Wednesday, April 20, 2011

My weary heart ... not just emotionally but physically

Photo from Flickr
So I meet with my EP (electrophysiologist) at Abbott Northwestern Hospital early this morning. Good news and not so good news. The good news is that the PVCs are coming from one area in my right ventricle. They are very frequent but my doctor says are most likely benign. The treatment plan: start on beta blockers and get scheduled for PVC ablation where he will go in to my heart and identify and isolate the exact location of where the PVCs are originating and ablate (or burn) that site. Because of bleeding complications i've had in the past and concern of my doctor of a potential bleeding disorder I have an appointment to see a hematologist tomorrow. My EP would like to know more about what the hematologist thinks and if I do have a bleeding disorder as that will change how the ablation is done. So for now, my ablation is scheduled for 5/31.

And the not so good news. The cardiac MRI done on Monday morning came back showing abnormality in my left ventricle. My EP does not think it's related to the PVCs in my right ventricle. In the medical world, it's considered an 'incidental finding.' I look at him and say, I guess you could say it was a blessing .. kind of like how my heart  PVCs were discovered as I was getting prepped for my MRI guided breast biopsy, and now how this abnormality in my left ventricle has been discovered because of my PVCs. He smiles ... "I guess that's one way to look at it -- a positive way." Then he goes on to tell me more about this 'abnormality' ... my report reads "Abnormal cardiac MRI: prominent trabeculation is seen in the apical third of the L ventricle, meeting criteria for noncompaction of the left ventricle." He goes on to tell me that this is a rare heart disorder, and affects only 1% of the population. He tells me though that he wants to consult with a few more of his colleagues to confirm the LVNC (left ventricle non-compaction) diagnosis and also wants me to have another test (an echocardiogram). Either way my LVNC diagnosis will be confirmed or I will be borderline and will need to be monitored closely. It's a serious disorder and prognosis is often fatal (severe heart failure, systemic embolism, arrhythmia or sudden death). They believe it's a genetic disorder. There's no specific therapy for LVNC but one that seems to help is aspirin therapy as those with LVNC are at greater risk of developing blood clots due to blood being retained in the heart. Interestingly, it appears that i've had problems with my blood clotting after past MRI guided biopsies.

So I sit here at home and the reality of all my EP has said is starting to sink in ... I am at risk of sudden cardiac failure. I guess, if i'm going to have to go at least it will be quick. I'm going back to the hospital for an echocardiogram on Friday. My EP wants another view of the abnormal area in my left ventricle. He also wants to see if and how much of my heart muscle has been damaged or weakened.

My EP was absolutely wonderful, thorough, compassionate and spent over an hour with me explaining everything to me and listening to me. He did his best to not scare me with the LVNC diagnosis but he also needed me to know the seriousness of this disorder. I wanted to ask him, "so how much time do I have?" But I decided not to, because the truth, none of us really know how much time we have left on this beautiful planet. Maybe it's a blessing that i've been made aware of how short and precious life is, and that my weary heart could go out on me any time now and I need to live life as fully as possible.

With this being such a rare disorder there unfortunately isn't a specific therapy .. there are drug therapies (beta blockers) and aspirin therapy ... the drug therapy is an attempt to strengthen and regenerate the heart muscle; the aspirin therapy to prevent risk of blood clotting. In the end, if the heart muscles are severely weakened then a transplant is an option. So on Friday i'll take a test to see just how damaged my heart muscles are ... for now my EP says no competitive sports, no marathons or even half-marathons. Yes, I can exercise but need to do so in moderation.

Today ... I am working from home and spending time with my precious Ahnung, Missy and Mister. My heart is weary ... emotionally and physically. But I am grateful for all that I have in my life ... for my friends, family, community ... and for knowing that each day I live my life with purpose and meaning.

There was a quote being passed around on facebook yesterday ... i posted it on my wall as it resonated with me on a deep level ... I need to remind myself again today, of this beautiful quote:

"Forces beyond your control can take away everything you possess except one thing, your freedom to choose how you will respond to the situation. You cannot control what happens to you in life, but you can always control what you will feel and do about what happens to you."
Victor Frankl, Auschwitz Survivor"


  1. Arrrrgh, Marilou. Such frustrating news. I guess I will never understand why good people who try hard to maintain some level of sanity are often on the receiving end of such ugly things. It's kind of a piece of a puzzle that we will never finish. Perhaps not finishing the puzzle is a good thing--it leaves open a LOT of possibilities.

    I have no real helpful advice for you as I cannot even imagine what you must be dealing with in your own mind. If there is anything you think I may be able to do for you, don't EVER hesitate to ask.

    Live each day as if it were on purpose.


  2. Nicole, thank you for your note and for continuing to support me through my health journey. You too have been and continue to go through a lot and I wish you continued strength and peace as you walk your journey.

    I agree with you that we will never ever really finish the puzzle ... and I do think that is a good thing. All we really have is now, this moment. We don't know what tomorrow holds for us. Whatever lies ahead of me what I do know is that I am blessed today and I have no regrets. I have an absolutely incredible life today and am surrounded by the most loving beings (two legged and four-legged) ....

    Enjoy the beautiful spring day here in Minnesota <3