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teresacrouch
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« on: February 22, 2017, 02:23:43 AM »

 Hello My name is Teresa I am partner for my husband he started HD in center 2/2016. we transitioned to home in November using the nxstage system. We are trying to get a routine going. I work full time 12 hour night shift In pediatric cancer hospital. So getting a routine has been challenging to say the least. We have 3daughter 25, 19 ,14 . They are amazing and completely involved in his care. I am so happy to have found this site with people being real and all the info it has so calmed me down to hear other peoples experiences. Because I am a Nurse I feel that I was expected to get this immediately.
 Hate HD but love that it keeps our family together
  :thx;
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SooMK
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« Reply #1 on: February 22, 2017, 05:19:49 AM »

Welcome Teresa!
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
Charlie B53
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« Reply #2 on: February 22, 2017, 05:26:03 AM »


Welcome Teresa!
Your training help immensely to understand the importantance of establishing a regular treatment routine.  Getting s regular schedule and adjusting to the rigors of keeping every little thing in it's place can make a huge difference in both set-ups and running.  Problems will be expected to happen, having the configence and the necessary material supplies at hand make it much easier to handle those unexpected glitches.

He is very fortunate to have such a qualified and supportive partner and Family.

Take Care,

Charlie B53

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iolaire
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« Reply #3 on: February 22, 2017, 06:04:53 AM »

Welcome, I feel for those of you who work in a medical field requiring 12 hour shifts...
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Kathymac2
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« Reply #4 on: February 22, 2017, 06:22:51 AM »

Hi Teresa,

I'm a nurse too so I know what you mean about being expected to take in all the new information the first time it's explained. I always tell my husband not to mention that I am a nurse, but somehow it always comes out in the conversation.   He tells young people , "always marry a nurse who knows how to cook" (ha, ha).

Welcome to IHD.  :welcomesign;

Kathy
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OldKritter
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« Reply #5 on: February 22, 2017, 10:10:32 AM »

welcome
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LorinnPKD
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« Reply #6 on: February 22, 2017, 10:49:22 AM »

Welcome, Theresa!

I'm so glad your daughters are active and involved -- that's simply wonderful and such a gift.

Lots of good information to be found here.
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Simon Dog
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« Reply #7 on: February 22, 2017, 11:09:02 AM »

Welcome to the club Theresa.

If your husband is up to it, tell him dialysis is his job.   My wife is an RN and, while it is comforting that she is around to assist if I have any problems, she does not participate in my treatment unless something goes wrong or I an injured and cannot do all setup/teardown tasks myself.   This really helps when I am due to finish dialysis a couple of hours after she has gone to bed.
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DayaraLee
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« Reply #8 on: February 22, 2017, 01:35:57 PM »

Welcome, Theresa. This is a wonderful community, and I agree completely with you - it gave me a sense of calm to realize that real people with real experiences are here and willing to share and answer my questions. 
:welcomesign;
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My husband is the one with CKD, but I'm who needs the coping strategies!
CKD Stage 3A, Diabetes Type II, Hypertensive, Stubborn...

"What is love? Love is the absence of judgment."  ~Dalai Lama
cassandra
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When all else fails run in circles, shout loudly

« Reply #9 on: February 22, 2017, 04:02:52 PM »

Welcome to the site Theresa

   :welcomesign;



Take care, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #10 on: February 22, 2017, 07:33:47 PM »

Hi Teresa...welcome. The folks here are the best when it comes to NXStage home hemo. My daughter was only on it for a bit under a year before her transplant, but it was WAY better than in center :)
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My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
teresacrouch
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« Reply #11 on: February 23, 2017, 02:36:53 AM »

 :thx; :thx; THANK YOU ALL So happy to have found IHD.
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PrimeTimer
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« Reply #12 on: February 23, 2017, 10:28:48 AM »

 :welcomesign; Welcome to ihd, teresa! As a wife and nurse, you will probably find doing home hemo with your husband very rewarding. The benefits are nearly "instant". Good luck to you both!
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
SuperHuman
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Hello, nice to meet you!

« Reply #13 on: August 01, 2017, 12:28:11 AM »

Hello Teresa,
I have been on home hemo Nxstage on and off many years. It does have it's ups and downs.
Your husband is so lucky with the type of a support structure like your family has! Sounds like he's in perfect hands! I have always for the most part done my home hemo dialysis
alone. It's very doable, though i don't expect anyone to just jump right into that, though sometimes patients do take advantage of caregivers, and literally want them to do
everything! Maybe your husband, if he is healthy enough.. maybe take a little more care into his own hands,.. he doesn't have to do it all, but maybe step up his game a bit!
If one person can do everything, five persons caring surely can find a working routine! The less important things, maybe the daughter can do ahead of time, you can make care packs
so you don't always have to get supplies ready. There is ways to save time, fill out flow sheets ahead of time, for the things that will always be the same. Just think about how
you can save some time doing these treatments, and I'm sure you will come up with at least a dozen time saving solutions!



« Last Edit: August 02, 2017, 07:28:02 PM by SuperHuman » Logged

"With Science, Technology,..and a little will power! anything is possible"
Michael Murphy
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« Reply #14 on: August 01, 2017, 06:45:20 AM »

Welcome, ESRD is a strange problem cause in reality it effects the entire family.  While family support is vital it also need to be understood.  It is important to also make time for children and more importantly yourself.  You have a high stress job and a high stress role in your husbands care,  remember to allocate some me time to recharge your self.
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Mbrownokc
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« Reply #15 on: August 13, 2017, 04:25:41 AM »

"Because I am a Nurse I feel that I was expected to get this immediately. "
Hon just because you know certain things don't mean this is an easy transition at all. I'm learning this myself because as nurses, we think we've seen it/done it all but it's completely different when it's not just dealing with it the few hours you are at work. This is a 24 hour a day job basically if you think about it. It will get easier as time goes on but please remember there is such a thing as caregiver burn out and try to give yourself some time to adjust and acclimate. If you don't get it,  let the dialysis team know so they can try to help you a little bit until you find your "zone" once you get it, you got it. Keep your head up.
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