TOBI & Pulmozyme

[Scarlett81]

If this has been covered anywhere else-sorry, I'm blonde.

Um- We're leaving for our trip in a week. I want to take Pulmozyme at least and TOBI too if I can. Here's our trip itinerary: leave NYC 5:00 pm-arrive Paris 7 hours later, 7 hour layover in Paris (ugggg), leave Paris, arrive dubai 5 hours later. So between travel time, layovers, ect-Like 20 hours of travel.

So how am I gonna bring these meds people? Any tips? Never did this before. When I went to Europe last yr I wasn't on them. I really want to bring them.

 

[Ratatosk]

Polarpac ice packs in a small cooler. We use the ice packs we get from the CF Services Pharmacy. They last a LOT longer than the ones you get in the camping department at the discount store.

I haven't used them for THAT long of a time frame -- I have packed a cooler at 4 a.m. with those, flew to mexico temps once we got to mexico were in the mid 80s -- we landed around 2 p.m and got to our villa about 4 mexico time. Last summer I packed the cooler about 10, flew to denver, had lunch, did some site seeing with the drugs in my bag (in a lunchbox cooler with those icepacks), outside in upper 95 degree weather for several hours before arriving to the place we were staying in time for supper. The polarpac bags were still pretty much frozen solid -- a little gelly around the edges.

If you have access to the polarpac ice packs -- do a little test -- pack them in a little cooler in the morning, check them after about 8 hours, check again.... See how long it takes those darned things to thaw. Liza

 

[Scarlett81]

I bet Amy would know the answer to this-but anyone will do-
Do you think you could freeze the actual vials of TOBI and pulmozyme?-=along with putting them with the ice packs I mean.

And I've never got anything with Ice packs from CF services. Do you think I could just ask for them? doubt it.

 

[Ratatosk]

Could you ask your pharmacy if they have any or local clinic/hospital? They surely receive meds from other places that have to be kept cold...

It's my understanding that Tobi can be kept at room temperature for several days, but pulmozyme is a no no. I wouldn't dare freeze the meds. Could mess them up, or they might explode once they thaw....

 

[JazzysMom]

I would check with any type of medical supply co or distributor. There are ice packs, special bags etc to help keep things cold. The ones used by my home care agency kept my iv meds cold for more than 24 hours since they delivered the day before I came home & hubby didnt know to refridgerate them. Do not freeze the meds themselves tho! Maybe even check with the doctors office......I am sure someone there would have ideas.

 

[JennifersHope]

Tobi can be left at room temp for a 28 days. but I don't think you can put it back in the refridge if you take it out.. Double check..

Here is the tobi website..

<a target=_blank class=ftalternatingbarlinklarge href="http://www.abouttobi.com/prescribing/TOBI_US_Patient_Instruct(40-1020-G).pdf
">http://www.abouttobi.com/presc...struct(40-1020-G).pdf
</a>
About the Pulmozyme, that does need to stay cool, what I have done when I fly, and also to store in my car to do treatments on my way home from work to save time, I store the Pulmozyme in a thermos, packed with ice... it stays great for up to 17 hours. That is how long some of my days are sometimes and it is still good by the time I get to it.

ALso, you can store it in your carry on bag and just ask the airline stewardess for some ice to refill you container with...

Have fun,

Jennifer

 

[Ratatosk]

And I imagine your car gets a little warm in the summers and it still stays relatively cool?

I did leave the cooler with the polarpac icepacks in the car for a couple hours while ate lunch and checked out a museum -- temps were in the mid to upper 80s... Icepacks were still frozen

 

[JennifersHope]

Yes my car gets really hot in the summer. I just stuff it under the seat, and crack the window a tiny bit.. No problem what so ever. When I first started doing it, I was paranoid, and opened the container all the time which made it melt faster.. Left alone it is fine.

 

[anonymous]

I have always just packed them with an icepak. But I think it is a great idea to call a home health care company and ask them and even see what kinds of portable bags or something they have you can buy to keep meds cold. Have fun!!!!



Jennifer 34 years old with CF and CFRD

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>





ALso, you can store it in your carry on bag and just ask the airline stewardess for some ice to refill you container with...



