The Tingling of My Heart
Little Did I Know I Had a Cardiac Condition
I never thought that after living with HIV for more than 20 years that I would have to worry about Coronary Artery Disease (CAD).
But there I was, in March of 2004, thinking that I had dodged the HIV bullet after many combinations of therapy, my T-cells stable and viral load undetectable, working at a job I loved, in a long-term relationship of 10 years and pretty happy with my life.
Then one Sunday, I noticed what I thought to be a re-occurrence of peripheral neuropathy (PN), only this time it was affecting my hands and arms. I thought to myself, "You beat it in your legs, so you can do so in your arms."
Except there was a difference this time. It was not constant, and I was feeling the tingling and numbness more in my left arm than the right arm.
Now, I had been through enough health crises over the last 22 years that I pretty much knew, or I thought I did, how to handle most anything that came my way. In 1998 I was reduced to using a cane or wheelchair for months due to the PN in my legs, had been through numerous other neurological episodes, a scare with a lump on my breast, asthma, COPD [Chronic Obstructive Pulmonary Disease, often referred to as emphysema] -- the list could go on forever.
Yet, I was feeling good except for the tingling. After three days of hounding by my partner, I called my doctor's office to get an appointment, described the symptoms to the receptionist, and all of a sudden one of the other docs in the office was on the phone, asking all sorts of questions that I don't even remember now. He wanted me to go right to the emergency room. I assured him that this was not urgent, as it had been going on for so many days, so reluctantly, I was given an appointment for later that afternoon.
After the conversation with the doc, I was a bit worried about what was happening, but continued with my work and left the office a little early to make the appointment.
After my doc examined me and determined that my pulse was normal and blood pressure was good, he decided to do an EKG, which also was normal. After a few minutes, he reappeared with a nitroglycerin tablet, and asked me to put it under my tongue and let it dissolve, and told me to relax and lay down for about five minutes.
When he came back into the room, I was amazed that I felt much better, the tingling was gone, and I felt as though I had regained my usual energy level. The doctor was not as happy as I was. He told me that I needed to go to the emergency room for further blood work and a few tests, and even gave me cab fare, so I wouldn't waste time looking for an ATM to get some cash.
Not thinking this could really be a heart attack, as I had seen plenty of them on TV and knew the tell-tale signs (crushing chest pain, collapse, etc.), I had the cab drop me off in front of the hospital instead of at the emergency room, so I could have a cigarette and call my partner. When I reached him he was about an hour away, coming home from work, so I suggested that by the time he could get to the hospital, I would be finished, and we could go out for drinks and dinner. Call me a denialist!
By the time he arrived, I had been poked and prodded by so many people I was losing count, but it was clear that we wouldn't be going out for dinner.
Within a couple of hours, I was wheeled into a catheterization laboratory, and when all was said and done, we were told that I had 100% blockage in one vein, 80% in two, and 60% in two others, in addition to 80% in a vein in my leg, and would be undergoing quintuple bypass surgery the next morning.
I must say that I am a little foggy about the next two days, but was walking and visiting with family and friends 24 hours after surgery, which was a great relief. The cardiac surgeon told us that I was his third HIV-positive case in as many months.
We were home in less than a week, but I almost had a relapse after opening the mail and seeing the hospital bill ... over $300,000 for a five-day hospitalization, not including doctors' fees! Since I had three unrelated surgeries earlier in the year, my only out-of-pocket costs were prescription co-pays. Thank God!
The recovery was pretty easy for me, though I was extremely weak. I walked a lot to build up strength and then began a cardiac rehabilitation program at the hospital, which I must say, was geared for 70-80 year old patients, not 46-year-old ones, but I kept pushing the limits and was back doing work via e-mail in a week and back at the office in a month.
Fortunately, six months later I was able to have a stent placed in my leg to correct the other blockage, which was by now blocked 100%.
I spent a great deal of time doing my own research, to understand if this was a trend with long-term HIVers, or just the luck of the draw genetically and have yet to come to any conclusions, though surely my smoking didn't help.
I am heartened, nonetheless, to see that there are many studies, such as the MACS study, looking at the issue of increased lipids as a result of HIV protease inhibitor drugs and the effect they have on hardening of the arteries, and a possible increase in incidence of heart attacks among people who are on HAART (highly active antiretroviral therapy). Researchers are also looking at what effect HIV has on hardening of the arteries. Many healthcare providers prescribe statin drugs to reduce your cholesterol levels.
Since many protease inhibitors raise lipid levels, it is critically important that HIV-positive individuals who are on HAART raise this issue with their providers. Regular monitoring of cholesterol is key to assessing cardiovascular risk factors for developing coronary artery calcification, so that you and your provider can take steps to reduce the risk of arteriosclerosis (hardening of the arteries) and reduce your risk of heart attacks. My cholesterol was very low prior to taking Kaletra and has been controlled by Lipitor since 2001. It is now 171, and the LDL (bad cholesterol) level is 92, so it's pretty good. Monitor your triglycerides as well.
If you smoke cigarettes, you should begin the sometimes long process of quitting!
Also, as HIV is now thought by many to be a chronic disease, we need to think about how our bodies are changing, and yes, aging. Cardiac artery disease and heart attacks are more common than we would like to think in people over 40, and the relationship of HIV infection and HAART therapy and hardening of the arteries has not been fully determined yet because longer-term studies need to be done.
Following are a few of the diagnostic tools that your healthcare provider may use:
The significance of findings from ultrasounds, heart scans, and EBTCs should be discussed and evaluated by a cardiologist.
We have lost too many of our friends and colleagues to HIV and AIDS over the last 25 years, so we need to be vigilant about watching out for other health issues that have also taken the lives of many of our friends too early.
All too often when our bodies are reacting to changes, we only think of HIV-related issues, and look at all the side effects and adverse reactions to the drugs we take. Sometimes, we need to look beyond those easy solutions and take a more aggressive approach, and ask our healthcare providers for more diagnostic tests. You should also demand that your provider provide a comprehensive set of tests to determine your baseline, and then monitor progression to avoid unnecessary health crises in the future.
Laird Petersen is Chief of Staff for Illinois State Representative Larry McKeon, an openly gay and HIV-positive legislator.
This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware. Visit TPAN's website to find out more about their activities, publications and services.