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Author Topic: Low Platelets, Inactive on list  (Read 2440 times)
cbatsea
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« on: June 29, 2018, 12:45:53 PM »

Has anyone had this issue?  Hubby has been put "inactive" because of low platelets.  He's had a bone marrow biopsy, which was normal, and a plethora of blood work...no cause can be found.  Now, they want to do a liver work-up, even tho he has NO liver "symptoms".  We are SO frustrated.  He's been on the list for the dreaded O kidney for almost 4 years.....I fear I will go insane, and he will give up....
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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: June 29, 2018, 01:58:03 PM »

Hi I'd read before about the low platelets. It could have something to do with the sterilization method.
I'm on Nxstage 6 yrs now, but have always 'tanked' all the gasses out of the cartridge as it gave me asthma attacks. Maybe mention this to the neph, before all this extra appointment stuff?


Nb I 'tank' the cartridge by: load cartridge, connect to saline.
                                         With a 30ml syringe connected to cylinder (blue clamp) withdraw 5 x 30 ml air out
                                          (Closing clamp in between of course)
                                         Press fluid toggle, when the sound stops rising count till 14 (I know this sounds mad)
                                         Withraw 5x 30 mls again.
                                         And finish priming


Here's one article, just google there's more


  https://www.ncbi.nlm.nih.gov/pubmed/26521886


Lots of luck and strength, 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
Simon Dog
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« Reply #2 on: June 29, 2018, 04:05:17 PM »

The term is thrombocytopenia.    I had them for a while and had to have platelet production stimulated prior to my hip job.   The drug was Nplate - an exotic ESA, about $1500 for a .2cc injection - but it worked.

This could work for a planned xplant, but not for one where you need to get surged now instead of in a few days.

There have been some cases of thrombocytopenia being induced by dialyzers that were sterilized with electron beam radiation rather than ethylene oxide gas.  I believe that NxStage uses the later.  There is also a condition known as "Heparin-induced thrombocytopenia".   
« Last Edit: June 29, 2018, 04:07:48 PM by Simon Dog » Logged
cbatsea
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« Reply #3 on: June 29, 2018, 05:09:43 PM »

He's been tested for the Heparin thing...it's negative.  I've read that simply having the blood running through the tubes and machine can cause this....don't know anything about how Nexstage sterilizes the equipment.
At my wit's end!  He gets regular shots of Mercera and iron....still low.
« Last Edit: June 29, 2018, 05:11:40 PM by cbatsea » Logged
MooseMom
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« Reply #4 on: July 01, 2018, 11:00:53 AM »

Gosh, I had never heard of this.  I hope you get it all sorted out and will let us know how this problem was solved.
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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."
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