Why you should ride your dream today, not "one day".

11/5/16

Firstly, don't worry, I'm fine.☺

Me enjoying a little nap in the Intensive Care Unit at

The Mount Hospital. Suzanne will never miss a
photo opportunity.

I wrote this a few months ago and have been contemplating whether to post it or not. Well, I've decided. Here it is.

I thought I'd tell my little story here in the hope that it encourages people to get out there and do that dream ride now while you can, instead of waiting for "one day" to come along. Also, people have heard bits and pieces about what happened to me, so this is the full story, from the horse's mouth, so to speak.

I've had an annoying and persistent cough for a long time. In October one night I coughed so much I felt really dizzy and lay on my bed thinking I might pass out. The next thing I knew was my wife Suzanne was shaking me and yelling at me to wake up. I had passed out, and she had called an ambulance.

The ambulance guys arrived and by this time I was wide awake and feeling fine, if not a little disoriented. The medic wired me up to a machine, did the usual blood pressure and temperature checks, and said "We're taking you to emergency". I protested saying I was fine and I had just passed out because I was coughing so much. It's no big deal. The medic replied "No, we ARE taking you to hospital. You haven't had a heart attack, or a stroke, but somethings not right". Not really what you want to hear. The ambulance rolled into Fiona Stanley Hospital Emergency Department about four minutes later. As it turns out they probably saved my life.

Boy did I get looked after at Fiona Stanley. The doctors and nurses there were absolutely amazing and cared for me like I was a rock star. I was hooked up to a bunch of machines, X-Rayed, scanned, ultrasounded (is that a word?), and had so much blood taken for tests I felt like a pin cushion. After about four hours of tests a heart specialist came in and told me they thought that they had found the problem, but I'd need some more scans to confirm it.

It turns out that I had a bicuspid valve in my heart. A normal heart valve (tricuspid) has three flaps that open and close to let the blood through. Mine only had two, so it doesn't allow as much blood through. Hmm, not good.

"A bicuspid aortic valve (BAV) is most commonly a congenital condition of the aortic valve where two of the aortic valvular leaflets fuse during development resulting in a valve that is bicuspid instead of the normal tricuspid configuration".

Thanks to Cleveland Clinic.

This is a hereditary thing, not anything that happens to you as a result of lifestyle or any other external influence. I was born with a bicuspid valve, but never knew it.

As we get older our valves calcify, and reduce the blood flow through them. In a normal tricuspid valve it's not usually a problem. If a valve's performance drops below 45% it's replacement time. My valve was flowing about 31%! No wonder I've felt so bloody unfit and tired for the last couple of years. My body wasn't getting the oxygen it desperately needed to function properly. It turns out that because my heart was working so hard trying to pump as much blood as it could through a very small opening, there was also substantial thickening of the heart muscle (not really desirable) and an aorta that was looking pretty ordinary as well.

Dr Chris Judkins was my Cardiologist who was keeping an eye on me. He came in and explained exactly what was wrong, and how we could correct it. He also loaded me up with medication so I'd survive long enough to have a rebuild.

Then I met Dr Rob Larbalestia, my Cardiothoracic Surgeon. What a man. There's only one way to describe him, he works his bloody arse off! Dr Larbalestia performs three or four valve replacements, a four or five hour operation, in a day. Then he has all the follow up work, and his other commitments with various foundations on top of that. He works hours that most of us wouldn't dream of, and I genuinely believe his only motivation is to help people. He first visited me on a Saturday at about 7:30pm after a full day in theater. He's constantly looking for ways to improve procedures and is held in very high esteem by anyone in the know. You can read about him here:

http://heartlungtransplantfoundation.org.au/about-us/our-board/dr-rob-larbalestia/a-surgical-life/

Yes, I did my research. I wanted to know a little about the man who was going to be holding my heart in his hands.

He told me that I needed a replacement valve, and possible an aorta as well, but that decision would be made once he opened me up. There were two options, a porcine (pig) valve, or a titanium metal valve. His suggestion was to go with the pig valve. It will need replacing in ten to fifteen years, which will be a much more simple procedure that the initial operation. His reasoning against the titanium valve was that I would have to take "Rat poison" (Warfarin, a blood thinning medication) every day for the rest of my life, and he doesn't like it. So a pig valve it was to be. There's no becoming a Muslim now. I must admit that I did feel a little sad that somewhere a poor piggy was going to give up his life so I could continue mine.

