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Vicky
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« on: January 20, 2009, 05:31:03 PM »
My husband, Dave, has been diagnosed with IgAN Stage IV and he's facing dialysis within the year.  His GFR is 16.83 right now and his creatinine and BUN are steadily climbing.    He's 54 years young, soon to be 55 and we're pretty much scared to death.

We do see the nephrologist on Monday to see what all he wants to do for now and find out when we need to prepare and what we need to do to prepare.

We live in the middle of no where Idaho, 3 hours from the nearest dialysis center, so it means we will be moving unless he can do peritoneal dialysis, which i'm doubting since he has type 2 diabetes and it's out of control.  So we'll find out MOnday and go from there I guess.
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Vicky
been there done that
Wenchie58
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« Reply #1 on: January 20, 2009, 05:35:19 PM »
Welcome Vicky!

  I can understand your hubby's fears.  I had them too and have fallen greatfully into the arms of the members here at IHD.  You will find answers, support, research information, love, hugs, room to scream and room to cry here.  Welcome aboard!


Another Vicki
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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
Rerun
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Going through life tied to a chair!
« Reply #2 on: January 20, 2009, 05:39:58 PM »
Vicky where in Idaho.  I use to live in Bonners Ferry.  Just curious!

You may want to read the section here on NxStage.  It is a little home dialysis unit.

http://ihatedialysis.com/forum/index.php?board=37.0

Spend some times on this site so you have lots of questions to your doctor.

                                       :welcomesign;
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swramsay
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My son, Scotland, is my heartbeat.

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« Reply #3 on: January 20, 2009, 05:41:59 PM »
Hi.
Big decisions ahead for you. I'm kindof new to all of this myself. This is my 5th month on dialysis. Next week I will begin training for Home Dialysis. Any idea where you might move? Spokane? I live just south of Seattle. Most of my medical care is in Seattle but I dialyze in Puyallup (for another week anyway). If you decide to move out to the Seattle area, let me know!

Wendy
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JUST KEEP GOING.
March 2009: NxStage Pureflow Home Dialysis 5-6 x's week
Sept 2008: In center dialysis
Sept 2008: Left kidney removed (bladder cancer)
April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets.
April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer)
Feb 1994: Original bladder cancer diagnosis & beginning of this journey

www.marykay.com/wramsay
kellyt
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« Reply #4 on: January 20, 2009, 06:01:22 PM »
Welcome Vicki!     :welcomesign;      I, too, have IgA Nephropathy.  I was diagnosed in 1994 and was lucky enough to never be on dialysis and get a live donor 2 1/2 months ago on Nov 5th.  I understand your husband's fears.  Give him a big hug and ask him to join us whenever he wants!  Knowledge is power and you will find a lot of "power" on this site.  Read!  Read!  Read!     :cuddle;
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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
jessup
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« Reply #5 on: January 20, 2009, 06:07:33 PM »
G'day and  :welcomesign;
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G-Ma
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« Reply #6 on: January 20, 2009, 06:32:56 PM »
 :welcomesign;
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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
monrein
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Might as well smile
« Reply #7 on: January 20, 2009, 07:07:27 PM »
 :welcomesign; 
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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
peleroja
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« Reply #8 on: January 20, 2009, 07:49:39 PM »
Welcome, Vicky.  My friend has Type 1 diabetes and she did PD for several years prior to receiving a transplant.  Ask your doctor about Extraneal as it doesn't contain dextrose.  Best of luck to you, and keep us posted on what's going on with you and Dave!
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Romona
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« Reply #9 on: January 20, 2009, 07:52:36 PM »
 :welcomesign;
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Joe Paul
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« Reply #10 on: January 20, 2009, 10:12:18 PM »
Welcome Vicky, 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
Bajanne
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« Reply #11 on: January 20, 2009, 11:25:34 PM »
Welcome to our community, Vicky!  Here you have a wonderful group of sharing caring (and daring, as Twirl says) individuals.  We support each other all the way, with our cybershoulders to cry on, our cyberhugs, our caring thoughts and prayers when you are faced with further challenges.  In fact, it is no hype when I say that this is more than a website; it is a family  :grouphug; [I have tons of proof]  This is a great place for information, but also a good place when you need to vent or rage or rant with people who totally UNDERSTAND.  So keep reading and keep posting.  Let us know how your husband is doing (and you too!)
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! :grouphug;
petey
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« Reply #12 on: January 21, 2009, 01:11:15 AM »
Welcome, Vicky!  My husband also has IgA Nephropathy, and we also know what it's like to be young and facing dialysis.  My husband started when he was 39 (he's 53 now).  You may want to ask about home hemo since you live so far away from a clinic; that's the modality we use, and it's great for us.  Best of luck to you both, and know that we're here if you need us.
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willieandwinnie
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« Reply #13 on: January 21, 2009, 04:52:52 AM »
:welcomesign; Vicky. Another special caregiver that will find lots of information and support here. Hope you stick around and post often. Please keep us updated on how things are going.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
boxman55
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« Reply #14 on: January 21, 2009, 05:40:06 AM »
welcome to IHD Vicky, glad you found us. Sorry to here about your husband but know we are here to help. Please post any questions you might have in the appropriate forums and our members will respond with an answer for you. Again welcome


