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Author Topic: PD Mom of kiddo w/ ESRD  (Read 2230 times)
willsmom
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« on: February 26, 2011, 10:24:36 AM »
Hi Ya'll,
I'm a first time mommy of beautiful son. Because of trauma at his birth, his kidneys are caput (sp?). We use a Baxter Home Choice PD cycler at home and are waiting to reach target weight to get on the transplant list.
Anyone doing the NKF walks? Team William will be at the Fort Worth walk on March 26th.
Take Care,
Will's mom
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MooseMom
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« Reply #1 on: February 26, 2011, 01:39:47 PM »
Oh my goodness...that must be so hard.  There is nothing harder than watching your only child struggle.  I hope he gets on that transplant list asap.  In the meantime, welcome to IHD.  I hope we can be of help to you. :cuddle;
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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."
Rerun
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Going through life tied to a chair!
« Reply #2 on: February 26, 2011, 05:50:28 PM »
Hi Willsmom, and welcome to IHD.  I'm so glad you found us.  I bet you are more than glad to do dialysis on your baby so he can get that transplant someday and then who knows what will develop during his lifetime.  Hopefully a process where they can grow his own kidney from his own cells. 

You have come to the right place.  Good luck on the walk.

Rerun, Moderator       :welcomesign;
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looneytunes
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« Reply #3 on: February 26, 2011, 07:40:34 PM »
Hi Willsmom and welcome to IHD.   :welcomesign;  It's a great community for education and support.  Glad to have you join. 
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"The key to being patient is having something to do in the meantime" AU
galvo
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« Reply #4 on: February 26, 2011, 08:27:24 PM »
G'day, Willsmom, and :welcomesign;.
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Galvo
monrein
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« Reply #5 on: February 27, 2011, 05:11:27 AM »
 :welcomesign;  to IHD.  I'm so sorry to learn of how you are involved with ESRD and hope you'll find info and support here.
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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.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
peleroja
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« Reply #6 on: February 27, 2011, 06:50:11 AM »
Welcome, Will's Mom.  Lots of good information and friends here.  Glad you found us!
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rsudock
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will of the healthy makes up the fate of the sick.
« Reply #7 on: February 27, 2011, 05:35:00 PM »
Hi Wills mom! My brother and I were kids born with polycystic kidney disease. My bro started D when he was in highschool, I when I was 26 years old. Will sounds like he has a great concerned and caring mama so that is half the battle!

My bro and I do the NKF walks in Ohio...next one is in Whiskey Island in Cleveland!!!

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?
willsmom
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« Reply #8 on: February 27, 2011, 06:20:17 PM »
Thank you for the welcome wagon. Really, PD is the most reliable thing about our lives and I've started started to shrug when people gasp and cringe. There are multiple complications associated with ESRD at such a young age; gastroparesis (hormone related), growth and developement, catheter keeping pace with growth and developement, and changes in diet always change the labs which change meds. I'm blessed to have family that live close and help me love him (my mom does the night shift -retired 911 operator and AF med. tech). My husband also works extra hard so I can stay home ... errr go the the daily appointments with Will.
Please help me keep an eye out for other moms of infants/ toddlers on PD. There is little to no information for this select group and I could use the feedback.
Love one another,
Will's Mom
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boswife
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us and fam easter 2013
« Reply #9 on: February 27, 2011, 06:40:03 PM »
precious little heart, with a wonderful family... glad you found your way here.  Bless ya all, and  :welcomesign;
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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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