Heart surgery

Five things my heart surgery taught me about HIV

I just spent eight days in the hospital for open heart surgery. I had aortic valve replacement and bypass. It was one of the most difficult life events I have ever had to go through. Four weeks later, I’m on the mend, but the scars, real and emotional, remain.

It was a life-changing experience, a series of revelations that showed both my strengths and my vulnerabilities. It has also influenced how I view my own HIV and that of others and where I go next. Here is what I learned:

Glimpses of an earlier era; the 80s revisited

While in the hospital, my HIV wasn’t much of a problem. All the health professionals I met were respectful and indifferent to the fact that I was HIV positive, from the operating room downstairs. Despite this, I had a very exciting experience. Due to a potential infection unrelated to HIV, I was designated “non-contact” for some time, pending investigation. My food was left outside my room. Additional protective equipment appeared. I was devastated; the circumstances seemed too reminiscent of something horrible in our collective past. I cried. I remembered the song “Will I Lose My Dignity” all the time. (And yes, I felt like I lost that, at least for the duration of my stay.) It’s clear that the impact of our story lies just below the surface for many of us.

Our resilience is real and ready for its close-up

I learned about my HIV status before there was effective treatment, when HIV was deadly. I remember thinking back then that HIV was all I could handle. Receiving a diagnosis of subsequent illness was beyond my comprehension, far beyond my ability to manage. This was before “co-morbidities” became a buzzword in our community. Fast forward to 2021, and here I’m dealing with not only my HIV, but also heart disease, not to mention diabetes. I’m doing (sort of) fine. The truth is, however, that serious comorbidities are virtually inevitable as one gets older. Listen: Your resilience is about to be tested. It might be more powerful than you think

My HIV is not serious (your experience may vary)

While in the hospital recovering, I couldn’t help but think about the difference between treating my HIV – one pill a day for many – and heart disease, the latter often requiring severe surgery. intrusive with a prolonged recovery period. HIV is generally less dangerous. In fact, nowhere does HIV / AIDS rank among the top 20 causes of death in Canada. (Heart disease is number one.) Of course, there is stigma associated with HIV, but for many of us, now is the time to ‘speak out against HIV’ as the T-shirts say. . I certainly did, but then I am privileged. Overall, I have come to believe that the response to HIV has not changed enough because it is a potentially fatal disease. Instead, we face the growing danger that HIV will be exaggerated compared to other diseases. This opinion will not win me many friends, I know, but it is the truth as I see it, born of a lived experience that extends beyond HIV. Do not hit the lived experience.

Recovery from heart disease focuses on well-being; we can learn from it

I have found the approach to healing heart disease fresh, engaging, and people-centered, not numbers-centered. In contrast, our focus on HIV treatment may have become too focused on clinical numbers. We have become very focused, for example, on the ability of people living with HIV to become undetectable and, as a community, to achieve the 90-90-90 goals. It is true that this focus has been extremely beneficial for people living with HIV, especially with the advent of Undetectable Equal Intransmissible (U = U). We cannot give up on this, but we can add other goals. I can’t help but think that wellness is as important as achieving an undetectable viral load. Recovery from heart surgery involves a holistic combination of exercise, rest, nutrition, breathing, and mindfulness. Very little of this approach is seen in HIV circles. This is a big gap that only gets a bit of attention.

i need to stop

At 74, I have worked independently in and outside the HIV sector for almost 30 years. I’m proud of what I’ve accomplished, especially bringing U = U to Canada. But the surgery changed me. I need some time for myself now, to enjoy retirement without the frustrations of an industry, at least in Canada, that is spinning its wheels, performing poorly where it matters most. New HIV diagnoses, in particular, are going in the wrong direction. The industry, indeed, needs a reshuffle. I would love to see a new generation of activists take on this task, to help shape a totally different response to HIV than it is today, in fact. Anyway, today I am retiring; it is the turn of the others to try it.

Thank you to all my readers and to my colleagues everywhere. Adios! It was truly an honor to share my thoughts on POZ.com and elsewhere with you!

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