travelling with cf

mamaScarlett

Active member
ditto what melissa said!

I'm sure i'll repeat some things amy has said before, but emphasis isn't bad...

i have cf and hubby and i have traveled all over-europe, middle east, carribean. my # rule for myself is, if this makes me sick it isn't worth it, sticking to my regimen while traveling is vital. so- pace yourself and plan ahead.

if you know it'll be an early start for a tour or something-get up early enough to do a therapy, and get in early enough to do one at night.

stay hydrated!-being out all day, in the sun or otherwise takes moisture out of your lungs, so push fluids with your child all day, esp on the plane if you can.

for the plane ride i drink airborne the night before and morning of. it definitely has made a difference for me.

give yourself enough time to comfortably get through check in at the airport-its going to take you much longer and you will hold up the line, and the attendants may annoy you with extra questions and searching-so expect it and don't stress.

get a list from your doctor of all of your childs meds, including any needles they may need if you use them, your vest and nebulizer. if you are given a problem at check in or switching planes in another country, present the list and you'll be given better service.

you can also add on that list that your vest must be a carry on item on the plane and that it should NOT count as a piece of carry on for you bc its a medical necessity.

i have the hillrom 104 and it comes in a great carry on bag-with side pockets for me to store 2 nebs i bring traveling-a desktop portable neb that can be used with an outlet or with a car adaptor-it has the same neb time as my home compressor! and i bring a portable cordless omron which doesn't have great neb times, but its a back up in case something happens to my other one.

i don't like to bring my home neb with me bc of converter 'accidents' which have happened to me even with the right power adaptor. and check which power adaptor you'll need for your neb before you go-i threw out a fried neb in the czech republic before-it wasn't fun.

i'd consider getting an extra neb if i were you. there are some great inexpensive portable type nebulizers. its a good feeling to have a backup in case of electrical emergency, or loss.

i keep all my meds, nebs, and vest in the same bag with me on the plane at all times. don't check meds if you can help it! lost luggage happens.

for certain trips i don't bring my vest and my husband does manual therapy for me. next month we are going on a 2 week tour of the middle east and we'll be moving to different locations every few days so i decided it was too much to lug that around. that doesn't work for everyone, but if your family feels comfortable with it, its an option. bringing an acapella or flutter can compliment that.

for my upcoming trip i got travel insurance with health insurance. not everyone can do that or needs it. but since i am going to the middle east i felt it was worth it. for a 2 week trip it cost us $250. i have $100,000 dollars worth of health insurance, plus guaranteed emergency flight to my clinic back home.

i'd talk to your clinic social worker about what your insurance covers for overseas treatment.

if there are any meds that your child is on that come in an inhaler form-(albuterol, xopenex) i'd get them. you can carry them with you and use them as needed. and they save time.

have fun!! cf doesn't stop me from doing the things i want to do-you just have to adapt it a little.
 

mamaScarlett

Active member
ditto what melissa said!

I'm sure i'll repeat some things amy has said before, but emphasis isn't bad...

i have cf and hubby and i have traveled all over-europe, middle east, carribean. my # rule for myself is, if this makes me sick it isn't worth it, sticking to my regimen while traveling is vital. so- pace yourself and plan ahead.

if you know it'll be an early start for a tour or something-get up early enough to do a therapy, and get in early enough to do one at night.

stay hydrated!-being out all day, in the sun or otherwise takes moisture out of your lungs, so push fluids with your child all day, esp on the plane if you can.

for the plane ride i drink airborne the night before and morning of. it definitely has made a difference for me.

give yourself enough time to comfortably get through check in at the airport-its going to take you much longer and you will hold up the line, and the attendants may annoy you with extra questions and searching-so expect it and don't stress.

get a list from your doctor of all of your childs meds, including any needles they may need if you use them, your vest and nebulizer. if you are given a problem at check in or switching planes in another country, present the list and you'll be given better service.

you can also add on that list that your vest must be a carry on item on the plane and that it should NOT count as a piece of carry on for you bc its a medical necessity.

i have the hillrom 104 and it comes in a great carry on bag-with side pockets for me to store 2 nebs i bring traveling-a desktop portable neb that can be used with an outlet or with a car adaptor-it has the same neb time as my home compressor! and i bring a portable cordless omron which doesn't have great neb times, but its a back up in case something happens to my other one.

i don't like to bring my home neb with me bc of converter 'accidents' which have happened to me even with the right power adaptor. and check which power adaptor you'll need for your neb before you go-i threw out a fried neb in the czech republic before-it wasn't fun.

