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Author Topic: after reading prior posts..  (Read 5575 times)
The Noob
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« on: February 24, 2012, 05:03:29 AM »

i was sitting here this morning reading through mine and others prior posts..

it has been almost 4 months since we came home with Nxstage.
i can say today, that as far as the HH goes, its going very well. DH can and does at times, do all his own treatment start to finish. i will set up the machine beforehand a good bit of the time, but he can do it all if needed.
another trick i read that he does is when he goes to pull the needles, use the blue scissors clamp to the end of the line, then pull it off with his free hand, needle sits on chux pad till he clots.

the day before christmas, i recieved a call that my dear sweet grandma had passed away. i was devastated. she was the only mother i every really knew, and had been in ill health for some time. my brother had lived with her many years and grandpa had been done since 1993. i had tried in vain to get to see her this last 2+ years, but due to all the medical crisis, was unable to.
i left the day after christmas to drive the 900 miles to attend the funeral. it took 27 hours to get here with a short time to sleep at rest stop.
i don't know if i will ever be able to forgive not being allowed to take one week to see her before she passed.
with all this family not living far from us, someone could have helped out for that time. between them and my son, it could have been done. they all knew the situation, but could not be bothered.

i was there for the funeral for 4 days. everyone was drinking 24/7 and trying to kill eachother. i just sat and watched them and remembered why i had moved.

when i left to drive down, i didn't care what DH did to manage his needs. all i could think was i had to go.
he used his catheter, did his own care and labs and made phone calls to fedex and so on. all on his own.
thank God he still had his permacath.
son handled the animals and wood stove and all else.

i left the 4th day to get home, exhausted and heart broken. i brought a few things from grandma back with me. my brother is still there, is on dialysis, with brittle diabetes and liver failure. i will go back to see him this year. i will not take no for an answer.

sometimes i read posts on here i've made and i think i sound rude or pushy or aggressive and i assure you, most of the time i am not. after surviving this medical trauma for all of us the last couple years, i have gotten to the point of being no nonsense about it. if i hadn't been, my DH would have been yet another statistic.

the day i got back, NYE, it was 2 am. the downstairs where dh is was trashed. my sons rooms were spotless.
i got a few hours sleep and spent the rest of the day cleaning..after the 33 hour drive to get home wiht car problems on new years eve..

the next day i had to go get my pregnant daughter who had left her situation and was with my other daughter, who was freaking out and retaliating at my pregnant daughter in a violent manner. it took all day to calm hysterical pregnant daughter. the next day i took her 1.5 hrs to apt to clean it out (one of 4 trips). the day after that we were in town all day seeing about some medical and other benefits she might get.

she did get wic (half a paper grocery bag of items for a month), FS which did help her, and medical. though she does have a midwife for a home birth.
in order to get cash help of 140$, she was required to go to the job center and train daily and put in 35 hours of filling out job apps. she was out looking for work at almost 7 months pregnant.
she did finally get a job at a factory. 8 hr shifts on her feet. they were the only ones who would hire her. i told her we could probably make do without her working right now but she insisted and wanted a paycheck.

we are in the tail end of winter and had a storm last night, 3-4 inches wet snow and maybe 3-6 more today?

i am exhausted beyond belief. my son is now staying at the farm in the kitchen, to give his sister the upstairs here to be ready for the baby. he is heating the kitchen with the electric stove and sleeping on an air mattress.
he did this on his own cognition. he feeds the horses and other animals there too, which he and DH moved back last week by putting hay on the back of the truck, son sitting in back holding leads for 3 horses and walking them the mile over.

we can't afford to heat 2 places, so DH and i still here at other place as daughter is here and it must be heated.
not enough room there for all of us.

i could tell horror stories from the last 2 months..how the holy heck i am still sober i don't know. menopause, diabetes, bone spurs and now SAD's..and no insurance to see a doc, some how i keep going.

the HH is such a small part of the stress these days. it is time consuming and there is a huge bonfire every few days for the trash, but its do-able.

