Flying with vest and meds

[idajune]

Hi all! It has been ages since I posted anything but I knew right where to come for expert advice. I am flying to North Carolina from MN in March. I have the Vest, model 104 in the duffle, plus all my meds. I am wondering how flying is with the Vest. Any special requirements, letters, problems any one has had? Same thing goes for meds, does anyone get questioned about vials of albuterol or pulmozyme, or pills? I am guessing letter from Docs are required. Any other info would be most helpful.

My other big question is about air pressure in the cabin, does anyone have problems in the kind air in the plane as far as heaviness on the chest or anything else? I haven't flown since 1997 and my lungs have deteriorated considerable since then so I want to know if I should be aware of anything. I haven't spoken with my doc yet but wondered how you all felt.

Thanks for you info.

 

[IG]

Flying with the vest... when I went up to Michigan for the summer what we did was we put it in a small steamer trunk style package and printed out a sign that said 'Medical Equipment' and taped it on all the sides. Had no problems with it, in fact it came back with a sticker on it from the airlines saying 'handle with care' But that was a few years ago, I'm not sure with all the precautions that you might want to have a letter from your doctor if you're taking it on the flight with you as opposed to storing it. As for medications, the last flight that I was on [which was more recent, in 04, than taking the vest with me] I had a letter from my doctor with me just in case and was never even stopped or questioned about the meds. Better safe than sorry I figured though. I never had a problem flying even when my chest was really crappy, no heaviness or trouble breathing. Anyway hope this helps.

 

[anonymous]

Hi,

I live in Germany, so I don´t have a vest, but I travel a lot with all the diabetes-stuff and all the oral medication. I have also been to the USA after september 11th and I was never even asked anything about all these pills in my handluggage. Even in Israel they only asked me about a small package with a face-mask, which was in my bag.
Nevertheless I do always have a confirmation of my hospital with me that I have cf and diabetes and need all this meds.

Normally I don´t have a problem with flying, only when I´m really sick, I do notice the lower oxygen level in my blood (problems with breathing). In 2004 I had problems on a flight back from Egypt, so I asked the stewardess for oxygen, and it was no problem to get it.

Uli,43,Germany

 

[CFHockeyMom]

We fly pretty regularly and haven't had any problems/issues with bringing meds on the plane. Sean doesn't have a vest so I can't help you there but one piece of advice do have is to make sure you bring all of your "must have" meds with you on the plane as a carry on. Luggage does get lost. Also, before we leave, I always make sure I find a good pharmacy in the area we're travelling to, just in case the meds don't respond well to the pressurized cabin or in case we forget something.

Not sure if you're staying with family/friends or in a hotel? If you're going to be in a hotel, find out if you have a fridge in the room and if not try and make arrangements to have any refridgerated meds stored in the hotel kitchen fridge. You can also use an ice bucket in a pinch but that's not exactly ideal.

 

[anonymous]

We flew recently with vest and meds - all carry-ons. We had a letter from Samantha's doctor stating her diagnosis (CF) and the need for the vest and many meds. Our clinic advised us to make sure all the meds had the prescription with Samantha's name on it, although no one really even checked that at either airport.

We carried the Pulmazyme and Tobi in a small soft nylon shoulder strapped cooler. We had no problems.

Maria (Sami's mom)

 

[Alyssa]

My daughter has traveled with via train, bus & plane without any problems carrying Pulmozyme in a small cooler, meds compresser & nebs (but no vest) She has a letter from the CF doc/clinic but nobody has ever asked to see it.

 

[anonymous]

We travelled from kentucky to Hawaii last august with the same vest you have ,we had no problems of course the security looked through the bag we had it in ,but the vest fits in the overhead bins on the airplane great so we just kept it with us at all times.Good luck

 

[anonymous]

I've never been stopped and questioned about all the meds, which I find rather remarkable given some of the sketchy places I've been. Who knows what all those little colored pills are, after all? Thankfully, the security goons seem too obsessed with your sneakers to worry about your drugs. As far as the breathing, I find a little valium or ativan greatly eases the discomfort. That, or drinking your way to wherever your going and paying the price later. These days, I prefer the downers.

Q

 

[JazzysMom]

Has anyone gotten any seperate insurance for the vest for traveling? Does it exist? Do you think it necessary? I apologize if this has been addressed before!