Have fun,



Jennifer</end quote></div>




I dont know from what I have been hearing on changes with airlines, they might charge $20.00 for each ice cube! LOL!

 

[anonymous]

I second the polar paks. A couple of those will keep it cool enough for at least 24 hours in a small cooler bag. ie. You can get a backpak with a cooler compartment.

 

[anonymous]

TOBI can be at room temp for to 28 days. And yes you can put it back in the fridge, I have never heard, read or been told otherwise. Thats just silly that you can't put it back in the fridge after taking it out. Pulmozyme can stay out for 8hrs

 

[NoExcuses]

Hey girl,

1st off - how exciting that you're going to Dubai. I LIVE to travel....

I would go to a pharmacy (SavOn, Rite Aid) and purchase some ice packs. Then put the TOBI and pulmozyme in one of those lunch bags that you can get at the groccery store that keep things cool. That's the best way to go about it, from my 8 trips to Europe.

Don't freeze - that's not recommended. And make sure to carry all your meds on board with you... dont' check them in. Airlines can delay transportation of luggage and then you're out of meds for a few days <img src="i/expressions/face-icon-small-sad.gif" border="0">

HAVE A BLAST. please promise to take lots of pics and show us when you get back.

 

[Scarlett81]

thanks all and amy:
actually we're not going to europe-I mean our plane stops there, and we'll be there a few days on the way home, but our trip is to Dubai, the capitol of the UAE in the Indian Ocean. So-it's further and there are probably fat people there.<img src="i/expressions/face-icon-small-happy.gif" border="0">

I have this picture of a rolly polly smiling arabian sheik-I don't know-like the father in Disney's Aladdin!!!! LOL!

I love Europe too-especially France. I'm very comfortable and it's like a home to me-so in Dubai I will be out of my element, but I really want to explore and try something new. Though I have this urge to extend our trip and go to Paris for a week!!! I love Paris! But 2 weeks in Dubai will be enough.

We'll be doing alot of archaeological touring-desert trips, and of course-shopping which that city is famous for! All that oil wealth! I'll be "princess Jasmine" for two weeks! God-how freakin corny I am, but holla if you love Disney!

 

[NoExcuses]

What a dream. Dubai.

Well in that case, you'll have to take more pictures!!!!!!!!

How thrilling. I am definitely jealous <img src="i/expressions/face-icon-small-happy.gif" border="0">

Have a safe and fabulous trip <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

the thermos packed with ice is a great idea---we will try it!

 

[julie]

We've traveled many a times with mark's meds and they are always kept in the fridge at home-But when we go on trips.... forget it. The medication works the same, as someone else mentioned Tobi can be kept out of the fridge for about a month and I wasn't sure on the pulmozyme but we did it anyways. We didn't ever seem to have any problems either times we went (about 7 or 8).

Good luck and have fun, I am jealous!!!

 

[anonymous]

Pulmozyme cannot be out of the refrigerator for more than 72 hours. I went to pick up my order of pulmozyme from the pharmacy and they didn't have it refrigerated (as they always do) and so I asked the pharmacist if it was still good. He called the makers of Pulmozyme and that is when they said that Pulmozyme must be thrown away after 72 hours if not refrigerated. Since the Pulmozyme had been on the shelf for about 80 hours twithout being refrigerated the pharmacy had to eat the cost of that months supply and pay extra to overnight a new supply for me. I hope you find this information helpful.

 

[anonymous]

I remove mine from the packets and place them in a 2 liter bottle, where I have in advance, frozen the boddle with 3/4 water. Once froze, I place the meds in. This keeps for about 6-8 hours. For more time, I would take the bottle on the plane and maybe ask the stewardess if i could refridigerate my bottle. If you talk to them they might accomodate you. If not, you could have them place ice chips in the bottle once if begins to warm. Though I would not recommend the ice, because you don't know the quality of the water that ice has been made of, and there by spreading germs to the vials (not inside of course, but the outside of the vials). You could soak the vials in a bottle of alchohol after you remove them from the water bottle, if you used airplane ice chips to keep the bottle cool.