I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: NCspinner on August 31, 2022, 05:15:58 PM
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At my husband's most recent Home Hemo clinic at our local DaVita , the social worker's handout ("Quality of Life on Dialysis") is a bouquet of platitudes whose vapid quality was partly explained when I noticed it was taken from a 2010 DaVita publication.
When we called our home hemo nurse yesterday for help with an unusual blood detector alarm just at the end of treatment, she was instructing us on how to do the rinseback the manual recommended when she suddenly said "No!! The rules have changed. You can't rinse back the blood." (There was no evidence of clotting or other issues.) If we had simply performed the manual RB as indicated in the Cycler manual ...??
When I came to this site tonight I was struck, not for the first time, by how few current posts there are, and how many date back 8 years or so. I know there are lots of new home hemo patients in our area but they aren't logging on!
We have now been doing home hemo for almost 6 years. There is no community. The home hemo nurse is stretched thin. I am dismayed by the fluctuation in supplies quality ( most recently, alcohol pads suddenly shrunk to ridiculously small; before that, saline bags convenient to spike replaced with marginally less expensive bags very awkward to spike...even the tech support at NxStage was aware of it) obviously driven by the profit motive.
Would love to hear from anyone who has been frustrated by the same gaps. We need more than self-serving promotions from providers and their photos of determinedly grinning "patients" and "families."
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At my husband's most recent Home Hemo clinic at our local DaVita , the social worker's handout ("Quality of Life on Dialysis") is a bouquet of platitudes whose vapid quality was partly explained when I noticed it was taken from a 2010 DaVita publication.
When we called our home hemo nurse yesterday for help with an unusual blood detector alarm just at the end of treatment, she was instructing us on how to do the rinseback the manual recommended when she suddenly said "No!! The rules have changed. You can't rinse back the blood." (There was no evidence of clotting or other issues.) If we had simply performed the manual RB as indicated in the Cycler manual ...??
When I came to this site tonight I was struck, not for the first time, by how few current posts there are, and how many date back 8 years or so. I know there are lots of new home hemo patients in our area but they aren't logging on!
We have now been doing home hemo for almost 6 years. There is no community. The home hemo nurse is stretched thin. I am dismayed by the fluctuation in supplies quality ( most recently, alcohol pads suddenly shrunk to ridiculously small; before that, saline bags convenient to spike replaced with marginally less expensive bags very awkward to spike...even the tech support at NxStage was aware of it) obviously driven by the profit motive.
Would love to hear from anyone who has been frustrated by the same gaps. We need more than self-serving promotions from providers and their photos of determinedly grinning "patients" and "families."
I don't know if you use facebook, but there's a great group of people on home dialysis https://www.facebook.com/groups/122326728212 Home Dialysis Central Discussion Group.
There's also our companion group I Hate Dialysis https://www.facebook.com/groups/IHateDialysis
Hope this helps.