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Author Topic: My daughter passed away.  (Read 35554 times)
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #25 on: July 08, 2011, 05:23:44 PM »

such a young and beautiful life, full of promise...cut so so short. Glitter I am so so sorry.  :'(

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
YLGuy
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« Reply #26 on: July 08, 2011, 05:34:50 PM »

Glitter I am so sorry for your loss.  :grouphug;
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willowtreewren
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My two beautifull granddaughters

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« Reply #27 on: July 08, 2011, 05:58:00 PM »

Oh, dear, Glitter. This must be devastating. I am so sorry and words fail me. But please know that my hugs are added to all those of the rest of your family here.  :grouphug; :grouphug; :grouphug;

 :(

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
galvo
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« Reply #28 on: July 08, 2011, 09:41:09 PM »

Glitter, my sincere condolences.
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Galvo
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Going through life tied to a chair!

« Reply #29 on: July 09, 2011, 12:10:07 AM »

OMG!  I cannot believe this.  I'm so very sorry.  How can we help?  I wish I could give you a hug in person, but here is one  :grouphug;

Please be well.  I'm so sorry for your loss.  Children aren't supposed to go first!
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natnnnat
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« Reply #30 on: July 09, 2011, 01:32:38 AM »

Its very sad news Glitter.  Thinking of you and your family in mourning.  I wish it wasn't so. 
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #31 on: July 09, 2011, 09:27:45 AM »

I am so sorry for your loss Glitter! Please accept our deepest condolences.  There are not any words that can make things better!  Just hope the dr's clear up this matter sooner rather than later.  My thoughts and prayers are with you and your family during this difficult time!  May God Bless you all!!

~~G~~


 :grouphug; :grouphug; :grouphug; :grouphug; :pray; :pray; :pray; :pray;





EDITED:  Fixed font size.  Shrinky, one of the site rules, which I quoted below, is that we use the standard fonts and colors for the majority of our posts.  It's easier for our members with vision problems if the sizes and colors are consistent.  We all bold and color things occasionally, but the entire post in a larger font makes it harder for some members to use their accessibility programs.  Thanks for helping!  - jbeany, Moderator

"Please refrain from making your posts in a different colors or using a lot of colors in your posts. Just stick with the default size, color, and font. You may use colors sparingly to add emphasis to certain words, just keep it simple or you will be asked to change it. You are allowed to use bold, italic, etc, etc. however do not get carried away."
« Last Edit: July 09, 2011, 05:37:24 PM by jbeany » Logged

1984:  Diagnosed with Nephrotic Syndrome @ 21 y.o. given 6 months to a year to live.
2011:  Told I was in Stage IV ESRD/CKD
July 8, 2011:  Vein Mapping done
August 24, 2011: AV Fistula in Right Wrist done
del
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del and willowtreewren meet

« Reply #32 on: July 09, 2011, 10:12:07 AM »

So sorry to hear of your loss.  :cuddle; :cuddle; :grouphug; :grouphug; :grouphug;
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Don't take your organs to heaven.  Heaven knows we need them here.
Ang
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« Reply #33 on: July 09, 2011, 04:39:41 PM »

so young, such a tragedy    :(
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live  life  to  the  full  and you won't  die  wondering
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wedding 12-10-11

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« Reply #34 on: July 09, 2011, 07:01:11 PM »

wow Im sooo sorry to hear this. My heart grieves with you.

 :grouphug;
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
Ken Shelmerdine
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Life's a bitch and then you go on dialysis!

« Reply #35 on: July 09, 2011, 07:07:55 PM »

Glitter please accept my deepest sympathy. I don't know what to say in consolation except that I have lost my only child in the past so I do have some idea the grief and agony you must be feelin right now. If you need to talk about it sometime to someone knows too well what it's like then you  are welcome to PM me anytime.
 :grouphug;
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Ken
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« Reply #36 on: July 11, 2011, 12:59:54 PM »

Glitter, I have absolutely no understanding of how completely heart-wrenching and awful this is for you.  I am so SO sorry.  I know a virtual hug isn't quite the same as a real one, but it's all I have to offer you at the moment ...

