heatherh
Newbie
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Posts: 6
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« on: December 29, 2008, 10:40:48 AM » |
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Well I am suppose to introduce myself.. where does one start? I was diagnosed in March of this year and started peritoneal dialysis November. It was all quite a surprise even though my mother was on hemo-dialysis for a short time. Her kidneys failed and shortly after she came home from the hospital with the hemo machine. (yes we had the full blown machine in our home - there was no dialysis centers then and very few people on dialysis) she passed away months later. My sister was then diagnosed and under went PD followed by a kidney transplant she is doing well. The whole time the doctors said not to worry while they did not know what caused the failure they believed it was not hereditary. Well I am telling you it is hereditary as now I have it. So far things are going pretty good with the odd road block. I took some time off work to adjust to my new life style and with the cycler on its way it seems I hope to get back to work in January.
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willieandwinnie
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« Reply #1 on: December 29, 2008, 10:52:07 AM » |
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 heatherh. I am glad you found us and we can give so much information and support, it is amazing. Please post often.  |
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"I know there's nothing to it, but I want to know what it is there's nothing to"
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boxman55
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« Reply #2 on: December 29, 2008, 02:16:32 PM » |
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Thanks for joining IHD welcome to the site. we look forward to your posts. There is a ton of info here so please look around
Boxman,Moderator
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 "Be the change you wished to be" Started Hemodialysis 8/14/06 Lost lower right leg 5/16/08 due to Diabetes Sister was denied donation to me for medical reasons 1/2008 |
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kellyt
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« Reply #3 on: December 29, 2008, 02:30:18 PM » |
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 Good Luck to you and Welcome to the best support group around!
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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!  |
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Wenchie58
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« Reply #5 on: December 29, 2008, 03:22:35 PM » |
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 Welcome! You'll learn tons here!
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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"
Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match 10/24/08
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thegrammalady
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« Reply #6 on: December 29, 2008, 03:23:43 PM » |
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this is a great place to land
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s
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If you can smile when things go wrong, you have someone in mind to blame.
Lead me not into temptation, I can find it myself.
Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.
Some mistakes are too much fun to only make once.
Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
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Rerun
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« Reply #7 on: December 29, 2008, 03:53:41 PM » |
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Hi Heatheth, I'm glad you found us here at IHD. I'm glad you took some time off to settle in. I wish I had done that. Instead I just went on disability and gave up. You hang in there. |
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rookiegirl
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« Reply #8 on: December 29, 2008, 05:25:24 PM » |
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Hi there! to IHD. |
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
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monrein
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« Reply #9 on: December 29, 2008, 07:52:07 PM » |
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Glad to have you join us.
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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
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Ang
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« Reply #10 on: December 29, 2008, 09:45:41 PM » |
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live life to the full and you won't die wondering
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Bajanne
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« Reply #11 on: December 29, 2008, 09:51:37 PM » |
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Welcome to our community, heatherh! We are so glad that you found out site! This is the correct place for information, support, and even some fun. We are more than a website - we are family!  As you would have seen, there is lots to read here. But we also want you to post and let us know how you are doing. Looking forward to hearing from you. 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! |
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Joe Paul
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« Reply #12 on: December 29, 2008, 10:00:28 PM » |
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Welcome Heatherh, good to have you aboard.
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« Last Edit: December 30, 2008, 10:39:32 PM by Joe Paul »
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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
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paris
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« Reply #13 on: December 30, 2008, 09:23:29 AM » |
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Welcome. Glad you found us. How can the doctors not think it is hereditary with that history? Crazy docs! I am sorry your family has had so much to deal with. Sometimes life doesn't seem fair. I hope we can help with information and support. There are many here that use the cycler, so ask any questions you have. We are also here for support and sometimes a good laugh. Post often. 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. |
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adairpete
Full Member
Offline
Gender: 
Posts: 109
Me and Karl
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« Reply #14 on: December 30, 2008, 03:28:00 PM » |
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Hi heatherh, Glad you found this community as it's a good bunch of people with lots of knowledgeable advice and many listening ears to vent your thoughts and fears. It's crazy that the docs don't think it's hereditary considering your family history! My kidney failure (I'm pre-dialysis now, but well on my way) was caused by an inherited disease (distal renal tubular acidosis with medullary sponge kidney). Both my father and older brother have it, although their kidney function isn't as bad as mine. Best of luck to you as your start dialysis! Carolyn |
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Diagnosis: distal renal tubular acidosis with medullary sponge kidney
3/4/2010 started hemo via sub-clavian catheter
6/15/2010 listed for kidney (on hold)
8/2/2010 started CAPD
3/20/12 on active wait list for kidney
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Mimi
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« Reply #15 on: December 30, 2008, 10:36:55 PM » |
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Welcome to IHD heatherh....Come right in and make yourself at home.
Love, Mimi
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Death is not extinguishing the light;
it is putting out the lamp because the dawn has come.
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pelagia
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« Reply #16 on: December 30, 2008, 10:41:49 PM » |
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
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coorsbob
Jr. Member
Offline
Gender: 
Posts: 64
I dont live for dialysis, I do dialysis to live.
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« Reply #17 on: December 31, 2008, 11:16:18 AM » |
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Hi Heatherh, Ive been on the cycler for two months now and i have never felt better. I was on the hemo in center before that and that got old quick. So hope your training goes well and feel free to ask any questions cause most likely it is something we all have been through already. We Are all friends here! Look forward to hearing from you. Take care! Coorsbob  |
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Diabetic 1990
Discovered Bladder defect 1995
Bladder Surgery 1995
Retinal Hemorrhage 2005
Eye surgery 2005
ESRD February 2008
Perm-Cath installed March 2008
In-center Hemo March 2008
PD Cath installed July 2008
CA PD June 2008
CC PD November 2008
Fistula placed Sept 2009
Training for Home Dialysis on the NxStage System One January 2010
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Hilrose
Newbie
Offline
Gender:
Posts: 37
Me and my sister 09/08
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« Reply #18 on: January 02, 2009, 04:56:10 AM » |
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It sound like its very hereditary to me, I wish you all the best and look forward to your updates on your progress |
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hilrose- hemodialysis patient since April 2007
Transplanted from living donor March 2007 and failed
Kidney rejected August 2008 no longer considering removing
No longer on waiting list 2008
Neverless very happy to be alive!
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G-Ma
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« Reply #19 on: January 02, 2009, 06:47:27 PM » |
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07. Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
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