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Author Topic: Dani  (Read 22893 times)
Sluff
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« Reply #50 on: September 22, 2008, 03:18:24 PM »

Lola you are a gem! You need to get to Vegas this year.
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lola
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I can fly!!!

« Reply #51 on: September 22, 2008, 03:59:25 PM »

Lola you are a gem! You need to get to Vegas this year.
I WISH ,but I'm doing the NKF walk on the 11th so I'll be thinking of my chica Susie and all my IHD Family :grouphug;
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #52 on: September 23, 2008, 05:22:19 PM »

Lola you are a gem! You need to get to Vegas this year.
I WISH ,but I'm doing the NKF walk on the 11th so I'll be thinking of my chica Susie and all my IHD Family :grouphug;

 :thumbup; You go girl!
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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
lola
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« Reply #53 on: September 25, 2008, 05:57:38 PM »

We are starting to see the return of the  >:D Dani also has a "virus"? we are waiting a few more days to see for sure and praying this is not the meds as if it is we really don't have any options. :bow;
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Marley
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« Reply #54 on: October 22, 2008, 12:32:12 AM »

HI Lola

I just read all three pages of your thread and I must say you are one amazing woman!!  What a lucky little girl your Dani is to have a mom like you and I just wanted to know I'm pulling for her too.  It must be terribly hard to have a child who has sick kidneys, my heart goes out to you!!

Marley
 :guitar:
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Marley
lola
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« Reply #55 on: November 01, 2008, 04:17:46 PM »

Well  >:D Dani is to much for this Mama so yesterday her Dr decided to stop her BP meds. We may try something else this summer but we can't have her like this during school.
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #56 on: November 01, 2008, 09:15:38 PM »

 :grouphug;
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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
Sluff
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« Reply #57 on: November 02, 2008, 04:47:40 AM »

Maybe it's a reaction to what your family has been through with Otto, children express themselves differently. I hope this passes and that it is not the meds.  :grouphug;
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pelagia
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« Reply #58 on: November 02, 2008, 06:08:45 AM »

 :grouphug;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
lola
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« Reply #59 on: November 02, 2008, 06:44:41 AM »

Maybe it's a reaction to what your family has been through with Otto, children express themselves differently. I hope this passes and that it is not the meds.  :grouphug;
It started b-4 everything with Otto, since things with Otto she just needs to be attached to me. I wish she wouldn't have these reactions but for whatever reason every time we have tried it we get the same  >:D
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vandie
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« Reply #60 on: November 02, 2008, 07:45:35 AM »

Amy,
Hang in there, my friend.  You have been through the ringer.  I am so impressed by your strength. 

xoxo
« Last Edit: November 02, 2008, 07:54:38 AM by vandie » Logged

Life is the journey, not the destination.
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I received a kidney transplant on August 4, 2007.
pelagia
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« Reply #61 on: November 02, 2008, 07:49:07 AM »

sending a  :cuddle; for you Amy.
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
kitkatz
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« Reply #62 on: November 02, 2008, 07:19:03 PM »

Just you wait until she becomes a teenager and goes through puberty!
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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 #63 on: February 17, 2009, 10:08:40 AM »

Well Dani was started on Cozaar and is doing GREAT no more  >:D Dani. They just got her labs back and her #'s look AWESOME :bandance; the Dr said it's not what he'd call victory but I do. Some kids on this become immune but we will keep her on it and keep our fingers crossed that it keeps her at stage 2 for a VERY long time. Today she also was told only 2 more weeks in a cast :bandance; oh for those of you who didn't know she fell ice skating and broke her leg.
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #64 on: February 17, 2009, 10:14:16 AM »


Good to hear the meds are working!
Wow - that's a long time in a cast - it must be tough with showers, snow, school!
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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
paul.karen
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« Reply #65 on: February 17, 2009, 10:26:50 AM »

Lola i also had bad spells on certain BP meds.    Mood swings, ups downs ect ect.
I am also on Cozaar and i can see/feel the differnce but karen even more so.  So I am glad Dani is doing well on them.

Also glad she is getting out of the cast soon :clap;
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
pelagia
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« Reply #66 on: February 18, 2009, 03:56:22 PM »

Sending you loads of {{{hugs}}}.  I am really happy to hear that Dani is doing well.
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
The Wife
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« Reply #67 on: February 19, 2009, 08:47:07 AM »

 :grouphug;
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lola
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« Reply #68 on: March 08, 2009, 12:30:09 PM »

Dani's cast is off and besides a really good limp she is running around like any other 6 year old :bandance; She will have repeat labs in April and :bow; :bow; that her labs continue to look good.
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Sluff
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« Reply #69 on: March 08, 2009, 12:57:31 PM »

Glad to hear Dani is cast free.
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paris
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« Reply #70 on: March 08, 2009, 03:57:26 PM »

Yea, the cast is off  :yahoo;  Small victories are wonderful.  You are an amazing Mom and Wife!!
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
kitkatz
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« Reply #71 on: March 08, 2009, 09:42:48 PM »

 :2thumbsup; :2thumbsup;
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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
The Wife
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« Reply #72 on: March 09, 2009, 07:41:17 AM »

Celebrating the small victories with you... :cuddle;
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lola
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« Reply #73 on: April 15, 2009, 06:19:40 PM »

 :stressed; well we just got Dani's labs and they are the WORST ever :stressed; of course me I asked a millon ?s as to what I maybe fed her or had her drink that would make her levels jump and he said nothing so OK then lets increase her meds but he wants to 1st do another 24 urine to see if maybe somehow :bow; last week labs are wrong and then we will decide what the next step is. Dani has been stable at the high end of stage 2 but this last set of labs put her at the low end of 3 almost 4 :stressed; :stressed; :puke; I soooooo don't need this, I need to get Otto better and a new kidney. WTF!!!!!!
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G-Ma
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« Reply #74 on: April 15, 2009, 06:21:52 PM »

 :grouphug;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
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