Brief Chronology of My Diagnosis

In the fall of 2004 I gradually began to experience shortness of breath at work. At the time, I wasn’t alarmed at all, but I definitely did notice it. You must understand, I am in construction and quite often exposed to extremely dusty environments (many times without respiratory protection). At the time, we had just finished a total gut and rehab of two three-story buildings. Needless to say, I was exposed to lots and lots of dust and debris. I wasn’t aware of any asbestos, but who really knows what’s trapped inside a 100 year old ceiling? The shortness of breath got worse one day when I was using a concrete cutting saw without respiratory protection. It was a stupid thing to do, but I was in a rush and the work needed to be done. I incorrectly assumed that I had just been exposing myself to too much dust and needed to clear my lungs for a while.

A couple of weeks went by and I continued to experience shortness of breath. It just felt like I couldn’t get a full breath of air deep into my lungs without trying hard. And even when trying, I couldn’t get a full breath in every time. At that point, I decided to see a doctor. Of course, to me seeing a doctor meant showing up at “urgent care” and seeing anyone available. I simply didn’t have time to set up an appointment with my primary care physician, which would have taken months. As a matter of fact, I think I had the same primary care physician for 3-4 years and never actually met the guy.

To make a long story short, over a 6 month period, I was in to see a doctor and/or resident maybe 5 times, seeing a different person every time. I eventually tried a completely different emergency room. My diagnoses started with acid reflux, then changed to asthma, then allergies, and finally back to acid reflux. Every time I went in I was hoping for someone or something to help me, but nothing did. The shortness of breath not only persisted, but became slightly worse. Also, new symptoms began to develop. I began to have a general feeling of malaise, headaches, low-grade fevers and eventually developed a dull pain in the middle of my chest (which worsened with deep breaths and while bending over). Finally, early one morning I awoke and simply had had enough. I drove to the Mass General Hospital’s emergency room (known as one of the best in the world) and told them I was having a heart attack. It definitely got their attention. Thankfully, a resident noticed a problem with my heartbeat called a “rub”. I was glad to see that the doctor who was treating me was not an egomaniac. I say this because the doctor overseeing the e-room didn’t notice the rub during his exam and he diagnosed me with acid reflux (again). However, when the resident who initially heard the rub stuck to his guns (I actually overheard them arguing over it), the doctor re-examined me and he too heard the rub. I was then told that all of my symptoms pointed to “pericarditis”. I finally had a diagnosis that seemed legitimate. Pericarditis is an inflammation of the thin sac that surrounds the heart called the pericardium. I also had an “effusion”, which meant that there was fluid buildup inside the inflamed sac as well. The fluid is what causes the rubbing sound.

I was immediately admitted to the hospital and spent 2 days undergoing tests to rule out any of the “bad” things that could cause pericarditis. Almost 90% of the time pericarditis is caused by a viral infection that settles in the chest. The viral cause is actually good since it usually clears up on its own or with the help of anti-inflammatories. The “bad” things that they were concerned about were HIV, rheumatoid arthritis, lupus and cancer.

Eventually, all of the blood tests came back and HIV, rheumatoid arthritis and lupus were ruled out. I was told that cancer hadn’t been ruled out, but the odds of me having cancer were so slight that it wasn’t worth testing for, since the test (inserting a large needle into the pericardium) was so intrusive. I was also told that cancer would have caused more severe symptoms than those that I had.
I accepted the doctors’ evaluation and concluded that I had pericarditis with a pleural effusion caused by a virus that I had had late in the summer of 2004. I did have a virus in summer of ’04 so everything sounded reasonable. Also, I was ecstatic to have a diagnosis that wasn’t dire.

The anti-inflammatory medication worked for a short time. I got relief from the pericarditis, which I definitely did have. However, over time my symptoms started to come back in waves. I brought it to the attention of my doctors, but they just kept prescribing stronger meds and for longer periods of time. They were examining and testing me throughout, but since all of the bad things had been ruled out and I wasn’t losing weight they stuck to the original diagnosis until finally one day in late June of 2005 they noticed a mass (during an echo cardiogram) in the right ventricle of my heart.

I had open heart surgery on July 1st, 2005. They found an unresectable 2x3 cm tumor in my heart, which turned out to be malignant. Furthermore, there was metastasis around my chest. I was diagnosed with stage 2/3 cardiac angiosarcoma.