When you live with chronic illness, and particularly conditions that are rare, rarely heard of, or largely misunderstood, it can be challenging to find the right team of doctors. Often times the top-rated specialists require traveling out of state to receive the best care possible. This is certainly the case for me. 

My name is Jill, I am 29 years old, and I live with Ehlers Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), Chiari Malformation, gastroparesis and a number of other related conditions. 

Due to EDS, I experience countless joint dislocations on a daily basis. And as a result, I have undergone more than 30 surgeries in an attempt to stabilize my joints, restore/improve mobility, and decrease pain. But because EDS is incredibly complicated, and requires an expertise that is not readily available, I travel from Philadelphia to Boston to receive care from a phenomenal team of specialists at Boston Children’s Hospital. This also means that when it is determined that surgery is necessary, I also travel for surgery. And with 10 years of experience and more than 30 surgeries, I have essentially mastered the process!

Traveling out of state for surgery may seem overwhelming, especially given surgery alone is enough of a reason to be anxious, but with some planning, it is manageable. 

Here are my 5 Tips for Traveling for Surgery

1. Plan for the entire peri-operative period before surgery (this means before, during, and after surgery).

Planning is essential, but it does not simply involve the just the surgery itself. You really need to plan ahead to ensure for a smooth process, including post-operative appointment timelines. This will require asking your surgeon a number of questions beforehand so it is best to start planning as soon as you know that surgery is necessary.

Ask yourself the following questions:

Where is surgery?

For me, surgery is in Boston at Boston Children’s Hospital.

Will I be flying or driving?

I personally find that driving, if possible, is much easier and allows for more control. A GPS will tell you that the drive from the Philadelphia-area to Boston is approximately 5 hours and 30 minutes, without traffic. However, let’s be honest, there is ALWAYS traffic and that time does not factor in stops along the way. Realistically, the trip can take anywhere from 7-9 hours when you consider bathroom/food/fuel stops and traffic. While I have done the trip in one day for routine trips to Boston, with surgery I always stop in Connecticut to stay with family on the way to Boston and when we head back home. Driving allows me to cut the trip in half, which is much more manageable, particularly after surgery when there is significant pain and fatigue involved.

Do I have family or close friends nearby?

I am very fortunate to have family and friends in the Boston area. This is great for support. However, due to my mom’s work and the commute in and out of Boston during heavy traffic hours, it makes more sense for us to get a hotel as close to the hospital as possible. However, in a pinch, we do have the luxury of being able to stay with family.

What are the nearest hotels? Do they offer hospital/patient rates? Do they offer shuttles to and from the hotel/hospital? Is there onsite parking? If so, how often do they run?

If you are planning on staying in a hotel, check to see if there are any hotels within walking distance from the hospital or surgery center. It may be helpful to write down the top 3-5 hotel options and look at them side by side, while answering the different questions.

We stay at a hotel that is walking distance to the hospital. It also has an attached parking garage with a fixed daily rate. The proximity to the hospital and onsite parking garage makes it incredibly easy for my mom to go back and forth (she works during the day) without having to pay to park the car in two locations. They also offer a patient discounted rate and there is an abundance of food options for my mom to choose from while I am in the hospital.

Over the years, we have tried several other hotels in the area. Many of them offered daily parking, shuttle services, and patient rates. However, because my mom works while I am in the hospital and has a number of different conference calls/meetings, having the ability to leave the hospital whenever necessary is incredibly helping. The parking and close proximity cannot be beat.

Note: Some hospitals have housing available for long-term stays. Check with your hospital to see if you qualify for one of those options (ie. The Ronald McDonald House).

When is the first post-op visit? Can the first post-op be done with your local primary care physician?

Not only is every surgery different, but many surgeons have their own post-operative protocols.

Typically the timeframe for an outpatient follow-up after surgery is 2 weeks. Because of the travel required, and the fact that the 2 week post-op visit is typically a quick incision check, my team allows me to have my first follow-up appointment with my local primary care physician.

If you will not be staying in the area for 2 weeks, ask your surgeon if your first visit can be done locally. It may not make sense for all surgeries, but I feel it is worth asking to cut down on travel.

I usually travel back to Boston for a 6-8 week follow-up appointment. Anything that needs to be done prior to 6 weeks, such as labs or imaging, I get done at home, and I mail/email results as necessary.  I am fortunate to have excellent communication with my Boston team. Any questions or concerns can usually be answered over the phone or via email. If something warrants additional follow-up, we address it on a case-by-case basis.

