I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: *kana* on March 25, 2015, 07:03:55 AM
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Hello, We have been flushing the system after prime to remove a chemical that I taste and that makes me start coughing after treatment begins. Does anyone else get a sensation in their throat like that that almost takes your breath away like if you were to inhale Vics rapor rub? We have been flushing for about a year now and all is better but not completely gone. I was having some severe blood pressure issues and a slight raspy voice so we consulted another Neprologist and he thought maybe I was allergic to the polyethersulfone in the cartridge Yesturday we didn't flush and about 5minutes into treatment I completely lost my voice. I didn't have a voice for the entire tx and for about 2hrs post and then it came back normal. My husband wont admit it but I think he liked it. My throat doesn't feel like it is closing and nothing swells just no voice.
I was in center a couple months back and I felt great! On NXSTAGE I don't feel so good and by the 3rd day in a row I am done. I do 3 on, one off, 2 on, one off and so forth. I keep telling them the more treatment I do the worse I feel like too much of something is being removed or I'm given too much of something thats not good. I'd rather feel like crap then go back in center so I don't really complain. They don't seem to take me serious anyhow and just blow off the fact that I don't feel right. Like I'm lying or something. Yes, I switched clinics and it is the same. I have talked with my clinic to see what is different in their cartridges, tubing, heprin etc then my NxStage. They tell me they use the same polyethersulfone cartridge and everything else that I do. I didn't feel or taste that chemical when I was in center and my BP's were so much higher 125/83 vs 80/38 and I never lost my voice.
What else could this be? BTW....we keep benedryl in the drawer near me.
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There is a NxStage cassette available the uses standard dialysis filters, specifically for people with a sensitivity to the NxStage product. You might want to see if your MD will let you give a non-NxStage filter a try. It's more of a pain to set up, and you'll go through 3 saline bags just doing the setup and prime, plus it's not as fully automated as the "press start and wait" priming on the conventional cartridge, but it may be worth a try.
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Thank you so much for the advice. We are going through 3 bags of saline now and if makes me feel better it is worth the extra time. By day 3 treatment I feel so bad I can't even get out of my chair. I always tell my husband prior to treatment that it feels like it is killing me slowly. I literally only eat on my non-treatment days because I can't eat or drink on my treatment days. I don't urinate and I NEVER pull off any fluid and I have to be given 500-1000 fluid every treatment. My neph laughs and tells me that is impossible but my flow sheets prove it. :boxing;
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I use a 30 ml syringe to ' tank' the 'air' out of the cartridge before I start prime (cartridge in, cylinder in holder, closing white clamp on arterial line) Usually after 5 times sucking (is about 150, constantly closing the blue clamp on the top of cylinder) than press the prime button for about 30 secs (till the sound level stops getting higher) than 'tank' again 5 times. In total you 'sort of' take all the chemicals out the cartridge which used to give me asthmatic attacks, and not having to swap saline (which is a bit of a pain as I do everything by myself)
I hope you get to feel better soon, love, Cas