Updated: May 22
Exactly one month after my 54th birthday, I awoke in the ICU at University of Chicago Medical Center with new parts. I would soon find out that I was now upgraded with the following: a synthetic aortic root, Dacron patch, and prosthetic mechanical heart valve. My family and I also learned these new words: aortic dissection.
I spent some time wondering how this could have happened. After all, just two weeks prior, I was given a complete physical that included every heart screening that is commonly done during a routine physical. I was told how healthy I was. My wife and I were looking forward to a happy and healthy early retirement when I turned 55.
Just two days before this, I was at work. Business as usual. I work at a power plant and am always moving around and active. I had just moved some train cars and climbed up the steps into my large dozer when it struck. The first indication that something was wrong was an instant rapid, irregular heartbeat. Just like that, no warning, my heart was beating out of control in my chest. Within seconds, I felt shooting pains radiating from my chest, up my neck, and into my jaw. The next sensation was intense pain in my entire back. I stood up thinking I needed to shake off whatever was happening. It was then that I noticed I had weakness in my legs. After all that, I had to sit back down due to lightheadedness, and that’s when the pain inside my head began. All of this lasted less than 3 minutes. The intensity began to subside, so I was able to radio my boss to come and pick me up. I went back with him to the office, and although the immediate pains had subsided, I still felt unwell, and still had difficulty walking. Of course, I was offered an ambulance and medical assistance. Here is the part that stuns most people: I chose to drive myself home and have my wife drive me to the hospital!
Once we arrived at the local emergency room, I told them my symptoms, and they took me right back to test for a heart attack. After the blood draw for the check of enzymes, they determined that I was not having a heart attack and they sent me back out into the waiting room. I was finally put into a bed for more testing in the emergency care department. It was a long night of continued tests with the doctors coming to no conclusions. At one point, my heart rate was dropping below 50 beats per minute. I still could not stand due to weakness in the legs. The only reason I was not sent home was that my father had had heart issues. I was admitted for observation. This was Thursday, January 9th at 9 PM. I had been at the hospital since approximately 4:00 that evening.
In my observation room, I was told that I most likely had GIRD: acid reflux; and was given an antacid. The next morning, I had a cardiologist on the team who was to order and read the tests. First, I received an ultrasound. The cardiologist came in to report that the ultrasound showed I had a birth defect. He reported that I had a bicuspid valve and seemed satisfied with that diagnosis. My wife asked why I still couldn’t walk and why my heart rate was still not over 50 beats per minute. He replied that a bicuspid valve does not explain those symptoms, and then he left the room. Not long after, the hospitalist entered the room and said they were going to send me home with a heart monitor and a follow up order for a CT scan next week. Fortunately, my wife was not going to be satisfied with that. After the hospitalist continued by saying that they could not recreate the rapid heartbeat I was complaining of, and then asked if I had consumed an energy drink, my wife threw her out of the room. My wife made it clear that we were not leaving until she had answers that made sense. Unfortunately, they then ordered a stress test.
I cannot explain the pain and suffering I endured trying to run on a treadmill when my legs didn’t work. When that failed, they gave me a chemically induced stress test which caused even more pain in my back until I screamed out in pain and demanded they stop. Again, I was taken back to my observation room where I sat for another few hours. Because my wife fought on my behalf, they finally sent me for a CT scan. An alert radiologist caught the dissection and contacted the cardiologist immediately.
I was quickly whisked into the ICU to be prepped for surgery 50 miles away. Once in ICU I was told I would need open heart surgery as soon as possible. There was no time for them to tell me what the diagnosis was, I was still thinking I must have a blockage. Meanwhile, my wife was being told I had an aortic dissection and that there were no statistics on survival because, to quote the doctor, “most patients in his condition show up dead.” Things around me got very serious, very fast. Through a flurry of activity and at least a dozen doctors around, a flight for life helicopter was ordered, the surgical team at University of Chicago was prepping a room for me,
I was being poked and prodded, hooked up to machines, and my wife was orchestrating how to get our two adult children and herself there. And then the news came that the weather was bad enough to ground the helicopter. No ambulance was available, or willing, to take me. My wife was asked if we needed a priest. The doctors got very somber. My wife says she will never forget looking up and seeing a man in the doorway standing next to a gurney. “I’ll take him,” was all we heard. As I was being loaded up, this hero ambulance driver looks at me and says,
“You’re not going to die on my watch buddy.”
We made record time getting to Chicago that night, lights and sirens all the way. As they were wheeling me alone down the corridor to the surgery room, I felt calm and confident that all would be well. I took the opportunity to tell the first doctor I saw, “Please don’t let me die.” He told me that was what they were planning, to save my life. After an 8-hour surgery, with my heart and lungs on bypass, and an additional 3 hours before the blood dried and I could be put back together and sewn up; I had indeed survived. My family was told to prepare for me to be on the ventilator for up to three days, and that due to the extent of my dissection- I could be a vegetable. This is also when my wife learned I DO NOT have a bicuspid valve. The surgeon explained that was the tear they saw.
By, 10AM Saturday morning, January 11th, 2020, they woke me up in the ICU. I was 54 years, one month old. By 11AM, I was off the ventilator. The first week was a struggle for me and for my family, but we fought through and made a little progress each day. Recovery is slow, but steady. At first, I was unable to feed myself, dress myself, or shower myself. I couldn’t navigate stairs. I slept all the time. Slowly that is all fading away. By 12 weeks out, I could walk a mile outside. More slowly than before, and with a few breaks, but I can walk a mile! I have been given an enthusiastic “go out and live your life” report from both my surgeon and cardiologist.
My only rules right now are to not lift over 50 pounds, do not overexert myself, keep my blood pressure low, and attend all follow up scans. I dissected from a mere 2 millimeters above the heart all the way down to my legs. My lower dissection is now considered chronic, and will be medically managed, most likely, for the rest of my life. I am happy to report that after my scan before leaving the hospital, and then the follow up scan after discharge, they are so pleased with my progress that my 3 month scan was cancelled and I am already on the 6 month rotation. I have volunteered to participate in the John RItter Foundation’s Research Program and want to share my story with others. What I want everyone to take away from my experience is this: you know your body; you know when something isn’t right. Do not ignore those signs. You also need to be your own advocate. Had I not listened to my body, had I been sent home, had my wife not believed in me and advocated for me; I would have died.