Capillary Leak Syndrome, a Serious Blood Disorder

Advice From the AirMed Doctor on Blood Disorders

An AirMed member recently wrote to us and shared that he has a rare bleeding disorder called Capillary Leak Syndrome. He asked what to do if he has an episode while travelling. Specifically, he asked whether he would do better to seek local hospital care or request a transport home to his treating physician if he should find himself hospitalized while away from home.

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To address the question about remaining for local care vs. a medical transport home to your treating physician. Well, the answer is “That depends!” If you happen to be in the United States/Canada (or countries with similar standards) with access to a community or academic hospital large enough to have the critical care capability, medications and blood products you need for appropriate treatment, I would recommend staying put until you are stabilized. The admitting physician will usually be happy to consult your treating physician at home, so that your doctor can provide insight into your specific case. After this treatment you may be treated and released, either to carry on with your travel or to return home via your originally planned means.

More importantly, LISTEN to your doctor! If he/ she expresses any concerns about your plans, then perhaps you should re-evaluate those plans. You should carry a letter from your physician, describing your medical condition (s) and any prescription medications, including the generic names of prescribed drugs. You should also check with the foreign embassy of each country through you are intending to travel to ensure that none of your medications are specifically banned or limited (http://travel.state.gov/travel).

For ALL prescriptions medications you will travel with, you should have a printed list with YOUR name, the name of the prescribing physician, the medication, dose, and quantity. Your pharmacy may be able to print this for you, or make one at home at a computer – do not use a handwritten list! Each medication should be transported in its’ pharmacy bottle with an accurate label.

TRAVELING WITH BLEEDING DISORDERS

Patients with bleeding disorders (i.e. hemophilia, systemic capillary leak syndrome, vonWillebrand’s disease, etc…) may need to travel with blood products. These may include red blood cells, platelets, or–more typically–plasma products such as Factor VIII, Factor IX, or IVIG (immunoglobulin). Blood products and other medically necessary fluids are an exception to the TSA 3-3-1 rule, but are still subject to inspection.

If your blood product requires temperature control or to remain frozen, you will need to invest in a carry-on means of transporting your product. Your physician and the blood bank he/she utilizes should be able to help with that.

Obviously, even if you travel to a remote area with all of the required medications and blood products you might need to start therapy should you have an episode while away, you cannot administer them yourself! Prior to your trip, you may research your intended destination at www.travel.state.gov for information regarding recommended hospitals and clinics.

As an AirMed member, you also have the advantage of just calling us! We have the State Department information as well as additional resources to best advise you on facilities and points of contact should you need help while away from home, both foreign and domestic.

Knowing all of this, patients may travel with a better sense of security should they have a crisis while away from home.

For more information on how to save your life, visit airmed.com. 


--Dr. Beth Phillips, MD, FACEP, FAWM, is AirMed's Director of Medical Operations and a regular contributor to this blog



Resources:

http://travel.state.gov 
http://www.state.gov/s/cpr/rls/dpl/32122.htm
http://travel.state.gov/travel/tips/tips_1232.html
http://travel.state.gov/travel/tips/tips_1232.html#medications
http://www.cdc.gov
http://www.miusa.org/ncde/tipsheets/medications
http://www.tsa.gov/traveler-information/medically-necessary-liquids
http://www.hemaware.org/story/traveling-medication