To know, or not to know ... that is the question

On Wednesday I got a call from my doctor (the electrophysiologist). He wanted to give me the results of my latest heart test (echocardiogram). He also consulted with his colleagues to review my cardiac MRI and to confirm if they really believed I had 'left ventricular non compaction' (LVNC), a rare heart disease that apparently is found in only .1% of the population. The diagnosis of LVNC was confirmed. The echo revealed that my heart is functioning normally ... that's the great news! He indicated that structurally there is thickening of my heart muscle in the left tip of my left ventricle. That's the not so good news as it means there is some damage to my heart. At some time, it will begin to impact the functioning of my heart. The goal is to slow the damaging of my heart. For now, he wants me to begin aspirin therapy (once i get clearance from my hematologist that I don't have any bleeding disorders) and he says they will need to monitor me closely seeing me every 3 - 6 months and running tests to check the functioning of my heart and the progression of structural damage. He reminds me that exercise is good, but no competitive sports or races. The PVCs (preventricular contractions)/extra heart beats which have caused my sleep problems will be addressed at the end of May when I go in for an ablation. The beta blockers i'm taking have been helping for which I am extremely grateful. My doctor does not thinking that the PVCs which appear to be coming from my right ventricle have anything to do with the LVNC in my left ventricle. If they discover during the ablation, however, that there are PVCs coming from my left ventricle that could possibly indicate further deterioration of my heart and increased risk.

So how is all of this affecting me? I'm often asked that, and I often ponder that myself. Surprisingly, I am actually okay with it. This rare LVNC disease is something I have probably had all my life. Somehow, it's 'manifesting' now .... so now I simply know and am aware of this disease. I am also aware that this is a disease where there is so much the medical community doesn't know, and from what they do know, it's a disease with poor prognosis. The reality though is that it doesn't change anything because all I have is today ... all any of us have, is today and this moment. I have a choice on how I choose to accept this latest news. I am also very much alive today and in this moment. I feel very alive and nobody can tell me anything that will change how I feel on the inside. It doesn't mean i'm not cognizant that my heart, structurally, is weakening. But functionally, it's strong and I can keep doing things that will continue to strengthen my heart and my soul.

I admit that I have a new perspective on life ... I am putting everything 'in order' (it's something I should've already one!) ... I met with my estate planning attorney and before I have my heart procedure at the end of May everything will be in order. What an interesting exercise to actively plan for my death and to really think through what is important to me and the legacy I want to leave behind. I know it will give me comfort to know that I have all my matters in order. I also know that every morning when I wake up I am truly grateful .... and I thank God for another day. Today, I am even more grateful because  it is an absolutely beautiful spring-like day here in Minnesota and I have the day off from work to simply enjoy this gorgeous weather ...

"Go within yourself and probe the depths from which your life springs .... " ~ Rilke