...And the beat goes on.

On March 8th, 2011 I was relaxing in my new apartment when my heart unexpectedly failed. I was taken to the local emergency room in Vineland, New Jersey, where I passed through triage and was taken straight to an available bed while the nurses and doctors called a code. I was in complete heart block. What this means is that my hearts electrical system was not working. No signals were being sent to my heart and telling it to pump. When my vitals were taken, my heart rate was 30 beats per minute. A normal heart rate is 60-100bpm and mine was decreasing speed by the second. I don't remember much except that I was extremely cold and shivering. I was in cardiogenic shock. There was barely any blood being pumped throughout my body, I had a temporary pacemaker inserted and was transferred to Cooper Hospital the next day. There, I was implanted with a permananet pacemaker/defibrillator which has already saved my life by shocking me after I went into a deadly heart rhythm called Vfib.  

We found out the cause of my heart failure was due to desmin myopathy, a rare form of musuclar dystrophy. My heart continued to progressively deteriorate over the next seven years, as well as the rest of my skeletal and smooth muscle. Eventually I will no longer be able to walk. I already can no longer climb stairs without terrible difficulty. I have severe drop foot, I use a wheelchair and foot orthotics for long distances. When I eat I choke on my food due to weak swallowing muscles and many other things that normal people can do, I can not, due to progressive muscle weakness. 

Sadly, a pacemaker/defibrillator is no longer enough to sustain my hearts function and without a new heart I will not survive. After a long battle  with a couple transplant teams, and a devastating denial from a hospital because of the dystrophy, I finally found a team that qualified me to be listed! It took me over 6 months to qualify just to get on a transplant list, and now I am finally to the last step! I am waiting on a  transplant list and my surgery can be any day now! This is all very exciting news. I am nervous, anxious, scared, and happy all in one! However, transplants cost a ton of money and my family will need to travel back and forth to the hospital, pay for food, transportation, parking, hotels and other miscellaneous things during the weeks of my recovery, Some medications are not covered by insurance. No insurance covers all transplant and post-transplant costs and post medical care can add up to $10,000 annually. Please help me and my family prepare for the long road ahead! If you can't afford to donate, please help by sharing my story, 

If you'd rather donate personally you can do so by  mailing to:

11 Alex Drive
Millville, NJ 08332


Thank you so much for all the love and support I've recieved and continue to recieve throughout my journey!

I love you guys!
Julie Mac!