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Author Topic: Tomorrow is the day  (Read 11248 times)
justme15
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« Reply #25 on: October 07, 2012, 04:11:53 PM »

sigh... I'd like to know how this went from me venting about my impending surgery and husband, to me beating up on Nick because he has noone to care for him!!!???  geesh.  I'm sorry, but I had no idea nick had no caregiver.  However, this thread was not about that.  I wrote it to get some encouragement about my surgery and how my life is now changed.
and.. just a few posts down, I acknowledge that my husband has done great! I couldn't ask for more.

geez.
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lmunchkin
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"There Is No Place Like Home!"

« Reply #26 on: October 07, 2012, 04:25:16 PM »

I know that!  Believe me! I know how touch it is with care partners, it must be Hellish to go through this alone. You know, my John asks me to leave too, but I remain to offer more punishment to him!  LoL!! I love my man and all who know me, knows that to be fact! Yes, I would trade places with him but things happen for a reason!

Seriously, though, no controversy here, and I do find you to be very supportive.  And my invitation still stands!

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
justme15
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« Reply #27 on: October 07, 2012, 04:28:00 PM »

Does anyone who hasn't been there have a clue? No they don't.

and no, I didn't find this supportive. sorry.
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lmunchkin
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"There Is No Place Like Home!"

« Reply #28 on: October 07, 2012, 04:37:09 PM »

My apologies Justme. I was responding to this by Nick!
Does anyone who hasn't been there have a clue? No they don't.
and I was responding to his comment by addressing it to you!  My bad.  And he does try to be supportive, but like me, he messes up sometimes. But Im not talking for him, so I messed up in addressing it to you!  Sorry.

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
MooseMom
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« Reply #29 on: October 07, 2012, 04:39:24 PM »

I have had one major operation and one minor, common procedure that both required pumping my abdomen full of gas, and the pain I felt from the gas FAR outweighed any other discomfort I experienced.  Isn't that just stupid?  I mean, really.  So justme15, I am sympathetic!  I hope you are feeling better.

As for "not having a clue", I have no clue at all about what it feels like to, say, go through chemotherapy, but if my husband were to be diagnosed with cancer and had to have chemo, I wouldn't NEED a clue in order to help in some way and to be supportive.  No one really understands what it is like to be on dialysis unless you've BEEN on dialysis.  My mother was on dialysis for 5 years, and on top of that, I think most people on IHD who have known me for some years KNOW how much time I have spent educating myself on all things dialysis since that's where I was headed.  But the truth is that since I haven't yet BEEN on dialysis, there is a limit to my true understanding.  Members like lmunchkin and boswife don't really KNOW what it is like to be on dialysis, but they don't NEED to KNOW.  There is no limit to their support for their husbands.

Nick, there are numerous IHDers who are going through this stuff alone, and I know it is so very hard.  But I suspect it is better than having a partner who works against you or who undermines you in some way, you know?  I hope you have found support here.
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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."
chinksnicky
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« Reply #30 on: October 07, 2012, 04:52:15 PM »

I really was only agreeing with you,justme,I'm glad your husband is starting to get it and is doing better,Best of luck,I really am sorry If you took my agreeing with you wrong,I didn't mean to be improper       Nick
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justme15
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« Reply #31 on: October 07, 2012, 04:54:37 PM »

MooseMom- each day is better and better.  My job is relatively physical, so they don't want me to come back until I am 100%.  They don't have any light duty for me.   So, I guess I'll take this time off to get my house ready for PD and run some errands I never had time to do when I was working.
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justme15
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« Reply #32 on: October 07, 2012, 04:56:54 PM »

I really was only agreeing with you,justme,I'm glad your husband is starting to get it and is doing better,Best of luck,I really am sorry If you took my agreeing with you wrong,I didn't mean to be improper       Nick

No problem Nick! You and I are really in the same boat ( or at least similar boats).  we are both trying to deal with this crappy disease.  so no hard feelings.
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MooseMom
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« Reply #33 on: October 07, 2012, 05:02:22 PM »

MooseMom- each day is better and better.  My job is relatively physical, so they don't want me to come back until I am 100%.  They don't have any light duty for me.   So, I guess I'll take this time off to get my house ready for PD and run some errands I never had time to do when I was working.

