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ladybug

New member
2.5 months of TOBI

Kelly (and all):

I was not able to cut and paste cause its an adobe acrobat document, so please follow this link to the information packet that comes with the TOBI.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.abouttobi.com/prescribing/TOBI_US_PI(40-1013-F).pdf#search='TOBI%20information'">http://www.abouttobi.com/presc...h='TOBI%20information'</a>

You'll have to scroll down to "storage" where you will find it CAN be stored at room temperature for up to 28 days. This is the exact hand-out that comes in its packaging from the company. Hope this helps.

I also had severe sob and bronchospasms and personally hate TOBI.... It seemed to get worse for me the longer I was on it.

Good Luck with the link!
 
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Alexandria

New member
2.5 months of TOBI

<img src="i/expressions/face-icon-small-happy.gif" border="0">I do Tobi 28 days on and off. I do not like it one bit when im on my tobi it takes me a hour to do my medicine and i have to do my medicine 2 times a day in the morning and at 7 at night. I do my vest, pulmozyne, and Tobi. at the 7 pm one
 
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anonymous

New member
2.5 months of TOBI

Please don't ship it without being in a styrofoam box with ice. It is true it can be at ROOM temperature but parcel post and UPS and FedEx do not maintain room temperature in all the places a box sits in transit: i.e. the cargo hold of a plane, the back of a tractor trailer truck on the highway, etc. can give wild temp. swings. That's why mail order pharmacies send it on ice.
 
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ladybug

New member
2.5 months of TOBI

uh-oh! i always stuck my TOBI in the checked luggage when I traveled! <img src="i/expressions/face-icon-small-shocked.gif" border="0"> I guess I never thought about the temp being that different down there.... isn't it temp controlled for pets that stay down there? (sorry a bit off-topic)....
 
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anonymous

New member
2.5 months of TOBI

I have a small lunch bag cooler, which I put tobi and pulmozyme any other drugs that need to be chilled, throw in one of those polar pac ice packs I get from CF Pharmacy and put the bag in my carry-on. Lost luggage too many times. Also last summer it was 97 degrees when I arrived in Denver and by the time we reached our destination, got the bags unpacked -- the stuff was still really cool!

Those polarpac ice packs work wonders -- still frozen after being in my carryon all day long!

Liza aka ratatosk
 
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ladybug

New member
2.5 months of TOBI

i really don't have any room for a small cooler carry on with the huge vest bag and a bag i bring with money, odds and ends, etc.... i am curious if i could just put a small cooler in my checked luggage with a cooler pack? i know i take a huge chance checking it, but if they loose it, i would probably just have my doc call the meds into a local pharmacy where i'm at (i know, all a bit risky, but i just hate dragging around more than 2 bags carry-on).

thanks for the GREAT idea though! i didn't realize the packs stay cold that long.... don't know why though.... obviously they send them in the mail.... lol
 
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Ratatosk

Administrator
Staff member
2.5 months of TOBI

You can usually bring a carry-on and a purse or laptop. So I usually put my billfold and essentials in a backpack or totebag for use as my purse and pack my empty purse in my luggage for use when I arrive. Last winter when we went to Cabo, I used a tote bag with the nebulizer, medications & cooler and had a tiny purse with a long shoulder strap that contained my credit cards, cash and passports.

Plus it's my understanding that medical equipment (vest/nebulizer) should NOT count as a carry-on as it's essential medical equipment -- so it should count as a freebie. However, friend of mine's daughter was on the phone for three days last winter with NW airlines trying to convince them to let her take the vest on as a carryon when they went to Cancun -- they were insistent that she check it.

Liza
 
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anonymous

New member
2.5 months of TOBI

When they figure you carryon allowance, they are not allowed to count anything you need to carry on because you are disabled.
 
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ladybug

New member
2.5 months of TOBI

Howdy...

First off, I never check my vest or nebs or neb machine, so all the equipment is with me. I usually did check all but a couple of albuterols and atrovents and colistyn with me, but not all of it, as most of my trips are military TDY and they can be up to 7-8 weeks long. So, it would be me carrying a purse, my vest bag stuffed full, and another bag full of meds all alone through the airports. I just don't want that hassle.

I do want to say that on a flight to Atlanta from Vegas over Easter, I took everyone's suggestion and packed ice around my pulmozyme (a couple of ice packs).... Well, I stuck it in my checked bag and by the time I got to Atlanta after one stop, the ice was nothing but water and the pulmozyme was room temp. anyway.... So, point taken that one should not check cold meds... and, it doesn't seem the ice paks will even work! YIKES! I will probably start cramming them into my vest bag, and if there is too much, I will have them mailed to me. I guess I've been doing this for YEARS in checked luggage without ice, and never had a problem with the med going back or getting sick from it or anything, so I didn't know any better.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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