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Author Topic: Carer for Wife - CAPD - Transplant (failed) - Nxstage  (Read 3550 times)
JonDyson
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« on: May 20, 2013, 03:43:19 AM »
Hi,
I'm a bit of a technical chap and support my wife with her dialysis.
I enjoy Computers, Electronics, Mechanical and general DIY and am a bit of a troubleshooter generally.

I've included Helen's kidney related diary here, so that you can get an idea of our experiences.

Helen's diary: (approximate dates)
1985 - Pre-eclampsia - Premature child (5 weeks early)
1986 - Diagnosed
1989 - Pre-eclampsia - Premature child (born 25 weeks - lived 10 days) RIP
1994 - CAPD
1996 - Transplant - lasted until 2006
2001 - Pre-eclampsia - Premature child (born 25 weeks - 1lb 4oz !!!)
2006 - CAPD
2007 - APD
2008 - Stroke
2009 - Peritonitis - severe
2009 - Haemodialysis - Fresenius (at Leicester Hospital) 3 days per week
2011 - Nxstage Cycler (6 days 20L) and Pureflow

We run our own Computer Workshop business and we have an RV which I have set up for Nxstage Cycler and bags.  The plan is to be able to grab a long weekend away now and again, without any planning.

Jonathan
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boswife
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us and fam easter 2013
« Reply #1 on: May 20, 2013, 10:01:42 AM »
So neat to hear your still goen with a good attitude!! :)  I want to welcome you to a great place for friendship, education, and 'teaching'  ;D  Hope to hear more from you...  and,,, thanks for caring for that wife of yours :)
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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
Rerun
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Going through life tied to a chair!
« Reply #2 on: May 20, 2013, 10:10:02 AM »
So glad you found us.  How are your children doing?  I'm sorry for the loss; 25 weeks early is huge.  You have been through a lot.  I hope you come here often.

Rerun, Moderator    :welcomesign;
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Sydnee
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WWW
« Reply #3 on: May 20, 2013, 12:47:14 PM »
Hello,

Nice to see you still plan to travel.
Your baby # 3 was born the same year our baby #3 was born. I had eclampsia with him (went blind and had a seizure)

Even with that My hubby made it to dialysis before I did (not that it's a race)
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After a hard fight to not start I started dialysis 9/13
started on PD
hoping for home hemo starting to build a fistula 1/14
cause PKD diagnosed age 14

Wife to Ed (who started dialysis 1/12 and got his kidney 10/13)
Mother to Gehlan 18, Alison 16, Jonathan 12, and Evalynn 7. All still at home.
www.donate2benefit.webs.com
papacat
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« Reply #4 on: May 21, 2013, 12:02:12 AM »
 :welcomesign; Jonathan
Glad you joined IHD. You two have had your share of issues. Your RV setup sounds great. Keep us informed of your trips.
papacat
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Poppylicious
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« Reply #5 on: May 24, 2013, 02:24:02 AM »
 :welcomesign; Jonathan!
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
Wildrose
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« Reply #6 on: May 31, 2013, 03:18:58 PM »
 :welcomesign;
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1995 - Diagnosed with 'some kind' of kidney disease during first pregnancy at 16 yrs old due to excess protein in urine
1998 - Biopsy diagnosis of IGA Nephropathy at age 18
2007 - Successful second pregnancy, creatnine of 1.8 something
2009 - Successful third pregnancy creatnine of 2 something
2009-November of 2011 - Somehow went from Creatnine of 2 something to 5.43
November 2011 - Diagnosed with End Stage Renal Disease
3/28/12 - Started Peritoneal Dialysis
5/21/12 - Ended up in hospital for 5 days with PD fluid leaking through hole in diaphragm to right lung
5/25/12 - IJ catheter placed, 5/26/12 - First in center hemo treatment
6/15/12 - Back on PD for three weeks and hemo at same time, 7/7/12 - PD fluid leaked again, off PD and still on hemo, 7/15/12 - on PD again and hemo
7/23/12 - chest xray shows fluid leak again, off PD for one month with possible thoracic surgery in future to fix hole in diaphragm. 5.70 creatnine
8/7/12 - 24 hr urine test shows improved kidney function. 3.47 creatnine - Dr reduced hemodialysis from 3x's to 2xs a week.
CebuShan
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« Reply #7 on: June 01, 2013, 09:20:21 AM »
   :welcomesign;
Hope you keep us all informed as to your travel adventures!   :clap;
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Think GOD doesn't have a sense of humor?
HE created marriage and children.
Think about it! LOL!
Big E
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« Reply #8 on: June 01, 2013, 12:06:44 PM »
What a great idea to do your nxstage set-up in an RV! 
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PKD diagnosed June 1996
Started in-center hemodialysis May 2010
Joe
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« Reply #9 on: June 01, 2013, 07:49:11 PM »
Setting up in your RV is a great idea! Welcome to the group!
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
boswife
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us and fam easter 2013
« Reply #10 on: June 01, 2013, 07:54:14 PM »
YES indeed it is!!  and i just read over your "how to" and am so impressed!!  Great job and thanks for sharing !!!!!!!!!!!!!!
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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
lmunchkin
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"There Is No Place Like Home!"
« Reply #11 on: June 09, 2013, 08:07:46 PM »
Welcome & what a clever individual you are.  Glad you joined, we could learn alot about your adventures!

God Bless,
lmunchkin
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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
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