Travel Tips for People With aHUS

Atypical hemolytic uremic syndrome (aHUS) is a multi-organ disease that primarily affects kidney function. Therefore, travel takes extra planning and preparation. Here are some tips for a safe trip if you have aHUS.

What are things to consider before traveling?

Plan ahead to avoid rushing or leaving unprepared. In case you need daily medications, such as for hypertension, make sure you have enough on hand. If necessary, your physician can arrange for a prescription to be filled at a pharmacy near your destination.

If you’re going on an extended trip, consider having a blood test to check the health of your kidneys, and your platelet and red blood cell counts. In addition to kidney symptoms, aHUS is characterized by thrombocytopenia (low platelet blood count) and anemia.

If you’re planning to fly but have trouble walking due to fatigue or shortness of breath, check with your travel agency and the airline to make sure you have enough time to get to your gate. If you need a wheelchair or other special accommodations, alert the airline in advance.

You should also consider discussing with your physician where you are going and what activities you are planning to undertake on your trip, to be certain that you have selected locations and activities that are appropriate for you.

Can I travel if I need dialysis?

About 68% of aHUS patients need dialysis at some point. Many dialysis centers can arrange treatments away from home. You should start planning at least six to eight weeks in advance. If possible, be flexible about your trip dates since space in dialysis centers may be limited. Check with the center as soon as you arrive at your destination to confirm your appointment.

How can I find a dialysis center?

If you plan to visit friends or family out of town, they may be able to help you find a dialysis center should you need one. You may also inquire at your home center. In addition, you can find information online on centers domestically and internationally at The Nephron Information Center, Dialysis Finder, or Global Dialysis.

What information will the center need?

In addition to the dates you need dialysis treatment and your contact information, most dialysis centers require:

• Your medical history and recent physical exam reports
• Recent lab test results, EKG, and chest X-ray
• Your dialysis prescription
• The dialysis access type
• Notification of special needs or requirements
• Information about your general health
• Your insurance information
• Notification of where you will be staying in the area
• A list of medications you take during treatment and at home

How can I be sure of the quality of care?

You may wish to ask the following questions when making your dialysis arrangements:

• Does the center reuse dialyzers or bloodlines?
• What is the average length of dialysis treatments?
• Can the center provide the treatment your doctor has prescribed?
• What types of dialyzers does the center use? Could the center use the same type as your home center?
• Does the center routinely provide lidocaine to numb the area where the needles are inserted?
• May patients eat or drink during dialysis?
• Are visitors allowed?
• Is public transportation available to get to the center?
• How many patients are assigned to each nurse or patient care technician?
• Can the center provide all the medications you get at your home center during dialysis?

Is it possible to travel if I am on a kidney transplant waiting list?

In most cases, you can travel if you’re on a waiting list for a kidney transplant. Be sure to inform your transplant coordinator of your travel plans. If you want to remain active on the list during your travels, provide contact information so that you can be notified in the event a kidney becomes available.

Last updated: July 6, 2020

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aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.