Saturday night, January the 7 2002 is a night I will never forget. I was having a ball at the dance floor at a nightclub in Miami when I suddenly, out of the blue, was struck by an incredible pain in my chest. It felt like I was being hit by a baseball bat, then as my heart was grabbed and twisted around. Then next second, I could feel my aorta being ripped apart. I knew I was toast. I stumbeld off the dance floor, had a friend help me sit down to catch my breath. The pain was absoluteluy incredible, I had never felt anything like it, I could never have imagined pain like this... I quickly ruled out a heart attack, what I felt did not fit the description of a heart attack, but I knew, and feared, an aortic dissection. What went through my mind and what happened during the next few hours is a long story that I remember all too well. But I will make it short.
I have a medical background, I went to med school for three years and ended up in a graduate program and earned a Ph.D. in Medicine. I also happen to work in the cardiovascular field so I knew something bad was going on.
But, denial is a strong thing. After a few minutes I decided that my pain was probably due to what I had for dinner earlier that night, as I was still alive. I decided that, as I was still 'ok' I should fly back to Boston the next day. I did. I was a mess when I got home. The chest and back pain was horrible. But it wasn't until having passed out for a few hours on the bed, with my heart throbbing, almost jumping out of my chest, when I looked myself in the mirror and saw a sweaty ghost with neck veins like exploding carrots that I realized and admitted to myself, that I had to get myself to the hospital. Or I would die.
Twenty five hours after it all started, having flown from Miami, via Memphis, to Boston, I decided to walk down the street and admit myself to the ER at Boston Medical Center.
I dragged myself in, to the ER, at around 2.30 am, Monday morning. And waited. One would think that there would be someone around at the ER, but there was no-one in sight. There was a sign above the nurse's check-in counter to sign your name and sit down and wait. So I did. Nothing happened for at least an hour. I was in terrible condition. I could hardly stay awake. I managed to get up and walked around and found some security personnel, and asked for what to do. Just sit down and wait he said. Back in the chair in the waiting area I had a hard time coping with my situation. It was painful and I was so thirsty, but there was no water around. The faucet in the restroom was turned off. What a nightmare.
In retrospect I realize I should have just passed out, or called 911 from the ER, maybe I would have been taken care of faster. Who knows.
Another hour went by, no personnel in sight. At bout 4.40 a nurse finally showed up and after a while it was my turn. There were other people in the waiting room... I told my story and let her know I thought I had an aneurysm that burst. She did not seem to believe me, but after hearing my heart beating like crazy, murmuring and finding my blood pressure off, she would send me around the corner to get to see a doctor. But, first I had to register again.
I walked around the corner, to yet another empty booth. Now I was ready to give up. No one around a second time. However, I figured that the morning shift would get on at around 5 am so I decided I could wait a few more minutes... Just before five, two booths opened up and I got to register. I was sent around the corner to yet another waiting area...
How long I had to wait here, I do not know. It was not long though, not more than a few minutes before I got called in to an exam room. The doctor came in and I told him my story. After a quick examination, he called for another doctor.
Now things started to happen. The did a quick Echo (ultrasound), told me I had a leaking valve, which explained the murmur. But there might be more so the called for another Echo specialist. Now I was getting some attention. Doctors, nurses, well everybody begun realizing something was up here. After the second echo I was told I had an aortic aneurysm and that it looked pretty bad. Well I knew that.
Now I was transported by ambulance from the east pavillion to the west. A third echo was done, now it was around 7.30 am on Monday morning. I was diagnosed with a dissecting aortic aneurysm and was told surgery was the only way out. Thank God. Finally I felt I was taken care of. I was calling my parents (back nome in Sweden) and my friends to let them know what was up. Now I felt I could let them take care of me, now when they had it all figured out.
At 12.30 I was put on the operating table. The aneurysm was 5.4cm (a little over 2 in), and I needed a new aortic valve and a graft to replace the diseased aorta. After about nine hours open heart surgery, with me in an ice bath, I was brought back to life by the most fantastic cardio-thoracic surgeon, Dr. Richard J Shemin to whom I owe my life. I am to him and his team forever grateful.
The next few weeks, were not only the worst in my life, they were also the best. Despite all the pain, fear and all those tears, I felt love. Love to life. Love to my life partner, my parents, my family and friends.
Recovery was hell. Getting out of bed to go to the bathroom felt like I was climbing Mt. Everest. It took me weeks to be able to make myself breakfast. To go down the four sets of stairs to the street took forewer. Not to mention to get back up.
I lost over 20 pounds in seven days at SICU and CCU. 6ft tall and less than 160 pounds, there was nothing left of me. I was devastated, but I was also decisive, I was going to get back, back to some kind of good physical form again. After six weeks I begun the cardiovascular rehab program at BMC. This is a great program. I would recommend everyone who goes through any kind of heart surgery to begin a rehab program. This will make a difference, and make your life. The beginning is not easy, I did seven minutes on the treadmill, a few hundred yards, and thought I was going to die. But I did not. It made me come back. With time I did better, and I got back to work after three months.
The first year went by. I never thought I would make it. I did pretty ok. My health was still improving, but in February of this year (2003) I had a follow up CT that showed there was a problem. I had another dissection. My ascending aorta (upgoing part) is dissecting from where the graft is attached to my aorta and it goes up through the innominate artery (the right side of the first branch that supply your right side of the head). The dissection is about 3-4 cm (1.1/4-1.1/2 in) long. And right now surgery is not an option. Too risky.
Am I concerned? Am I worried? Yes I am. Very much so. My dissection can expand and rupture. I might die on the spot, but worse would be I had a stroke and would be alive but really not be able to do anything.
But much has happened during the last 23 months, and a lot since that day in February. I have came to re-evaluate life. Again. All this has changed my life. It is my life. The only life I get. And, I am very grateful for it all. I am grateful for all the support people have shown me. And still show me. Thank you.
But I try not to think on it. Not to worry. That will not help. I am now in care of a great cardiologist, Dr. O'Gara at the Brigham and Women's Hospital here in Boston, and I try to let him do his job. I do my best to keep my blood pressure below 120/80, and pulse rate close to 65. I do exercise, but no dumb-bells over 20 pounds, and no pulse rate over 125. So no heavy lifting, no running. And, a drug regimen that will last forever. Quite a change in my life. I miss skiing and running, and feeling as great as I once did. But it is still worth it. Life is beautiful. We just have to live it and treat it well.
I am soon up for another CT/MRI and Echo. I hope there is no change in the size and severity of my dissection. I want to postpone surgical intervention as long as I can. As long as I feel as good as I do today, I will do fine. I feel ok. Every day medicine take a step forward, and I will have an improved chance to do better the day (if) surgery required.
To all of you; there is hope. I, now at age 34, have made it 23 months post-dissecting ascending aortic aneurysm surgery, and hopefully, I will have many more years to come. I know I will. It is not easy, but what is the choice?
Take care, and I will keep you posted...