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Author Topic: We are the newbies :)  (Read 2771 times)
DonnaPaul
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« on: November 08, 2011, 05:01:02 AM »

Hello, My name is Donna and my husband is Paul.  Paul is 45 today and we will be spending it at the dialysis clinic.  Last week we were in the hospital for a diabetic ulceration on Paul's foot.  7 days later we came home with a wound vac and the diagnosis of ESRD.  He had 3 dialysis tx in the hospital.  Welcome to uncharted territory for us.  We have been married 25 years and we have 3 children.  Our lives changed drastically once in 1999 when Paul was hit by a drunk driver.  However, this is all new for us so I am a nurse (neuropathy, ortho, and oncology) but this is all new.  Was told to find a good forum and after reading several post here===here we are.  Any suggestions, info, and how not to "freak out" over this would be helpful==this is day 3 of our "new normal"
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willowtreewren
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My two beautifull granddaughters

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« Reply #1 on: November 08, 2011, 06:59:40 AM »

 :grouphug; Donna. :grouphug; :grouphug;

Perhaps the first most important thing to do, now that you are facing a new normal, is to educate yourself about the many different modalities for dialysis. The most common is in-center hemo 3/wk. This is adequate, but not the BEST modality.

There is also PD (Peritoneal dialysis) done through an abdominal catheter at home and at night for many. This may not be a good choice for your husband since it adds glucose to the system.

You can do hemo dialysis at home with a machine called NxStage in the US. This requires a commitment from a care partner and the time to do it. This modality is very good for the outcomes since most folks dialyze 6 days/wk. Remember that normal kidneys are working 24/7.

This is a start for you. Read through the many threads to learn more, and if you don't find what you need, just ask.

You've come to a very good place both for support AND information.

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. :)
Rerun
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« Reply #2 on: November 08, 2011, 07:29:55 AM »

Hello DonnaPaul, and welcome to IHD.  I'm so glad you found us.  Donna, you are fortunate you are a nurse.  I think when you ask questions at the dialysis clinic they will tell you because you ARE a nurse and not dumb like they think the rest of us are who wouldn't understand the process.  So take advantage of that.  Ask questions.... and then come here and get the truth as we see it.

Knowledge is power.  Lots to learn.  Once you get the routine down you just fit it into your already busy lives.  You can do this.

Rerun, Moderator      :welcomesign;
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Poppylicious
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« Reply #3 on: November 08, 2011, 09:25:26 AM »

 :welcomesign; Donna and Paul!  Sorry you're facing a 'new normal', but lovely to have you here to share the burden with us.
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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.
YLGuy
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« Reply #4 on: November 08, 2011, 09:28:15 AM »

 :welcomesign;
There is a lot of good information and great people here.  If you have any questions, please do not hesitate to ask.
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looneytunes
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« Reply #5 on: November 08, 2011, 05:36:14 PM »

Hi Donna and Paul.  Glad to have you here though sorry that you have a reason to be.  You'll find a lot of great folks on here who will be glad to share their knowledge, experiences, advice and support with you.  Your "new normal" is certainly going to be a big change in your lives.  Learn all you can and make choices that you feel are the best for you.  And if you run into something you don't know what to do about.....just ask.  There's rure to be someone on this board who knows something about it.   :welcomesign;
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"The key to being patient is having something to do in the meantime" AU
boswife
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us and fam easter 2013

« Reply #6 on: November 08, 2011, 07:07:03 PM »

Welcome to the both of you :)  It's wonderful here so i hope you feel right at home and join in.  Sooooooo much great info and friendship here.   :welcomesign;
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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 #7 on: November 10, 2011, 06:00:36 PM »

Welcome DonnaPaul.  Sorry you are going through all of this Crazy stuff.  You are not alone in this. We went through all of that years back and it finally calmed down for husband (who has ESRD).  Just do the best you can do and hopefully things will settle down for you.

Diabetes is such a wicked disease, and it will take all that you have if you dont do what needs to be done to stop its progression!  Is that what caused his kidney failure?  Just hang in there girl and know that IHD is here for you!  Any questions you have, just ask away and we will try to help.  Lots of people here know what you are going through, so let us help!

 
:grouphug; Donna. :grouphug; :grouphug;

Perhaps the first most important thing to do, now that you are facing a new normal, is to educate yourself about the many different modalities for dialysis. The most common is in-center hemo 3/wk. This is adequate, but not the BEST modality.

Aleta


I totally agree with this.  In-Center is just enough to be "legal" but he can get better dialysis at home.  I think NxStage "Extended" or for 3 hrs or more 5 -6 days a week is gonna be better for Paul.  He will feel so much better and being in home enviroment MEANS ALOT!

Again Welcome & God Bless,
lmunch :kickstart;
« Last Edit: November 10, 2011, 06:11:30 PM by lmunchkin » Logged

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
Ang
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« Reply #8 on: November 24, 2011, 11:57:54 PM »

 :welcomesign;
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live  life  to  the  full  and you won't  die  wondering
billybags
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« Reply #9 on: November 25, 2011, 05:16:47 AM »

 :welcomesign; Welcome to our family. I am sorry that you are now going to travel along a new road. Do not be afraid of asking questions, we will be here for you both.
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Wenchie58
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« Reply #10 on: November 25, 2011, 03:34:23 PM »

 :welcomesign;
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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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