He also told me I was lucky to survive my "episode" and if it happened again I probably wouldn't, so we need to get things moving quickly. So a date was made, and I was off to the theater with with my new best mate in a few weeks.

I'm not a good patient, so I was happy to say goodbye to the fantastic nurses at Fiona Stanley Hospital after being there for four or five days. They do an awesome job.

OK, it's intermission. Go and make yourself a cup of coffee, or pour yourself a glass of wine (red, it's good for your heart). This is the interesting bit...

Welcome back.

Now something I didn't know is that before heart surgery, you have to ensure your teeth are all in excellent condition. Oh oh! Apparently the old teeth are an easy way for infection to get into your system, and infection is a big no no when you have any type of heart surgery. It's a long story, but I had a couple of broken teeth that happened years ago. After a less than professional experience with a certain dentist I haven't seen a dentist for many, many years.

We were sitting in Dr Larbalestia's office late on a Friday afternoon when he told me this, and I was due in surgery on Tuesday. Of course I couldn't get a dentist appointment in time, and I also needed another CT scan, so Dr Larbalestia said we'll put the operation off for a couple of weeks. This is where Suzanne sprang into action. She said "No! Simon is having this done on Tuesday!" Between Suzanne and Dr Larbalestia's assistant, I had a CT scan booked for 5:30 that afternoon, and a dentist appointment for first thing Monday morning. Wow! 

So off we went for the scan. Now this was interesting because it was one of those scans where they inject dye into your system. The radiographer told me that it will feel very warm, and then you will feel like you desperately want to urinate, but don't worry, you won't. Man, was she right. It was one of the most "unusual" sensations I've ever experienced.

First thing Monday morning I scoffed down six huge antibiotic tablets (preventative maintenance) and headed to the dentist. It turned out that my teeth were pretty good and I only needed the two broken ones repaired. Bugger me, a few weeks later I broke off the side of a tooth while eating something, and that piece jammed between my teeth and broke another one. I now have two broken teeth again. By mid afternoon I was comfortably in bed at The Mount Hospital.

On Tuesday after some prep medication, they rolled me into the operating theater. One of the anesthesiologists (they have two for this operation) was a very attractive, blonde woman who I tried to set up with a mate of mine. Sorry Ian, she was married, but I was thinking of you mate.

Dr Larbalestia and his crew went to work and quite a few hours later I woke up in the Intensive Care Unit where you get your very own nurse, 24 hours a day. Unfortunately you're not allowed to take them home with you. I was once again hooked up to all sorts of machines and had tubes coming out of all sorts of places, including two in my torso where there weren't holes when I went into theater. I actually felt pretty good, but that may have been the pain killers and medication I was on.

After a day or two (I think) in ICU I was shuffled off to the ward where I was told it would be eight to ten days before I could go home. Ten days? In hospital? No way. After telling anyone who would listen that I wanted to go home, they eventually let me out after five days. Woohoo!

Once again the nursing staff were exceptional, and the food was actually pretty good in The Mount as well. But I can only spend so much time in bed, watching day time TV, before I want to kill someone.

A couple of X-Rays were taken to make sure Dr Larbalestia's missing Porsche keys weren't inside my chest cavity.

Nope! No Porsche keys in here.
I thought I'd see a nice line of staples in my sternum, but it was wired up with some dodgy looking twitched stainless wire. I do a much better job when I safety wire my bikes. Maybe I could assist Dr Larbalestia from now on.

Sideways view of the wires, and you can see 

part of the synthetic aorta as well.

So there you go, all fixed, or so you would think.

Dr Larbalestia had told me I would notice the difference almost immediately, but I wasn't feeling much better than before I went into hospital, and I was still coughing. Believe me, you don't want to be coughing after you've had open heart surgery. OUCH! After seeing Dr Larbalestia and telling him I was coughing non stop, not sleeping, actually struggling to breath, and had enough of everything referred me to a cough specialist. Is there really such a person?

