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    Nocturia

    Yes, the UTI risk is an issue. He had one for the first couple months and is considered "chronic" by the urologist (MRSA). Requires a bit more attention and monitoring on our part. We asked about low dose long-term antibiotics, but were told tests will always show the bacteria so they hold off...
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    Nocturia

    We had similar issues and he got a suprapubic put in same time as his PEG. Probably one of the best things he's had done. Saved energy, discomfort, and lots of time. He did start to have "leaks" again a couple months back, and was put on Oxybutynin as they believed it was spasms. He has since...
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    Time to say Hello

    Yep, started his second round yesterday using the new port. Soooo much nicer.
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    Time to say Hello

    Lesson learned for sure. The treatment this time seemed really out of line with how he was handled 6 months earlier for his PEG and SPCath. We purposely traveled to make sure he has procedures done with someone who deals regularly with PALs, and the Dr did his previous procedures and knew him...
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    Time to say Hello

    He's back to his normal self thankfully. I'm pretty sure he doesn't remember any of it honestly. I think the surgeon had him laying flat, and put him on oxygen. They didn't put him on bipap until he was in respiratory failure and Co2 through the roof. He eventually woke up after the levels got...
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    Time to say Hello

    Long time lurker and figured it was time to actually become more active with this great community and say thanks for all the amazing tips, advice, and information everyone shares here. My partner and PALS has what seems to be a quick progression. Bulbar onset, DX Jan '17. PEG and SPCath by end...
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    Anyone started on Radivica yet? Use this thread to discuss access/ insurance

    We had a run around with it and Aetna. They auth'd it for December until end of year, then denied it due to low scores when renewing it for 2018 (he hadn't started due to finding an infusion location). Biologictx managed to get the prior auth renewal without too much fighting just a couple...
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