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nickysama
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« on: August 21, 2011, 10:00:07 PM »
Hi ....this is my first time on here...I have a 26 year old son on PD...he has been on it for 4 months..he started in center last Sept on Hemo...we are so glad to have him off of that...Jeremy also had a heart transplant when he was 21 months old..the anti-rejection drugs destroyed his kidneys slowly so last year he started the dialysis...I truly hate it...he was on the kidney transplant list for 2 months then had a seizure after being taken way below his dry weight on Hemo and they took him off the list...we have not been able to get him back on for various reasons mostly having to do with his labs...I would love to talk to other people on PD as well as other mothers and fathers who are going through what we are...Jeremy lives at home with us he got so weak and sick on Hemo that he lost 20 pds and now is trying to get some health back...he also has a mild heart valve problem now and so tires more easily than he would if the dialysis were the only problem he has...Are there any other heart transplant patients out there who are also on dialysis ?   thank you all       Nickysama
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MooseMom
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« Reply #1 on: August 21, 2011, 10:03:17 PM »
Oh, how much you and your family have suffered!  Jeremy has really been through the wars...to have to deal with this all of his life.

We have plenty of people here who are on PD, but I am not sure any of them have also had a heart transplant.  May I ask...how well has Jeremy handled all of this?
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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."
jbeany
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« Reply #2 on: August 21, 2011, 10:09:38 PM »
 :welcomesign;

Welcome, nicky!  I don't recall anyone else with a heart transplant, either, but we have plenty of people who understand all about being the care-giver to someone on D.  Check out our caregivers section, and feel free to chime in.

jbeany, Moderator
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
Xime_from_Chile
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« Reply #3 on: August 22, 2011, 01:03:47 AM »
Welcome Nicky!
My son is on PD. He's only 5 months! The whole situation has been really hard but seems that this mode of dialysis is gentler than hemo. Rafael is quite healthy aside from his kidney problem. I'm getting used to the process of connecting and disconnecting him to the machine and he mostly sleep through the treatment.
Is Jeremy doing manual exchanges or using the cycler?
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Ximena (He-ma-nah)
03/16/2011 Son Rafael was born with dysplasic kidneys
03/20/2011 ESRD confirmed
03/23/2011 Tenkhoff installed
06/23/2011 Started PD
Sept 2011 Hydrocele and catheter reacommodation
03/22/2012 gastrostomy performed
10/12/2012 Ureteral valves reimplantantion
April 2013 right nephrectomy
08/07/2013 finally, kidney transplant!
Ang
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« Reply #4 on: August 22, 2011, 01:32:15 AM »
 :welcomesign;
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live  life  to  the  full  and you won't  die  wondering
monrein
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Might as well smile
« Reply #5 on: August 22, 2011, 05:26:25 AM »
 :welcomesign; to IHD
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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
lmunchkin
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"There Is No Place Like Home!"
« Reply #6 on: August 22, 2011, 11:45:41 AM »
Welcome Nicky!  I can only imagine what it must be like to have a child go through this! Again Welcome and sending   :pray;   to you and Jeremy!  Im sure others can help you with this!  So sorry!

lmunchkin
 :kickstart;
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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
Rerun
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Going through life tied to a chair!
« Reply #7 on: August 22, 2011, 08:24:04 PM »
Hi Nickysama, and welcome to IHD.  I'm impressed that his heart has done so well.  Blessing for that.  But, the anti-rejection medicine is hard on all kidneys, natural and transplanted.  I think it is because the medicine goes through the kidneys.    I truly hope his sessions get better.  We try and answer your questions.

Rerun, Moderator      :welcomesign;
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