The story of my diagnosis and first operation.
Written just months after the operation, this article (Menshealth 202) tells of my shock of being diagnosed, decisions I had to make , how I dealt with it, recovered and what learned from the experience and hardship.
My aim has always been to inspire and / or assist others who face similar situations and diagnosis. How to inject all that is positive into your mind, body and sole.
12 noon: 9 March 2002
Its hazy, but my eyes are open. Focus is returning. A dim light, a far off ceiling, a quiet machine-like continuous humming. There’s a presence, there are others in the room. My mouth is open, forced open. A square “kreepy krawly” like tube is taped to my face and runs deep into my lungs. My head is heavy, not sore, but drained and dull. Nausea, worse than a bad seasickness racks my body. My soul is almost lifeless. I know its there, yet can hardly feel it. Something’s happened to it, to my body, to me. Yet I feel no pain. Well, no pain as I had known it before. This is worse! My body’s been violated, I know it. Every part of me is a shadow of my former self. Every cell in me has been attacked. It’s like there’s a Black Hole through the middle of my body and all my energy has been drained. If the Twin Towers knew pain, then I know how they would have felt. Something has been driven deep into me, to my very being. I have been opened and pillaged from within. Tubes and lines pore out of my wrists and neck and snake their way to a myriad of machines and support systems. Someone moves into my vision, I gag and chomp on my mouthpiece. I know where I am, I know why, I remember now.
Bacterial Infection of the Heart Valve.
The sun was setting over a crystal, tropical ocean. Little sparkles of light and water shimmered all around me. As I turned I noticed the beautiful coral formations and crevices only a few feet below. Tiny fish darted for cover as I slid onto my last wave of the evening. I was surfing off a tropical island in the middle of nowhere. The yacht, our floating home was moored just off the reef, supper was ready and my friends were on board waiting to share an ice cold ale with me as the sun laid down to rest. Life was great!
It was 2pm on Friday the 11th of January 2002. Three and a half months since my Trip into the deep tropics. I pulled up in the parking area of the Cape Town Medi Clinic. It was pretty quiet inside casualty. One or two patients were behind the screens, but I could see I wouldn’t wait to long. “Two hamburgers and a milkshake please”, I said with a twinkle in my eye. The duty nurse looked at me, not sure if I was being serious. Then she grinned back at me and asked if id been a patient here before. “Yes”, I said, remembering one particularly raucous new years eve. Take a seat, fill in this form and the doctor will be with you shortly.
Five minutes later I was called into a ward and the curtain was drawn around me. Little did I know then, but I would be seeing this routine a lot more in the near future. My doctor entered. She was 5.10, dark hair and lovely. I still remember her belly ring. Ill be coming back here again I thought secretly.
“So, Mr Bertish, how can we help you today, what seems to be the matter?”
I explained to her about my neck aches, sweaty nights, and more recently my lack of fitness and breath during training. And I told her of how my tests, 3 months earlier, had revealed that I had contracted a Virus (possibly a Tropical Virus), but the tests had shown that it was out of my system. She ordered some basic procedures. The same ones I had had 3 months earlier. Pulse, blood, blood pressure, temperature.
While I sat in my cubicle waiting for the results, I reflected, took stock of myself. Male. 31 yrs old. Single. Non-smoker. ‘Almost ‘ vegetarian. Homeowner. Part owner in a great Travel Company. Surfer. Sailboarder. Lifesaver. Amazing friends and family. Healthy and fit. Life was pretty damn good actually, although I realize now, I really hadn’t been appreciating it.
And this Lung infection, or whatever it was, was hardly going to slow me down. Not me. Just give me some antibiotics and lets move on, I thought. The Doc entered. ” Results are normal”, she said as she put her stethoscope to her ears. I puffed my bare chest out a little further before she put the cold steel disk to me. She moved it, and moved it again. I looked up at her face, and for the first time I was scared. I could see the question marks in her eyes. Something was very wrong.
“Have you ever been diagnosed with a heart murmur?” she said.
“No!”
“You have the most radical heart murmur I have ever heard!”
It was 7 pm now, that same Friday, and I was sitting in the waiting room on the 10th floor of the Christian Barnard Memorial Hospital. The Heart floor! Cardiology. I had seen specialists and cardiologists and had just undergone a series of tests, scans and blood tests that already blurred my memory. I sat, in another zone. Clouded thoughts flashing through my mind.