i'd consider getting an extra neb if i were you. there are some great inexpensive portable type nebulizers. its a good feeling to have a backup in case of electrical emergency, or loss.

i keep all my meds, nebs, and vest in the same bag with me on the plane at all times. don't check meds if you can help it! lost luggage happens.

for certain trips i don't bring my vest and my husband does manual therapy for me. next month we are going on a 2 week tour of the middle east and we'll be moving to different locations every few days so i decided it was too much to lug that around. that doesn't work for everyone, but if your family feels comfortable with it, its an option. bringing an acapella or flutter can compliment that.

for my upcoming trip i got travel insurance with health insurance. not everyone can do that or needs it. but since i am going to the middle east i felt it was worth it. for a 2 week trip it cost us $250. i have $100,000 dollars worth of health insurance, plus guaranteed emergency flight to my clinic back home.

i'd talk to your clinic social worker about what your insurance covers for overseas treatment.

if there are any meds that your child is on that come in an inhaler form-(albuterol, xopenex) i'd get them. you can carry them with you and use them as needed. and they save time.

have fun!! cf doesn't stop me from doing the things i want to do-you just have to adapt it a little.
 

mamaScarlett

Active member
ditto what melissa said!

I'm sure i'll repeat some things amy has said before, but emphasis isn't bad...

i have cf and hubby and i have traveled all over-europe, middle east, carribean. my # rule for myself is, if this makes me sick it isn't worth it, sticking to my regimen while traveling is vital. so- pace yourself and plan ahead.

if you know it'll be an early start for a tour or something-get up early enough to do a therapy, and get in early enough to do one at night.

stay hydrated!-being out all day, in the sun or otherwise takes moisture out of your lungs, so push fluids with your child all day, esp on the plane if you can.

for the plane ride i drink airborne the night before and morning of. it definitely has made a difference for me.

give yourself enough time to comfortably get through check in at the airport-its going to take you much longer and you will hold up the line, and the attendants may annoy you with extra questions and searching-so expect it and don't stress.

get a list from your doctor of all of your childs meds, including any needles they may need if you use them, your vest and nebulizer. if you are given a problem at check in or switching planes in another country, present the list and you'll be given better service.

you can also add on that list that your vest must be a carry on item on the plane and that it should NOT count as a piece of carry on for you bc its a medical necessity.

i have the hillrom 104 and it comes in a great carry on bag-with side pockets for me to store 2 nebs i bring traveling-a desktop portable neb that can be used with an outlet or with a car adaptor-it has the same neb time as my home compressor! and i bring a portable cordless omron which doesn't have great neb times, but its a back up in case something happens to my other one.

i don't like to bring my home neb with me bc of converter 'accidents' which have happened to me even with the right power adaptor. and check which power adaptor you'll need for your neb before you go-i threw out a fried neb in the czech republic before-it wasn't fun.

i'd consider getting an extra neb if i were you. there are some great inexpensive portable type nebulizers. its a good feeling to have a backup in case of electrical emergency, or loss.

i keep all my meds, nebs, and vest in the same bag with me on the plane at all times. don't check meds if you can help it! lost luggage happens.

for certain trips i don't bring my vest and my husband does manual therapy for me. next month we are going on a 2 week tour of the middle east and we'll be moving to different locations every few days so i decided it was too much to lug that around. that doesn't work for everyone, but if your family feels comfortable with it, its an option. bringing an acapella or flutter can compliment that.

for my upcoming trip i got travel insurance with health insurance. not everyone can do that or needs it. but since i am going to the middle east i felt it was worth it. for a 2 week trip it cost us $250. i have $100,000 dollars worth of health insurance, plus guaranteed emergency flight to my clinic back home.

i'd talk to your clinic social worker about what your insurance covers for overseas treatment.

if there are any meds that your child is on that come in an inhaler form-(albuterol, xopenex) i'd get them. you can carry them with you and use them as needed. and they save time.

have fun!! cf doesn't stop me from doing the things i want to do-you just have to adapt it a little.
 

mamaScarlett

Active member
ditto what melissa said!

