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lawphi
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« on: January 26, 2011, 01:25:06 PM »
Greetings!

My name is Jenn and my husband is on dialysis.  We will be bringing our first baby home in February, (Nx Stage)!  I make myself laugh all the time, but can't read about transplant stories without tears of joy and anticipation. 

We are listed at  Wake Forest and pursuing desensitization at John Hopkins. 
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Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
looneytunes
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Wishin' I was Fishin'
« Reply #1 on: January 26, 2011, 06:46:57 PM »
Hi Jenn and welcome to IHD.  There are some wonderful transplant stories living here on this site.  I wish you the best and quickest path to transplant ever.  My hubby is also on NxStage and there are several other members here at IHD who use it.  Please post often and let us get to know you.

 :welcomesign;
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"The key to being patient is having something to do in the meantime" AU
Rerun
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« Reply #2 on: January 27, 2011, 04:32:05 AM »
Hi Jenn, welcome to IHD.  It sounds like you are doing the right things.  I hope your wait is not long.  I'm glad you are reading the information on our site. 

Rerun, Moderator     :welcomesign;
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peleroja
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« Reply #3 on: January 27, 2011, 07:22:37 AM »
Welcome to the group, Jenn.  Lots of good information and friends here.  Glad you joined!
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rsudock
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will of the healthy makes up the fate of the sick.
« Reply #4 on: January 27, 2011, 03:13:46 PM »
hello Jenn glad you are here!! What is desensitization? Look forward to hearing from you..

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?
lawphi
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« Reply #5 on: January 27, 2011, 05:15:19 PM »
http://www.hopkinsmedicine.org/transplant/Programs/InKTP/crossmatch.html

I hope this is permissible link to post. It describes one option we are considering. 

I like you guys already!
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Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
ODAT
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« Reply #6 on: January 28, 2011, 06:58:54 AM »
Hi Jenn, lots of support here for caregivers for sure. Good luck in the setup and anticipated transplant.

 :waving;
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As is your sort of mind, so is your sort of search: you will find what you desire.
paris
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« Reply #7 on: February 05, 2011, 06:47:56 PM »
Welcome Jenn from Raleigh!   I also, contacted Johns Hopkins and found they were great.  I was listed there, Carolina Medical Center and UNC.  Carolina Med center has a great tranplant center and does plasmapherisis, IVIG,chemo for desensitization. (My pra was 100% for years)  And I loved the people there.   Wake Forest Baptist is an incredible center too. They are pioneers in the "growing kidneys" area.   It sounds like you have educated yourself and know what is going on.  Your husband is a lucky guy.   I went through IVIG and chemo.  I hope your husband has great success with this.   I was listed for 5 years - got a miracle of all miracles on Sept 1st --- even with my 100% pra.  Never ever should have happened, but it did and my new kidney is doing good.      I hope you post often.  This is an amazing place with very supportive people.  Welcome to IHD!


paris, Moderator
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
jbeany
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« Reply #8 on: February 05, 2011, 08:21:09 PM »
Picked out a name for that 70 pound baby yet?  I called mine Dorothy, and the Pureflow was Toto.  No place like home, no place like home......
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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.
BillSharp
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rock 'n roll will never die
« Reply #9 on: February 06, 2011, 10:53:43 AM »
Thanks for the link. That web page is the most succinct explanation of the PRA problem I've read. I'm a Cedars-Sinai guy out here in the southern Cal area, and it and Johns-Hopkins are the leaders in this field. Had my 1st transplant at Cedars 22 years ago and looking for another. My 1st was a gift from my son, an only child. Should'a had more kids!
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Started passing stones at age 14 (Cystinuria)
Transplant in 1989 at age 50
Transplant failed in 2009 at age 70
Hemo and transplant list
Cadaver Transplant 7/1/2011 at age 72 (zero mismatch)
lawphi
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« Reply #10 on: February 10, 2011, 07:05:35 PM »
Bill, I just had the best belly laugh and will be sure to mass produce now!

JBean:  I think a name is in order.  We bring the little heavy sucker home on Valentines day, if we don't blow our training between now and then :)  My husband forgot to turn on the fluid warmer using his bags today.  I can't take him anywhere :)

Paris:  We were in Raleigh for years and had the best experience with Wake Nephrology to manage my husband's first transplant. 

Congrats to you and your 3 antigen kidney!  You are the second 100% pra I have heard of being transplanted in NC recently.   
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Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
rocker
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« Reply #11 on: February 10, 2011, 07:17:23 PM »
Quote from: lawphi on February 10, 2011, 07:05:35 PM
My husband forgot to turn on the fluid warmer using his bags today.  I can't take him anywhere :)

In our first training treatment, the nurse forgot to turn on the warmer! And then left us alone.

And he was getting colder, and colder, and I was saying "Well, honey, I don't know, this is the first time we've done this, maybe the place is just cold, I don't know..." having no clue at all.  I finally took his temperature, and it was 94 (!!!!)

I went and found the other nurse, and told her.  And she came in and saw that the warmer was off, then diplomatically tried to explain to us why he got so cold.  But I could see in her eyes that she was cursing the other nurse.  :)
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Ang
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« Reply #12 on: February 10, 2011, 10:08:10 PM »
 :welcomesign;

 glad you have joined us :thumbup;
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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 #13 on: February 11, 2011, 05:20:15 AM »
 :welcomesign;  Look forward to knowing you through this site.
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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
paris
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« Reply #14 on: February 11, 2011, 06:36:48 PM »
Jenn, I go to Wake Nephrology!  I love the doctors and nurses there.  I see Dr. Maogazi.    Are you now in the Winston-Salem or Greensboro area?   Glad you are here with us.  You will make some good friends here.    :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
lawphi
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« Reply #15 on: February 20, 2011, 10:04:45 AM »
Small world!  We saw Dr. Maogazi a few times when Casey was out.  He also did a biopsy. 

We are outside of Charlotte now.  He was sent to Baptist shortly after birth in 1981.  I don't think CMC had much of a children's hospital at that time. 
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Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
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