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Author Topic: My nurse started dialysis...  (Read 2928 times)
tyefly
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This will be me...... Next spring.... I earned it.

« on: February 29, 2012, 01:20:34 PM »

Well I ran into my nurse for my GP doctor and she told me that she has started dialysis......  she has had kidney failure for over 20 years with a decline very slow..... We had talked from the first time I started my journey with kidney failure.....  I saw it in her eyes.....  scared..... really bothered me..... she ask me how to cope with the cramps and the passing out.... the feeling washed out the next day......  She knows I did Nxstage and we talked about that ....but she can not do Nxstage because she does not have a partner.....  she works full time.....as a nurse...  I brought tears to my eyes.....  I could see it in her face...... she always appeared to be very strong natured.....  I am thinking that I will voluntee to be her care partner....  It would be a big committment but my god....life at the center is not good......  really not good in my opinion.....  You feel so much better and have such a better quaility of life doing home hemo.......  I feel like I need to help......  I have my own life but it brings tears to my eyes when I see the scared look and the feeling of helplessness in some of the dialysis people ....you guys know what I am talking about.......  anyway......it was a real eye opener...... brought me back to my first days....... 
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
MooseMom
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« Reply #1 on: February 29, 2012, 01:50:42 PM »

Oh tyefly, I don't remember ever hearing of a more generous, openhearted and compassionate offer. 

I'm really stunned.

Yes, you have your own life, but being able to help someone who, at one time was just like you, adds so much meaning to it.  I've often wondered what purpose is served by suffering with ESRD and dialysis, and I think you've just answered that question.  To be able to help your friend get the same good treatment that you worked so hard to obtain for yourself...oh, what a wonderful opportunity to change the course of someone's life.

They say that living donors rock.  While that is true, to be a care partner for someone you have no real ties to so that they can have access to optimal dialysis in the comfort of their own home...well, that's the definition of heroic.

I can't wait to hear the next chapter of this story.  God bless you, tyefly.  God bless you. :bow;
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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."
Rerun
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« Reply #2 on: February 29, 2012, 01:56:14 PM »

Make sure and tell her about IHD.  It will maker feel so... not alone.  If you are in a place to help that is great.  Don't string yourself out too much. 

               :flower;
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Traveller1947
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« Reply #3 on: February 29, 2012, 01:59:26 PM »

tyefly, you're my hero...
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willowtreewren
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« Reply #4 on: February 29, 2012, 02:06:21 PM »

This goes waaaay beyond generous.

And perhaps once she get comfortable, she will be able to handle it on her own...

 :cuddle;

It is really, really wonderful of you. And I agree with Rerun....make sure she signs up here and reads through the threads.

 :grouphug;

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. :)
boswife
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us and fam easter 2013

« Reply #5 on: February 29, 2012, 02:14:12 PM »

Wow tye,,, Such an amazingly Touching story and what an increadable thing to even think of doing......  Life is really something isnt it.....  Just today, a friend of Bos (hubby) said to me....... "Man, you could get a job with your skills"  and i answered  NO!! It's not something i would choose as a job No no no no.... but i love the man.... ya know.. And then i thought for a second , "i have a feeling wouldnt have the heart to not offer if i found another who needed help w/it though" Once you've 'been there' and want out so bad, you certainly know what a gift it would be but...  Do think long and hard about it. Though a huge commitment,  it could be the biggest gift to possibly the both of you , and a real healing.  Bless your heart!!  And keep informed k ;)
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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
MooseMom
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« Reply #6 on: February 29, 2012, 02:19:04 PM »

I just wanted to come back and say how proud I am to be a part of a community of so many truly wonderful people who have taken the horror of ESRD and have turned it into an opportunity to help another human being who is facing the same sad and frightening path.

Tyefly, I will never, EVER forget your willingness to even entertain the idea of helping someone in this way.  I am just so overwhelmed that you would do this for someone you don't even really know that well.  And since you've had so much experience doing home D alone, this will give her so much confidence that she will be able to do the same for herself. 

It is so wonderful to hear of someone with so much compassion, so much kindness.  I really feel overwhelmed by this...I don't know why.  I'm getting all teary.  We hear so many stories here on IHD about family members who don't care or friends who ignore us, so to hear a very different kind of story is just so wonderful.
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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."
MooseMom
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« Reply #7 on: February 29, 2012, 02:25:18 PM »

And then i thought for a second , "i have a feeling wouldnt have the heart to not offer if i found another who needed help w/it though" Once you've 'been there' and want out so bad, you certainly know what a gift it would be but...  Do think long and hard about it. Though a huge commitment,  it could be the biggest gift to possibly the both of you , and a real healing.  Bless your heart!!  And keep informed k ;)

Well you see, that's the thing.  If bo, through some miracle, didn't need D anymore and you had "your life back", if you came across an acquaintance who was starting dialysis and didn't have anyone who would train with her so that she could have access to the better D you get with NxStage, could you really live with yourself knowing that you could help but chose not to?  No one is saying that you'd have a OBLIGATION, but I know how kindhearted you are...could you really look at yourself in the mirror, knowing that you consciously chose not to help when you could have?  Sometimes God puts stark choices right smack in front of you...

You could show her the arm you made, at the very least! 
« Last Edit: February 29, 2012, 02:28:40 PM by MooseMom » Logged

"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 #8 on: February 29, 2012, 03:37:28 PM »

thats funny mm about showing them the 'arm' at least... :rofl;  And the other part about helping out.. Yea,Thats what i was saying.. I cant see that i would have the heart not    to get right back into this NxStage bussiness with someone else in need..lol   It would be an increadable gift to someone and to not share that, well it's  just not my style.  But, on the other hand,  It is huge though really, and would have to be something that hubby may have a bit of trouble with.. He would prefer i didnt have to do for him even, and to then be tied once again.... well, It's something that like i said, would have to be well thought out. See my wishie washie self commen out...  :shy;               
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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
MooseMom
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« Reply #9 on: February 29, 2012, 04:06:36 PM »

Boswife, you've probably seen some of the posts lately about doing NxStage at home by yourself.  Some people think you're nuts to even THINK about doing home D alone while others would have it no other way.  But even for those who have every intention of dialyzing alone, they are still required by their clinics to have someone train with them.  I don't think that it is fair to doom a dialysis patient to merely adequate dialysis in center simply because they have no one who will train with them, but I'm sure NxStage and D clinics want to cover their butts.   ::) So, if YOU (and tyefly) would be willing to just train with a new D patient, sure, that's a commitment of time, but if the idea is for you to just fulfill the "you need a partner to train with you for NxStage" requirement, that's doable.  But you are right...it's an offer that needs to be well thought out.

I don't think anyone would expect you to be a care partner for someone who needs cannulating and other kinds of care while on dialysis.  But training with someone so that they could have access to home dialysis...well, you'd be PERFECT for such a kind task! 

It would just be so cool to be able to help someone out for a change instead of always being the one that needs care. 
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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 #10 on: February 29, 2012, 04:34:34 PM »

I see your point there Moosey.  If I didnt work, I would certainly volunteer to be a "partner" to have someone come home with NxStage.  Once they did it themselves, then I would leave them to their expertise.  Tyfly, I think that is AWESOME!  You know exactly what this nurse is going through and definately know how In-Center is a nightmare, NxStage would be an awesome gift.
 We hired a new girl at work, and her grandmother just started training for PD.  I gave her my cell number to call if they needed me.  Yesterday, the aunt called and asked me a few questions in which I answered.  She told me that I was a huge asset to them right now because they are just starting out.  I really felt pretty good about helping!!!

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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