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Author Topic: Hello, all  (Read 2192 times)
dachsiegrrl
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« on: June 18, 2009, 02:57:08 PM »
So hello, new member here from Ohio.

Diagnosed with FSGS at age 16, first went on dialysis, first in-center HD then home PD, at at 23 (1997) and got transplant in June of that year.
Went back on dialysis about a year later; attempted to go back on PD but couldn't do it, even tho I'd never had peritonitis or anything like that. Went back in in-center HD while finishing up graduate degree and working.
In the meantime, kept working and married my husband in September 2001...still can't figure out why he has hung around for all of this. ;)
Got second transplant (from a diabetic cadaveric donor...yayyy) in April 2002, and went back on HD in October or so of that year.
Started training for home nocturnal hemodialysis in spring 2003 and returned for a second graduate degree in fall 2004.
During summer 2005, I read a CNN article about the NxStage machine in which Dr. Kraus at IU was interviewed and called them to find out more. I was able to get into their training program in a fairly short amount of time and have been dialyzing 6 days a week at home ever since.
Now, we're hoping to try and get pregnant, for which we will go from  about 1.5 - 1.75 hours six days a week of treatment to 2 - 2.5 hours seven days a week. We're hopeful; we'll see. Meanwhile, I'm halfheartedly listed for a third transplant, altho I'm told that my sensitivity is very high and it is unlikely that I'll be matched. Also, FSGS recurred in both transplants, so my neprhologist isn't optimistic about the chances of a third transplant, at least at this point.
So that's the kidney story...over time, I'm sure I'll bore you all with details of other health issues such as brain tumor, gall bladder, and the bad bones thanks to 12+ years of dialysis.
Other than that, I have three great miniature wirehaired dachshunds; you can see Gracie in my profile pic. Hobbies, which come in useful during treatments, include cross stitching, crochet, and knitting, among others. I work as an instructional designer, and I'm lucky that my company is telecommuter-friendly, which has been really helpful with my home treatments.
So sorry for the lo-o-o-o-o-o-ong post, and I look forward to getting to know everyone!
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Brightsky69
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« Reply #1 on: June 18, 2009, 03:00:36 PM »
 :waving; Hello and Welcome!
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
MandaMe1986
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« Reply #2 on: June 18, 2009, 03:56:23 PM »
 :welcomesign;
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
monrein
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Might as well smile
« Reply #3 on: June 18, 2009, 06:50:30 PM »
 :welcomesign;  Glad you found us 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
willowtreewren
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My two beautifull granddaughters

WWW
« Reply #4 on: June 18, 2009, 07:10:30 PM »
Glad to meet you. By now you are probably and expert on NxStage!  :2thumbsup;

Welcome to a great group. Post often. I'm looking forward to getting to know you better.

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. :)
dachsiegrrl
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« Reply #5 on: June 18, 2009, 10:08:03 PM »
So thank you, everyone!

Looking forward to getting to know everyone.

Especially, I'd love to hear about anyone's experiences with pregnancy and dialysis. I'm so both excited and apprehensive about this quest, and I really feel like I'm "Steel Magnolias" Shelby, getting advice on both sides of the issue. I think the best advice is along the lines of "I'd rather have 30 minutes of wonderful than a lifetime of nothing special."
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dachsiegrrl
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« Reply #6 on: June 18, 2009, 10:11:38 PM »
Quote from: willowtreewren on June 18, 2009, 07:10:30 PM
Glad to meet you. By now you are probably and expert on NxStage!  :2thumbsup;

Welcome to a great group. Post often. I'm looking forward to getting to know you better.

Aleta

I don't know if I'd call myself an "expert," but I can certainly share my experiences on my particular machine. And I can, of course, share my completely biased opinion that my specific machine is just about the best thing to come along since sliced bread. Don't get me wrong, there are some things upon which I'd improve, but my view is: if I have to be on dialysis for the rest of my life (and that is a distinct possibility), this is the way to do it. And Dr. Kraus and all the IU staff are absolute angels. They are angels straight from heaven.

props to any Raising Arizona people who recognize that quote.   :)
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Joe Paul
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« Reply #7 on: June 18, 2009, 10:46:55 PM »
Welcome Dachsiegrrl, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
willieandwinnie
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« Reply #8 on: June 19, 2009, 03:30:26 AM »
 :welcomesign; dachsiegrrl. I love dachshunds. Wow, you have been through the ringer haven't you. You have found a great place that will offer all kinds of information and support and I know we can learn a thing or two from you. Keep posting.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
Inara
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« Reply #9 on: June 19, 2009, 03:18:58 PM »
 :welcomesign;
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*Primary Caregiver of Leslie, my best friend.  She's been on dialysis for 9 years.
*Dialysis Nurse for 9 years
*HUGE Sci-Fi fan!! (Yes, I'm a dork)
*Recovery from broken leg.....85% healed and that's the best it will ever be.....a slight limp is kinda sexy, huh?
Romona
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« Reply #10 on: June 19, 2009, 07:42:58 PM »
 :welcomesign;
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #11 on: June 22, 2009, 03:10:57 AM »
Welcome to IHD.  Wow, you've been through a lot.  Good luck with the pregnancy quest - at least you'll have fun trying eh?  It sounds like you can do anything!  Good on you.
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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.
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