Accepting the inevitable truth is seemingly simple. As a patient recognizing the outcome of heart failure if left untreated was as simple as it comes – I could die. What’s complicated, what’s hard, is living with it. Is figuring out how to live with it. Figuring out what facing your own mortality means.
My story is long. My experience with heart failure vast. I can state the simple facts of what happened to me as I have done many times.
Simply. Plainly. My heart failure journey is as follows.
At 27 years old I was misdiagnosed three times, until an echo revealed I had an ejection fraction (EF) of less than 10% and blood clots in my heart. I was given 72 hours to live, diagnosed idiopathic dilated cardiomyopathy – of unknown cause. With medical therapy, I recovered to 40% EF and a few stable years. Suddenly, I had 2 strokes where again, a large blood clot had developed in my heart , with 28% EF an implacable cardioverter defibrillator (ICD) was implanted. I had three more years of relative stability. I experienced sudden severity of breathlessness and swelling in my ankles, my EF was down to 13%, I was hospitalized and given IV inotropes (IV medication that helps your heart pump) and I was listed for heart transplant in September 2013. In March of 2014, I had emergency Left Ventricular Assist Device (LVAD; artificial heart pump) surgery as it was deemed I would not survive another 6 months, followed by a difficult surgical recovery with 3 severe gastro intestinal bleeds, 2 coils to cauterize the bleeds my intestine. After another 7 months of waiting, I had a heart transplant in October 2014. I spent 8 days in an induced coma because of post-operative complications to the surprise of everyone, and when I finally woke I discovered I had severe delirium and muscle atrophy. Given antipsychotics for the delirium, I started to regain my strength by learning to feed myself and walk again. The pathology on my original birth heart revealed chronic active myocarditis – of unknown cause. Two years post transplant, I started having upwards of 20 heart attack like pains day and night with a clear angiogram in March 2017, I was diagnosed with coronary vasospasm – of unknown cause. While visiting family, I had heart attack December 26, 2017, followed by two full metal jackets (complete artery stents), my transplanted heart had developed fast acting cardiac allograft vasculopathy (CAV) more commonly known as chronic rejection – of unknown cause, where I was medivacced back to St. Paul’s Hospital in Vancouver, where I was emergency listed for re-transplant. I waited two weeks in hospital, where a match was found and I was re-transplanted January 23, 2018. Put on more aggressive anti-rejection medication to protect from CAV, I was hospitalized with shingles for 3 weeks in June because of my more severely compromised immune system.
I am now almost a year and a half from my re-transplant.
Coronary vasospasms began again in February, 2019.
Cause still remains unknown.
Does my ‘heart and soul’ exist independent of my physical heart?
This is a question that I grappled with when I was first diagnosed. And to be completely honest, after you have received the gift of a new life from another person, in my case more than once, this question is renewed as you wake each morning, as you breathe in every extra breath you are fortunate to be granted. My mortality greets me every morning as I say “Not today”.
My hearts have all been gifts. From my original heart I was born with, to the two donor hearts that have extended my life. I live in gratitude, humility, and with purpose.
It is because of my donor hearts that I have lived to experience a life that is truly extraordinary, so can I say that my ‘heart and soul’ exists independent of my physical heart?
The real question is, why should it?
The one heart that has always remained true, is the complete love and acceptance of my husband, family and friends. This is my ‘true heart’ the one that will never die.
My ‘true heart’ has only grown in size, as each new member joins our community looking for support that has truly transformed my own heart failure journey.
I now focus not on my mortality, but on the hope for living with heart failure that has become my HeartLife.