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Author Topic: Bacterial contamination in water supply  (Read 1484 times)
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Gender: Female
Posts: 2160

10 years on and off dialysis

« on: October 05, 2017, 06:36:21 AM »

We have a home haemo set up:
Braun dialysis machine, Braun water softener, Brand new Diaverum RO machine; and it mailed the Water Quality test and we haven't been able to use machine for 6 weeks.
Had incoming water tested by Essex and Suffolk water, Had RO cleaned. had RO replaced and yet again failed. This is the fourth test.
I am slowly going crazy (after 2 years at home, doing 4 x a week basically every other day)
Back in centre, 6pm-11pm shift. My blood pressure is sky high, Having severe migraines, Hypersensitivity to Light and Noise and crap 3 x a week of 3.5 hours so poor dialysis.

I had to come off early last time because I was so poorly, headache and a neighbour who spends her dialysis constantly on phone at full volume.
I was crying, I had to get off and go out because I just wanted to scream and never stop. I actually feel like giving up dialysis completely.
I no longer have any control over when or how or where I dialyse and no flexibility over sessions.

Nobody seems to know locally what to do next. Has anyone anywhere had a problem with water quality in their system?
The maximum permitted bacteria level is 50 ours is 1700. (This is measured in the ro water not the dialysis machine.)

I am not even sure if I can face going back in tonight...

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
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« Reply #1 on: October 05, 2017, 07:17:08 AM »

We have.  We live in the country with a well and over the summer our machine wouldn't work.  The water intake kept shutting itself off as he was hooked up and doing his home hemo.  In a 3 hour session it would turn itself off 20-25 times.  I was always able to restart it.  Turns out the filter wasn't stopping enough sand in the water.  We had to have our filtration system torn apart and rebuilt.  It works great now but that's $1,454.83 later :(

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