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Author Topic: Hubby Starts May 15th  (Read 6371 times)
eeyore31573
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« on: May 01, 2012, 05:38:14 AM »
Okay so we got the approval.....short story out of a long back story ....4 years incenter dialysis 4 years transplant 2 years brain cancer and now starting training for NxStage.....I will try to keep everyone updated on our encounter of training and progress....as a wife and caregiver I am scared but the hubby has confidence in me so bring it on!!!!
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Joe
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« Reply #1 on: May 01, 2012, 06:48:26 AM »
eeyore, I'm sure you'll both do fine. Just take it a step at a time and be comfortable before you move on to the next stage. Good  luck!
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Live simply. Love generously. Care deeply. Speak kindly.
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deniferfer
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« Reply #2 on: May 01, 2012, 09:55:16 AM »
Good luck and Love your bring it on attitude. You going to do fine and like Joe said take it on step at a time. 
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1981-1995: Perfectly fine
1996: November, started feeling sick
1997: April, creatine at 17 and began dialysis    
1997: May Place on PD
2006: Had to replace PD tube
eeyore31573
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« Reply #3 on: May 01, 2012, 04:07:24 PM »
thank you for the support....
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amanda100wilson
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« Reply #4 on: May 01, 2012, 04:21:56 PM »
Hi, I am doing NxStage since last October.  It is scary at first but you will get there.  You may also wish to go to Home Dialyzors United website, and may also want to apply to join their Listserve. The latter is for those doing NxStage and/or their carartners.  Plenty of help and advice through experience.  You will not be able to join until your husband actually starts on May 15, but you are more than welcome to apply to join, and since I am a moderator, I will be able to approve you at that time.  Link is:   http://health.groups.yahoo.com/group/NxStageUsers/
Good luck, Amanda
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
MooseMom
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« Reply #5 on: May 01, 2012, 06:01:27 PM »
Quote from: amanda100wilson on May 01, 2012, 04:21:56 PM
Hi, I am doing NxStage since last October.  It is scary at first but you will get there.  You may also wish to go to Home Dialyzors United website, and may also want to apply to join their Listserve. The latter is for those doing NxStage and/or their carartners.  Plenty of help and advice through experience.  You will not be able to join until your husband actually starts on May 15, but you are more than welcome to apply to join, and since I am a moderator, I will be able to approve you at that time.  Link is:   http://health.groups.yahoo.com/group/NxStageUsers/
Good luck, Amanda

Amanda, I am a bit confused about the Listserv.  I don't know much about listservs, so this may be a stupid question, but why can one not join until you actually start NxStage?  I've just joined HDU (I'd been a NxStageUser member for a while but had not updated my membership since it became HDU), and I am therefore able to register for the webinars (I've just been advised of the first one on 24 May), so why can't I join their listserv?  I'd like to be as informed as possible before I actually have to start D.

Thanks!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
boswife
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us and fam easter 2013
« Reply #6 on: May 01, 2012, 07:02:06 PM »
oh boy MM, i was in your spot of wonder too... i got a good answer from Rich over there and posted it somewhere here  but dont know where so we'll let amanda answer for ya.  I know part of it was that they want people to be able to be bluntly honest with whats going on with treatment etc. w/o the thought that someone may lurk that wouldnt approve of how advanced we hhd are..lol  Anyway, i didnt explain that at all well, and i do think there should be exceptions to the rule like if someone knows of someone like you and can vouch for them, that then they could get on the listServe.  It's amazing i can say that as there is SOooooooooooooo much experience there that you couldnt learn from anyone but users.  It's a great place like here with amazing help.  Hope you get a good answer and i wonder if they would take my suggestion... think i'll go ask...
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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
eeyore31573
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« Reply #7 on: May 04, 2012, 02:35:02 AM »
update.....hubby is not doing well right now....dang toxins ....so the plan is to do incenter  :banghead; dialysis tomorrow (Saturday) and then Tuesday, Thursday, Saturday next week....the good thing is the "chair" we were able to get is downstairs from where we will be training....it is still over an hour away from home BUT, willing to do whatever is needed and I have talked our trainer into letting me get "the book" so I can start reading all I can....lol she was impressed that I have researched NxStage and I am not walking into training blindfolded lol....I told her IHD and youtube are great informants lol :shy;....she asked me what IHD is...I smiled and said that is one I will explain later lol :2thumbsup;
« Last Edit: May 04, 2012, 02:50:39 AM by eeyore31573 » Logged
willowtreewren
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« Reply #8 on: May 04, 2012, 08:12:44 AM »
I found the learning curve pretty steep at first, but after while at home, everything became pretty routine.  :2thumbsup;

I'm glad you are going for this.