Enter Dr Michael Prichard. Dr Prichard is actually a respiratory and sleep physician that happens to know a hell of a lot about coughs. After sitting in something that resembles a large aquarium (don't knock on the glass, it really is loud in there) and going through a whole lot of breathing tests, Dr Prichard was pretty sure I was suffering from Asthma. The plan was I would take some medication to settle my cough down, then we could conduct some tests to see if this was in fact the case. Another appointment was made.

A week or so later I was back to coughing like I was the night I passed out, and I was totally exhausted. This is not how my recovery should be progressing. I won't go into detail about what I was coughing up, but it wan't pleasant.

Then it got to the point where Suzanne said "That's it! I'm taking you to hospital". Noooo, not again. Ten minutes later I was wheezing and coughing in Fiona Stanley Emergency again. More tests, and the doctor there told me she was no specialist, but she thought I had chronic bronchitis and I should see a specialist. I had well and truly had enough of everything by now. I just wanted it to stop.

Suzanne went into admin mode and was on the phone. Before I knew it I was back in The Mount Hospital waiting to see Dr Prichard. Thanks Suzanne.

Dr Prichard arranged more tests. I was beginning to feel like one of those laboratory rats you see on TV. More blood tests, medication, oxygen, Ventolin, and so on. Then it was time for the highlight of my visit, a lung biopsy. This was actually the best part of this whole experience. Well the Pethedine before hand was anyway. The rolled me into the prep area and there were three nurses chatting away. One of them said something funny and I laughed. She turned and said "Did you hear that?" I said of course, I'm only a few feet away. The nurses all of a sudden became much more professional and one told me that usually people are so zonked by the Pethadine they don't hear a thing. Then Dr Prichard rocked up and proceeded to squirt some anesthetic down my throat, followed by the most revolting tasting stuff i have ever tasted in my life. Blah! A nurse said "Just pretend it's a good scotch." Dr Prichard turned to her and said "you've never tasted this have you?" The next few minutes were spent with Dr Prichard and I trying to get the nurse to sample this revolting stuff. We failed. It was time for the show, the nurse masked up and said Look, I'm a duck" to which I replied "You can't be, there's only room for one quack in this room". That's the last thing I remember.

The next day Dr Prichard came in and told me my lungs were healthy with nothing to worry about, and with no infections. The problem was that with all the coughing I had inflamed bronchioles and a lot of them were blocked up. This explained the coughing, and the difficulty breathing. At last we were getting somewhere. After more medication, breathing oxygen, and doses of Ventolin four times a day I was feeling good. Dr Prichard told me when I checked into the hospital my lung capacity was 1.7 litres, when I was ready to go home, it was 3.8 litres, and it should be up to around 4.8 litres pretty soon. When I left his rooms he smiled and said "Tell your wife she did the right thing".

So now seven months later I'm all good. Obviously I'm not back to 100% yet, but I'm a hell of a lot better than I was before this little exercise. Now I just have to do a bit of exercise to lose some of the weight I've gained from sitting around doing nothing, and eating too much.

A fortnight ago I had an electrocardiogram and Dr Judkins was very happy with the result. The valve and aorta are perfect, and the thickening of my heart muscle has reduced to almost nothing, and will continue to improve. The other good news is I'm now down from seven tablets a day to only one.

So the end result is I'm fine, and it could have been very different if...

I think the lesson here is, any of us could drop off the perch at any tick of the clock. You just never know. Check your family history, my daughter is going to see a doctor and have her heart checked. A quick ultrasound is all that is required to verify all is OK. If you have a family history of heart issues, get it checked out, but most importantly, get yourself organised and to that once in a lifetime trip you've dreamed about.

You never know what's around the corner. If you're thinking "One day I'll..." don't keep making excuses and putting it off. Do it now, while you can.

See you on the road somewhere.

Huge thank yous:

Ambulance drivers / medics.
Fiona Stanley Hospital nurses & doctors.
Dr Chris Judkins - Cardiologist.
Dr Rob Larbalestia - Cardiothoracic Surgeon.
Dr Michael Prichard - Respiratory and sleep physician.
My mates that came in to visit me, and gave me moto touring books to read.
The Mount Hospital nursing staff, who laughed at all my really bad Dad jokes.
The little Piggy who never go to go to market.

And of course my wonderful wife Suzanne, who took names and kicked arses to make all this happen very, very quickly.

I may not look any better, but I feel better.