Is this an outpatient surgery or will you be admitted?

If it is an outpatient surgery, how long does your surgeon want you to remain in the area before heading home?

If you are being admitted (hospitalized) following surgery, what is the expected number of days?

I am admitted for every surgery (even procedures that are done almost entirely outpatient). Of course the particular surgery changes the length of stay, but generally I spend anywhere from 2 to 7 days in the hospital. As a result, we always plan extra days in the hotel (for my mom), knowing that we can always check out early if recovery goes smoothly (which it usually never does). It’s better to book too many days than not enough as hotels near major hospitals tend to book up pretty quickly. 

2. Pack separate bags: 1 for the hospital and 1 for travel days/hotel 

This may be more difficult if you are flying, but if possible, I recommend packing two different bags. One bag should be for travel days and any hotel overnights (the night before surgery and/or after discharge), and the other bag should be devoted entirely to what you will need in the hospital. 

Take into consideration the type of surgery you are having and how that may impact what you are able to comfortably wear following surgery. For example, hip or knee surgery may result in swelling and require wearing shorts or loose fitted pants. You may also be placed in a splint, cast, or brace, which can impact what you are able to wear. Shoulder surgery often makes putting a shirt with sleeves on very difficult. Tank tops, tube tops, or shirts that you can step into may be more convenient. Try to think about how you may be challenged with clothing after surgery and pack your hospital bag accordingly.

When packing, consider the amount of space you will need AFTER surgery and make sure you have enough room in the car to accommodate any post-operative needs.

For example, it is common that after knee surgery, you will need to sit with your knee in extension (straight). This likely means sitting across the backseat of a car. If you pack the car too much on the front end of the journey, you may not have enough room to position yourself comfortably on the ride home when you are likely in more pain with more limitations.

Also, some surgeries require durable medical equipment. More often than not, this can be arranged to be delivered to your house. However, I have had a number of surgeries at Boston Children’s where the wheelchair and/or shower chair/commode were delivered to the hospital. That meant that we had to find room in the car for these items and they take up a lot of room. Again, I recommend asking your surgeon ahead of time what needs you may have after surgery. 

3. Obtain any physician orders upon discharge.

Will this surgery require imaging (x-rays, MRIs, etc.)?

Will you need lab work?

Is there a physical therapy protocol?

I leave the hospital with my PT script and any other orders that I may need. This allows me to schedule everything I will need completed without having to wait for someone to email or fax the orders to the facility or provider.

As I mentioned above, I complete my first post-op appointment at 2 weeks with my local primary care physician.

(Note: If you are allowed to do this as well, schedule the appointment as soon as you have a surgery date to ensure you can be seen during the appropriate time frame).  

4. Fill any controlled-substance prescriptions BEFORE you leave the hospital or the state. 

Controlled substances such as narcotics, which are commonly prescribed after surgery, cannot be filled over state lines. Make sure you fill these prescriptions at the hospital or a nearby pharmacy prior to heading home.

5. Bring extra buckets, snacks, pillows, ice packs, etc. for the journey home. 

If you are driving, I highly recommend bringing a bucket for the car ride. If you are flying, which admittedly I do not have experience with after surgery, an emesis bag is low-profile option that can fit inside of a carry-on bag.

Personally, I find that I am extremely nauseous during my first car ride after surgery, and I have needed a bucket a number of times. I also take pillows from the hospital to provide extra comfort and padding. This is also helpful when you need to elevate your leg to reduce swelling and pain.

We also stock up on ginger ale, graham crackers, saltines, and ice. Some hospitals/surgeons will provide you with an ice machine. If so, refill the machine with fresh ice prior to leaving the hospital. Otherwise, ask for disposable ice and heat packs.

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Ask a lot of questions as early in the process as possible. The more you know, the more you can prepare and plan accordingly. 

It is absolutely manageable if you plan ahead and ask the right questions.

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If you are interested in following Jill’s journey with EDS and chronic illness, head over to her blog: Just Sparkle: Living with Ehlers Danlos Syndrome and subscribe!

Jill is a former competitive gymnast living with Ehlers Danlos Syndrome (EDS) and more than 8 related chronic illnesses. She is a licensed Registered Nurse (though not working at this time), and shares her journey with EDS and associated conditions on her blog Just Sparkle: Living with Ehlers Danlos Syndrome. Additionally, Jill is a diehard Boston sports fan, with her biggest passion being the Boston Bruins. Despite the progressive and debilitating nature of her conditions, she continues to LIVE her life and seek new opportunities and passions.