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BlueRoses100
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« on: January 12, 2015, 12:37:11 PM »

Hello from Bristol in the UK!
Just a quick intro - I've been lurking on here for a while and thought it was time to register.  My mum has been on hemo dialysis for ESRD due to diabetes for 7 years and I am one of her carers. She has a plethora of other problems including blindness and severely reduced mobility. She eats very little and feels nauseous pretty much all the time. She said to me today 'i don't want to live like this anymore' and, although I understand that her quality of life is clearly awful, I'm heartbroken to think we are already at the stage when this must be discussed seriously.  :'(
« Last Edit: January 12, 2015, 12:51:59 PM by BlueRoses100 » Logged
MooseMom
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« Reply #1 on: January 12, 2015, 01:03:03 PM »
I'm so sorry for both you and your mum.  I can understand why she would not want to continue to live her life in this way.  I am pretty sure that none of us would relish that sort of life.
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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."
BlueRoses100
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« Reply #2 on: January 12, 2015, 01:18:09 PM »
Thank you MooseMom. I knew this day would come and I don't blame her for wanting to stop either. I have no idea what the next steps would be - mtg with her doctor I suppose? I'm really struggling as I have two sisters much younger than myself that I need to stay strong for, and a husband and 3 year old son too. I realise that there is not much anyone can say to help but just writing it out helps. x
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Rerun
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Going through life tied to a chair!
« Reply #3 on: January 13, 2015, 03:42:00 AM »
I wonder if a little "more" time on the machine would make her feel better.  I know it sounds horrifying but really... more is better.  It cleans the blood better and pretty soon you have some energy that you thought was lost.  Just a thought.

Rerun, Admin.   :welcomesign;
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iolaire
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« Reply #4 on: January 13, 2015, 05:33:13 AM »
Welcome BlueRoses100, one of the most important services of a site like this is to allow you someone to talk to and vent/share ideas with during your difficult journey.
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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.
Darthvadar
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« Reply #5 on: January 26, 2015, 12:30:53 PM »
 :welcomesign; BlueRoses...

I too cared for my mum, so I 'get it'... Visit, and post often....

Feel free to take advantage of our amassed expertise....

God bless...

Darth... Moderator...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
cassandra
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When all else fails run in circles, shout loudly
« Reply #6 on: January 29, 2015, 01:13:13 PM »
Welcome to the site BleuRoses100, maybe the talking about it, and discussing it, will just give your mum some 'relief' too.

Lots of love, and strength to all of you, 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
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