By Sandy Baker
The message was brief.
“I’m sorry, you can no longer schedule an appointment with your heart failure doctor. He’s working towards retirement. We have several recommendations for you.”
My husband, at the age of 43, has been waiting for a heart transplant for three years. We knew Dr. Young was getting older and moving towards retirement. What we didn’t know was that we’d have to make this potentially life changing decision in the middle of a pandemic.
With hospital policies what they were in the beginning of the pandemic, this meant no face to face meeting with the new doctor for me. My husband was considered “healthy enough” to go to the appointment by himself.
I could have written out a list of questions to ask, but he probably wouldn’t take it.
I could video conference into the appointment, but chances are good I still wouldn’t be able to read the doctor’s face or pick up on queues that, a year ago, seemed so unordinary. A look in a person’s eye, the sigh of resigning themselves to the conversation, or the lack of focusing on the patient at hand.
As the one who asks the important questions, it was worrisome that I couldn’t be there to help him find a new heart doctor. The doctor who would determine when he would move up on “the list” and the one that would manage everything from his heart medications (40 in total at this point) or his stays in the hospital that happen randomly.
A Loss of Control
For the person watching a loved one who needs one-on-one help and support through this life-or-death struggle, and knowing you’re not allowed to step foot into the hospital, it’s incredibly demeaning. No longer was it possible for me to gain that sense of control and confidence in our linked bond through this heart transplant journey.
Months ago, when the world shuttered its doors and stayed home, my only concern was avoiding the virus and keeping him out of the hospital. Now, things were changing. How could I manage yet another loss of control in my life? There was no choice.
The What If Can Overtake Your Mind – and the Pandemic Fuels Those Risks
A new doctor – at a world-leading hospital – is one thing. Coming to grips with the fact that, if he was called for a transplant now, he would step into the hospital alone, was much different.
We were told patients coming in for transplant procedures must come alone. Images of watching my husband step out of the car to head into the hospital for this type of procedure, and not being there by his side as he waited, wondered, and worried kept drifting through my mind.
Just imagine, for a moment, the fear of having to face such a complex surgery – one with high risks and unknown outcomes – on your own.
Finding Faith and Building Trust
Since my husband was diagnosed with heart failure and cardiomyopathy more than 15 years ago, I’ve tried to maintain “control.”
The more info I had, the better.
The more questions I asked the doctors, the better.
Watching his weight, battling periods of swelling, and being there to correct him, was my job.
He received a left ventricle assist device (LVAD) four years ago. Doing the dressing changes, learning how to handle problems, and driving to the hospital in the middle of the night for complications, was an acceptable part of my job in this journey.
Now, months into a pandemic, my control over the situation was changing. I had to empower him to make more of his decisions, even choosing the heart doctor who would lead him on this journey. I had to realize that, even though my life was dramatically impacted by his heart health, it was still his life and he had to make his own path forward.
Today, we’re still waiting and really hoping his heart transplant comes next year, or even further, since he is so stable. Yet, in the back of my mind I know it’s not about having control about what comes and when. It’s about trusting that he cares as much about our future together as I do.
Pandemics bring about so many unique challenges, things we’ve never thought about before.
Yet, they also are helping to build trust in this partnership called a marriage.
Photo by Joseph Chan on Unsplash
