ARVC and ME… looking for a new normal in a FUN physical active world

Screen Shot 2014-11-22 at 8.42.07 AMHere i was in the doctor’s office on Oct. 22 preparing myself to go though the same tests i have already done repeatedly for the last 2.5 years; years of which the cardiologists i had seen up to now could not diagnose me or tell me what is wrong with my heart. But now i have a new doctor who is young and beautiful and very good at what she does Dr Danna Spears at Toronto General Peter Munk Centre. How did i get here? Its a long story but i will make it short: First i want to say that I live my life as good as i can, I eat healthy, drink moderately don’t smoke and exercise is my sanity (run 4 times a week and hit the weight room 2 days a week)… i try to be a role model to my kids so that their lifestyle becomes that of a healthy well adjusted Canadian with a long heathy lifespan ahead of them and here i am trying to show them its possible; On september 13, 2012 i went for my usual morning run (5 AM on the road) i was clicking 11km in 45 min that morning, 1/2 way through it i felt light headed and my heart rate was spiking uncontrollably so i slowed down the pace to a light jog and that was the last thing i remembered . I woke up face down on the pavement bloody from the cuts on my face and knee, the knee was really bad and i could feel the left eyebrow and upper lip throbbing with pain and the blood taste in my mouth was a bit overwhemling; not sure how long i was out for and as confused as ever I jogged my way home. That day did not feel right and at a request of a colleague who listened to my morning event I went to St Mikes’ emergency to check myself in; had an ECG done and the doctor told me i was fine and the faint was due to lack of sleep (that all mothers of young children are custom to) and or lack of fluids in my body. The next day was my day off running but my day in the weight room however that was brought to a halt when i got a call from the family GP advising me not to exercise under any circumstances until i see the cardiologist that woks in her clinic. Now that was worrisome! A week later and very crabby week (as i was not getting my exercise dose of sanity and felt my heart rate spike every time i took the stairs) saw the cardiologist; 2 weeks after that i was diagnosed with irregular arrhythmia and put on a waiting list to see a cardiologist specialist at St Mikes hospital. The arrhythmia was more prominent now and i was put on beta blockers until i get a diagnosis. 2 months later after wearing numerous holter monitors and undergoing an MRI of the heart i was diagnosed with Right Ventricular Tachicardia and was considered a good candidate for Intracardiac electrophysiology study (Wire electrodes are placed in the heart to do this test, these electrodes measure electrical activity in the heart). That seems to have fixed the irregular arrhythmia i was having while exercising or watching a scary movie or under stressful situations or even when flying. Life was good again until the spring of this year when once again i was on my morning run and felt the same symptoms but this time i stopped and instead of light jog i laid down and try to breath my way through the symptoms but it did not stop, it was getting worse at which time I panicked and called my husband and told him where i was before I would passed out. A kind man walking his dog saw me and stayed with me until my husband picked me up. Sigh…. back at the cardiologist and so this entire summer and my last summer as a 39 year old woman was spent doing various tests and feeling totally crappy but to no avail as my condition was so unique based on my cardiologist’s view that I could not be diagnosed. An annual trip to my dentist in september who is a total health nut convinced me to get my GP to refer my case to the Toronto General Peter Munk Cardiac Foundation. So here i was Oct 22 at the Toronto General seeing my new cardiologist at 8 AM while learning from the nurse performing my ECG that this app was a last minute app due to the seriousness of the charts and results that were sent to Peter Munk by the previous cardiologist. Dr Spears gave me two possible diagnosis both genetic but very different from one another; one dealt with the right ventricular muscle deteriorating called ARVC  or Arrhythmogenic Right Ventricular Cradiomyopathy and the other was the electrical system within the heart called CPVT or Catecholaminergic polymorphic ventricular tachycardia (a rhythm disorder of the ventricles of the heart that occurs in genetically predisposed individuals). Long and the short afScreen Shot 2014-11-22 at 8.45.02 AMter my second MRI at Toronto General on Nov. 6 i was diagnosed with ARVC or as i call it the more evil of the 2 diagnostics and i am now schedules for heart surgery on Monday Nov. 24 at which time i will get an ICD or Implantable cardioverter-defibrillator  or the life insurance policy as my doctor calls it to keep me alive if I happen to go into a cardiac arrest. I am sad and very disappointed but this is the only option i have so here I am learning as much as i can on life altering ways that will help me live longer with this progressive heart disease. I am sure you have heard this before but here i am saying it again it SUCK and its NOT fair.

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5 thoughts on “ARVC and ME… looking for a new normal in a FUN physical active world

  1. Ms. MacLean

    Wow. Utterly terrifying, and I echo your sentiments: sucks. Not fair. But I am relieved they were able to offer a diagnosis and treatment before this resulted in irreparable damage, or worse. Chin up. From the sounds of things, you are a survivor. Thanks for sharing. Perhaps there’s someone out there soon to fall victim to this disease and your brave post could be the difference in saving a life.

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  2. Helen Rendl

    We missed you in class today. I’m so sorry to hear that you’re facing this crappy health challenge. Genetics is such a random crap shoot, and it’s unfair that this landed on you. I’m glad you’re doing everything you can to take care of yourself. Sounds like you are in incredible hands and, with your determination, will be back on your feet before long. Keep us posted!

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  3. andreeaph Post author

    Thank you…. i need all the encouragement i can get. I read a couple of forums where people share their experience in the face of this disease and it does help a lot to know that 1 in 5000 is not as rare as the number actually sounds.

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