John Stamler's Running the NY City Marathon Six Months After Open Heart Surgery

I'm running to help ensure that people living with a rare disease have a place to go for support.

I'm running to help ensure that people living with a rare disease have a place to go for support. I was born with severe type 1 Von Willebrand's Disease (VWD) but only diagnosed when I was six. VWD is a bleeding disorder that impacts a VWD patient's ability to clot. For the most part it is an inherited blood disorder. If one parent has it, their offspring have a 50% chance of being born with it though many people do not know they have it until surgery.

There is no cure for VWD but I have lived a very eventful life thus far and certainly kept my surgeons and doctors on their toes. My VWD has to be carefully managed during bleeding episodes such as pre and post surgery.

I had the congenital condition, Atrial Septal Defect (a hole between my left and right atrium).

I live and work in London and was due to have sinus surgery in NY City in December 2009; however, my internist spotted Right Bundle Branch Blockage on my EKG during pre clearance for sinus surgery. She then sent me for an Echocardiogram where it was obvious I had the congenital condition, Atrial Septal Defect (a hole between my left and right atrium). Despite the heart condition, I was cleared and had successful sinus surgery in December 2009.

I could not find the hard facts and data on how to deal with my case.

From late December 2009 to February 2010, I went to a number of major hospitals where I saw many great doctors but I could not find the hard facts and data on how to deal with my case – VWD and ASD. All of the doctors I had seen during those three months recommended fixing the hole but via a 30 minute simple and least invasive catheterization procedure.

This procedure is done percutaneously (through the skin). The device is attached to a catheter, which is inserted into a vein in the groin and advanced to the heart and through the defect, guided by X-ray and intracardiac echo. As the device is slowly pushed out of the catheter, it opens up to cover each edge of the defect, sealing it closed. Over time, tissue grows over the implant and it becomes part of the heart.

My situation is more complicated because of my blood disorder and the inability to clot.

This procedure requires patients to be on blood thinners for six months and in my situation is more complicated because of my blood disorder and the inability to clot. Those devices would require me to be on anti platelet medicine (aspirin, plavix etc) for six months to ensure no clots formed around the device which would be very risky for me due to my blood disorder.

0.00004% of the U.S. population (120 people) have both Von Willebrand's Disease and Atrial Septal Defect.

After a lot of research and speaking to various doctors all over the country and London, I figured out in February 2010 why the combination of my conditions was so rare. Assuming the statistics on the internet are correct, 1% of the population has my blood disorder (Von Willebrands Disease - VWD) and 0.004% or 4 out of 100,000 newborns annually has my heart condition Atrial Septal Defect (or 160 babies born in the US) which means only 0.00004% of the U.S. population (120 people) have both Von Willebrand's Disease and Atrial Septal Defect.

In March 2010, I met with the lead interventional cardiologists at two major and well known hospitals for heart conditions separately (these doctor repair the defects with the device). They both recommended I have the procedure done via open surgery route - robotically (robotic open heart surgery) or regular way open heart as opposed to using the device because they both did not feel comfortable with me being on aspirin and plavix.

I chose to have the procedure done at the Cleveland Clinic.

I chose to have the procedure done at the Cleveland Clinic because my surgeon had experience with cases like mine, the recovery time would be dramatically quicker with the robotic option and I was nothing but impressed with every aspect of my visit to the hospital. My procedure, Robotic Heart open heart surgery, is a less invasive alternative to open heart surgery and my surgeon has successfully operated on cases exactly like mine.

This is clearly an invasive procedure but made the most sense to me and for my long term health and state of mind. If need be, my surgery could shift to regular way open heart surgery (he does robotic, regular open heart surgery and heart transplants).

This procedure is still open heart surgery but he would not need to crack me open (sternotomy). Instead, he made a couple of small incisions between the ribs on the right side of my body and operated robotically through those incisions. To be clear, long-term survival after repair of this defect is similar to that of a healthy person of the same age.

During the operation, my surgeon used a specially-designed computer console (Da Vinci) to control surgical instruments on thin robotic arms. Robotically-assisted technology allows surgeons to perform certain types of complex heart surgeries with smaller incisions and precise motion control, offering patients improved outcomes.

The risk of surgery is minimal (mortality < 0.01%, risk of stroke < 1%). The heart is stopped for the surgery (cardiopulmonary bypass and cardioplegia), and a heart-lung machine oxygenates the blood and circulates it throughout the body for approximately 30 to 40 minutes. The defect is then closed with my own pericardium (the membrane that surrounds and protects the heart).

I was back at the gym three weeks post surgery.

Once the procedure is completed, the heart is restarted. When the surgical team was satisfied that the heart was beating strongly again, the heart-lung machine was disconnected. The rib incisions were then closed. The operation took approximately 4 hrs to perform, and required four days in the hospital.

I was back at the gym three weeks post surgery which is dramatically shorter than regular way open heart surgery and now I am on track to run in the NY Marathon less than six months post open heart surgery.

I am grateful for my health, my family and friends, my amazing medical team, my support network, my physical therapist and for BensFriends.org.

I want to reiterate that I am grateful for my health, my family and friends, my amazing medical team, my support network, my physical therapist and for BensFriends.org. After six major operations in seven years culminating with open heart surgery in May 2010, I hope this is my last operation for a while.

I am very excited about running in the New York City Marathon and more importantly about raising money for an amazing cause.