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. :)
big777bill
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« Reply #9 on: May 04, 2012, 11:31:37 AM »
 Eeyore your story sounds just like mine. I've been home with NxStage for about a month now. Things are so much easier than when I was going to the center. I'll keep you both in prayer. God Bless, Bill
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liver transplant 3/22/2005
CKD 2008
 
fistula 11/17/2011
 catheter 2/07/2012
 started  hemo-dialysis in center 2/07/2012
 fistula transposition 3/08/2012
 NxStage at home  3/29/2012
 Using fistula at home 6/25/2012
 Using new NxStage S High-Flow cycler 3/04/2014
eeyore31573
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« Reply #10 on: May 05, 2012, 08:31:52 AM »
Thanks everyone and bigbill would love to compare notes lol.....we are here at the incenter now....wow kinda glad we are doing the first one here it was emotional for both of us......fistula has not been used in almost 6 years....good sticks on the first try woo hoo...no drama there.....again I say WE CAN DO THIS!!!!
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boswife
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us and fam easter 2013
« Reply #11 on: May 05, 2012, 05:57:23 PM »
oh im sooooooooo glad the incenter went well!!!   It's all do able!!  wheather incenter or home.  I couldnt have done home as a 'start'... Heck, i couldnt even think about it for nearly a year, went in for meating to think about it, backed out, and then finally got the nerve and we did it  ;D  You'll make it what ever you got to do and thats because ya willing to make it work  ;)  Im the 'doer' he's my patient..lol  But we make it work cause thats how we do things, but it aint always fun, thats for sure.  All the best,  :pray; for continued succes, and it'll be better if/when ya get to do home.   :grouphug;
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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
eeyore31573
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« Reply #12 on: May 06, 2012, 05:19:28 AM »
boswife....he did incenter for 4 years before his transplant ....he said he really did not want to do that again....the words he said to his doctor ...I will tolerate it for 4 days! then my nurse will go into training and we will do it! lol again I say I am glad he has confidence in me lol way more than I can give myself credit for......He told the nurses yesterday when he was told he had 3-6 months to live (cancer) I took him home and MADE him get better just so I would have someone to pick on....She came out and told me that and asked me if I was going to be nicer to him this go around....I said well would it have been better for me just to let him give up and die? I don't think so.....just think I will now be the happiest woman on the Earth....would you make someone mad if you knew they were gonna stick you with those HUGE needles....I don't think so!!!! She then said you know this is not a joke right....I said my motto is go through life laughing with the ones you love! prayer is best med #1 laughter is best med #2! and at that she walked back into the hole she came out of!
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eeyore31573
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« Reply #13 on: May 09, 2012, 07:36:45 PM »
can I just say dialysis is killing me!!!! Training nurse is coming over tomorrow and OMgoodness I have been cleaning ALL day long....spare room will now be called the supply room.....and Dwayne (my hubby) has been saying it's good enough since about 2 lol....oh well I hope everything goes good tomorrow!!! We start training Tuesday!!!
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eeyore31573
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« Reply #14 on: May 11, 2012, 03:17:45 PM »
wooo hooooo house passed inspection!!!!! we will start tuesday at 9am !!!!! :sir ken; lol  :yahoo;.......now my question is who pays for the plumbing??? the kit was left at the house for the plumber to install  :waiting; nobody has mentioned a cost on running the lines.....
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Lovebelle
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« Reply #15 on: May 15, 2012, 10:00:46 PM »
We didnt have a plumber install the lines. My HH nurse actually helped me install them.

So how did your first day of training go today?
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eeyore31573
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« Reply #16 on: May 16, 2012, 03:49:35 AM »
wellllllll......Day 1 is done! lol our training nurse says I should be sticking him by Thursday or Friday  :bandance;!!! OHHHHHHH LAUD lol......but right now we have info overload on the brain lol....I think I am more worried about the machine set up than the sticking him part at this point lol
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ESRD Survivor
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« Reply #17 on: May 16, 2012, 08:28:34 AM »
Our unit arranged for a plumber.  I am sure my insurance was charged.

Good luck with training, it is a lot of information to take in!
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lmunchkin
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"There Is No Place Like Home!"
« Reply #18 on: May 16, 2012, 07:02:11 PM »
Eeyore, you are going to be fine.  Yes there is a lot to take in and you are probably thinking "God why did I chose this?".  Trust me, we have all thought it but it will pay off in the long run.  You may not see that now, because you are in the beginning stages, but over time, it will be so routine.

Just trust in what your nurse is training you.  Absorb it all.  Will you make mistakes? Absolutely, but you will learn from it.  Just hang in there, it will all become natural over time.  I will soon be doing NxStage for almost 2 years, and I am so glad we did.  J is doing so well, and the fact that he is at home with out time restraints & rules, has just really been a Blessing.

