08, 2011, 08:07:27 AM »
glitter, I'm so sorry. I've been where you are and there aren't any words.  :grouphug; :grouphug; :grouphug;
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
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« Reply #15 on: July 08, 2011, 08:12:07 AM »
glitter, there is nothing I can say to ease your heart. To lose a child must be devastating. My prayers are with you and your family at this time. I feel for you all.
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« Reply #16 on: July 08, 2011, 08:32:38 AM »
Glitter, I am so sorry to hear of your loss.  Just know that your IHD family is holding your hand as you go through this :grouphug;  My prayer is that the redtape be cut short and that you get to go on in peace.  Please keep us updated as you are able to.  Lots of love is directed to you right now  :cuddle;
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
jbeany
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« Reply #17 on: July 08, 2011, 10:04:21 AM »
Oh, glitter, honey, there just aren't enough words.... :grouphug;
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« Reply #18 on: July 08, 2011, 10:06:48 AM »
 :'(  So sorry Glitter.  My condolences about your daughtr and sorry you have to have such additional problems.  I hope all is cleared up soon.   :grouphug; :grouphug;
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If I could type properly, I'd be dangerous!

You may be only one person in the universe but you may mean the the universe to someone else.
carol1987
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« Reply #19 on: July 08, 2011, 10:15:26 AM »
I am so very very sorry for your loss.....  :grouphug; :grouphug; :grouphug;
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Diagnosed with  PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was  "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
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« Reply #20 on: July 08, 2011, 10:54:44 AM »
Oh dear, please feel the ((((((((hugs))))) from everyone here. Can only imagine what you're feeling, and you may even be numb. My heart sank when I read this. In this your very trying time,  I think it's safe to say that everyone is here to hold you up when you need it. What ever you are going through we will understand. It's great to have each other here because life is not always so easy. TS
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caregiver to husband using in-center dialysis 4 years
gothiclovemonkey
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« Reply #21 on: July 08, 2011, 12:23:00 PM »
 :grouphug; Im sorry to hear of ur loss
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"Imagine how important death must be to have a prerequisite such as life" Unknown
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looneytunes
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« Reply #22 on: July 08, 2011, 12:31:20 PM »
Oh Glitter, my heart goes out to you.  Nothing is harder than losing a child.  Please know you are and will be in my thoughts and prayers.   :grouphug;
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cariad
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« Reply #23 on: July 08, 2011, 01:27:22 PM »
Oh, glitter, sweetie, I am so very sorry.   :'(
 :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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« Reply #24 on: July 08, 2011, 04:40:52 PM »
Bless your heart and may God bring you peace.    Im so sorry glitter..  :grouphug;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
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