guess i am just posting this because i sort of wanted you all to understand why i sometimes sound irritable.
i don't mean to. i am just overloaded.
the last straw to all this is a few weeks ago i asked the nurse about our certificates for the HH training and lab draws we were to get. she told me it would be in DH name, and i got zero.
for some reason that just hurt and i had a small controlled meltdown at the next appt.
she agreed with me and says will make us both certs, and that the one she was talking about is the one needed to file billing.
i wanted it partly because i was looking for a PT job myself to help out, and wanted to put it on app.
plus dang it, i did the training and work too.

there are just days i feel i can't take anymore. but..here i am..
thanks for listening  :grouphug; :grouphug; :grouphug;
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boswife
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us and fam easter 2013

« Reply #1 on: February 24, 2012, 05:45:15 AM »

 :grouphug; noob   :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
monrein
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Might as well smile

« Reply #2 on: February 24, 2012, 06:17:16 AM »

I think you're a hero...and sometimes heroes have to be irritable to get the job done.    :grouphug;
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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
willowtreewren
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My two beautifull granddaughters

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« Reply #3 on: February 24, 2012, 06:51:08 AM »

 :grouphug;

You are not only a hero, you are a SUPER HERO!

What you have endured is more than most humans could do.  :cuddle;

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. :)
MooseMom
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« Reply #4 on: February 24, 2012, 12:16:05 PM »

1.  It was obvious to all of us that you were overloaded. 

2.  Under the circumstances, I don't think anyone would label you as "irritable".

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

« Reply #5 on: February 24, 2012, 03:38:47 PM »

Don't apologize!  We know how hard it has been for you and we all care about you. Who wouldn't feel overwhelmed with what you have on you!
Kudo's to DH for doing things on his own (even if he left a mess!).

Don't even think about it!!!!!

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
The Noob
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« Reply #6 on: February 24, 2012, 05:25:03 PM »

thank you all of you.. :grouphug; :grouphug; :grouphug;
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MooseMom
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« Reply #7 on: February 24, 2012, 10:38:10 PM »

Geez, I've had a cold for a week and insomnia for 3 nights, and I feel like I'm going out of my mind...I have no excuse for being irritable while YOU have every excuse imaginable.  I don't know how you do it. :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."
okarol
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« Reply #8 on: February 27, 2012, 12:50:52 AM »

Thanks for sharing all that. I think it helps to unload and it's totally understandable if you're not in a cheery mood. You've got a lot to deal with. Sending you hugs.  :cuddle; :cuddle; :cuddle; :cuddle; :cuddle;
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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
Jean
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« Reply #9 on: February 28, 2012, 12:34:32 AM »

God Bless your little heart, Noob. You hang in there baby, it is bound to get better for you.   :grouphug;   :grouphug;
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One day at a time, thats all I can do.
talker
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« Reply #10 on: April 27, 2014, 12:18:40 PM »

Golly The Noob was on the edge of the cliff, and 'Last Active: March 29, 2013, 09:44:52 AM'.

Wonder how things are going for her!

talker
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Be Well

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever give up hope, expect a miracle, pray as if you were going to die the next moment in time, but live life as if you were going to live forever."

A wise man once said, "Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."
MooseMom
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« Reply #11 on: April 27, 2014, 03:01:36 PM »

Talker, there are just too many IHD members who suddenly disappear, and The Noob is one of them, which is such a shame.  I hope she is well.
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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."
talker
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Talkers oil painting

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« Reply #12 on: April 27, 2014, 03:28:20 PM »

Talker, there are just too many IHD members who suddenly disappear, and The Noob is one of them, which is such a shame.  I hope she is well.

Thank you for noticing and responding.
From my perspective, am sure that any prayers and healing energies sent, will in some fashion, touch the souls involved here in a beneficial manner.

talker
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Be Well

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever give up hope, expect a miracle, pray as if you were going to die the next moment in time, but live life as if you were going to live forever."

A wise man once said, "Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."
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