Happy rebirthday: What it's like to experience your first pulse in over a year | Point of view
Adrienne Mahoney | for CBC News | Posted: May 20, 2019 11:00 AM | Last Updated: May 20, 2019
Warning: graphic images
Frigid air licks at my exposed appendages. There is a symphony of beeping and dinging in an incessant refrain. Manufactured air sucks and gasps in the distance. Hands are touching a body that is mine, but I can barely feel a thing.
Here we are again: that place I know so well that is called the Cardiovascular Critical Intensive Care Unit, yet I couldn't feel more like a stranger in a strange land.
I am a cosmonaut who has been drifting in the comatose fringes of space for days.
I awake for longer this time and wait for the familiar humming ostinato that is my implanted LVAD heart device reverberating off of the mattress. For a year and a half this constant mechanical whir I awoke to every morning was the tell-tale sign that I had made it through the night. This sound had become my reassurance that I was indeed still alive.
Today though, it is not there. In my fentanyl- and propofol-induced stupor, I panic for a few seconds. Am I dead? Did it finally happen?
No. My body is rocking and swaying ever so slightly. It feels like somebody is gently drumming on my neck. My wrist. My belly. My chest. What is this? I have a pulse again.
I haven't had a discernible pulse for over a year and half. I almost forgot the sensation of an organic form of blood flow, the way a native heart functions without the assistance of a machine.
Wait, this must mean it really did go down. It's coming back to me. I hear the same old countdown: "Breathe out, in, out. On the count of three: one, two, three ..." At that moment, with agonizing force, I hurl a seemingly eternal tube from my throat. My broken sternal bones that have been wired together rip an inferno wave of pain through my body, only intensified by the sheer impact of this violent cough. With watering eyes and sandpaper tongue, I fight to inhale the air in the room.
It is in this very moment it all comes crashing into focus. I have just taken my very first unassisted breath, aided by the stranger's heart that is now inside of my chest.
Happy rebirthday.
To say it has been a wild ride for the past few years would be an understatement. I have an extremely rare autoimmune disorder that is known as EGPA (Eosinophilic Granulomatosis with Polyangiitis) or Churg-Strauss Syndrome. This disorder killed the entire left side of my heart – resulting in less than nine percent heart function.
I was flown on life support to Edmonton in 2017 and it would take doctors and surgeons weeks to diagnose, treat and stabilize me in order to survive. This disorder is typically diagnosed post-mortem in autopsy, so it was rather rare that I was still living. After undergoing multiple open heart surgeries, some bumps in the road and complications along the way, I returned to Regina last year with an implanted device in my heart called an LVAD (a left ventricular assist device). This machine powered my heart, pumped my blood and sustained my life 24 hours of the day. This device is not the same as a pacemaker or autodefibrillator.
I wanted to do everything in my power to survive this risky surgery so that their legacy was not wasted. - Adrienne Mahoney
It is a modern medical miracle, but not without high risk of complications and severity. LVAD's are known as a bridge therapy – either a bridge to a future transplant or a bridge to death. I accepted that my fate was to patiently wait for whatever bridge I was meant to travel over.
As a 34-year-old woman, I would be a liar to say I didn't spend a lot of time coming to terms with these sudden changes. I grappled with my own mortality and the fragility of life and relationships. This machine inside of me gave me the gift of understanding the importance of time and how we choose to use it.
I spent a year and a half training my body in preparation for the day I may get a call for a heart transplant. I needed to be ready for another battle. I needed it to not be all in vain.
It was a way to honour the sacrifice that somebody was going to offer me. I wanted to do everything in my power to survive this risky surgery so that their legacy was not wasted. I spent a lot of time struggling with the array of emotions that comes with awaiting a transplant. I felt guilt, shame, anxiety, and sadness for even needing this huge ask.
On the night of my transplant surgery, a scientist sought my permission to take my heart after it was removed from my body and use it for research. I consented without a second thought, but with one stipulation: I wanted to see it in person and have a moment of closure with it.
During my hospital recovery, I was finally able to arrange this strange and surreal visit. It was to be a funeral for a friend in a way. I felt like I owed it to my heart to have one last goodbye. What lay before me on a silver tray was the twisted wreckage of my heart and the LVAD device. The root of my life was pulled out and lifeless, carved up and battered on the table. I picked it up and felt the cold, dead mass in my hands and struggled to process what was happening.
The little engine that couldn't. A twinge of sorrow for its shortcomings crept upon me. In that moment I wanted that maimed little heart to know that I did not begrudge her efforts along the way. She was an unrelenting warrior despite repeated beatdowns and fought like hell until the bitter end.
I demanded more from that heart than anyone could ever know.
I have an intimacy with a stranger that nobody else can ever understand. - Adrienne Mahoney
I closed the door on that chapter of my life as I gently set the heart back down on the tray and draped the green surgical sheet over her one last time — a funeral shroud to protect her, a final resting place.
I have said a lot of goodbyes over the course of this journey. Goodbye to my family every time I am wheeled into the OR, because the stark reality is not lost on any of us that it might be our last time. Goodbyes to my city, my house, my cat, my friends, the band of brothers I make music with. Farewell to the body I once knew, the physical form of my womanhood and identity I once had. Being fiercely independent was a thing of the past now. There were closed doors to the prospect of motherhood. I had to leave behind the students I taught and the community that nourished my soul. And sometimes even a goodbye to my privacy and dignity.
Yet these self-indulgent and woeful goodbyes all pale in comparison to what I have gained. Strange how this tiny machine inside of me would teach me the most valuable lesson anyone can learn: all we have in this world is the love we give and the love we receive. Every other certainty we cling to of importance is an illusion.
I want people to know that I am not limited by my medical story. It is an important part of my journey, but I don't want to be defined by these narrow parameters. I want to live life to the fullest and take my donor's heart with me on this beautiful and joy-fuelled ride, honouring their legacy in every action.
Now, I never walk alone. I sometimes inadvertently find myself conversing with this unknown hero of mine. I engage in internal dialogues of gratitude: musings about the beauty of something I just saw, the feeling of a new experience I have just had, or some adventure I feel we have just taken together. I have an intimacy with a stranger that nobody else can ever understand. Until my very last breath, myself and my donor are living in tandem. We weave a new harmony together and it is the sweetest sound I have ever heard.
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