On the 17th Sep 2007 I presented to my good friend and local GP with symptoms of not feeling crash hot and shortness of breath stating that it was taking me twice the amount of time to do my job than it normally would. Not a very professional way to work when you're trying to run your own business. My wife and I had our own Telecommunication & Data installation and maintenance business and I had been extremely active up until this point.
The Doc performed a ECG and said I had the lungs of a 95-year-old, I told him to get a new machine because I had never smoked a day in my 45-year-old life, then he got serious and talked to me about something called Cardiomyopathy. Within 4 days I was able to see a Cardiologist and was finally diagnosed with Dilated Cardiomyopathy with a EF of 20% and the start of "life time medications" was introduced. A hospital stay was booked for the following Friday for a precautionary angiogram. My vascular system was extremely good but I had dropped 10 kg fairly quickly and my complexion was so grey ET phoned me (sorry) so as a precaution I was kept in ICU for the long weekend.
For the next 10 months I continued to work in some form and continual monitoring from the Cardiologist along with titration of beta blockers and ACE inhibitors along with diuretics statins and aspirin were used to try and increase heart function, but unfortunately there was no improvement. Family history was not on my side either as my eldest brother passed away suddenly in 2002 at 45 years of age and a 55-year-old cousin had been diagnosed in 2005 with DCM. I was sent to St Vincent's to see Prof Chris Hayward as part of an introduction to a transplant team, so I took all my paper work and x-rays from years gone by.
In 2004 whilst working for NSW state rail I was screened by the NSW Dust and Disease Boards Lung bus. This entailed a lung function test and chest x-ray with a result coming back as having an Enlarged Heart, when I showed the x-ray and reference letter from the NSW D&D Board to a visiting GP at our local medical practise, she unfortunately diagnosed it as a shadow on the x-ray and dismissed the report, damn. Probably the fact that I was asymptomatic at the time also influenced her incorrect diagnosis, this was 3 years prior to my official diagnosis. With all this information gathered Professor Hayward expected my DCM to be Familial and decided that a biventricular ICD be put in place as a therapeutic trial if the Electro Physiologist agreed which was the case, hallelujah. I could feel a significant improvement in symptoms immediately post op.
In August 2015 results from Gene testing came back Negative for cardiomyopathy panel. My four daughters have all been screened by our local Cardiologist and their base line Echo measurements are on record for future reference. Fingers crossed it will be just for monitoring purposes.
So that is a long winded account of how I was diagnosed and treated, and the following 6 years after became a roller coaster of a series of unfortunate events. None of which would shed any positive light and the only real point I could make would be that unfortunately I allowed the disease to take a hold of my life for far too long during this period of time.
My progression forward initially started around mid-2014 when I realized that come the end of the year I would be getting my ICD replaced. So I removed myself from attending fast food outlets and started taking the dog for walks. I was not always consistent but at least some type of foundation for a healthier life style was beginning to take form. I continued with this very slow but steady transition and although I was not seeing any change on the weight scales or any significant increase in stamina, my mindset was the actual thing that was reaping the rewards, I was no longer battling the devil on my left shoulder but I was beginning to get comfortable with the angel on my right.
Late 2016 and I arranged an appointment with my local Cardio as it had been 2 years and I was determined to have a conversation about reduction in medications considering I was on a role and had removed 5 other daily tablets over the past 18 months. I came out of that appointment with my tail between my legs and thought I would need medication for tinnitus as my ears where ringing lol. He said there would be no reduction in any of the heart medications and that I needed "conditioning" and I new he was right but damn it is hard when your medication is telling your brain receptors that you need to chill when you're about to break through to your second wind only two minutes in from the start of your exercise. I knew my mindset was ready to go, I just had this hurdle to overcome with regards to turning thoughts into lasting actions.
My next step made all the difference in contributing to getting to where I am at present health wise and would be wrong of me not to acknowledge those responsible. I discovered a fantastic human being on the other side of the world (Phoenix Arizona) whom just happened to be a Health and Wellness coach. Her name is Jennifer McKee and her own personal journey is awe inspiring. The tools, knowledge and techniques that I have been learning from Jennifer have allowed me to get over that hurdle. So my nutrition became a form of new medication, I have not gone on a diet, I have only managed my food choices better and the difference is noted on many fronts, the scales, the taste and satisfaction, my energy levels and so many more. The other person to acknowledge and I say this with hesitation, is myself. Ha-ha I am not a vain person, I am fairly timid and extremely empathetic but I am learning that at times putting yourself first is a requirement.
Over the past 8 months I have set goals and been able to achieve them on most occasions, not only that but I was able to remove my ACE inhibitor morning dosage since the start of June, that is a small victory in my mind and gives me hope and confidence that my steps are in the right direction (and will probably be counted by fit bit lol).