I'm sure i'll repeat some things amy has said before, but emphasis isn't bad...

i have cf and hubby and i have traveled all over-europe, middle east, carribean. my # rule for myself is, if this makes me sick it isn't worth it, sticking to my regimen while traveling is vital. so- pace yourself and plan ahead.

if you know it'll be an early start for a tour or something-get up early enough to do a therapy, and get in early enough to do one at night.

stay hydrated!-being out all day, in the sun or otherwise takes moisture out of your lungs, so push fluids with your child all day, esp on the plane if you can.

for the plane ride i drink airborne the night before and morning of. it definitely has made a difference for me.

give yourself enough time to comfortably get through check in at the airport-its going to take you much longer and you will hold up the line, and the attendants may annoy you with extra questions and searching-so expect it and don't stress.

get a list from your doctor of all of your childs meds, including any needles they may need if you use them, your vest and nebulizer. if you are given a problem at check in or switching planes in another country, present the list and you'll be given better service.

you can also add on that list that your vest must be a carry on item on the plane and that it should NOT count as a piece of carry on for you bc its a medical necessity.

i have the hillrom 104 and it comes in a great carry on bag-with side pockets for me to store 2 nebs i bring traveling-a desktop portable neb that can be used with an outlet or with a car adaptor-it has the same neb time as my home compressor! and i bring a portable cordless omron which doesn't have great neb times, but its a back up in case something happens to my other one.

i don't like to bring my home neb with me bc of converter 'accidents' which have happened to me even with the right power adaptor. and check which power adaptor you'll need for your neb before you go-i threw out a fried neb in the czech republic before-it wasn't fun.

i'd consider getting an extra neb if i were you. there are some great inexpensive portable type nebulizers. its a good feeling to have a backup in case of electrical emergency, or loss.

i keep all my meds, nebs, and vest in the same bag with me on the plane at all times. don't check meds if you can help it! lost luggage happens.

for certain trips i don't bring my vest and my husband does manual therapy for me. next month we are going on a 2 week tour of the middle east and we'll be moving to different locations every few days so i decided it was too much to lug that around. that doesn't work for everyone, but if your family feels comfortable with it, its an option. bringing an acapella or flutter can compliment that.

for my upcoming trip i got travel insurance with health insurance. not everyone can do that or needs it. but since i am going to the middle east i felt it was worth it. for a 2 week trip it cost us $250. i have $100,000 dollars worth of health insurance, plus guaranteed emergency flight to my clinic back home.

i'd talk to your clinic social worker about what your insurance covers for overseas treatment.

if there are any meds that your child is on that come in an inhaler form-(albuterol, xopenex) i'd get them. you can carry them with you and use them as needed. and they save time.

have fun!! cf doesn't stop me from doing the things i want to do-you just have to adapt it a little.
 

mamaScarlett

Active member
ditto what melissa said!
<br />
<br />I'm sure i'll repeat some things amy has said before, but emphasis isn't bad...
<br />
<br />i have cf and hubby and i have traveled all over-europe, middle east, carribean. my # rule for myself is, if this makes me sick it isn't worth it, sticking to my regimen while traveling is vital. so- pace yourself and plan ahead.
<br />
<br />if you know it'll be an early start for a tour or something-get up early enough to do a therapy, and get in early enough to do one at night.
<br />
<br />stay hydrated!-being out all day, in the sun or otherwise takes moisture out of your lungs, so push fluids with your child all day, esp on the plane if you can.
<br />
<br />for the plane ride i drink airborne the night before and morning of. it definitely has made a difference for me.
<br />
<br />give yourself enough time to comfortably get through check in at the airport-its going to take you much longer and you will hold up the line, and the attendants may annoy you with extra questions and searching-so expect it and don't stress.
<br />
<br />get a list from your doctor of all of your childs meds, including any needles they may need if you use them, your vest and nebulizer. if you are given a problem at check in or switching planes in another country, present the list and you'll be given better service.
<br />
<br />you can also add on that list that your vest must be a carry on item on the plane and that it should NOT count as a piece of carry on for you bc its a medical necessity.
<br />
<br />i have the hillrom 104 and it comes in a great carry on bag-with side pockets for me to store 2 nebs i bring traveling-a desktop portable neb that can be used with an outlet or with a car adaptor-it has the same neb time as my home compressor! and i bring a portable cordless omron which doesn't have great neb times, but its a back up in case something happens to my other one.
<br />
<br />i don't like to bring my home neb with me bc of converter 'accidents' which have happened to me even with the right power adaptor. and check which power adaptor you'll need for your neb before you go-i threw out a fried neb in the czech republic before-it wasn't fun.
<br />
<br />i'd consider getting an extra neb if i were you. there are some great inexpensive portable type nebulizers. its a good feeling to have a backup in case of electrical emergency, or loss.
<br />
<br />i keep all my meds, nebs, and vest in the same bag with me on the plane at all times. don't check meds if you can help it! lost luggage happens.
<br />
<br />for certain trips i don't bring my vest and my husband does manual therapy for me. next month we are going on a 2 week tour of the middle east and we'll be moving to different locations every few days so i decided it was too much to lug that around. that doesn't work for everyone, but if your family feels comfortable with it, its an option. bringing an acapella or flutter can compliment that.
<br />
<br />for my upcoming trip i got travel insurance with health insurance. not everyone can do that or needs it. but since i am going to the middle east i felt it was worth it. for a 2 week trip it cost us $250. i have $100,000 dollars worth of health insurance, plus guaranteed emergency flight to my clinic back home.
<br />
<br />i'd talk to your clinic social worker about what your insurance covers for overseas treatment.
<br />
<br />if there are any meds that your child is on that come in an inhaler form-(albuterol, xopenex) i'd get them. you can carry them with you and use them as needed. and they save time.
<br />
<br />have fun!! cf doesn't stop me from doing the things i want to do-you just have to adapt it a little.
<br />
<br />
<br />
<br />
<br />
 

