10 March 2004
My story really begins about 14 years ago. I was 13 years old and my father's cardiologist decided his sons should both be checked for the signs of Marfan's Syndrome. Lucky me, I got my father's great genes!!
My father had his ascending aorta and aortic valve replaced in 1982 by Dr. Nicholas Kouchoukos. (Probably one of the best thoracic surgeons in the world. I would highly recommend him to anyone!!) I was only 6 at the time and completely unaware of what was happening. Apparently, he developed an infection after surgery and had to have another replacement a few months later. Then again, in 1986, my father had his aortic valve replaced a third time. Three cases of open heart surgery and he lived to tell about it. From what I understand, he had the aortic valve and a piece of Dacron graft sewn to his original tissue. He had to take a number of medications after his surgery including Coumadin. He died unexpectedly in 1992. I was only 14 and never got to really understand what he went through until this past year. I really wish I was older when he experienced all that hardship.
Back to me... I was diagnosed with a similar condition to his when I was 13. Not a true marfan's patient, but the worst of symptoms, the dilated ascending aorta. I was put on a beta-blocker after diagnosis and told to watch my activities. (no lifting heavy weights) Every 6 months, a CT scan and Echo to observe the size of my aorta.
October of 2003... the news came...My ascending aorta had reached 4.7 cm in size. My cardiologist recommended I consult a surgeon to review my case. I found myself in St. Louis, MO (I should mention I am from Pittsburgh, PA) on December 1, 2003 in front of the same surgeon who operated on my father 20 years earlier, Dr. Kouchoukos. He gave me the bitter sweet news, "Your aneurysm is not getting smaller and the risk of surgery is lower than the risk of walking around with this ticking time bomb in your chest." I decided the time had come, I scheduled to have the surgery on Feb. 3, 2004. He felt, because it was being done as an "elective" and not "emergency" surgery that he would be able to keep my aortic valve. This meant no Coumadin. That sounded great to me. He made me feel that after surgery, my problem would be gone, he was right.
For the next 2 months, I awaited my trip to St. Louis. Anxiety and panic set in strong. All I can say is I am very thankful for my family, friends, therapist, and Xanax. The anxiety was overwhelming. I thought about the aorta rupturing before I got to the operating table and drove myself crazy with false pain. Two trips to the emergency room proved I was suffering from anxiety about my upcoming surgery. Although they were false alarms, anyone with our condition must consider all pains as real and get them checked. I prefer CT scans, but I am sure health insurance companies do not.
The day finally came. Around 4 hours of surgery to replace my ascending aorta with a Dacron graft, I was done. No new valve. (The best news I heard) 20 hours in intensive care, 4 days in the hospital, and I was on my way. Not bad for open heart surgery. They say my youth and physical condition (I am a regular swimmer and runner) helped in my quick recovery. I have been told after recovery I can return to normal life. I can run, swim, bike, and all that good stuff. No power lifting, but I never did anyway. I must take the beta-blocker (atenolol) and an aspirin everyday (325 mg) Not bad.
I am writing this 5 weeks to the day after my surgery. I feel good, except for the obvious sternum pain. I get annoyed sometimes because my heart feels like it is beating out of my chest and my sternum hurts. I guess that is to be expected. Cardiac rehab has really helped me along in terms of getting back to my normal life. I still fear developing other problems down the road, but realize I must be positive.
My only concern is to have my sternum stop hurting so I can sleep on my side and stomach. I also do not like the scar on my chest. Call it vanity. Remember, I am only 27. Mederma scar treatment will become a regular part of my life in a few weeks.
I really enjoy all the stories I have read on this page and am amazed at the success of many people. I feel I do not belong because my condition was not a surprise and I never experienced a dissection. Still, we are all common in the same problem and therefore I can relate to many of you. Thank you for these personal accounts, they have helped me get through this whole ordeal.