Saved by a kidney stone

The story of Ryan

One night in November 2020 I woke up in horrible pain. My wife and I debated whether or not it was ER worthy due to rising COVID cases in our municipality;however, as the pain progressed we made the decision to go. While at the the hospital they took me for a CT scan and once the results we’re ready the doctor came to visit with me. He told me that I indeed had a kidney stone (my first and only one) and that it would be painful but would pass. He then informed me that I needed to see a cardiologist because the CT showed a cardiac mass. 
 

Fast forward a few weeks and I had established care with a cardiologist. I was sent for an echocardiogram which indicated that the mass was inside my heart. This finding lead to me needed a Cardiac MRI in mid-December. The MRI indicated that the mass was about 3 cm in diameter in my left ventricle near the mitral valve. The Radiologist indicated that it was most suggestive of a cardiac fibroma. This fortunately suggested that it was not cancer. My welcome into the world of rare diseases – I soon came to learn that there are approximately only 200 recorded cases in the English Medical Literature.
 

At this point it was an ah-ha moment. Since at least my teenage years in 2004 I had always complained of chest pains, heart palpitations, and a shortness of breathe. In fact, in 2004 my doctor sent me to a children’s hospital for an echocardiogram and stress test. At that time the report mentions a potential artifact in the LV. Fast forward to 2018, the symptoms I had dealt with for years had increased in frequency and intensity. My then doctor sent me for another echocardiogram and stress test. This time the report did not indicate anything; however, I distinctly remember some conversations and concerns about an anomaly in the LV. 
 

I spent the holidays researching and stressing about what was going to happen. In the course of my research I learned that my local University Hospital was home to Doctor who published in 2019 about her treatment with another adult with my condition. I emailed her, thinking it was a long shot, but she immediately got back to me. She explained how she was only an anesthesiologist, not a surgeon, but she shared her colleagues information and encouraged me to reach out. Well, I did a quick google of her recommendation and found out that this surgeon was the doctor who installed the first artificial heart pump and had a plethora of complex cardiac cases throughout his portfolio. 
 

By January 2021, I had my first appointment with this doctor. After reviewing my test results and pictures he stated his professional opinion that we need to remove the mass. His concern was that the mass could create an electric disturbance or could lead to a blockage – both scenarios resulting in death. Thus, we began preparing for open heart surgery. On February 10, 2021 I had open heart surgery to remove the mass. Yes, I wrote this as I’m still recovering. It turns out that the mass was pretty loose and probably wouldn’t have stayed attached for too much longer. It also turns out that the mass was not a fibroma but a cardiac lipoma. The doctor was confident he got it all out. 
 

Only time will tell if my 20 odd years of symptoms subside;however, my wife and I are forever greatful for that kidney stone – it saved my life.