Living a healthy life, it is really worth the sacrifice? My story.

I am 46 years old. From the earliest memory I have, I remember loving to move. My family grew up in Toronto down by the beaches and we lived across the street from a park. My three brothers were regulars at the park playing every sport you can imagine. At the young age of 3, I thought it would be a great idea to jump out of the bath tub, run across the street naked and run through the sprinklers that were on in the park. Really what is wrong with this picture? My brothers were doing it? Well apparently my brothers weren’t too impressed, as they chased me covered me up and took me home.

I played sports at school: soccer, volleyball, baseball, dodgeball, track and field and anything else that involved sports and competition. I blame the influence from three naturally athletic older brothers. This lead to playing competitive squash and then golf.

I graduated from school in business and decided to get my certification to teach fitness classes, and then start personal training others. My entire life was spent ‘eating clean’. I dabbled in the ‘party scene’, but it wasn’t for me. I wasn’t interested in excessive drinking, or staying out late, because I knew it would affect how I would feel in the morning. My mornings were dedicated to working out. And I knew the extra calories weren’t worth it. For me it was about how I felt. And I didn’t like how I felt after these late nights.

My weekends were spent teaching classes at the local gym. I had no problem taking the early classes. After all it was the BEST time to exercise. You could be showered and done by noon, and you still have the entire day. That was my mind set.

Growing up in an Italian family also meant watching calories. When you have a mother and grandmother that make the best tomato sauce ever, it’s hard to say no. But I knew my limits. I spent my entire 20’s 30’s and 40’s working hard during the day, enjoying my workouts at night and eating clean 80% of the time.

That is what you are supposed to do right? This type of lifestyle keeps all the horrible diseases away; heart disease, diabetes, obesity and so much more.

Then it all changed.

October 2013, I was getting ready to teach a spinning class and I hopped on an Elliptical machine to warm up. Eight mins into my warm up, I got very light headed. I got off the machine and my heart started racing. The feeling was like my heart was pounding out of my chest. With my experience I knew the feeling was not normal, because I hadn’t worked that hard to justify my heart rate at 200+. I looked at my HR monitor and it read 237. I thought ‘well that doesn’t make sense’. I took off my monitor and reset it, (thinking I was getting interface with other machines) and it read 202. I was slightly alarmed, I started to walk around, trying to calm it down. For anyone that knows the feeling of trying to calm down when your heart is racing, it’s impossible. The more you worry the worse it feels. So I went outside into the cool October air and called my husband who was in Myrtle Beach on a golf trip. I told him what was going on and he also agreed it was weird, and suggested I try to sit down. I went back into the gym and asked one of the personal trainers (a new guy) to take my heart rate. He said it was 72. I was a bit skeptical as he used his index finger to take my pulse (which you’re not supposed to do). I told the front desk that I would rather not teach my class, because I wasn’t feeling well.

I left the gym, got into my car and drove home. (Later I find out this was a bad idea) The entire time my heart is racing. I lay in bed for 1 hour and checked my HR again it was 150. Called my sister who lives 45 mins away, and told her I might go to the ER and get it checked out. So I waited for her (another hour) and we went to the hospital together. My HR was 143 in the ER.  So for a period of 4 hours my heart was racing. By the time they got me into a room, my HR dropped to 90. They decided to run a group of tests. And the questions started: was I on any recreational drugs? No. Do I smoke? No. Do I drink coffee? Yes 1 a day. They had my sister leave the room and again asked if I was doing drugs.

This entire scenario was ironic for me. I haven’t smoked a cigarette, ever. Never tried drugs. I am a social drinker so I didn’t’ fit the profile they were looking for. How can someone so fit have heart issues? This was driving me crazy.

My first test came back and it showed that my Troponin levels were elevated. Troponin levels are an indication of heart distress. For example an elevated Troponin level could indicate a heart attack. So because mine was elevated, they kept me for two more nights in the ER in the hallway as there weren’t any rooms. I looked around me and saw sick unfit people, homeless people on drugs and I thought, what am I doing here?  I found out later that my Troponin level could be elevated due to my heart racing for 4+ hours too.

The first guess was a blood clot. So I had a CT scan. The CT scan showed three nodules on my lungs. At that time, the ER doctors thought that these nodules were from a past lung infection (had I ever had bronchitis?) yes a year ago. Was told to follow up with my family doctor regarding the lung nodules and see a cardiologist for the heart racing issues.

And the adventure began.

November 2013 I see a great cardiologist. I get an Echo Cardiogram (ECG – a test to determine how your heart is functioning) and a stress test. Both tests came back good, no issues. He suspects that my heart racing is related to the mystery nodules.

This entire time I am experiencing heart palpitations, and I think that maybe I am going crazy. What do I have to be worried about that my heart is heating strangely? I start seeing a psychologist wondering if maybe I have some unresolved issues that could explain these strange heart beats. The therapist is confused because she can’t seem to connect anything to my past. But I continue to see her.

