Living with angina.

For me, living with chronic angina has been an evolution of perception and understanding.  It’s something you actually learn how to feel over time.  People’s experience of angina (heart pain) is quite variable and subjective.  It’s hard to generalize from descriptions.  Like the pain of childbirth, it’s something you have to feel for yourself and put into a framework you can understand.

My very first chest pain, I dismissed as heartburn, even though it was much more intense and went away much faster than any heartburn I had ever had.  It lasted less than a minute and didn’t trouble me again.  My second cardiac chest pain experience happened two weeks later.  It had the same intensity and sudden onset, but this time it didn’t go away.  In less than 2 minutes I knew we had to call 911 and I was almost completely incapacitated by the pain.  That was my heart attack.

In the days after my heart attack, I had frequent pains in my chest.  In fact the pain was never completely relieved until my last day in the hospital.  This seemed odd to me, as I had cared for many people who received stents during an acute cardiac event who did not complain of any more pain.  I told the nurses and doctors and the docs changed my meds around until I got some relief.  It was Imdur, a long acting nitrate that made the difference.

I remember lying in bed reading while hospitalized and noticing chest pain while holding my paperback book in the air.  When I lowered my arm and leaned the book on the bed, the pain went away.  In my mind, I couldn’t imagine having exertional chest pain  from lifting a book that weighed only a few ounces.  I dismissed it as paranoia.  Similarly when I had pain with emotions, I tried to differentiate between “anxiety” and angina.  I didn’t want to be labeled hysterical by doctors.  Later at an appointment with my cardiologist, I described the pain I was having.  If it wasn’t exertional, he said he didn’t think it was cardiac in origin.  I was confused because the pamphlet in his waiting room clearly stated strong emotion is a known angina trigger.

On my daily walks I would try stretching my arms, back, and chest to see if my pain was musculoskeletal.  Over time, I came to accept that this pain was rarely musculoskeletal and usually relieved by nitroglycerin.  I became certain that emotions could trigger my chest pain after waking with severe pain the night after a particularly bad family dispute involving my stepchildren and having to go to the hospital.

As time went by, I learned the feelings I was having.  I realized that the times I was taking a walk and had this overwhelming feeling that I couldn’t go any farther but no pain or shortness of breath, it was pressure in my chest I was feeling.  The pressure took longer to learn to recognize than outright pain.  I learned that the pinching feelings I sometimes had in my left armpit or elbow while walking were also angina.  Over a long period of time, I learned to trust myself even when it felt like doctors didn’t.  I kept going back to the cardiologist early with my pain to see what else we could do.  He kept repeating the words “maximal medical management” which made me feel I had to accept this daily pain.  As it turned out, I was far from “maximally” managed.  One year and several med changes later, I have less pain than I used to and function better.

It took around a year and a half and many hospitalizations to gain confidence that I knew what was going on in my body.  One cardiologist I saw before I lost my insurance said he expected 2 or 3 hospitalizations in the first year as people learn what is “normal” angina for them and what is unusual.  He made me feel more like a normal patient.

During the following year, my understanding of the sensations of my heart has continued to evolve.  I’m less frightened by angina and have a good feel for what is “normal” for me.  I know what is likely to trigger angina and can avoid some triggers and use my nitroglycerin prophylactically for others.  For example, if I am walking farther than a quarter mile, I use my nitro spray before I start.  This makes pain less likely and when pain does come up, it is easier to treat.

For a while I have known I have what is sometimes called “variant angina.”  This is angina that occurs in the absence of stenotic lesions (narrow places) in the coronary arteries.  In my case, spasm of the LAD has been documented in two of my angiograms.  As far as we know this is what causes my angina.  Another possibility which we lack the ability to check on is coronary microvascular disease, where the small vessels, arterioles and capillaries, do not dilate appropriately with increased cardiac demand.  These are vessels that cannot be seen on a normal angiogram.  The tests needed to check this possibility are only available at a few research centers at the current time.

So for now, I am more at ease with my chronic cardiac pain.  I do hope for advances in treatment to improve my functioning, these would be years away.  In the meantime, we just adjust my medications periodically and I keep using my nitroglycerin.  It’s the best we can do for now.