Occasionally we’ll hear stories about a heart transplant. What you rarely hear is the excruciating story behind waiting for a heart transplant. Kate spoke with Doug from New Jersey about his long, lonely limbo, trapped in the hospital, waiting for a heart transplant. Here’s Kate…
Out of Nowhere
When Doug first experienced heart palpitations, it was easy for him to write off as something related to his lifestyle, like gaining a bit of weight during his first three years of college. As a kid, going to a doctor was seldom the first course of action when illness arose. And plenty of twenty-one-year old’s felt bloated and breathless all the time, right?
After a few weeks hoping the mysterious symptoms might go away with time, Doug gave in and visited a nearby urgent care clinic. He had his first-ever echocardiogram, which would become the first drop in a waterfall of bad news.
“The doctor came back in and said, ‘You can’t do anything. You can’t go up stairs. I don’t want you exercising. You need to get a cardiologist immediately. You have cardiomyopathy.’”
Living in Fear of Heart Failure
The news was shocking, not only because of the prognosis but also because Doug’s father was recently diagnosed with manageable dilated cardiomyopathy. They were never informed that his condition might be genetic, explaining Doug’s increased risk of heart failure.
He would continue at college, finishing his senior year under constant stress that any moment climbing up the university hills could send him to the emergency room. As his condition didn’t improve, he was ordered to receive a defibrillator as his risk for cardiac arrest continued to increase.
Waiting was Unsustainable
But as many will tell you, living with a defibrillator and eventually for Doug, a pacemaker, is limiting to life experiences. He had to give up all strenuous activities and developed anxiety at the possibility of being shocked. In the meantime, Doug was adjusting to life outside of the hospital and changed jobs. His new manager was unwilling to accommodate necessary changes in his ability to work, like working from home after losing the ability to drive.
“I was met with: ‘If this job is too stressful for you, then you shouldn’t be working.’”
After a year of managing symptoms, Doug’s condition wasn’t improving. His doctor suggested looking into a heart transplant and joining the region’s waitlist. He knew it was inevitable, but still a heavy burden to carry. Heart transplant would be a risky surgery, but it reaffirmed the severity of his cardiomyopathy beyond what he previously admitted to himself.
AFIB, Hospitalization & Despair
In January 2017, Doug went into atrial fibrillation. He received an emergency ablation. After the mishandled procedure nearly cost him his life, he would remain in the hospital for three months. During this time, he would continue going into cardiac arrest, even flatlining after the doctors forgot to turn his defibrillator on.
Doug remembered his months in the hospital blurring into one terrible day. He became depressed, unable to leave his bed. Even with a constant stream of friends and family, the experience was isolating. He couldn’t help but feel like a burden. Even with their best intentions, others failed to bring joy into a situation that looked so bleak.
HOPE
When the day came and Doug received the call that a heart was available, it was the first sign that the misery might soon come to an end. While there was relief that he might soon feel fresh air outside of the hospital walls, the road to recovery would be physically draining. He recalled, “there was still so much misery of being unable to sleep and being uncomfortable” adjusting to his new heart.
“There was one day, they wheeled me out to the courtyard, and it was the first time I got to feel the sun in months. And it was that kind of thing that made a difference – when people went out of the way to show that they cared.”
Doug recalled the experience of being a young person with cardiomyopathy as stigmatizing. Clinicians would often ask about the cause of his early diagnosis. They suggested he was heavily involved with drugs or alcohol, or didn’t take good enough care of himself. Looking around the cardiac centers, he was alone in his age and didn’t have anyone to turn to for a sense of hope.
Need For Support Groups for Young People
After all the time in the hospital waiting for a new heart there was one thing he really wanted. He could have benefited from a support group for other young men experiencing this condition. While there were many ways to address his physical and emotional health, his social health took the most significant toll. He longed for a network of young people able to share their experiences with cardiomyopathy and transplants.
“I wish there was a program where young people who have already gone through this to just sit with others awaiting a transplant and chat with them about what to expect, because going through this alone isn’t easy.”
Doug has a long road ahead of him. The medications given after his heart transplant caused non-Hodgkin’s Lymphoma, a rare side effect. The underlying stress of cancer is a major worry, despite currently being in remission.
Looking Forward
Doug has a long healthy life ahead, but his major diagnoses will continue to loom over his every decision. He recently changing jobs, giving him some hope. His new position is in a kinder, more accommodating space that understands the burden of managing medical complexities. His new heart welcomes his two sons and wife who look forward to years ahead as a family.
Kate Pecora is a graduate of the University of Massachusetts Amherst where she studied Healthcare Policy and Political Science. She is an advocate for rare diseases, primarily in the neuromuscular space. Kate has Spinal Muscular Atrophy Type III. She is currently (e)traveling across the country in search of the most compelling stories of patient access, affordability, and quality. Ultimately this will become a book that will educate students on the importance of patient perspective. Instagram Facebook Twitter
From the Editor:
Transplantation may save Doug’s life, but among the risks involved is immunocompromise. Anti-rejection involves subduing the immune system which increases the risks of Covid-19.