Doug

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 sometimes, 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.’”

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. 

But as many will tell you, living with advanced cardiomyopathy and managing a defibrillator and pacemaker is limiting to life experiences. He had to give up all strenuous activities while arrhythmias developed, leading to the need for therapeutic shocks to prevent his heart from stopping.

In the meantime, Doug was adjusting to life with a chronic condition and recently switched jobs. His new manager was unwilling to accommodate necessary changes in his ability to work after the increase of symptoms, including spontaneous loss of consciousness from changes in heart regulation. Because of this, he asked to work from home a few days per week, as he was no longer able to drive safely to work.

“I was met with: ‘If this job is too stressful for you, then you shouldn’t be working.’”

After a few years 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. Not only would a heart transplant be a risky surgery, but it reaffirmed the severity of his cardiomyopathy beyond what he previously admitted to himself.

In January 2017, Doug experienced several episodes of ventricular fibrillation. He remembered his heart beating so quickly that it was unable to adequately pump blood to the rest of his body, indicating that his course of therapy was beginning to fail.

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. After stabilizing on a ventricular assist device, he was too weak to leave the hospital. 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.

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, suggesting he was heavily involved with drugs or alcohol, or didn’t take good enough care of himself. Looking around the cardiac centers, he felt alone in his age and didn’t have anyone to turn to for a sense of hope. 

After all the time he spent in the hospital, the one thing he wished was for more peer support groups 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. While he is currently in remission, the underlying stress of cancer is the cherry on top, as if he wasn’t handed enough complications. 

While he is looking forward to a longer and healthier life ahead, both of his major diagnoses will continue to loom over his every decision. A bit of hope has been restored since changing jobs to kinder, more accommodating spaces that understand the challenges of managing medical complexities an chronic disease. Their commitment to workplace flexibility has allowed Doug to excel in his career. His new heart has grown to welcome his two sons, and a relentlessly loving wife who all look forward to years ahead as a family. 

Tara

You would think that diagnosis would be the easy part of starting a medical journey. After going to a doctor and rattling off your symptoms, they would narrow it down and come up with the underlying cause of your illness. Hopefully, they would be able to treat you. 

For Tara, the road to diagnosis wasn’t that easy. For over half her life, she struggled with a flurry of symptoms spanning across all medical specialties. Hers isn’t a story of limited access or astronomical prices. Instead, it is a story of searching for answers and trying to balance managing her health alongside whatever life would throw at her and her family. 

In 2006, Tara awoke to a “pillow covered in strands of hair.” Over the years, little by little, new symptoms began to appear, including extreme skin reactions, struggling with digestion and maintaining a healthy weight, and overall muscle and bone weakness. She remembered at some points she was too weak to stand or even get out of bed. Tara befuddled the world’s best physicians.

Even the best doctors in New York would refer her to other specialist facilities. Her doctor in New York “reached a point where he didn’t know what was going on and didn’t know what to do,” sending her to the Mayo Clinic. After visiting over ten different hospitals, including world-renowned institutions like the Mayo Clinic, Johns Hopkins, and the National Institutes of Health, Tara had nearly endured every diagnostic test to no avail. 

“The NIH turned to me and said, ‘we think you have chronic fatigue syndrome.’ And I just looked at them and said, “But I‘m not tired. I’m really, really sick.”

Ultimately, after five years of searching for answers and tedious research, Tara’s husband came across a new report that found impeccably similar symptoms to what she was experiencing. Finally, in 2011, shortly after the first diagnostic criteria were released, she found the answer at Brigham and Women’s Hospital. Tara was diagnosed with Mast Cell Activation Syndrome (MCAS). 

Tara began treatment for MCAS, which mainly consists of antihistamines and stabilizers. She quickly found that these treatments didn’t equate to a cure, nor were they significantly raising her quality of life. Her immune system was still failing her.

“Patients know their bodies best. Doctors need to listen better sometimes and not be so quick to say it’s ‘in your head’ because I ran into that a lot.”

Exhausting all options, Tara turned to her stem cell transplant team. Because MCAS is an autoimmune disease, there is debate within the scientific community on whether stem cell transplants can potentially reboot the immune system and relieve symptoms. The science is in its early phases, but at this point, Tara was willing to try anything. 

Tara received two stem cell transplants over the past four years. She recalled not only the physical burden of withstanding an invasive procedure such as these, but also the mental toll caused by the bureaucracy of her insurer and the emotional burden of being thrown into such a complex system. She was required to receive the transplant at a Center of Excellence, which are few and far between. And was assigned a new care team, which required additional testing, new patient intake, and a waiting period of over two years for a procedure date. 

While the first transplant was initially successful, the effects lasted only three months until her symptoms gradually reentered her life. 

“The anaphylaxis stopped, but I was getting skin rashes, hair and nail loss, bad tremors, and I was testing allergic to everything under the sun.”

With minimal options left, Tara and her doctors decided to seek a stem cell donor for her second transplant in hopes that the effects may last longer with the cells of a healthy individual. In June of 2018, Tara had her second transplant and has since spent over a year in and out of the hospital with pneumonia, hemolytic anemia, and Graft-versus-host disease

“And then all hell broke loose… it had me in and out of the hospital from the time of the transplant until June of 2019.”

While Tara is living with these diagnoses and still attempting to seek all means of treatment, she reminded me that life outside of the hospital doesn’t slow down. Bills don’t pay themselves; kids still need to be shuffled to sports; groceries need to become meals; life needs to be lived. And to many, this is the side of illness that hits the hardest.

Though she admits that her life is not what it used to be, Tara has made the absolute best of her situation. Opportunities for strength in advocacy has become cathartic. Tara has championed for research on MCAS and lobbied New York State to alleviate the burden of school transportation for chronically ill parents. She even starred in and co-wrote the music for a documentary with her daughter, Samantha. 

Tara and Samantha will soon be starring in Second Chancea captivating movie that follows the ups and downs of living with MCAS and undergoing her second stem cell transplant. The duo has found a silver lining through singing and songwriting, proving that healing cannot be achieved through medicine alone.