I am a 40 year old lawyer living in Edmonton, Alberta Canada. I was born with a heart defect known as ventricular septal defect (VSD) as well as a defective bicuspid aortic valve. Throughout my life these conditions were monitored by a cardiologist and I was told that basically they were stable and surgical intervention was not required. I had always led a full active life. For many years I had been a recreational long distance runner and basketball player.
Inexplicably about five years ago I began to develop respiratory symptoms which would go not away. I had constant colds and sore throat as well as periodic shortness of breath. After exhaustive testing these symptoms were diagnosed as asthma due to allergy. My running suffered and I experienced a blackout during the last mile of an eleven mile leg in a relay race through the Rocky Mountains.
One day I awoke with a racing heartbeat. This was unusual so I checked myself into the emergency ward. After four hours of waiting, the heart beat corrected itself so I went home but was advised to consult my cardiologist. I had also been experiencing strange pains in the right side of chest which felt like a gastric burning. These pains became so severe that I couldn't sit in certain positions, such as in an airplane or dentist's chair. As luck would have it, my old cardiologist had retired and I was referred to someone new. This new cardiologist, because he didn't know me, decided to have me undergo complete testing. Well, as each test came back the news got worse. The last test was a CT scan. I was told my ascending aorta was dissecting severely and I had less than a week to live. Imagine my surprise.
Over the course of years the VSD had acted as a jet and turned my defective aortic valve to mush. The result was a gigantic aortic aneurysm the size of a cantaloup.
On May 17, 1994, I underwent a seven hour surgery at the University of Alberta Hospital. Dr. John Mullen and his team patched my VSD, replaced the destroyed valve with the St. Jude graphite mechanical valve and replaced the torn aorta with a dacron tube. While in there Dr. Mullen discovered a fourth defect, namely a undeveloped right coronary artery. A vein was harvested from my leg for a bypass to correct that.
I had been given a fifty per cent chance of surviving the surgery. Like others have stated in their testimonials, I believe my superior physical conditioning, although it had contributed to the deterioration of the aorta, allowed me to survive the massive trauma of the surgery. After a pleasant summer of recovery, I was back at work in two months and resumed all athletic activity shortly thereafter. Today I am running and playing basketball with more speed and vigour.
I take a drug to regulate my heart rate and coumadin to prevent thrombosis. Like always I will be sensitive to infection and take antibiotic precautions when necessary. I have always been prone to nosebleeds so the coumadin is a nuisance and the other drug induces fatigue in the evenings and momentary lightheadedness at times. But what the heck, I'm alive! So what if the valve sounds like a cheap Timex watch and clicks so loud at night, it keeps me up!
What I've learned is you have to take this death stuff pretty seriously. You can't fool around. If you're having symptoms of any sort, get them checked out, especially if you have a history like mine.
I'm told that while both VSD surgery and aortic valve replacement are common, it is relatively rare for someone to have the particular group of defects which I had. I would be interested in hearing from anyone who has undergone or is about to undergo surgery for either a dissection and/or VSD. I am trying to understand what happened to me and I would also be pleased to offer encouragement to anyone facing a similar dilemma. I gather that VSD surgery is usually performed on children and I would be happy to talk to any parents who would like information from someone who has gone through it. If someone had been able to tell me what open heart surgery would be like, I would have felt more secure. It is no picnic and was the worst and best experience of my life and since I'm a survivor of it, I'd like to help anyone I can.
Update 9 Sep 96
I would be interested in hearing from anyone who has had experience on the St. Jude heart valve since I haven't been able to find a lot of scientific literature about it. Like probably all other recipients of the St. Jude implant, I received a written lifetime guantee from the manufacturer in the mail! They also sent me a wonderful promotional package which they send to doctors, containing all of the specs etc., but there were no statements from satisfied customers or statisstics showing mortality rates. My surgeon did advise me that, aside from the medication, I should consider myself "normal" and that I now have a normal life expectancy.