The Diagnosis

So what really happened here?
The Doctors knew early on what was happening, they just did not know why…or how to stop it. We were certainly aware of the known and visible side effects I was having, what I did not know was what was happening that I could not see or feel. The Keytruda went to war with my immune system and knocked it out for the count. My immune system tapped out and laid helpless on the mat while Keytruda steamrolled over it.
Every system in my body was affected. My organs were all enlarged and inflamed and shutting down. Most serious was the enlarging of my heart combined with fluid around the heart that was not draining, My lungs, kidney, liver, pancreas, upper and lower gastrointestinal system, my eyes, my skin, my muscular/skeletal system. I was being treated by 10 different “ologists”. An incredible team.
The problem here was what exactly was the diagnosis. It could have been a few different things. The condition could not be treated until we knew for sure. If they guessed wrong and treated me for A and it was B, they could cause more damage. I needed a highly specialized cardiac MRI. It took 4 days to get that done. There is a waiting list over 90 people long for this MRI…people waiting months. It took some serious string pulling to get me in and it still took 4 days. Time was kinda critical.
The final diagnosis was myocarditis*.
Now that we knew, we could start treatment. Aside from an assortment of pills, I began a course of IV steroids in the form of Solumedrol and Magnesium. These drugs were focused on bringing down that all important Troponin number. I also got shots of Lasix to help drain off fluid as fast as possible. That was fun.
After 3 days of IV steroids, we switched to oral steroids in the form of Prednisone. And then we ran into complications. Oral meds are not as powerful as IV meds so the Troponin numbers started to rise again. Many discussions took place on what to do. Was there another treatment we could try? There was BUT it would have been more dangerous to my already destroyed immune system. Such a balance. We waited it out. The numbers would drop for a day or two and then rise again. The keys was not having the fluctuation in the numbers. Keep in mind the original Troponin that got me to MGH was around 700. In the hospital it rose as high as over 1800. Yikes.


*Myocarditis is inflammation of the heart muscle, called the myocardium. The condition can reduce the heart’s ability to pump blood. Myocarditis can cause chest pain, shortness of breath, and rapid or irregular heartbeats.Infection with a virus is one cause of myocarditis. Sometimes myocarditis is caused by a medicine reaction or a condition that causes inflammation throughout the body.Severe myocarditis weakens the heart so that the rest of the body doesn’t get enough blood. Clots can form in the heart, leading to a stroke or heart attack.