1. < MAC & Bronchiectasis

Nebulizing Equipment

Posted by alleycatkate @alleycatkate, Apr 20, 2020

Hi all....Does anyone know if the Neb Kits are interchangeable with different Nebulizing Compressors? I have a Drive Compressor and would like to try the Pari Neb kit for my compressor but I am not sure if it would fit. Seems that it would be interchangeable since it is just a connecting tube from the compressor to the kit. I'd need to get my GP to write a script so I don't want to get it wrong. Thanks for any thoughts.

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Margie E | @margiebanks | May 4, 2020
In reply to @auntnanny "margiebanks.…. thank you and yes. I don't know what Arikayce is for. I'm not improving with..." + (show)
@auntnanny

margiebanks.…. thank you and yes. I don't know what Arikayce is for. I'm not improving with Tobramycin and am thinking I need to try something else. I deal with tremendous hard coughing -- lots of phlegm and pseudomonas. What is Arikayce for?

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@auntnanny after being on the big 3 for a year w no improvement, an inhaled medication Arikayce (Amikacin liposome inhalation suspension) was added to my regiman of meds. I was diagnosed w bronchiectas, MAC/MAI and Pseudomas. My doc said its good for knocking out Pseudonomas too. I have been MAC and Pseudonomas free for 5 months, but I never experienced the violent coughing you speak of. I have had absolutely no problems w the Arikayce aside from a low voice for a few days when I started.

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Margie E | @margiebanks | May 4, 2020
In reply to @woot "Huge question on time it takes: I use Pari Vios Pro. Neb 4ml of 7% saline..." + (show)
@woot

Huge question on time it takes: I use Pari Vios Pro. Neb 4ml of 7% saline twice a day. Each time takes 25 minutes. Gwen Huitt is my doctor at National Jewish. They expect it to take this long. What am I missing? How could the saline be delivered in 2 or 5 minutes?

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@woot i bought and used the Pari LC Sprint reusable handset. The site says 5-6 minutes. Its reusable, boilable (I do) dishwasher safe (I don't) and says its good for 6 months. From Just Nebulizers $15.95, includes tubing.
Always check with your doctor. Yours is one of the best.

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1 reply
Margie E | @margiebanks | May 4, 2020
In reply to @margiebanks "@woot i bought and used the Pari LC Sprint reusable handset. The site says 5-6 minutes...." + (show)
@margiebanks

@woot i bought and used the Pari LC Sprint reusable handset. The site says 5-6 minutes. Its reusable, boilable (I do) dishwasher safe (I don't) and says its good for 6 months. From Just Nebulizers $15.95, includes tubing.
Always check with your doctor. Yours is one of the best.

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@woot I was prescribed Arikayce (Amikacin liposome inhalation suspension) and the Pari eRapid Nebulizer system is the delivery method that came with the meds. One day I tried my saline in it and wow, 2 minutes! That's when I called the company and found out it was OKAY to do this and 2 minutes was the usual time for saline. They cautioned me to clean it real well as the saline is sticky. They (Nebology) work w your insurance but its listed at $160 for the handset and $879 for vibrating mesh technology compressor. Anyhoo, that's some info.

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auntnanny | @auntnanny | May 4, 2020

margiebanks……. thank you again for sharing with me. I'm planning to contact Mayo doctor when I finish this session of Toby to say "it's just not working for me".

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1 reply
auntnanny | @auntnanny | May 4, 2020
In reply to @sounder27 "auntnanny. Arikayce is a liposome antibiotic Amikacin that is specifically for MAC. Because it is delivered..." + (show)
@sounder27

auntnanny. Arikayce is a liposome antibiotic Amikacin that is specifically for MAC. Because it is delivered as a liposome, it is delivered directly to the receptors in the lungs and it bypasses the systemic type of reaction that would naturally occur if one was taking oral meds or even intravenous meds. That is why it was recommended for me because of heart rhythm condition that I have. This medication still has many side effects for which it needs to be carefully monitored, but thankfully heart rhythm is not one of them.

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sounder27 Thanks you much for the information you shared. Appreciate it

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Margie E | @margiebanks | May 5, 2020
In reply to @auntnanny "margiebanks……. thank you again for sharing with me. I'm planning to contact Mayo doctor when I..." + (show)
@auntnanny

margiebanks……. thank you again for sharing with me. I'm planning to contact Mayo doctor when I finish this session of Toby to say "it's just not working for me".

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@auntnanny You're welcome, we always need to mindful that we all respond differently to medicines. I wish you the best of health.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 5, 2020
In reply to @ginak "I finally received my Rx for the 7%. Based on the way my Dr wrote the..." + (show)
@ginak

I finally received my Rx for the 7%. Based on the way my Dr wrote the Rx, (3x per day, I only neb once per day), I received 270 vials !! LOL. I’m happy about that, since then I have to reorder less frequently. I guess that’s why it cost $94. Going to try it later today. I’m a little concerned that it might cause hemoptysis. Anyone have any thoughts or experiences with this happening?

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@ginak Hi there! I am so glad that you got your saline. Like @suinmn said; use it on a level you can tolerate. I built up a tolerance to it so now it doesn't give me that beneficial cough. But I feel like the salty environment is still good for my lungs.

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