*huggles*
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
aharris2
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Volcan Pacaya, Guatemala

« Reply #37 on: July 13, 2011, 05:06:35 PM »

Glitter, I am so sorry  :cuddle;
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Life is like a box of chocolates...the more you eat the messier it gets - Epofriend

Epofriend - April 7, 1963 - May 24, 2013
My dear Rolando, I miss you so much!
Rest in peace my dear brother...
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« Reply #38 on: July 14, 2011, 06:19:50 AM »

I am sending the most heartfelt condolences to you Glitter. This has been such a rough last couple of years for you. If there is anything I can do to help ease the pain please let me know.
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lmunchkin
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"There Is No Place Like Home!"

« Reply #39 on: July 14, 2011, 09:32:36 AM »

So sorry to hear this tragic loss!  God only knows how hard it has been for you! Please let us know if we can do anything!

Praying for you during this time, that you find peace in your time of sorrow! Times like these are SO DIFFICULT to understand,

lmunchkin     :flower;
« Last Edit: July 14, 2011, 09:33:38 AM by lmunchkin » Logged

11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
glitter
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« Reply #40 on: July 14, 2011, 07:04:33 PM »

She was such a good girl. Jamie was developmentally delayed- just enough to make her happy and child-like and wonderful. I am in awe at how many people in my community loved her- there were numerous teachers at her Celebration of Life, and the plants keep coming. Today one came from the Principle of her school- he knew Jamie a little bit only. Jamie was always thrilled when she would interact with him, she really liked him, and was impressed by him. She would be stoked he sent something!!
 I have gone back to work, its very hard to get through the day- but I need to work. I am moving to live with my Dad. My other child, Jackie and I think its a good idea.
 
 I never considered that my child could die. I protected her every minute of the day, as well as I was able. For death to creep into my home and steal her  from me. It sucks.
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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)
RCC
nephrectomy april13,2006
dialysis april 14,2006
lmunchkin
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"There Is No Place Like Home!"

« Reply #41 on: July 14, 2011, 08:00:15 PM »

I know when I lost a brother in 1983, he was tragically killed crossing the street in Longview, TX., and was the first of my siblings to pass, it  devastated my Mom & Dad.  They were never the same afterwards, but they had 7 others to look after! I think that helped tremendously !

The hardest thing about death is the unexpected one's!  One day they are here amoung us,  laughing and carrying on and then fate takes them suddenly.  It's so terribly Sad!Like you Glitter, my father handled everything for my brother.  He had to fly to Texas (we resided in TN. at the time) to ID the body, we stayed at home with Mom.  He insisted she stay, and Iam so glad he did cause it was not pleasant to see and she would not have handled it very well.

His body was unrecognizable and the service was a closed casket because of it! After all had settled somewhat, Dad told us all what had happened that fateful evening.  He spoke to Longview police and they told him that he and some friends had been playing pool at a bar and left as it was getting dark and they crossed the street to head home. Brother was last one to cross and his friends who were with him said he pushed a young girl who was pregnant in the ditch and he took the Hit. The guy told Dad that he knew it was fixing to happen, so he pushed his wife into the ditch and saved not only her life but the life inside her! Later, we found out that the baby they had was a boy and they named him after my brother! We were so happy to hear that cause even though his life was over, another one was born and named after him to honor his memory! What a wonderful thing these strangers did for our brother!

Im sure your daughter will be missed tremendously, but hold on to those good times and the memories of her!  She was very special to you, and you will see her again! Time will make it better for you, Glitter, but it does take time! Just remember and cheerish the memory of her!  I know this is easier said than done, but work can be helpful in these times!

Please take care of yourself and keep us posted on your living with your Dad. Im sure Jackie is concerned for you as well!


God Bless You, Glitter, and give you peace during this time,

lmunchkin     :flower;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #42 on: July 20, 2011, 10:01:51 AM »


 
 I never considered that my child could die. I protected her every minute of the day, as well as I was able. For death to creep into my home and steal her  from me. It sucks.