I'm glad to hear that today was better than yesterday and that tomorrow will be better than today.  I have no clue what it is like to transition from a transplant back to dialysis, but I can imagine without too much difficulty that it must not be an easy thing to do.  I admire your tenacity.   :cuddle; 
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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 #34 on: October 07, 2012, 07:50:27 PM »

what a wonderful bunch we have here.. and MM  :2thumbsup; , your right on......as always  :cuddle;
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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
cassandra
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When all else fails run in circles, shout loudly

« Reply #35 on: October 08, 2012, 03:13:00 AM »

Yes we are, you solved a potential argument in less than 4 hours.

aw         :flower;

love to all, 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
2020 start Gambro AK96

       still on waitinglist, still ok I think
justme15
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« Reply #36 on: October 09, 2012, 01:52:53 PM »

I am pretty excited right now!! my job called and said that they do have light duty work for me! So that means no sitting at home bored to death, and not having to go on short term disability!  I start on Friday-woo hoo!!
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cassandra
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When all else fails run in circles, shout loudly

« Reply #37 on: October 09, 2012, 02:30:03 PM »

Congrats darling.

      :flower;


love 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
2020 start Gambro AK96

       still on waitinglist, still ok I think
okarol
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Photo is Jenna - after Disneyland - 1988

WWW
« Reply #38 on: October 09, 2012, 02:58:25 PM »

 :2thumbsup; :2thumbsup; :2thumbsup;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
big777bill
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« Reply #39 on: October 09, 2012, 03:36:43 PM »

I'm glad for you. Sitting at home can be so boring,
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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
MooseMom
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« Reply #40 on: October 09, 2012, 04:02:06 PM »

I am pretty excited right now!! my job called and said that they do have light duty work for me! So that means no sitting at home bored to death, and not having to go on short term disability!  I start on Friday-woo hoo!!

This is the best news I've heard all day!  Terrific!
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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 #41 on: October 09, 2012, 04:48:59 PM »

 :2thumbsup;   See, it all works out  :2thumbsup;  soooooooooo happy for you  :yahoo;
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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
justme15
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« Reply #42 on: October 10, 2012, 06:23:09 PM »

so I'm geting the catheter flushed tomorrow. what does this mean? they're actually gonna  put fluid in my abdomen and drain it back out? i'm a bit nervous about it
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Joe
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« Reply #43 on: October 10, 2012, 06:52:42 PM »

That is exactly what they do JM15. They will take a 2L bag and run it in, dwell for maybe 20 minutes and then drain you out. It serves two purposes; first it keeps the cath open and running and second it starts your training on doing PD. Nothing to really be nervous about, it's all pretty benign. Good luck!
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
justme15
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« Reply #44 on: October 11, 2012, 09:25:52 AM »

well the flush was ok. the drain hurt, but wasn't unbearable.  training starts next week!
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Joe
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« Reply #45 on: October 11, 2012, 10:49:08 AM »

That's great news!  :yahoo;  the worst drain pain I've had was during my first couple of flushes. If that happens, just pinch off the line and shake your booty to move the Cath around. It will ease off. Good luck!
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
justme15
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« Reply #46 on: October 12, 2012, 01:40:19 PM »

Today was bittersweet.  I saw my transplant doctor for the last time.  She said she no longer needs to see me since I will be starting dialysis.:-(  I guess my transplant is officially a thing of the past.

The good news is that i get to progressively come off of my cellcept, and decrease the dosage of my prograf and prednisone.  She also says that I shouldn't have that much longer to wait on the list (1-2 years), my antibodies are low, and my hgb was 9.5!!!! My hgb hasn't been that high in over a year, and definitely not without the help of a blood transfusion.  I attribute this boost to my nephrologist decreasing my cellcept back in Aug. 

So, things aren't so bad.  I can't wait to actually get started with PD so I can get my routine going.
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MooseMom
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« Reply #47 on: October 12, 2012, 04:30:52 PM »

Like others have asked, are you going to get relisted?  I am assuming you are already back on the list, judging by your post above.

I hope you quickly get into a good routine so that all of this becomes just, well, routine.
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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."
jeannea
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« Reply #48 on: October 13, 2012, 11:37:33 AM »

You're going to be ok. The transplant center will keep in touch with you about getting relisted. You'll get to send them blood twice a month for PRA. When I was on dialysis between transplants, I only took prednisone for anti-rejection. I dropped the prograf and cellcept. Congrats on the low antibodies! Get back on the list and don't give up hope.
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justme15
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« Reply #49 on: October 13, 2012, 11:48:30 AM »

thanks! I am back on the list.   I have two years under my belt, and my transplant doc said that was a good thing!
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