carmick

New member
Medical equipment doesn't technically count towards your weight or baggage limits, but occasionally you'll get someone who doesn't know the rules and will charge you extra. I've never had any luck fighting with them there, so if that happens you might to go back through the airline later to get a refund. One of their biggest complaints is if you try to pack your meds/equipment with anything else (God forbid you try to not have 5 carry-ons): they say they can't separate it (even if you manually unpack and reweigh) and then you have to go through the company to get your money back. Either that or bring some extra bags that fold up small so you can repack in the airport to make them happy.

I don't know about overseas travel, but for long roadtrips/camping with a car I've found that a lighter adapter is really helpful so I know I can always do my nebs without having to worry about batteries.
 

carmick

New member
Medical equipment doesn't technically count towards your weight or baggage limits, but occasionally you'll get someone who doesn't know the rules and will charge you extra. I've never had any luck fighting with them there, so if that happens you might to go back through the airline later to get a refund. One of their biggest complaints is if you try to pack your meds/equipment with anything else (God forbid you try to not have 5 carry-ons): they say they can't separate it (even if you manually unpack and reweigh) and then you have to go through the company to get your money back. Either that or bring some extra bags that fold up small so you can repack in the airport to make them happy.

I don't know about overseas travel, but for long roadtrips/camping with a car I've found that a lighter adapter is really helpful so I know I can always do my nebs without having to worry about batteries.
 

carmick

New member
Medical equipment doesn't technically count towards your weight or baggage limits, but occasionally you'll get someone who doesn't know the rules and will charge you extra. I've never had any luck fighting with them there, so if that happens you might to go back through the airline later to get a refund. One of their biggest complaints is if you try to pack your meds/equipment with anything else (God forbid you try to not have 5 carry-ons): they say they can't separate it (even if you manually unpack and reweigh) and then you have to go through the company to get your money back. Either that or bring some extra bags that fold up small so you can repack in the airport to make them happy.

I don't know about overseas travel, but for long roadtrips/camping with a car I've found that a lighter adapter is really helpful so I know I can always do my nebs without having to worry about batteries.
 

carmick

New member
Medical equipment doesn't technically count towards your weight or baggage limits, but occasionally you'll get someone who doesn't know the rules and will charge you extra. I've never had any luck fighting with them there, so if that happens you might to go back through the airline later to get a refund. One of their biggest complaints is if you try to pack your meds/equipment with anything else (God forbid you try to not have 5 carry-ons): they say they can't separate it (even if you manually unpack and reweigh) and then you have to go through the company to get your money back. Either that or bring some extra bags that fold up small so you can repack in the airport to make them happy.

I don't know about overseas travel, but for long roadtrips/camping with a car I've found that a lighter adapter is really helpful so I know I can always do my nebs without having to worry about batteries.
 

carmick

New member
Medical equipment doesn't technically count towards your weight or baggage limits, but occasionally you'll get someone who doesn't know the rules and will charge you extra. I've never had any luck fighting with them there, so if that happens you might to go back through the airline later to get a refund. One of their biggest complaints is if you try to pack your meds/equipment with anything else (God forbid you try to not have 5 carry-ons): they say they can't separate it (even if you manually unpack and reweigh) and then you have to go through the company to get your money back. Either that or bring some extra bags that fold up small so you can repack in the airport to make them happy.
<br />
<br />I don't know about overseas travel, but for long roadtrips/camping with a car I've found that a lighter adapter is really helpful so I know I can always do my nebs without having to worry about batteries.
 

