Steve

Steve had never even heard of Marfan syndrome until one fateful day in April of 1996, when emergency surgery saved his life because an astute intern in a NYC ER recognized the characteristics of Marfan syndrome and made a timely diagnosis.

Read his amazing story below, in his own words!

My Introduction to Marfan Syndrome
by Steve Marpman

April 18, 1996 started out as a rather nice day. It was a Thursday, 8 days after my 25th birthday, the weather was sunny and warm, and life was pretty good. I worked for Transitional Services for New York, Inc., a private mental health agency in Queens, and my coworkers were able to take me out to lunch for my birthday after a couple of very hectic weeks. We went to a local Chinese restaurant where I had a chicken platter and we all had a pretty good time. Afterwards, we returned to the office at about 1:30. I sat at my desk to resume work and that’s the last thing I remember about that day.

I am told that the rest of the day proceeded this way:

A couple of us at the office had a craving for some ice cream, so we went to Baskin & Robbins, got some Cappuccino Blasts' and went back to the office. I worked until about 5:15pm and went home. There I awaited the arrival of my friend Diane with whom I was to have dinner. She came over and boy did she get a surprise.

At about 6:15pm I started to feel light headed which soon escalated to extreme dizziness and disorientation. I also started to feel cold and shaky. I felt a hollow, empty feeling inside which turned to nausea. I started to feel pain deep within my chest and neck. My vision was blurry and I couldn’t remain on my feet. I sat on the staircase in my house and asked Diane to call 911 because I though I was having a heart attack. The hollow feeling in the pit of my stomach grew as did the tightness within my chest. As Diane called, she forgot my address, so I had to go to the phone and provide it. Afterwards, I decided to call my mom and leave a message on her answering machine to say “Hi, mom. It’s me. I’m having a heart attack and I’m on my way to the hospital. I love you.” Click.

The ambulance arrived with paramedics from NYC*EMS. I knew one of them, Gigi,  through my volunteer work as an EMT in the Queens Village Hollis Bellerose Volunteer Ambulance Corps. Gigi could not believe that I was her patient. She ran through her primary assessment of me and quickly determined that I was losing blood internally, fast. She had no idea from where though because there were no obvious areas of distention, swelling or bruising. I was, however, losing all color in my face and was becoming extremely pale. My disorientation persisted and became worse. All Gigi knew was that they had to get fluids into me and get me to an Emergency Room as quickly as possible. They started an I.V. using the largest needle / catheter at their disposal. I didn’t even flinch.

They then carried me out and into the ambulance. Along the way to the hospital I began gagging and was becoming incoherent. By the time we got to Long Island Jewish Medical Center I was choking, gasping for air. The paramedics brought me into the ER and as they transferred me from the stretcher to an ER bed, I started coughing up fluid, about a gallon in total, all from my lungs. I was drowning in my own blood. They knew I was bleeding into my thoracic (chest) cavity but had no idea why.

My lungs collapsed and I lost any semblance of consciousness I may have had. Still, no one had any idea what was going on. A Cardiology intern was called upon to consult. He took one look at me - 6’6”, thin, pectus carinatum, in severe respiratory and cardiac distress- and fortunately came up with “Marfan Syndrome” from his training.

I was sent for a CT Scan, X-Rays and, lo and behold, I had suffered from a rupture of an ascending aortic aneurysm, which was dilated about 10cm, and my aortic heart valve had been stretched out and was completely useless. All my blood was being pumped right out my heart and into my chest. Blood products passed into my lungs, causing them to collapse. The word “shock” didn’t begin to describe my medical state.

The ER staff immediately summoned Dr. L. Michael Graver, Chief of Cardiothoracic Surgery, who actually had his jacket on and was leaving the building to go home. He ordered that both of their Operating Rooms had to be cleared because I was top priority and he needed both OR teams to work on me.

Back at home, I lived with my maternal grandparents, and my mother lived about 5 miles away with my stepfather and 5 year old half sister. My grandparents got home to find lots of medical supply wrappers on the floor of my house. My grandmother just thought I was being a slob. Then my stepfather called to ask what this business of a heart attack was about from the message I left on their machine. The confusion mounted. Then my friend Diane contacted my family. In a panic they rushed to the hospital as quickly as they could. My mother called my father at his job in Manhattan and he too hurried to the hospital.

My family was informed of what I was going through by Dr. Gary Friedman, cardiologist, and by my surgeon. All that could be done was being done to try to save my life. The blunt truth, however, was that I was given no more than a 10% chance of survival. The aortic rupture encompassed my entire ascending aorta, about 6 inches worth, and I was deprived of adequate blood circulation for some time. The collapse of my lungs also cut off my intake of oxygen. My parents were instructed not to expect me to recover and that my death seemed more than likely.

My surgery lasted about 7 long and grueling hours. I was placed on a heart-lung machine, my thoracic cavity was drained, my blood was filtered and put back in me, my heart was repaired and when it was all said and done, I had an ascending aorta grafted with Dacron and a new St. Jude Medical aortic heart valve. But I was still not given much of a chance to survive. No one knew whether I would ever open my eyes again, if I would breathe again on my own or if I would simply pass away into the night.

Plenty of my family showed up at the hospital. Lots of prayer took place.

And now back to what I do remember:

Eighteen hours after surgery I opened my eyes. I saw my dad standing across from me. I felt like I had the worst hangover known to man. I had no idea what the hell was going on. I was intubated, I had about 6 I.V. lines between my wrists, arms, and hands. I had a urinary catheter, a nasopharyngeal tube, a femoral catheter, a Swan-Ganz Catheter in my jugular vein and I was restrained the bed to keep me from pulling it all out in case I freaked out when I woke up. I was heavily medicated and thoroughly confused. But I was still alive.

And I have managed to stay alive ever since. There has been a lot to get used to with Marfan’s Syndrome (heart medications, the clicking of a mechanical heart valve, an adjusted lifestyle, and the inevitability of more surgery) but there is nothing worse than the alternative, the 90% chance of death that was my prognosis back on 18 April 1996. Words can not describe how lucky I feel to still be alive.


Since then I’ve had 5 more surgeries to repair / replace my descending and abdominal aorta, a pseudo-aneurysm repair and 2 hernia repair surgeries. I’ve had endocarditis and a few run-ins with high Coumadin levels.  But I’ve also gotten a Master’s Degree in Social Work, a job in the home care industry making a difference in people’s lives everyday, a beautiful wife who’s there for me and supports me and we have a great home.

Life just keeps moving forward and my ability to keep going is because of all the love and support of my friends and family. I give myself no choice but to look forward. I try to make the most of what I have and who I have in my life. People often tell me that my survival is a gift, or that I’ve been kept alive for a reason - to fulfill some purpose. I have no idea what my purpose is, but I try in some way, everyday, to help enrich the lives of others, or at least brighten someone’s day.