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Author Topic: I'am scared  (Read 5124 times)
swoytasik
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« on: September 23, 2013, 08:22:45 AM »

My daughter has been in and out of the hospital for several months.  She started with an infection in her lining of her stomach. She was on PD. They thought it was cured, then went back in for a blood infection, the also thought that was cured. Then went back to the hospital because of a fungal infection. They finally took out the PD line. Now, she was in a rehab hospital and had to go back to the regular hospital to have surgery on her intestines area stating that there are pockets of infection. She has a drainage tube in her. They are saying she has Sepics and she is now in a coma and they don't know why. I haven't got any answers, they just don't know why she is in this. They have her hooked up to several medication and are doing Hemo 24 hours a day to flush out her system.  I'am so scared for her.  It has been 4 days now and on the 5th they want to talk to the family if she is not doing any better.  Can you give any suggestion on what to ask the Doctors or has anyone been though this?

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Grumpy-1
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Make me the person my dog thinks I am

« Reply #1 on: September 23, 2013, 09:03:51 AM »

Wow !!!   Sorry to hear all this.  I really don't know what to say or to ask the doctors in this situation.  But I wanted to reply so you knew you were not being ignored. Grumpy
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Make me the person my dog thinks I am
Shaks24
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« Reply #2 on: September 23, 2013, 09:40:41 AM »

I am also so sorry to hear this. I will say a prayer for your daughter. I hope you can get to the bottom of this situation soon and I hope she recovers quickly.
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
Joe
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« Reply #3 on: September 23, 2013, 09:54:48 AM »

I don't know what to tell you, but will add a prayer for guidance and strength as you go through this.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
renalwife
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« Reply #4 on: September 23, 2013, 02:08:28 PM »

  How old is your daughter?  What is her first name, or her "handle"?  Decisions must be made but what decision? 

What to ask the doctor:  Will she recover this setback?  What other options are available for her?  Should she have another consultant, or even two consultants? 

Is  there family available to give you strength?  And perhaps a spiritual adviser would be a comfort.

Our hearts go out to you.
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Jean
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« Reply #5 on: September 23, 2013, 02:48:17 PM »

I would be scared too. Don't know what to tell you about the Dr. But, I do understand Sepsis is not a good place to be. Do you have some one who can be with you when you talk to the Dr? I would not want to be alone if the news they give you is not good. My heart goes out to you, this is a horrible thing to have to go thru. I will say a prayer for your daughter and for you.
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One day at a time, thats all I can do.
swoytasik
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« Reply #6 on: September 25, 2013, 09:40:32 AM »

Thank you so much for all your prayers, it means so much to me at this time.

Her name is Jodi. The intensive Dr wants us the family to end her life.  I just can't at this time do that, hoping that she will wake up. She is so sick. the PD line that was in her just tore he stomach up and now they are doing a EEG on her brain to see if there is damage.  They say septic also goes to the brain.  I hope this is not what happened. Im so confused now. I cry all the time. She is only 43 yrs old. My poor baby...

Thanks again.
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UkrainianTracksuit
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« Reply #7 on: September 25, 2013, 10:20:17 AM »

So sorry and sad to read this.   :grouphug;  I'm sure more prayers will be coming your way.
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billybags
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« Reply #8 on: September 25, 2013, 10:38:49 AM »

swoytasik , My heart goes out to you and your family. my prayers will be with you all.
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swoytasik
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« Reply #9 on: September 25, 2013, 08:40:26 PM »

Thanks again for all you prayers.  But today she is not doing any better and there is really nothing anyone can do. Our family will be taking her off life support Friday. Please keep her prayers coming so she can have a wonderful journey home.

Thank you and God Bless you all.
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MaryD
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« Reply #10 on: September 25, 2013, 10:16:27 PM »

 :grouphug;
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amanda100wilson
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« Reply #11 on: September 26, 2013, 05:08:45 AM »

I am so very sorry to hear about your beautiful daughter. :grouphug;
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
Grumpy-1
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« Reply #12 on: September 26, 2013, 10:51:01 AM »

swoytasik    SO SORRY for your loss.  I pray the Lord will be with your family during this hard time.  Grumpy
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Make me the person my dog thinks I am
okarol
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« Reply #13 on: September 26, 2013, 11:55:36 AM »

 :( I am so sorry about Jodi. This is a heartbreaking story. As a mother I can only imagine the pain you are experiencing. Sending you warm hugs.  :cuddle; :cuddle; :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
Shaks24
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« Reply #14 on: September 26, 2013, 01:12:14 PM »

Praying for the strength and peace of the Lord to be with you and your family during these difficult times. I am so sorry you are going through this.
« Last Edit: September 26, 2013, 04:28:00 PM by Shaks24 » Logged

Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
Angiepkd
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« Reply #15 on: September 26, 2013, 07:35:40 PM »

 :grouphug;  :grouphug;  :grouphug;
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Desert Dancer
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« Reply #16 on: September 26, 2013, 08:50:56 PM »

I am so sorry you're losing your beautiful Jodi. What a terrible decision to have to make. I wish we could all be there to hold onto you in person.  :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.
galvo
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« Reply #17 on: September 26, 2013, 09:21:51 PM »

My sincere condolences!
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Galvo
Jean
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« Reply #18 on: September 29, 2013, 01:28:59 AM »

I lost my first born child when he was 14, so, I know the pain you are going thru. So very very sorry this has happened to you. Believe me when I tell you, you did nothing to deserve this and it is not your fault.
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One day at a time, thats all I can do.
cdwbrooklyn
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« Reply #19 on: September 29, 2013, 07:42:28 AM »

So sorry to hear about Jodi. I will prayer for you and your family.  :grouphug;
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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
lunadatura
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Fate happens, Destiny is what you do with it.

« Reply #20 on: October 11, 2013, 09:03:03 PM »

hello

i am VERY SORRY to hear of your loss. i had speticemia from a dialysis access that got infected - i spent a week in ICU and it was the single worst experience of my life - they give you 50 percent chance of living when with sepcis. my heart goes out to you in your grief

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Diagnosised FSGS via biopsy 11/2006
Started Dialysis 5/2009
hemo-dialysis except 9.09-6.10 = peritoneal then back to hemo
currently in center hemo 3x per week
Evaluation for transplant July 2010
Almost received transplant 8.13
repeated calls and admissions for transplant since then but no kidney yet
3.1.14 got ideal kidney and having exceptional recovery - creatine went from 8.5 to 1.1 in less than 2 weeks.
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