If I wasn't the one who actually spoke with the medical team every day I would not believe for a second that this stuff was actually happening.
What's really bad luck?? Having a bad heart? Yup, I agree. Having a bad heart at age 40?? Yup, that's pretty crappy. Worse was having a bad heart with a 50% chance of those around you also potentially affected.
How about having a bad heart caused by a disease that doesn't normally materialize in the heart? Imagine having a disease that the heart doctors look at and say "ahem... soooo, we're not really sure what's going on, this is not common". Back to describing it as "impressive" but for all the wrong reasons.
So the new "theory" stems from the results of the heart biopsy. The cells taken ruled out myocarditis (recall, damage to the heart due to infection). There is no confirmation on AVRC. The reason they could rule out myocarditis is that this type of damage, inflammation, tends to be pervasive, thus a they don't expect a biopsy sample to "miss" an area affected by potential myocarditis.
Alternatively, ARVC tends to sporadically damage areas of the heart and as such, a biopsy may miss an area affected by ARVC damage. I knew this going in, that the biopsy results may come back inconclusive.
However, they did identify "something". I'm going to assume its damaged cell tissue. This damaged tissue indicates something called Sarcoidosis.
Now, for the record, I have no idea whether this is good or bad. Depending on what website you read (love Dr. Google) this could be amazing!! Treatment for sarcoidosis can completely stop any further damage, issue or symptoms. This could be bad. Typically sarcoidosis affects the lungs or other parts of the body. Rarely does it impact the heart. Rarely does it cause significant damage in vital organs and the literature does not favour these situations.
In so far as how the news was delivered, my favourite resident (recall the "we hope to extend your life expectancy" comment) made me feel like that word, "sarcoidosis" was possibly worse than ARVC and I can't say I had much confidence in the general sentiment. Admittedly she did say that they were reviewing all the information simply because the pathologist (the guy who looks at the heart biopsy) only had limited information in his diagnosis and they want to ensure if they rely on this information that it conforms to all the other information that has been compiled.
So now I wait, starving, waiting for a response as to whether the ICD will occur today and/or whether the sarcoidosis will have an impact on the ICD.
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