Susan's Transplant Video is on You Tube

Susan Burroughs, the Founder of Cystic Fibrosis-Reaching Out Foundation has now put her transplant video on You Tube. To see the video please go to and search "Susan Burroughs".

Wednesday, September 10, 2008

Traveling With Cystic Fibrosis

In-Depth Education
Thomas J. Newton, RCP, RRT For someone with a chronic lung disease like cystic fibrosis (CF), traveling can be fun and exciting. Unfortunately, it might also include the wrong kind of excitement. Here are some examples of excitement that you could do without:
Running out of your medication
Not having a place to plug in your compressor
Getting short of breath at higher elevations or in an airplane
Not having any oxygen on the plane because you forgot to call the airlines ahead of time to arrange for it
Not knowing where to go if you have an emergency

Preparation Is the KeyWhether you travel by car, boat, train, or plane, being prepared is the key. Preparation is important not only for long trips lasting several days or weeks but also for shorter excursions lasting only one day.Before embarking on a trip, be sure to talk with your healthcare provider and cystic fibrosis healthcare team. They can help you plan your medical care during your trip.If you are planning to travel and are unsure of your lung function, check with your healthcare provider. This is especially important if you plan to fly or travel to higher elevations, such as the mountains. People with altered or impaired lung function may have more symptoms at higher elevations, especially if they already use oxygen or have poor exercise tolerance.Normal Lung Function and Normal Exercise ToleranceIf you have normal lung function and normal exercise tolerance:
Take more than enough medications to get you through your trip.
Ask your doctor if you can substitute metered-dose inhalers (MDIs) with spacers for some of the inhaled medications that you normally take using a nebulizer. Metered-dose inhalers may be more practical, since you may not always have access to an electrical outlet for your nebulizer while you are traveling. Common medicines that come in inhaler form are albuterol (Proventil or Ventolin), cromolyn (Intal), ipratropium (Atrovent), and inhaled steroids.
Ask your healthcare provider if you can be off Pulmozyme (rhDNase) and/or TOBI (tobramycin solution for inhalation) for the duration of your trip, or at least for parts of it.
Ask your healthcare provider about trying a PEP (positive expiratory pressure) mask or a Flutter or Acapella mucus clearance device to clear your airways. These devices are easy to learn and are very portable. They can also be used in a car, plane, train, or boat without the assistance of another person.
Make sure that battery-powered machines are right for you. Battery-powered machines work well but are a bit slower and are more expensive than standard electrical devices. Also, not all insurance policies pay for them. Important: If you are going to purchase a battery-powered model, check how long the battery lasts on a full charge. This will give you an idea of how many treatments you can get out of a charged battery. This is important if you are taking multiple medications, such as Pulmozyme and TOBI.
Impaired Lung Function and/or Poor Exercise ToleranceIf you have impaired (moderate to severe) lung function and/or poor exercise tolerance:
Follow the instructions noted above.
Let your healthcare provider know about your trip at least one month in advance.
Find out if you will need oxygen while traveling by airplane or when visiting higher elevations. Your healthcare provider may want to test your oxygen needs before you take the trip.
Check with your oxygen supplier to help coordinate oxygen delivery in connecting cities and at your final destination.
Bring extra medication with you. Trips can be delayed because of bad weather or missed connecting flights.
Your Medical History Checklist Keep a copy of your medical history with you in case of any unplanned trips to an emergency room or hospital. Your medical history should include:
Your diagnosis -- cystic fibrosis, as well as any other medical problems you may have, such as diabetes or asthma
All current medications, including TOBI (even if you are off cycle) and oxygen (liters/minute)
Last chest x-ray report
Information about your central intravenous line, portacath, or Broviac (if you have one)
Information about your G-tube or button (if you have one)
Last sputum culture
Last pulmonary function test
Information indicating whether you have ever coughed up blood and the last time you did
Information indicating whether you have ever had a pneumothorax
The names and phone numbers of all your healthcare providers
Ask your CF team to provide you with the addresses and telephone numbers of CF centers along the way or close to where you will be staying. This information may come in handy in the event you need to consult a CF specialist while you are on your trip.Bon Voyage! Letting your CF team know about your trip well in advance can make traveling easier. That will give them enough time to help you prepare for your trip. And it will give you more time to have fun while you are away.This article was written by Thomas J. Newton, RCP, RRT, a clinical specialist in pediatric respiratory care and a CF team member at a hospital for children. It was reviewed in 2007 by James W. Wallace, MD.ReferencesBreathin’ Easy: A Guide for Travelers With Pulmonary Disabilities. Available at: Accessed January 29, 2004. California Thoracic Society and the American Lung Association of California. Safe Flying For People With Lung Disease. 2002. Available at: Accessed January 29, 2004.
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