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
paul.karen
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« Reply #15 on: January 21, 2009, 06:17:59 AM »
:waving; Vicky

Nice to have you here.
Luckily you have a year or so to make some decisions for you and your husband.
It wont be easy but having that time frame will hopefully help you make the right choices to suit you both.

P&K
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
lola
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I can fly!!!
« Reply #16 on: January 21, 2009, 09:27:08 AM »
 :welcomesign;
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www.caringbridge.org/visit/ottomachado
MandaMe1986
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« Reply #17 on: January 21, 2009, 10:48:29 AM »
Hi  :waving;  I am sorry to hear about your husband.  I am sure this site will provide a lot of support. Good luck
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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
thegrammalady
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« Reply #18 on: January 21, 2009, 12:30:22 PM »
no matter what, this is a good place to land.  :welcomesign;
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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.

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For You Are Crunchy And Taste Good With Ketchup
Normie
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Ellie
« Reply #19 on: January 21, 2009, 05:49:39 PM »
 :welcomesign;
Glad you found us. 
Normie
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Normie

Kidney damage 4/22/07

Predialysis
Vicky
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« Reply #20 on: January 21, 2009, 06:37:27 PM »
I'm not really sure where Bonners Ferry is I've heard of it tho.  We're in a little town called Salmon, we're three hours from either Idaho Falls or Missoula, Montana so traveling for dialysis is not really an option.

I have a list of questions started and am keeping track of all his tests and visits and everything I can think of.  I had to order a large BP cuff and I'm still waiting for that to come in so I can start keeping track of that too his BP is pretty high 140/90 last check. his A1C was almost 300 again he had it down to 80 once but it's gone back out of control again and they added Actos to the mix.

The only thing the neph has done so far is add a beta blocker, Toprol XL 50 mg qday.

I have to get a folder to hold his blood work and all tests and office visits.  i hate reading them because they are never good but need to stay on top of things as much as I can since Dave is basically in denial about everything.  He thinks he wil get a transplant and life will go back to normal and everything will be fine.  Not even sure they will consider him as a candidate for a transplant.  but we'll see.

Quote from: Rerun on January 20, 2009, 05:39:58 PM
Vicky where in Idaho.  I use to live in Bonners Ferry.  Just curious!

You may want to read the section here on NxStage.  It is a little home dialysis unit.

http://ihatedialysis.com/forum/index.php?board=37.0

Spend some times on this site so you have lots of questions to your doctor.

                                       :welcomesign;
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Vicky
been there done that
paris
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« Reply #21 on: January 21, 2009, 07:12:33 PM »
 :welcomesign;  This is a very hard time--there is so much to learn and absorb.  Your husband is fortunate to have you  taking care of things for him.  Keep reading through the posts here.  There is a lot of great information.  And keep asking questions; members will be glad to help you.  And ask lots of questions when you see the nephrologist.  If you don't understand what he says, make sure he clairfies it for you.  It can all be overwhelming.   There are many caregivers here that will be more than happy to share their experiences.  Keep us updated on your husband.  Take care of yourself, too.   :cuddle;




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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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