As comforting as it is to have health insurance, it also can be an aggravating experience when you are dealing with multiple symptoms that can’t easily be explained. Having a rare disease brings an array of manifestations that are like other health issues and because of this you are forced to rule things out all the time. This, of course, requires different testing and unfortunately, insurance companies get the last word. 

During and after my COVID-19 infection, I had an increased heart rate that would come and go. A simple trip to the refrigerator would make my heart rate suddenly jump over 100 bpm and general chores, like washing dishes, would as well. I had heard that COVID can produce a rapid heart rate in some instances, and it can be long-lasting. As for me, it could also be from hemolysis associated with my cold agglutinin disease (CAD). However, mine also had some chest pain, which could be due to the cough I had from COVID. 

After 5 long weeks, my COVID infection started to subside, but I was still left with some tightness in my lungs, sporadic accelerated heart rates, and occasional chest pain. I continued to believe that it was from CAD until the chest pain worsened.

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I have a walk-in cardiac center near where I live and decided I better get this checked out. My health care team did blood tests to check for heart damage and they all came back negative, as did the ECG. However, the pain remained, so I was sent home with a heart monitor for a week. Again, the results came back negative.

This was a couple of weeks ago and I still have this bizarre racing heart and pain that comes and goes. Then I met with my hematologist and we discussed the results from the cardiologists, and I explained my symptoms. I asked if I should see a pulmonologist since my symptoms are not heart-related. My labs showed my HGB dropped to 10 from 10.5; not a big drop but I need to be careful not to go any lower as I start to feel sick when I get into the 9s. At first, he felt that the rapid heart rate is probably associated with my CAD but then realized if my HGB is in the 10s, I shouldn’t be having those CAD symptoms. 

Read more about therapies for cold agglutinin disease

We ruled out my heart as being a source of the pain. I told him about my lung scan that was done after COVID showed scarring. In fact, they asked me if I have asthma, which I don’t, and they believed the scarring was due to COVID. I wondered if the source of the pain and the breathlessness is not due to CAD, is it possible something else is going on? He became concerned and decided that we should check for blood clots. The chest pain, breathlessness, and rapid heart rate could be due to a clot, as CAD patients are at high risk for thromboembolic events. 

He decided to order a lung scan with contrast to take a good look into the lungs to rule it out as it can be life-threatening. He figured I would have it done within the week once health insurance approval which he felt was a non-issue.  Although the idea of having blood clots is terrifying, I was happy to know that he was being proactive. 

A couple of days went by and still hadn’t heard anything and then the insurance company called to let me know that it was in fact denied; they didn’t feel it was necessary based on the information that was submitted and that I didn’t have a condition that they felt warranted it. I explained that I have an autoimmune disease that doubles the risk of blood clots and I had COVID, which can create clots, and since we don’t know the long-term effects, I felt that they needed to reassess. 

Now I need to wait for my doctor’s office to battle with my insurance company. I find this to be very disheartening. We pay our insurance premiums for years while we are healthy and when illness hits you suddenly, they start nit-picking. I am hoping that they can convince the insurance company to run the test or at least a test that’s similar because, in the end, we need to know what is creating these symptoms and blood clots are something we need to rule out.