A Story About Claire and Her Two Hearts
This is an excerpt from my eBook The Beginner’s Guide to Nursing: What They Didn’t Tell You In Nursing School
At some point during your nursing career, you’ll question the system . . . a lot.
I’m sure no one told you that this amazing, enormous healthcare system you are now a part of, has a few holes here and there. And you’ll be amazed at the things that can fall through even the tiniest holes!
I was pretty new to nursing when I first started questioning.
First Heart Rejected
Claire was a 14-year-old heart transplant patient and the first night I took care of her she was on day two of a full-blown rejection. And this wasn’t even her first rejection.
Her body had rejected the first heart she received 11 months before. It’s a rare thing for someone so young to be able to have a second transplant regardless of the reason. However, in Claire’s case, everyone knew the reason for her rejection: she hated taking pills and she let everyone know it.
I had been a pediatric cardiovascular intensive care unit (Peds CVICU) nurse for about five years. And before I met Claire, I hadn’t thought about rights or privileges in healthcare at all.
And I had never once considered the cost of healthcare.
The Cost Of Healthcare
As I scrubbed in and geared up to enter Claire’s isolation room, I couldn’t help thinking about the cost of healthcare when an organ rejects.
The expense of an isolation room in the ICU, the disposable gowns, gloves, and masks for every single person entering. Specialty-trained doctors, nurses, and respiratory therapists. The medications and fluids. The machines and monitoring. And all of this multiplied by how many days of care?
My head was spinning trying to calculate the cost.
Our First Night Together
Inside the isolation room, I was shrouded in a yellow gown, mask and gloves, but my alien-like appearance didn’t dissuade Clair in the least. She was spirited and talkative, with clear, ebony skin and searching eyes.
As we spoke, she seemed to have no idea of the connection between why she was here now in the Peds CVICU and her refusal to take her medications at home.
“When you’re a nurse, you know that every day you will touch a life or a life will touch yours.”—Anonymous
Our Second Night Together
By our second night together, Claire was feeling better; the medications were helping, but she wasn’t out of the woods yet. She was chattier than the night before. After her mother headed home for the evening, Claire opened up.
She hated feeling different from her friends. They didn’t have to take pills every day or stay home from school to rest. They didn’t have to wear face masks in public or eat healthy or go to doctor’s appointments. They didn’t have scars on their chests or trouble eating pizza. All she wanted was to hang out with her friends and go to school, and, above all, she wanted a boyfriend.
Claire smiled as she spoke about hiding pills under her tongue from her mother when she checked her mouth. She laughed about running to the bathroom to spit them in the toilet.
She thought she was particularly clever sneaking out of her bedroom window at midnight on Saturdays to meet up with her friends, even though there were times she felt tired, cold, and very alone. She snickered to herself, convinced her mother still didn’t know about the sneaking around.
Questioning the System
Hearing her stories created struggles inside me. How did someone so unwilling to comply with the strict medication and healthcare regimen end up with a second heart? Wasn’t there someone else in line who was more deserving? More willing? More compliant?
Any discussion of healthcare access must include the inquiry of whether or not there is such a thing as a human right to healthcare services in the first place. It seems that the United States is the only industrialized country in the world still grappling with the question. Perhaps the reason for this is that a human right makes no distinction between the deserving and the undeserving and this is where we get tripped up.
A right doesn’t care if you work or don’t work if you want healthcare or don’t want healthcare. It doesn’t care what current medical condition you face or if your current needs are only preventative. It doesn’t care if you take your medications or hide them under your tongue.
Is it possible that rights in healthcare are as much about our responsibilities as they are about our freedoms?
No matter what we do in life to take care of our bodies and our health, at some point we will need the assistance of others for our healthcare. Just like someone who is able to maintain their car, they still require the help of others to maintain the roads and bridges.
Perhaps the truth is that some privileges can only be obtained through shared costs and collective efforts, regardless of whether you’re first or last in the healthcare line.
Second Heart Rejected
One week later, I was wheeling Claire on a cart to the morgue.
Her short and spunky life was over. Her second heart transplant had failed.
As we went up in the elevator to the seventh floor at 2 am, I have to admit that I cried for her.
But I was also thankful that my colleagues—doctors and nurses and medical personnel of all sorts—had worked hard for the last several decades so that we could be ready for Claire regardless of who she turned out to be: compliant or non-compliant, willing or unwilling, first or last in line.
It may take several more generations to sort through the questions surrounding the rights and privileges of healthcare in this county. But regardless of which way we go, I plan to continue working and studying to close the gap between the first in line and the last in line.
Right now insurance doesn’t always cover the good stuff, but if you and I question the system enough, I firmly believe that some good will come of it.
Cheers!