This has been my worse fear since Jenna was first diagnosed. Always lurking in the back of my mind.
How are you doing glitter?  :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
billybags
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« Reply #43 on: July 20, 2011, 10:52:15 AM »

Glitter, My heart goes out to you, it is nice to know that you are OK and muddling through, work will help a little. May be moving in with your dad will help a bit as well. Thinking of you.
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glitter
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« Reply #44 on: July 20, 2011, 09:13:19 PM »

You know- its weird- I have repressed my grief. This is so gut-wrenchingly horrible- I can not process it, I walk around screaming inside my head. I can barely talk about it. Jackie, her sister, and my dad are the same way. We seem to be fine- but we cant deal with this level of pain, so when it starts to come out we just shut it down. I know this is probably not good- but its all I can deal with right now. There is a name for what killed my daughter SUDEP- Sudden Unexplained Death in Epileptic Patients. I had not heard of it- it is rare and mostly affects people with a heck of a bunch more seizures then my Jamies one or two a year. The cure- supervision......a simple monitor. They do not monitor people electronically who only have a few a year. If I would have known she would have been sleeping in my bed with me- shoulda coulda woulda. Its F**ked up. The horror of finding her....the horror of the investigation- (She died at home, so brief investigation)I pray none of you go through this. I had a heart attack when my husband passed away, so now my daughter is so worried I will leave her too. Me too, I don't want to leave her all alone. Its Scary.
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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)
RCC
nephrectomy april13,2006
dialysis april 14,2006
MooseMom
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« Reply #45 on: July 20, 2011, 09:49:48 PM »

Most of us on Planet Earth would be spared a lot of suffering if we could be omniscient.  But none of us are, and that's why so many of us suffer with regret and guilt.  I hope you don't take on this extra burden.  It would be vastly unfair to yourself.  What happened to your Jamie was against the odds. 

It sounds like the grief you experienced when your husband passed away really did break your heart, and I am very concerned that history may repeat itself.  It is good that you see that locking away your grief is unhealthy for you.  It may be just the way you are wired, but that doesn't mean it is the healthiest way for you to cope with the horror that has rocked your world.  I truly do not know what could possibly make you feel better right now, but I would urge you to seek professional help to assist you in finding a coping mechanism that works for you.  There is nothing that anyone can SAY that will reduce your grief, but maybe someone can help you COPE with the grief in a healthier way.

My heart goes out to you and to your Jackie.  If there is anything at all that we can do to help you, please do let us know.  My own heart hurts so much for you.  I am so very, very sorry.  What horror, what horror.
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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 #46 on: July 20, 2011, 11:01:32 PM »

 :'( :'( :'( Awwww glitter, so much sadness.
Please keep coming back here and let us love you.  :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
billybags
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« Reply #47 on: July 21, 2011, 05:45:09 AM »

Glitter, you really do need to talk to some one, you can not keep all that grief in, it will burn you out. Can you not get in touch with a  grief counselor, you really need to do this, especially for your daughter she is here and she needs you. I am thinking of you both at this time. Be gentle on your self. get some help.
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cariad
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What's past is prologue

« Reply #48 on: July 21, 2011, 10:35:38 AM »

Oh, glitter, your grief comes through so clearly in your posts. No one should have to suffer as you have and are. I don't want to overwhelm you with advice and speeches, but please do consider reaching out to others. In Milwaukee we have a highly recommended charity for kids (and their families) who are losing or have already lost one parent. There should also be support groups for parents who have lost a child. Counselors have their place, but I think forming friendships with people who have already walked this path will be the fastest route to starting the healing. Grieving is work, arduous and seemingly endless. Let people share their strategies with you, and as time goes on, bring the joy of new relationships into your life. When you're ready, or maybe even a bit before, please consider contacting help organizations.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

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Mizar
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« Reply #49 on: July 27, 2011, 04:15:55 PM »


 Glitter, I just Read this. I am so Sorry.
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