Preparing for Thanksgiving

Shawn, Zeke and Dave are all busy preparing for Thanksgiving.

Echocardiogram

I just spoke with my doctor at the IU health center about the results of the echocardiogram. The echo showed enlarged heart and decreased cardiac function further suggesting a cardiomyopathy. The big question at this point is where do we go from here? My endocrinologist at University of Chicago thinks that seeing a cardiologist is unhelpful because while there are cadiological problems, there is no direct treatment for them short of treating the main disease. He thinks that the problem is autoimmune so we have to follow up on that.

My doctor at the health center is calling my neuromuscular doctor and a few other doctors to try and see what we can do from here.

New Developments - post from shawn

The good news is that the mestonin increase has helped dramatically in my ability to move my legs, breathe and chew.. The bad news was I had the flu a few weeks ago.  The good news is that I've (mostly) recovered from the flu now.

Unfortunately, for some reason on Friday I started having problems breathing while I was lying down and my weakness progressed dramatically. I went to the IU health center today. After running an ECG (EKG), there was a new red flag, something called atrioventricular block which is a problem with the conduction between the atria and ventricles of the heart. The assumption is that I may have something called cardiomyopathy which is secondary to whatever the underlying disease is.

At this point, I have an echocardiogram on Wednesday morning and I am supposed to stay away from campus for a few more weeks. Other than that, we're going to go see the Endocrinologist at U of C and see where we go from here.