In January 2014 I see a lung specialist. He orders another CT scan and the nodules look the same. He says we need to monitor the situation.

Heart racing again in early April put me in the ER where it returned to normal as soon as I was admitted.

End of April the lung doctor decided to perform a lung biopsy to determine what the lung nodules were. The biopsy results showed they there was live organism surrounding dead cells.  It appeared as if my body was unable to kill off these organisms. The theory was I had breathed in this stuff when I was in the desert in Las Vegas a few years back.

I get another CT scan in June 2014 and the results come back that the nodules are all gone. Good news!

Then I end up in the ER in August 2014, with heart racing again and of course by the time I arrive my heart rate returns to normal. The doctors say they can’t do anything for me until they get my heart racing on an ECG. At this point I had been to the ER five times with heart racing issues. And no one know what is going on.

September 14, 2014, my heart races again, but I wait an hour and it returns to normal. Then on September 28th, one day before my 45 birthday my heart started to race at 6pm at night, just after I returned from a birthday meal. AGAIN my poor husband is out of town on a golf weekend. I decide that I am not going to the ER.  I was quite sure that my heart rate would return to normal. The last 5 times that it happened it always returned to normal, so I waited. My sister decided to come over to keep any eye on me. I started to vomit and I believed that it was due to the birthday meal (food poisoning) I had a few hours earlier. Through this entire ordeal, my husband was extremely supportive. But both times I ended up in the hospital for longer than a night, he was away on a golf trip. He only has two golf trips a year. I couldn’t image how he felt, being away. But he always got back in time.

After 12 hours of heart racing, I was feeling worse every hour. I decided to get up and go to the hospital. I couldn’t get out of bed. The ambulance was called and my heart rate was 239. I was rushed to the hospital, put under anesthetic as they shocked my heart back into rhythm. When I woke up I felt great. But they admitted me.

The good news is that they were able to get my heart rhythm on an ECG. Everyone in the arrhythmia clinic were stumped. The ECG indicated my heart was in distress, but nothing on any test supported why that would be. My heart shape and function were normal.

The theory at this point was maybe the pathway to my heart that is responsible for how my heart sends a shock was faulty. So they put me in the Arrhythmia lab and tried to reproduce my heart racing, by injecting me with adrenaline. The first shot of adrenaline did nothing. As I exercised a lot, the theory was that the hit of adrenaline did nothing. So they gave me another shot. My heart raced to 300 bpm and I passed out. They had to shock my heart back into rhythm again. The Arrhythmia lab was not successful.

So now everyone was confused. A cardiac MRI was scheduled for November 18th. Those results showed nothing. A second cardiac MRI with contrast showed tiny white patches on the back of my heart.

On January 12th, 2015, I was told I have Cardiac Sarcoidosis (Cardiac Sarc).  As I sat in the doctor’s room, I was really confused. Cardiac Sarcoidosis is an auto immune disease. My body has a hard time telling the difference between good and bad cells. So my good cells fight my good cells. I had a PET scan done on January 29th, which confirmed I had Sarcoidosis in my heart, liver, lungs and spleen. The strange thing was the only symptoms I had was heart racing, and exhaustion. But I attributed that to life.

First up, I was to get an ICD (Cardiac Defribulator). Cardiac Sarc is very rare and to ensure that I didn’t die of heart failure they needed to insert the ICD. That went in on February 23rd, 2015.

At this point everything was very overwhelming. I remember asking the arrhythmia doctor how this could happen. I said “I have dedicated my entire life to eating healthy and exercising, how can I get this disease?” His response is one I will never forgot. He said “There is not rhyme or reason for understanding auto immune diseases. It is like you just selected a number in the lottery and you get it. But don’t ever think that all the work you have put into your life has been for nothing. The reason you are here today is because you worked out and ate healthy. Not many people would have survived an elevated heart rate of 238 for 14 hours. Consider yourself lucky, you got a warning and you made it through. That warning would have killed 99% of the people that it happened too. “

At that moment, I thought, yes, it was worth it.

So in February I was put on prednisone. After 3 months, my second Pet Scan showed that all symptoms on Sarc had subsided. I finished my last dose of Prednisone on October 17th. I just had a third Pet Scan (6 weeks off Prednisone) and the Sarc in my heart is showing a small minor uptake but nothing to be concerned about yet. My next Pet scan will be in July 2016. My heart is continually monitored.

So is living a healthy life really worth the sacrifice? Yes it is. Many of us may get a disease that we can’t control but we can control what we eat and how ready our bodies will be to fight it.

If there is one thing I wish my story could help with is understanding that the choices you make impact your future. Everything you eat and drink and the way you treat your body has consequences.

These days I spend my time helping others stay fit. I love watching people sweat and making an investment in their body. I brings me a sense of joy to see people spend time making their bodies stronger and better.

Treat your body right, and one day it may save your life too.