Timeline

In 1998, my family doctor heard an abnormal heart beat and sent me to a Cardiologist. After my first Echocardiogram, the cardiologist diagnosed me with Hypertrophic Obstructive Cardiomyopathy.  I was 24, training for my first triathlon only to be told by a cardiologist that I should not do high intensity exercise or heavy weight lifting.  She advised going on Beta-Blockers.  I laughed it off and continued to keep active.

In 2004, a new cardiologist replaced the previous ones I had been seeing every two years for an Echocardiogram, ECG and the ‘you should be on medication’ talk I always brushed off.

Dr. Anna Woo was a bit different from the others.  She’d use scare tactics to convince me to get on medication.  She put the fear in me after each appointment, but after a few days of reflection, I stood firm in my belief that if I didn’t feel any of the symptoms that comes along with this disease, I didn’t need to be on drugs.

These every other year visits turned into yearly visits, which eventually, turned into every 6 months visits.

In 2009, I had Sciatica , the stress lead to an anxiety attack one night. It was then that I decided to go on the medication for my heart.

For almost a year, I was on beta-blockers (Atenol 25mg). Neither my family doctor, nor I liked the side-effects.  My already low blood pressure went from 100/80 to 80/55.  I was feeling light headed a lot, my mouth was always dry and my teeth would stain fast.

In 2010, my yearly Echo showed that the thickening of the heart wall muscle had doubled and she warned me that I should have surgery if I don’t go on this new drug, Rythmoden.  I went off the Beta-Blockers even though she wanted me to continue on both drugs.

In 2011, there were some improvement.  I started to believe that Rythmoden was the end to all my heart problems.

In 2012, the muscle got even thicker. (so much for improvement).  A normal person’s heart wall muscle is 0.8-1 mm, mine was 2.1.  She sent me in for an MRI.  The results came back showing scaring and open heart surgery was the only way to prevent sudden cardiac arrest and doing it quickly would prevent permanent heart damage (from the scaring).

In March 2012, I started to feel some chest pain.  Nothing too painful but enough to make me take note that I was flirting with death.  In early May, the symptoms would come more often.  I was feeling tired and finding my workouts were getting more and more exhausting.  Dr. Anna Woo said that Rythmoden was taken off the market and she was concerned that if I run out, my life might be in jeopardy.  I agreed to see the surgeon.

May 10th 2012, I met with Dr Anthony Ralph-Edwards and we had a long discussion about the surgery. It all seemed so surreal.  I’m not scared (yet) and in some way, I just want to be done with it.  Which is why on May 23rd, 2012, I’ll be going in for Open Heart surgery.

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3 thoughts on “Timeline

  1. Leehe … I stumbled across your blog tonight while googling Dr. Ralph-Edwards, the surgeon my cardiologist has referred me to for septal myectomy. You see, my story is much like yours in many ways. I am eternally grateful to a former family physician who chose to follow up on my abnormal heart sounds, which led to my diagnosis of HOCM. For the past 4 years, my disease has been mostly well managed on beta blockers. However, in the last year, my septal thickness has increased even further (2.7 cm?) and even more concerning, the pressure of blood flow leaving my heart is dangerously high. I am 46 years old, petite and very much looking forward to life “on the other side” of open heart surgery. I’m not very fit these days …. Over the last year and a half, my approach to exercise has gone from cautious to leary to thinking better of it. I just noticed I was feeling differently when I exercised …. dizzy on the treadmill, out of breath doing simple weights…nothing significant and yet too much to ignore. One thing this disease has done for me is teach me to listen to my body.

    I have two amazing kids, a 13 year old daughter and a son who will be 8 years old in a week, I am twice blessed in that not only was I diagnosed before my condition became severe, but science was able to identify my genetic mutation. This was huge because it meant that my children could be tested. Unfortunately, my daughter has the same mutation and will also develop HCM. The good news is we know what to watch for and she is being followed by a paediatric cardiologist.

    I don’t know that I am afraid of the surgery …. in some ways, it doesn’t seem real. I suppose that will change once I have a surgery date and the countdown begins. For now, my thoughts mostly are about being healthier after the surgery, and about showing my daughter that there are worse things than this disease, even when it is severe. In some ways, I am thankful that I get to go through this so she doesn’t feel alone in the disease and so I can be hope for her future.

    I’m not sure if you will even see this, but I really just wanted to thank you for sharing your experience. I don’t know anyone whose gone through this. I feel I’m rather well informed about the disease, and even about the surgery. My husband and family are extremely supportive, but more in a worry and dote over me kind of way. It is so refreshing to hear from someone who has been through this. I think what I take away most from your blog is that, not only is it OK for me to think about my surgery and recovery, but by doing so, I will be supporting my body in its healing and keeping my mind and spirit strong by focusing on my recovery.

    • Thanks for sharing Janice. You sound like you have a lot of support and a positive attitude, which are key for pre and post surgery. It’s good to hear that you have your daughter to inspire and create the strong will for healthy healing. Best of luck to you. You are in good hands with Dr. Edwards.

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