Friday, January 18, 2013

From Heart to HAART: Notes From My Personal Journey

Flashback: July 2011. In my last blog as the Natterer, I wrote about my then recent experience with myocardial infarction (MI). I did my best to keep a positive – if not light-hearted – attitude about having what I finally would learn had been a “silent heart attack.”

As I wrote then, my heart trouble had probably been coming on for several years. And I might have seen it coming if I were paying attention to certain changes in my body that I’d routinely dismissed as, well, just what happens as you get older. It was only after a month-long battery of EKGs, MRIs, CAT Scans, radioactive stress tests and multiple blood draws that I got to see a real life Cardiologist for the first time. He finally confirmed that it was indeed most likely a heart attack I’d had.

So I’ve been on medication (Lisinopril, Lasix and Simvastatin) ever since and made many of the “lifestyle changes” that were recommended. As a result I’ve been doing very well according to Dr. Cardio last time I saw him (about 4 months ago – due again in 2 more months).

Still, it's an understatement to say that it's not been quite eventful time since that last blog post.

I finished my Masters Degree, lost the best job I'd ever had and found a much better new one, moved into the most fabulous new apartment, made three fun trips to New Orleans with my partner Anthony who I then put more and more energy into caring for as his health had begun to deteriorate. I ended up taking FMLA leave to stay with him in hospice until, sadly, he passed away of HIV-related diseases on November 11, 2012 (after we'd been together for 8 1/2 years and just days before his 49th birthday).

While trying to do what you can to help a sick and dying loved one it can be easy - and maybe necessary - to forget about and neglect your own health as much as possible. Which I did in those last months of his life. But then, after he died I decided it was time I get a thorough physical exam and catch up on my own health issues. I felt quite healthy, in the physical sense. How bad could it be? 

That's when I learned that I too have been walking around with HIV coursing through my blood for who knows how long?

After the shock of that moment wore off, one of my first (rational) reactions was the thought that I must have picked this virus up in the time since my heart attack. Surely they included  an HIV test when they were doing those multiple blood draws in 2011, right? Since I was never told any results then I must have been negative and had nothing to worry about, as far as HIV goes, right?

For years my Primary Care has been handled at the LGBT Clinic in town and surely my gay doctor there would have ordered the test along with the gazillion other tests he put me through “to rule things out.” Right? Don't we know enough to test any sexually active gay man who presents in the LGBT clinic - especially one whose partner is HIV+ (and who already had lost a previous partner to AIDS)?

Well, the same doc who was good at zeroing in on my heart condition in 2011 is also the one who diagnosed me with HIV on 12/06/2012. According to him no HIV test results are in my records for 2011. And it would not have been ordered, he said, if I didn’t ask for it, as I did last month.

Of course I should never assume that they would have tested me for HIV without my consent. But I also cannot say for sure that I did not consent to a test at that time. I would have definitely said yes had it been offered – I was used to being tested regularly and was overdue for one by about a year. This Doc was also Anthony’s primary care provider and necessarily aware of his HIV status. 

It may be a moot point now but shouldn’t he have thought then to check me for HIV while running tests for everything else?

In fact,  through the fog of that weird time I half remember asking for an HIV test to be included -- and Doc telling me he'd ordered it. It is wholly believable that a test was not done even after I requested it since this same doc told me when doing my recent blood work that he ordered a TB test for me. It is standard practice to test for TB along with Hep A, B, C and many other things in new HIV+ patients. 

Yet, when the bevy of test results came back I saw nothing in my chart about TB, confirming that it was not done (I made damn sure it was done later). 

All this occurs to me now as I’ve been mulling over in my mind every little incident of cold, flu, achy muscles, joint pains and other complaints I’ve had over the last few years. I guess it’s natural to wonder about how long I’ve actually been positive without knowing and if I there were signs of HIV I should have noticed – or that my doctor should have checked for – before now. The fact is that I still can't remember the last time I'd been tested. I am sure I tested several times after Anthony & I got together - for his peace of mind as well as my own. We played safe and it would have killed him to think that he might have passed HIV on to me. I'm truly grateful that he's not around to know about it.

Back to my heart thing -- this was definitely the biggest physical event of my life until now as HIV comes into the picture. I just have to wonder which came first? HIV can be in your system for up to 10 years during its "latent" stage. Did my HIV precede the MI? And was it a contributing or causal factor that should have been considered?

Well, guess what? With little effort I’ve turned up a large number of articles in scientific journals that address questions around HIV and Heart Disease. 

To cite a review of the literature from 2008, Sani* reported that “heart muscle disease is the most important cardiovascular manifestation of HIV infection… likely to become even more prevalent as HIV infected patients live longer.”

His article in Wiener klinische Wochenschrift reviewed a number of studies regarding the “aetiopathogenesis and presentation of HIV related myocardial disease… and measures taken to improve survival.”

If I were to resume writing on the theme of there possibly being an upside to any life threatening condition - including heart disease & HIV Infection - this is definitely where I’d start. 

“Clinical pathological studies from the pre-HAART era show a 30% prevalence of cardiomyopathy in patients with AIDS. The introduction of Highly Active AntiRetroviral Therapy (HAART) regimens has substantially modified the course of HIV disease by lengthening survival and improving quality of life of HIV-infected patients. There is also good evidence that HAART significantly reduces the incidence of cardiovascular manifestations of HIV infection. By preventing opportunistic infections and reducing the incidence of myocarditis, HAART regimens have reduced the prevalence of HIV-associated cardiomyopathy by almost 7-fold from the pre-HAART era.”

Yes, it may be a moot point since it seems I found out my HIV status while I’m still healthy by all measures (except for a pretty low T Cell count at first). But it would have just been nice if my doctor had been on the ball enough in 2011 to test me for HIV then when he put me though all those other tests…

Of course, I'm sot seeing THAT doctor any more!

* Sani, MU (2008). Myocardial disease in human immunodeficiency virus (HIV) infection: a review, Wiener klinische Wochenschrift, February 2008, 120(3-4): 77-87