Fall 2010 - National Marfan Foundation

8
Connective Issues
Many people in the Marfan syndrome and related disorders
community travel to experienced centers to have their aortic
surgery. Regardless of where you are traveling—to the East
Coast, the West Coast or somewhere in between—it is important
to know what to expect and have a plan before you go.
Here are some guidelines from NMF Professional Advisory
Board member Duke Cameron, MD, Professor of Surgery,
Johns Hopkins Hospital. These are based on Dr. Cameron’s
long-time experience at Johns Hopkins in Baltimore. Check
with your surgeon for the specific process where you are having
surgery.
• Plan to arrive a day or two before your surgery for your
pre-op appointment and to re-meet your surgeon.
• Usually, you are asked to come to the hospital for the
surgery on the day of the operation.
• For children, the surgery is usually scheduled early in the
morning and lasts about 4–5 hours.
• After the surgery, the patient is taken to intensive care;
if all goes well, the stay in ICU is for a day or two.
• If everything goes well, you can expect a hospital stay of
5–7 days.
• How long you stay in the area before traveling home
depends on several things, including mode of transportation
(flying or driving) and how well the patient feels. In
general, plan to say in the area for at least 3–4 days—
even a week—after being discharged from the hospital.
Fall 2010
Are you Travelingfor Surgery?
Insights fromSurgeon Duke Cameron, MD
Dr. DukeCameron
Heather HolmesFloyd and her son Henry
Before you travel to the hospital where the surgery will take
place, have a plan in place for when you return home. Specifically,
you need to make sure you know which doctor to follow
up with and who will handle any medical issues, if they arise.
Make sure that your doctor at home knows how to reach the
surgeon, if necessary. After the surgery is not the time to
scramble!
Here are additional tips from Heather Holmes Floyd, of
Newton, MA, whose son Henry had aortic surgery at Johns
Hopkins in November 2007, when he was just 13 years old.
• We booked the hotel for the entire duration of the time
we were in Baltimore, though there were nights that no
one stayed there because we were in the hospital. It was
nice to have the hotel as a home base to keep our stuff, take
showers, etc.
• We planned to have loved ones there to help support us,
to provide relief for me so I could go to the hotel, shower
and take a nap, or just take a break. Only plan to have
people travel to see you who will truly support you.
• Ask for what you need! It was difficult for us to travel to
Baltimore a week prior for the pre-op so we asked if we
could do the pre-op the day before the surgery and they
approved this request.
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