And the Beat Goes On
A heart-to-heart about HIV, cardiovascular health & self-advocacy
by Rob Quinn
The best practice of HIV prevention and care involves more than programming that targets reducing new HIV infections and achieving viral suppression; it should prioritize creating health equity for all, including Long-Term Survivors (LTS). Health equity entails everyone having the opportunity to achieve their optimal level of health.
We LTS have experiences unique to long-term HIV survival, including extensive antiretroviral use and long-term side effects. Many LTS have served as our own advocates since embarking upon a journey that continues to bring us into new and uncharted territories.
As a twenty-two-year survivor living, and even thriving, with HIV/AIDS, my newest path on this journey involves cardiovascular health. Early signs that something might be brewing began in the summer of 2014 with episodes of shortness of breath and longer recovery periods. Being proactive about my health, and, more importantly, being an expert on me, I reached out to my primary care provider (PCP). Not having any additional acute signs and symptoms, my PCP ordered a baseline EKG and some lab work, all of which came back normal. Knowing my own body and how I usually feel, and having a family history of cardiovascular disease (I lost my dad to congestive heart failure when he was fifty-three), I began advocating for more in-depth cardiovascular health screening.
Over the next few months, I went through a battery of diagnostic tests and interventions, including various stress tests, an initial angioplasty, and resulting stent placement. Findings indicated cardiomyopathy (literally “heart muscle disease”), the worsening of the heart muscle’s ability to contract, which can lead to heart failure. My initial treatment plan included a combination of cardiac medications, cardiac rehabilitation, lifestyle changes and early discussion of the potential need for an implantable cardioverter defibrillator (ICD), a device implanted inside the body which is capable of correcting most life-threatening cardiac arrhythmias.
After three months, repeat tests indicated no significant change in heart functioning. While the good news was that my heart functioning was stable, it was still low. I was now in need of a heart failure specialist.
In November 2014, I made a decision to relocate to Boston, Massachusetts, in large part due to my own need for the more intensive medical care and the support services available to people living with HIV/AIDS, including peer support groups. I wanted to find a provider who was an expert in cardiovascular health and also experienced with HIV/AIDS. I became an established patient at the Institute For Heart, Vascular and Stroke Care at Massachusetts General Hospital and next steps included a cardiovascular health reassessment and review of my existing treatment plan. I had the first of two cardiac MRIs (considered to be the gold standard for noninvasive imaging in coronary heart disease). Again, findings indicated no significant change in heart functioning. My cardiac medications were again adjusted. As with my HIV medications, I was and am 100-percent adherent. Disappointingly, there was no improvement. Additional tests ruled out genetics and thyroid issues. A second angioplasty ruled out additional coronary blockages. These results now confirmed a diagnosis of HIV-associated cardiomyopathy.
My providers were baffled because, despite some of my test results, I had no limitation in ordinary physical activity. At this time my cardiologist, also a heart failure specialist, very strongly recommended and encouraged me to see an EF specialist “just to talk.” EF, or ejection fraction, is the fraction of outbound blood pumped from the heart with each heartbeat.
Upon initial consult with the EF specialist in January 2016, I was found to be a borderline candidate for an ICD. I again self-advocated for more advanced and definitive cardiovascular risk screening. This led to me wearing an at-home continuous cardiac monitor for fourteen days. Red flag! Findings included an irregular arrhythmia. With this new knowledge, I firmly advocated for even more advanced screening and testing. My logic was that if I needed an ICD I would be foolish not to take advantage of the technology now available to me, which hadn’t existed for my dad in 1986. On March 9, 2016, I was admitted to Massachusetts General Hospital for an electrophysiology (EP) study and discharged the next day with an ICD. My PCP, HIV-provider, and others said post-procedurally, “I did not see that coming.”
The takeaway, a heightened awareness of the importance of screening and treating long-term survivors for potential comorbidities and the strengthening of peer support networks. It was my persistent self-advocacy with my healthcare team that eventually led to the diagnosis of HIV-associated cardiomyopathy, and the continued support of my local long-term survivor support group and others that empowers me to successfully navigate through my recovery from HIV-related cardiovascular health challenges. Through a combination of optimal medical treatment, educational interventions and tailored psychosocial care, I am working towards acceptance of my ICD.
Rob Quinn is a passionate, openly gay, HIV-positive advocate and educator. During his twenty-two-year journey as a long-term survivor not only living with HIV/AIDS but also thriving, he has evolved from being an unheard voice to a voice for the unheard. Through local, statewide and national advocacy, education, outreach, and online platforms, he continues to improve the quality of life of those in the HIV community, including his own, by raising awareness, reducing HIV-related stigma, and working towards a future free of HIV/AIDS. Visit his website at: www.OpenlyPOZ.com.