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carolyn77531
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« on: February 07, 2007, 07:00:23 AM »

hello my name is Carolyn, im a mother of a 5 kiddos who are so wonderful in my life.one of my kiddos was born with a rare kindey disease she is 15 in esrd..she had a transplant when she was 5...she rejected her transplanted kidney in oct..they could not save it...so, she is back on capd again...waiting to get put back on the list...the thing i hate the most...the waiting...so she can have a normal life..instead of worryin about supplies, blood pressure, dry weight..too much fluid, or pulling off to much fluid....listening to the alarms from the home choice..to me thats the worse part..i imagine she hates it as much as i do.....i bet she gets tired of me handing her meds everytime shes sees me......im glad i found this site...the first time around there were nothing out there  like support groups, or even sites like this one...
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angieskidney
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« Reply #1 on: February 07, 2007, 07:01:22 AM »

 :welcomesign;

I can really relate to your kiddo. I was diagnosed with CKD at 9.

I have learned that it is harder on the mother than on the child however. My mom carried a LOT of guilt. I always wanted her to know it was in no way her fault. But mothers tend to feel that way. Hope you don't! Just be there for your kiddo and maybe she can sign up here as well? Probably not. Kids don't like to be reminded about their health but just want to hang out with their friends ;)
« Last Edit: February 07, 2007, 07:05:05 AM by angieskidney » Logged

FREE Donor List for all Kidney Patients!

diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
Sluff
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« Reply #2 on: February 07, 2007, 08:43:30 AM »

Welcome to IHD Carolyn,

It's great to have you here. Sorry to hear about your daughters esrd. Here we are like family and support each other. A good place to start is in our Caregiver section here>  http://ihatedialysis.com/forum/index.php?board=33.0

I know youv'e been there before but there may be new information since your daughter was five years old. Post often,ask questions and browse around.


Sluff, Moderator
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Joe Paul
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« Reply #3 on: February 07, 2007, 08:54:28 AM »

Welcome Carolyn, good to have you aboard.
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #4 on: February 07, 2007, 09:11:59 AM »

 :waving; Hi Carolyn,
This is a challenge, you've got a teenager dealing with everything and now this too.
I know my daughter had lots of problems with taking meds routinely. A therapist once
told her "You've got to find some OTHER way to rebel!" I am glad you're here, there's lots
of good support!

Karol
« Last Edit: February 07, 2007, 03:49:48 PM by okarol » Logged


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
kimcanada
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« Reply #5 on: February 07, 2007, 10:53:35 AM »

:welcomesign; Carolyn

I am a firm believer in support, and you will find tons here.

Kim :)
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Rerun
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« Reply #6 on: February 07, 2007, 10:58:40 AM »

Hi Carolyn and welcome to our site.  I wish this was an adult disease!  It is hard enough as an adult.  The nice part about being a kid is you get priority (supposedly) on the transplant list!

We have had like 5 transplants of members on this site in January!  That is better than my region!  I hope your daughter is next.

 :welcomesign;
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goofynina
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« Reply #7 on: February 07, 2007, 01:27:57 PM »

Hi Carolyn, welcome to ihatedialysis.com.  You will find that not only is this a terrific website, this is also an awesome support group.  We all here have become one big family with one thing in common, dialysis,  :-\ If you ever need help, please do not hesitate to ask, we will be more than happy to help you.  Lookin' forward to hearing more from you.   :2thumbsup;


Goofynina/Admin.
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del
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« Reply #8 on: February 07, 2007, 03:03:45 PM »

 :welcomesign;  This is a great site. 
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shay_pcb
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« Reply #9 on: February 07, 2007, 06:50:41 PM »

 :welcomesign; and good luck with everything!!
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anja
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« Reply #10 on: February 07, 2007, 08:54:21 PM »

 :welcomesign;  second time around,  glad you joined the community!
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Bajanne
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« Reply #11 on: February 08, 2007, 02:07:59 AM »

Welcome to our community!  You have come to just the right place for you and your daughter.  We are here for you.  This site has been a lifeline to lots of people, including yours truly. There is a lot going on here.  Loads to read, but don't just read - post as well, and let us know how she is doing (and how you are doing too).  We even have a arcade that she can visit if she likes games.
You two are facing a real challenge, but thankfully, not an impossible one.  Just keep on keeping on.


Bajanne/Moderator
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nextnoel
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« Reply #12 on: February 08, 2007, 06:03:59 AM »

Welcome to IHD, Carolyn; it's good to have you with us.  :welcomesign;
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MJB
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« Reply #13 on: February 08, 2007, 07:27:57 PM »

Hi Carolyn,

Welcome to IHD.


Mike
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Mike

1994-1998 CCPD
1998-2002 Transplant
2002-2004 In-Center Hemo
2004-2006 Transplant
April 2006 NxStage System One
September 2006 NxStage PureFlow
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