 

[anonymous]

I have traveled with the vest a lot, plus all my medicines and needles to mix inhaled cephtaz nebs. I just did this last week in fact- no problems. I also have a portable O2 machine because I use O2 at night now, and I had no problems with that either. I just carry doctors letters with me that I use repeatedly for every trip, but so far no one has ever asked to see them.

As far as flying and breathing goes, I now use O2 on the airplane. My resting O2 during the day is anywhere between 96-98 during the day, OFF of oxygen. It was determined however that I desat at night, and with exercise (rigorous, like running), so I use O2 for those things. Also on airplanes everyone desat's a little, and now I know why I always used to feel so horrible after a flight! Because my O2 sat was probably like 87.

It is funny I actually remember a while back writing a post, asking if anyone else felt horrible after flying. I use O2 on the flight, and it is really interesting, because if I get up to go to the bathroom or something and take the O2 off, when I come back my sat is at like, 86%!!! And I cant really even tell. I guess 40,000 ft will do that. Anyway, long story short, I no longer feel horrible after flights (I have flown 4 times since starting the O2 in October), and in fact I feel refreshed! It is strange because to see me during the day, or to see how I feel, you would never guess I would desat so much at night/midair/with exercise. I normally am pretty good.

Caitlin
22 w/ CF b.cepacia

 

[JustDucky]

I have never flown with the vest, but I did fly with my BiPAP when I was on it, it is actually allowed as carry on, it doesn't count towards your limit to the one bag. I would think tht if I flew again, my vest could accompany me as carry on, I would much rather keep an eye out on it myself (I have the 104 model as well) My doc wrote a letter of necessity. I was also on O2 at the time, needed a prescription well in advance from my doc to fly with it, you aren't allowed to take your own on the planes, you have to use theirs at a cost though which ranges from airline to airline. Also, good idea to call the airline you are using to make sure that they can accomodate you if you are an O2 user, some airlines do not provide that service. Delta was great with me, even gave me an extra seat for no extra charge because I had so many pieces of equipment. As for your meds...never ever pack them in your regular luggage that you check in, I have always carried mine on the plane...something else they don't count towards your carry on limits. I wish you luck...and have a great time! Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Hi!

I actually fly ALOT in the US... I've had the 104 model vest as a carry-on AND i checked it with "fragile" written all over the duffle. In all cases, I've never had a single issue with it... (knock on wood). They are not allowed to count medical equipment or a bag filled soley with medication as a carry on. I usually have a purse, a bag, and my vest when I carry it on. I also have the print out from the transportation security administration saying that I have to be allowed more than a purse and bag if its medically necessary. You can go to the TSA website and find the documentation if you want to print it. I have to search for the site and documents everytime I travel... urgh! You would think I'd just bookmark it!
Anyway, as far as carrying anything on... I've never had a doctor's letter, rarely have my pills in marked containers to specify they're prescription, and even have all my needles just rolling around my carry-on sometimes! I've never been questioned once. I think the TSA knows what insulin needles are and that they probably can't hurt anyone anyway... although, I beg to differ based on the black and blue marks I've gotten from my shots! ha ha!
Anyway, it probably wouldn't hurt to have a dr. note or stuff in marked containers, but I just never have. Good Luck and no worries!
Oh, and as far as sats.... I've never had a big problem. In fact, even when I was at 50%, I didn't know that sats go down in planes, and it never even crossed my mind. JMO though. I'm sure if I were to check them, they'd be much lower than I felt at the time!

 

[anonymous]

I usually carry a small cooler with DS's medications in it and because he's a toddler his drugs for the day are all measured up in little oral syringes in a baggy. They have scrutinized that a few times -- suppose it looks like syringes on the Xray. I also have a letter indicating DS has CF, but I've never had to use it.

The cooler is one of those lunch bag coolers and I put one of the polar ice, ice packs that I get from the CF pharmacy when they ship us tobi. Seems to keep everything the coolest the longest. Regular ice packs don't see to last that long. The drugs that don't need to be in the fridge I put in a clear plastic make up bag, so they can see the labels, but don't have to remove every thing from the bag. That also fits in the carry on. And then the nebulizer I put in a tiny kids backpack with all the neb cups at the bottom of the carry on. We don't have a vest yet.