Name: Dave Mason
Age at time of Dissection: 53
Type of Dissection: Ascending
Date of Aortic Dissection: 16 June 2014
Tell Us Your Story:
I am currently 54 years old, 55 next month, and very lucky. My beautiful wonderful wife and I are both survivors of open heart surgery. She had a valve repair in her late thirties and I had an ascending aortic dissection in 2014 at the age of 52. I live in Sydney, Australia and this is my story.
I’ve read a number of the stories on this site about excruciating pain and terrible symptoms but I had little of that. I was out with two good friends for a golf game on a Saturday morning. There were supposed to be four of us but one had to pull out as he was suffering terribly due to kidney stones and couldn’t make it. We were all booked to have dinner that night with our four wives … the restaurant was understanding when we later cancelled! Anyway, while warming up for golf on the driving range, I sat down for a minute. One of my friends asked if I was Okay and I said “Yes, I just feel really … odd.” I was experiencing visual disturbances like yellow dots and had a headache but nothing serious enough to get in the way of a golf game. I also had an unusual tingling at the back of my jaw which may be the symptom which saved me.
We proceeded to play golf. We were walking the moderately hilly course and I was struggling a little. Not so much that I couldn’t walk or keep up, I just had continuous visual problems, some nausea and headache. For every shot I had to really focus on striking the ball at all which actually helped my golf! This particular course, Moore Park, comes back past the clubhouse after ten holes rather than the usual nine. My playing partners had been surreptitiously searching my symptoms on the web on their phones during the round but when we stopped at the clubhouse they had a better chance to read. They came back to me waiting on the 11th tee and said “We’re not willing to play the back nine with you. We’re taking you home!” Better friends, a man could never have!
It may have helped that I am a very big man (6’8” – 200cm and 115kg) and they didn’t fancy having to carry me back to the clubhouse from the course. Anyway, I didn’t feel good so I didn’t argue. We piled our gear back into the car and headed off. Meanwhile, one of them was on the phone to his wife who was able to search for my symptoms on a full-sized computer and she said “No, no! This sounds like a heart attack! Take him straight to the hospital!”. So we made a detour and dropped into St Vincent’s Hospital Emergency. One of my friends came in with me to tell them that they suspected a heart attack as I was still not feeling that bad and thought we were probably overreacting.
The hospital agreed that I was suffering a “cardiac event” but that my heart appeared to be behaving so they put me under observation and sent me up to a ward. There I stayed until Monday. One of the common questions I kept getting asked was “What is your pain level on a scale of 1 to 10?”. Now, I’ve had multiple knee surgeries and I had to say, relative to post-operative knee surgery pain as a “10”, I had pain of about 2 or 3. My wife Julie kept saying after they left “You have to say ‘6 or 7’ or they won’t take you seriously! I’m really worried…”. Who knows what they would have done if I’d been in more pain. As it was, they gave me some pain relief and I waited until Monday when there were more specialists at the hospital.
On Monday morning, I was sent to a cardiologist for an angiogram with a view to perhaps needing a stent. This is done without much anaesthetic through an artery in the thigh so I was awake. After a while I asked the doctor,
“So, do I need a stent?”
“I don’t know”, he said “I can’t push past this to get in there … you’re having an aortic dissection.”
I’d never heard of this, so I asked “What does that mean?”
“It means you need surgery.” He replied.
Well, Julie’s heart condition had been monitored for years until it was decided that she needed surgery. Then there was weeks of planning and preparation for the scheduled event. So my next question was logical.
Suddenly things started moving very very quickly. They just about yanked the angiogram tube out of my leg. There were people shouting on the phone and I was being rushed down hallways on the hospital gurney with fluorescent lights flashing over my head. Soon, Julie was right there crying and a new doctor was peering down at me with a concerned look. He turned out to be the surgeon. He flashed a consent form in front of me to sign. “Dr Paul Jantz” I read. My son Tim went to school with a boy called “Jantz”, I bet they’re related … but I guess this is not the time to ask. I signed. (Paul turned out to be the uncle of Tim’s schoolmate). Before they wheeled me away, I had only a moment to talk to Julie. “I’m really sorry” I said. She looked so upset.
So, about 20 minutes after that word “NOW!”, I was in theater and going under a general anesthetic.
At this point, I have to say how incredibly lucky I had been up to this point. My very good friends saved my life by taking minor symptoms seriously and making me go to hospital. If this had happened at home I would have likely waited it out. The nearest hospital was St Vincent’s which happens to be “Cardiac Central” in Sydney although there are many fine hospitals. When my dissection was discovered, Dr Jantz was available and he just happens to be probably the best surgeon in Sydney for this particular operation. I don’t know what he planned to do that Monday but he spent the next 10-12 hours operating on me. He “re-seated” my aortic valve and replaced the arch of my aorta with a Dacron graft extending over the top past the subclavian arteries.
The next I knew I was waking up in a darkened room. There were some things wrapped around my calves which expanded periodically to “hug” or compress my legs. My first thought was “That’s clever. I bet they’re to prevent deep vein thrombosis!” My next thought was to take in my surroundings and to see what was going on. There was a nurse there periodically attending to numerous “machines that go beep” so I knew I was in ICU. “What time is it?” I asked the nurse. “Oh!” she said, “You’re awake.” And then checking her watch, she said “It’s 6am on Friday morning.”