Hang in there Eeyore, you will  get throuh this just fiine. They will not release you until "they" know you can do it!  YOU WILL, I promise!  It is all very overwhelming, but eventually it will "Click".

We are all here if you need us.  I may not be able to respond right away, but Amanda, Cattlekid, Boswife, Bill ect...... a hole host of others are available. Just ask anything, and we will get your answer.

God Bless you Eeyore and Im so proud to hear of another NxStager!  You'll be so proud that you did, as it is no easy feat for sure, but you can do this!

lmunchkin :kickstart;
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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
eeyore31573
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« Reply #19 on: May 17, 2012, 03:44:47 AM »
lmunchkin.....thank you I was having my doubts this morning lol....yesterday the training nurse said if we keep up at the rate we are going 1.5 weeks...I clamed up and got worried I finally let my nerves take over.....I am going in today to talk to her and let her know praise for a job well done is ok...but don't hit me with a bomb shell like that again because I am so not comfortable going home yet lol
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big777bill
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« Reply #20 on: May 17, 2012, 05:50:43 AM »
 The nurse never should have said that. If she's been training for any time at all she knows that 1.5 weeks is just about impossible! There is too much to learn. I thought I was going to get through it in 2 weeks. What a joke! It took all of 3 plus a couple of extra days. There is a lot of info to take in but you'll get it. Even if you were to get it all down that fast they will not let you go home until you're totally comfortable with doing it. However long it takes it's worth it. I've felt much better doing hemo at home as opposed to in-center. Wishing you the best, Bill
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liver transplant 3/22/2005
CKD 2008
 
fistula 11/17/2011
 catheter 2/07/2012
 started  hemo-dialysis in center 2/07/2012
 fistula transposition 3/08/2012
 NxStage at home  3/29/2012
 Using fistula at home 6/25/2012
 Using new NxStage S High-Flow cycler 3/04/2014
lmunchkin
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"There Is No Place Like Home!"
« Reply #21 on: May 22, 2012, 06:03:30 PM »
Bill is right, the nurse shouldnt have told you that, but she may have been trying to "boost" your confidence as you said!

So how has it been going?  Are you getting the gist of it Eeyore?  Will you be doing PureFlow or use hanging bags?  Praying you are okay and still hanging with it!  Let us know!

God Bless,
lmunchkin :kickstart;
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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
eeyore31573
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« Reply #22 on: May 25, 2012, 04:02:40 PM »
ok so it has been a few days since I had a post....first of all training has gone really well!!! I can load the cycler prime connect and all of my sticks (even the VERY first one) has been perfect....we had to do 1 manual rinse back (which I will start building more muscles for lol) because he clotted 10 minutes before treatment was over....so all in all pretty good!!! we were supposed to finish up this Thursday the 31st and we will be using Prueflow for the most part...Davita/NxStage delivered the cabinet and cycler Tuesday evening, which was a freakin' night mare (driver just left EVERYTHING on the back porch!) Needless to say our training nurse had a fit and called the delivery people and well lets just say went off.....so we are almost ready to get this thing going....BUT the transplant has it's own mind.... Dwayne was admitted to the hospital Thursday morning with pain in his transplant area.... ct scan last night, dialysis this morning and confirmation that there is blood in his urine means the kidney will be removed Sunday morning at 9am...the WONDERFUL  :sarcasm; Doctor came in this afternoon  and let him know that there may be a little more pain taking out than putting in :banghead; WHY WAS THAT NEEDED TO BE SAID????? So I came home today so I can board the babies (2 doggies) and go back to the hospital in the morning to stay with him until this is done and over with....
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MaryJoe
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« Reply #23 on: May 25, 2012, 05:29:02 PM »
Eeyore, I'm so sorry your husband is in the hospital and facing surgery.  As for the doctor: :Kit n Stik;  I can't imagine why he would say that!  I'd like to give him the benefit of the doubt...but I'm just not feelin' it!  I will keep you both in my thoughts and prayers.

MJ
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Whether the glass is half empty or half full is not as important as being thankful there's a glass and grateful there's something in it.
lmunchkin
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"There Is No Place Like Home!"
« Reply #24 on: May 26, 2012, 07:03:10 PM »
So sorry about hubby being in hospital.  I guess its a good thing though, cause now they can remove it and get him back to health with D, and the resume training with NxStage.  I know you are overwhelmed and sick with worry, but hang with it, and things will get better!

Will be praying for you both.  God Bless & let us know if we can do anything?

lmunchkin :kickstart;
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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
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