Anyone using the new TOBI podhaler?

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Registered: 10-12-2010
Anyone using the new TOBI podhaler?
5
Mon, 10-28-2013 - 11:39am

Hi all ~  Just wanted to share something that Paige is doing right now.  As background, she has been culturing pseudomonas off-and-on for the past 2 years.  We've had to use inhaled Tobramycin 2 or 3 times and we *hate* it.  You have to do it twice a day for 28 days, and it has to be done at the end of all her other breathing treatments, extending treatment time significantly (we need a new compressor, but lately it's been taking her 45 for saline and pulmozyme and the TOBI added another 45 to that!).  Plus the nebulizer cups have to be kept completely separate from the other cups (and of course it looks just like the cups for the saline) AND the TOBI box takes up a huge amount of refrigerator space.

So when Paige's doctor said she cultured it AGAIN, she offered us a new method called the podhaler.  Paige has been doing it for a week and it is so much better!  Now we have medicine that doesn't have to be refrigerated AND that comes with its own special cup.  Each treatment consists of placing a capsule into the cup and then breaking it open.  Paige inhales the contents through her mouth (about 4 breaths) and then removes the used capsule and puts in a new one.  (The dose is 4 capsules.)  She still has to do it twice a day for 28 days but it goes so much faster and it is so much more convenient.

I don't know if there's an age limit to recommending this method (Paige is 12 now), but if your pulmonologist brings up TOBI, make sure you ask about the podhaler!

 

 

 

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Community Leader
Registered: 09-09-2000
Mon, 10-28-2013 - 9:37pm
Hi Monica, I've heard of the podhaler, but haven't used it. Sarah hasn't cultured pseudomonas for several years and it wasn't around then. I know what you're talking about with the traditional TOBI, it's a pain. I'm so glad it is working so well for Paige. If Sarah ever needs TOBI again, I know what to ask for. We've been bumped up to 2 vests and added saline. We did great with morning vest and Pulmozyme, but adding night vest and saline is much harder. Sometimes we have to squeeze it in right after school because we have somewhere to go and won't be home until bedtime and Sarah does not do well if she has a late bedtime. MA
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Avatar for adamsmomplus2
Community Leader
Registered: 09-09-2000
Mon, 10-28-2013 - 9:38pm
Hi Monica, I've heard of the podhaler, but haven't used it. Sarah hasn't cultured pseudomonas for several years and it wasn't around then. I know what you're talking about with the traditional TOBI, it's a pain. I'm so glad it is working so well for Paige. If Sarah ever needs TOBI again, I know what to ask for. We've been bumped up to 2 vests and added saline. We did great with morning vest and Pulmozyme, but adding night vest and saline is much harder. Sometimes we have to squeeze it in right after school because we have somewhere to go and won't be home until bedtime and Sarah does not do well if she has a late bedtime. MA
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Avatar for adamsmomplus2
Community Leader
Registered: 09-09-2000
Mon, 10-28-2013 - 9:38pm
Hi Monica, I've heard of the podhaler, but haven't used it. Sarah hasn't cultured pseudomonas for several years and it wasn't around then. I know what you're talking about with the traditional TOBI, it's a pain. I'm so glad it is working so well for Paige. If Sarah ever needs TOBI again, I know what to ask for. We've been bumped up to 2 vests and added saline. We did great with morning vest and Pulmozyme, but adding night vest and saline is much harder. Sometimes we have to squeeze it in right after school because we have somewhere to go and won't be home until bedtime and Sarah does not do well if she has a late bedtime. MA
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Avatar for adamsmomplus2
Community Leader
Registered: 09-09-2000
Mon, 10-28-2013 - 9:39pm
Hi Monica, I've heard of the podhaler, but haven't used it. Sarah hasn't cultured pseudomonas for several years and it wasn't around then. I know what you're talking about with the traditional TOBI, it's a pain. I'm so glad it is working so well for Paige. If Sarah ever needs TOBI again, I know what to ask for. We've been bumped up to 2 vests and added saline. We did great with morning vest and Pulmozyme, but adding night vest and saline is much harder. Sometimes we have to squeeze it in right after school because we have somewhere to go and won't be home until bedtime and Sarah does not do well if she has a late bedtime. MA
Photobucket
Avatar for adamsmomplus2
Community Leader
Registered: 09-09-2000
Mon, 10-28-2013 - 9:39pm
Hi Monica, I've heard of the podhaler, but haven't used it. Sarah hasn't cultured pseudomonas for several years and it wasn't around then. I know what you're talking about with the traditional TOBI, it's a pain. I'm so glad it is working so well for Paige. If Sarah ever needs TOBI again, I know what to ask for. We've been bumped up to 2 vests and added saline. We did great with morning vest and Pulmozyme, but adding night vest and saline is much harder. Sometimes we have to squeeze it in right after school because we have somewhere to go and won't be home until bedtime and Sarah does not do well if she has a late bedtime. MA
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