saveferris2009

New member
be careful about those car adapters for using your compressor- your compressor might give you air output, but if it's not full power, you're getting a sub therapeutic dose of your medication.

and sub therapeutic doses with antibiotics, can be very harmful - inducing resistance.

so if you're looking to do what christian said (which i 100% agree with) to be compliant during traveling to maintain optimum health, get a compressor that is battery operated.

happy travels!
 

saveferris2009

New member
be careful about those car adapters for using your compressor- your compressor might give you air output, but if it's not full power, you're getting a sub therapeutic dose of your medication.

and sub therapeutic doses with antibiotics, can be very harmful - inducing resistance.

so if you're looking to do what christian said (which i 100% agree with) to be compliant during traveling to maintain optimum health, get a compressor that is battery operated.

happy travels!
 

saveferris2009

New member
be careful about those car adapters for using your compressor- your compressor might give you air output, but if it's not full power, you're getting a sub therapeutic dose of your medication.

and sub therapeutic doses with antibiotics, can be very harmful - inducing resistance.

so if you're looking to do what christian said (which i 100% agree with) to be compliant during traveling to maintain optimum health, get a compressor that is battery operated.

happy travels!
 

saveferris2009

New member
be careful about those car adapters for using your compressor- your compressor might give you air output, but if it's not full power, you're getting a sub therapeutic dose of your medication.

and sub therapeutic doses with antibiotics, can be very harmful - inducing resistance.

so if you're looking to do what christian said (which i 100% agree with) to be compliant during traveling to maintain optimum health, get a compressor that is battery operated.

happy travels!
 

saveferris2009

New member
be careful about those car adapters for using your compressor- your compressor might give you air output, but if it's not full power, you're getting a sub therapeutic dose of your medication.
<br />
<br />and sub therapeutic doses with antibiotics, can be very harmful - inducing resistance.
<br />
<br />so if you're looking to do what christian said (which i 100% agree with) to be compliant during traveling to maintain optimum health, get a compressor that is battery operated.
<br />
<br />happy travels!
 

jaimers

Super Moderator
i'm currently living in italy and agree with what everyone has said. i use the eflow for all of my medications because my pari doesn't work here. i highly recommend it. if you do use that be sure to bring your own alcohol to soak the aerosol head because they don't have alcohol strong enough in europe (or at least italy).

i would have your clinic help you find out where the closest CF clinic is to where you'll be for the duration of your trip. that way, should a cf related emergency come up, you have the necessary information to get to a clinic that knows CF and could actually help you.
 

jaimers

Super Moderator
i'm currently living in italy and agree with what everyone has said. i use the eflow for all of my medications because my pari doesn't work here. i highly recommend it. if you do use that be sure to bring your own alcohol to soak the aerosol head because they don't have alcohol strong enough in europe (or at least italy).

i would have your clinic help you find out where the closest CF clinic is to where you'll be for the duration of your trip. that way, should a cf related emergency come up, you have the necessary information to get to a clinic that knows CF and could actually help you.
 

jaimers

Super Moderator
i'm currently living in italy and agree with what everyone has said. i use the eflow for all of my medications because my pari doesn't work here. i highly recommend it. if you do use that be sure to bring your own alcohol to soak the aerosol head because they don't have alcohol strong enough in europe (or at least italy).

i would have your clinic help you find out where the closest CF clinic is to where you'll be for the duration of your trip. that way, should a cf related emergency come up, you have the necessary information to get to a clinic that knows CF and could actually help you.
 

jaimers

Super Moderator
i'm currently living in italy and agree with what everyone has said. i use the eflow for all of my medications because my pari doesn't work here. i highly recommend it. if you do use that be sure to bring your own alcohol to soak the aerosol head because they don't have alcohol strong enough in europe (or at least italy).

i would have your clinic help you find out where the closest CF clinic is to where you'll be for the duration of your trip. that way, should a cf related emergency come up, you have the necessary information to get to a clinic that knows CF and could actually help you.
 

jaimers

Super Moderator
i'm currently living in italy and agree with what everyone has said. i use the eflow for all of my medications because my pari doesn't work here. i highly recommend it. if you do use that be sure to bring your own alcohol to soak the aerosol head because they don't have alcohol strong enough in europe (or at least italy).
<br />
<br />i would have your clinic help you find out where the closest CF clinic is to where you'll be for the duration of your trip. that way, should a cf related emergency come up, you have the necessary information to get to a clinic that knows CF and could actually help you.
 
Top