My diagnosis: the virus had attacked and stopped the Valve in my Aorta. The Aorta is the main artery running out of the Heart and the valve stops blood from flowing back into the heart. More than 25% of the blood being pumped out of my heart was leaking back in. My Heart was swollen. It was 30% larger than it should be, and thus the heart muscle was under serious pressure. Solution: Open Heart Surgery. Replace the valve. ASAP. Yebo! The beeg one! Wham bam, cut me open man.
I drove home. Everything suddenly seemed different. Me, my life, as I had known it just hours ago, was gone. I was living a new one, as a heart patient. It was a long drive. My life, my loves, my passions – what was I going to do? All those things I had been worrying about: money, work, deadlines, plans, dreams, hopes, had all just been flushed into obscurity.
At first I was given two alternatives.
Option 1:A metal valve. The most common. Lasts for 20 yrs to life? But, I would need to be on Warfrin (a blood thinning medication, that makes one vulnerable to internal bleeding) for the rest of my life. Not the end of most people’s worlds, but the end of my world. No wave sailing, no surfing, no snowboarding, no extreme or contact sports. –Next option–
Option 2: A synthetic or pig’s valve. No medication necessary. Normal lifestyle a possibility. But, in a young energetic persons Aorta, the life expectancy of this valve is only 5 -8 yrs. That means I would need to be cut every decade. Great choice!
After a week of trying to come to terms with my condition and options, I decided on going for the pig’s valve first. That would give me a few good years, I would then get cut again and take the metal valve and the medication and lifestyle that came with it. In retrospect, I’m so glad I never went for this.
Only then, was I offered a third option.
The Ross Procedure. A double, more complicated operation. {A procedure developed for kids who required valve replacement. Artificial valves did not grow with the heart; so human valves were then inserted. The heart is stopped. The valve in the Aorta is removed. The valve in the Pulmonary Artery is cut out, built up and grafted into the Aorta. A pig’s, synthetic or human donor valve is then inserted into the Pulmonary. This procedure on adults was, and still is, seen by many doctors as controversial. It meant operating on two arteries and valves, when only one needed to be tinkered with. In the past couple of years however, it has proven (only with the best surgeons) to be very successful and a couple of thousand have been performed worldwide. It is only offered in certain circumstances, and generally only to fit, open minded adults less than 40 yrs of age.}
You may want to but this{ } in a separate box – an explanation of the procedure.
I was lucky. I got a human donors valve for my Ross.
I was in Intensive Care for 7 days. I was sick as a dog for the first few days. The op had been a success, but there had been complications. They found that my valve had been leaking since birth, and my heart was far bigger than they expected. They had done the op, but were now giving me at least a year for my heart to shrink to normal size.
I was homebound for a month. I walked around, arms crossed, literally holding myself together at all times. I lost 10 kg. (in all the wrong places) I lost my senses of taste and smell for more than three weeks. And I went through periods of extreme highs and very moody lows.
The human body, mind and spirit are amazing. It’s been two months since my Ross. I am swimming and jogging three times a week. Don’t tell my doctor, but yesterday I went for a surf ski paddle off Clifton. Very mellow, very slow, but totally mind blowing.
The mountain was more beautiful than ever before, and the sunset redder and longer
lasting than I ever recall. I sat on the soft white sand and looked at a magical, sparkling, moonlit sea. I sipped the best beer I had ever tasted, while chatting and laughing with some of my amazing friends. I got into my car and drove myself along a spectacular
road, to see my beautiful Mom, who I hugged longer than normal, and where I sat down to a home cooked meal that was absolutely delicious. And all this in the most Awesome country in the world.
This article was not written for you to experience my pain and suffering. Many have gone through much, much more. My story is small scale compared to what it could have been, or what I could have let it become. In fact, the way I see it, it was a blessing in disguise. It was a wake up call. Although I thought I was so far from being in a rut because of my different and exciting lifestyle, I was in societies rut of the norms of daily life. I am and will be a better person for this! And my scar is a constant reminder of how precious life can be, and how strong the human spirit and body really is.
Article written for Mens Health 2002 ( only months after my first Operation )