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Everlasting
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our community
« on: July 26, 2009, 05:36:04 PM »
Hello:  The reason for my participation on this site is in keeping with my advocacy for my partner who is in need of a live donated kidney.  I suspect dialysis will come shortly until we are able to find a donor.  We are feeling overwhelmed as many searches have been in vane.  We were unsuccessful at finding a relative who is compatiible for transplant purposes.  Following that we searched programs in Canada that offered the option of "paired live kidney donation searches".  We live on the eastern seaboard in Canada and my past career encompassed tasks of a medical auditor and disease classifier.  This has given us a bit of an edge as we are aware of protocols etc.  My partner is a chemist.
     The search for a donor keeps us busy and unfortunately at this point in time we are feeling bewildered, confused and overwhelmed with negative responses.
     We hope to organize a support group in September and writing proposals etc is a nice change from the researching and false expectations.
     We have found that by leaving the city on weekend get-a-ways is the solution to burnout.  My partner is a rockhound and I enjoy painting --- as he walks the beaches for agates I enjoy the out-of-doors painting experiences.  We usually stay at B&B and have met some wonderful people around the breakfast tables of the province.
     Our main goal at this time is to find a donor and from there proceed with the transplant team.  We are most hopeful that this site will fill the void that we feel in terms of support and information resources.
     Thank you for the opportunity to read your supportive posts and comments.
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willowtreewren
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My two beautifull granddaughters

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« Reply #1 on: July 26, 2009, 05:58:17 PM »
Welcome to IHD, Everlasting. I hope you find as much support here as I have.

I am my husband's caregiver in home hemo dialysis.

This site has a wealth of wisdom. Avail yourself of it often.

 :welcomesign;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #2 on: July 27, 2009, 12:57:44 AM »
Welcome Everlasting.  Sorry you're both going through this.  You'll find like minds here as well as lots of info and a few laughs too!
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
monrein
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Might as well smile
« Reply #3 on: July 27, 2009, 03:45:05 AM »
 :welcomesign;  I live in Toronto but spent some very memorable years in NS, teaching at Acadia University.  I did three years of home dialysis there before returning home to Ontario.  I am now on my 2nd transplant, having had the first for just over 23 years.
This site has been a great support and source of information and I wish it had been around when I was first starting this journey.  Post often and I hope you'll find here what so many of us value so much.
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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
willieandwinnie
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« Reply #4 on: July 27, 2009, 04:33:23 AM »
 :welcomesign; Everlasting. You'll find all kinds of information and support here. I too am a caregiver and would of been lost without this group. Hope to hear from you often.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
Rerun
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Going through life tied to a chair!
« Reply #5 on: July 27, 2009, 07:14:16 AM »
 :welcomesign; to IHD.  I hope you find the information you need on this site.  Thank you for joining.

                              :flower;
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lola
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I can fly!!!
« Reply #6 on: July 27, 2009, 09:35:53 AM »
 :welcomesign; :flower;
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www.caringbridge.org/visit/ottomachado
kellyt
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« Reply #7 on: July 27, 2009, 01:31:42 PM »
 :waving;    It is a frustrating journey.  Good thing he has you by his side.  And now you have the strength this site provides.  Welcome.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
breezysummerday
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« Reply #8 on: July 27, 2009, 09:23:13 PM »
Quote from: Everlasting on July 26, 2009, 05:36:04 PM
We are most hopeful that this site will fill the void that we feel in terms of support and information resources.

Dialysis Support And Information Resources R Us!

My s/o is on dialysis.  I can not begin to tell you how just about every question I had was answered.
IHD helped me to grasp the 'big picture'; emotionally for me and the physical/lifestyle/future
changes for my partner.

Hope I can pay it forward.  Let me know if I can help.
(it'll will be okay after the dust settles a little bit)
 :cuddle;   
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caregiver to Ray
renal failure 6/08
listed 7/09
~thank you epoman~
Jean
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« Reply #9 on: July 27, 2009, 11:20:24 PM »
 :welcomesign; Theres a lot of info here and a whole bunch of nice people also. Post often
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One day at a time, thats all I can do.
kitkatz
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« Reply #10 on: August 02, 2009, 07:15:19 AM »
Welcome.  This site provides a lot of support for many people on dialysis.  I hope you come visit often and read much!






kitkatz,Moderator
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #11 on: August 02, 2009, 11:54:51 AM »
Welcome to our community!  So glad that you found us!  As you must have seen already, this is just the place for information and support.  You see, this has evolved into a genuine family :grouphug;  caring and sharing.  Many of us have no idea what we would have done without this wonderful group.  So you just keep reading and above all keep posting.  We are very interested in hearing how things go for your husband (and you, of course).




Bajanne, Moderator
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
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