I took that in for a moment and then said “So, I’ve been out all week?”. “Yes” she said “they had a bit of trouble closing you up.” The next thing I wanted to do was to phone Julie. They brought me a phone. Well, what a week it had been while I “slept”! Although there was a controlled stream of visitors that day, I discovered over the next few hours that my friend Bas had come over from New Zealand (a 3 hour flight) to help Julie and the boys. My son Tim had been fielding so many queries about my condition that he’d set up a Facebook group for people to go to. This had about 90-100 members by the time I came out of the induced coma and had over 125 members in the end. People from every place, every pursuit and every stage of my life were interested and caring. There were people from Europe, the U.S., Canada Australia and New Zealand.
There were family, work colleagues, childhood friends, basketball team-mates and social acquaintances. The amazing care and support was and is just overwhelming. Everyone should have a brush with death like this to find out how lucky they are that so many people in their life care about them!
I spent the next few weeks in hospital. My condition was exacerbated because I had a couple of strokes at some stage too. I think I had every test associated with cardiac issues or stroke that a hospital can do. Some were unpleasant, most not too bad. I slowly started to sit, stand and then walk within a few days and gained strength gradually for months. When I first woke I was full of fluids and had ballooned up to 120kgs. I quickly dropped to 104kgs over the next few days and Julie was worried that the normal sized hospital meals were insufficient. They started offering double servings and I did regain my normal 110-115kg weight.
The first couple of weeks I couldn’t really sleep. I was very lucky that the soccer World Cup was on. Normally I wouldn’t have been interested in a 4am match between Costa Rica and Cameroon or something, but it saved me from looking at a ceiling! After about a month I suddenly realised that I could read again. I hadn’t really noticed but up until then, although I could read the words, I couldn’t hold a full sentence in my head to make sense of it while reading. Apparently this is not unusual after major surgery. Anyway, after clearing that hurdle I was able to find out lots more about what had happened to me.
So, 40% of people with aortic dissections don’t make it to the hospital. Then there is about a 1% per hour death rate. I arrived on Saturday and waited until Monday. Hmmm … 50% chance of dying at that stage? Then about 10-15% of people don’t survive the surgery. Wow! I am a very very lucky man!!
After five or six weeks I came home from hospital. Some wonderful friends had been putting Julie up in their home closer the hospital. Our dogs had been in a kennel for a month. One of my sons had had his university exams delayed and had to sit them all on one or two days. My other son, who works in a different hospital, had been up and down from Sydney’s North Shore to St Vincent’s in and around his night shifts. Life slowly, very slowly, returned to normal.
I was off work for 3 months. Then I made arrangements to go in at first 2 days a week, then 3 right up until Christmas. In January, six months later, I started work five days a week again. I am an IT consultant so my work is sedentary but can be across various sites. My employer was very understanding and, fortunately, I had disability insurance which covered 75% of the time I was not working. I used up all my sick leave, all my annual leave and then used leave without pay. But we made it.
My return to physical activity was slow. I did about two or three months of cardiac rehab from September to November and I aimed to play golf again by Christmas but didn’t make it until January or February. I played in cart and was careful not to over-exert myself for quite some time. However, about a year after the surgery Julie came with me to talk to one of my doctors. She had a couple important questions as she wasn’t convinced that I was taking enough care. I had a win and a loss!
Q1 “Dave wants to walk the golf course instead of using a cart. Isn’t that a really bad idea?”
“No,” the doctor said “exercise is good and if he walks he will hopefully keep the weight off more easily.”
Q2 “Well, he shouldn’t be drinking alcohol should he?”
The doctor looked at me and asked “Well how much would you drink?”. I’d had a win on the first question so I thought I’d aim high.
“I only drink occasionally and then maybe 4 or 5 beers … ?
“What?!” said the doctor, “ONE drink! Never more than one. It raises your blood pressure and you have to be really careful.”
I was happy with that outcome. Walking golf like I used to and almost no drinking. A very very small price to pay for being alive! The other changes to my life include a handful of pills morning and night to “aggressively manage blood pressure” as the literature says. I could/should exercise every day. I do make sure that I at least walk, swim or golf but it is hard when work gets in the way. I sleep now with a CPAP machine as it turned out I was having sleep apnea … just one more small indignity. I see my cardiologist Dr David Gray about every six months (he has been Julie’s cardiologist for 15 years) and I see a blood pressure specialist Dr Mark Penny about every couple of months. He does most of the medication management along with my GP Dr Andrea Peiser. I’ve actually cut down on the number of doctors I need to be seeing!
My ability to exercise is nearly what it was just prior to the “event”. I have more trouble with one of my knees than with the effects of the surgery. My sternum has completely healed and I have no problems swinging a golf club. My zipper scar is pretty impressive but will continue to fade (after 12 years, Julie’s scar is all but gone). My sex life is nearly normal, notwithstanding the effects of statins and beta blockers. These are things which a large proportion of people my age are putting up with.
The pathology of my dissection indicated that it was almost certainly genetic. I have been examined for Marfan’s but, apart from being much taller than average, I don’t have many Marfanesque characteristics. I’ve had a sample taken to do genomic tests as apparently about half of the other genetic conditions that can result in aortic dissection can be identified. These have not come back but if they do find something specific then my sons (and I guess some of my other relations) can have a test for that specific genomic marker. Otherwise they just need to have the size of their aortas checked every 3 or 4 years.
So, now it is 18 months later. My life is not the same but it is relatively normal. I love my life. I love my wife. I love my two amazing sons. Perhaps partly through our medical adventures Julie and I have inspired our sons to pursue lives in medicine. Pat is a wardsman (orderly) and is finishing his degree in Nursing this year (he changed from Engineering!). Tim is in Med School and hopes to be a heart surgeon. Perhaps it was all destined to be this way!