Traveling with Alport Syndrome

Alport syndrome is a serious genetic disorder caused by mutations in the genes that provide instructions to build a structural protein called type 4 collagen. These mutations cause type 4 collagen to be faulty or not to be made at all, leading to kidney disease, eye abnormalities, and hearing loss.

All Alport syndrome patients develop kidney symptoms and most male patients develop kidney failure. In the early stages of the disease, kidney problems may be managed by diet and medical treatment, but many patients will require dialysis to support kidney function at disease later stages.

As a a lifelong disease, Alport syndrome can affect patients’ quality of life in many ways, and they may need to make adjustments in their everyday life. For example, traveling can be a challenge, and there are a number of things that patients with Alport syndrome and their families may need to consider before taking a trip.

Traveling and diet

It is recommended that Alport syndrome patients maintain a heart-healthy diet to reduce the strain on their kidneys. This can be tough to do while traveling, but many restaurants now offer heart-healthy menu options. Patients should also pack healthy snacks to avoid having to choose among unhealthy options.

Traveling and dialysis

Dialysis makes travel very difficult for patients. Depending on whether they are receiving hemodialysis or peritoneal dialysis, different options may be available.

For hemodialysis, patients will have to plan travel around being able to reach clinics that offer dialysis every two to three days and that can work with the patient’s health insurance.

Most dialysis clinics have a staff member experienced in scheduling transient dialysis with other clinics. It is important to note that clinics near popular tourist destinations may be more difficult to schedule. Patients and their families may have to plan their travel well in advance and be flexible about travel dates.

For peritoneal dialysis, many patients can now travel with a portable form of the dialysis machine. However, this type of dialysis takes about 12 hours and must be performed every day, which can impact travel plans. Many peritoneal dialysis patients choose to use dialysis centers while traveling.

Even if traveling with a dialysis machine, it’s a good idea to know where the nearest clinics are along the route and at the destination in case of emergency. Patients should also carry their medical information with them so they can receive treatment if necessary.

For kidney transplant patients, travel can be more complex, even if they are not still on dialysis following the transplant. Patients should discuss these issues with their healthcare professionals, and determine what medications they should travel with, and what they should do and where they should go if emergency treatment becomes necessary.

Emergency travel

Most clinics will make an effort to accommodate patients dealing with emergencies while traveling. However, clinics require the patient’s medical information to treat and appropriately charge health insurance, so it is important to carry:

• Medical history and recent physical exam reports;
• Recent laboratory test results;
• Recent EKG (electrocardiogram, a scan which measures the electric signals of the heart);
• Recent chest X-ray;
• Dialysis prescription(s) and three to five recent treatment records;
• Dialysis access type;
• Information about health insurance;
• A list of current medications;
• Information about the area where the patient will be staying.

Other information

Patients should carry enough of their medications for the entire trip, and also carry written prescriptions. It is a good idea to hand-carry medical information and prescriptions instead of packing them in checked luggage, which might be misplaced. It is also a good idea to have a scanned or emailed copy of all medical information in case the paper copies are misplaced during travel.

Home dialysis patients should make sure they have enough supplies for the trip. For longer trips, it may be necessary to deliver supplies to the destination; it is important to arrange shipment in advance so that supplies are delivered on time.

Patients should also inform airlines and travel agents of any special needs when booking travel to ensure that meals and accessibility are adequate.