Well here we are at the end of the testing road with a positive diagnosis for Jonathan. It was based on the MRI results which showed a small area of thickness in the septum. Even after a normal echo, it has been determined that he has the disease which should be a concern for all of us. We can implement mass screening programs all we want, the echo is no longer the "gold standard" for diagnostic purposes. MRI should be the only test based on our experience, and nothing else should be trusted as it pertains to borderline cases especially with young athletes. In any event, this should make for a good topic of conversation at next HCMA conference.
So where does this leave us? Well honestly still wondering about everything pertaining to this disease. It's going to take awhile to let this sink in as we haven't told Jonathan the latest results yet. One thing for sure is we don't know who to believe, and this whole sequence of events has us wondering. Ironically the measurement that came up on the MRI was 17mm which was the same value on the very first echo he ever had at our local hospital. Makes you wonder doesn't it? If you don't test you don't bring in revenue, and if you don't bring in revenue you don't have a clinic. Getting approval for any of this from my health insurance company was never an issue, so one has to wonder if this emotional rollercoaster we went on was all that necessary...
For now we intend to live as normal as possible. Reliable risk stratification by the medical community remains a major challenge, but it also stems from the fact that most of the data on risk stratification have been compiled at referral institutions and derived from selected population known to be at high risk. At least Jonathan does not have the signs, the family history, nor symptoms that put him into a high risk category and can probably continue to be active. How much will be the million dollar question. We intend to let him live his life. He's not into the fine and performing arts so trying to change him as a person will be futile. We'll obviously have a serious conversation with him about warning symptoms and so on, but we intend to let him enjoy life as he knows it.
One might say that we're not willing to accept it. Nevertheless, I still believe that more people live normal lives never knowing they have this disease and don't live with a cloud over their heads. I also firmly believe that when you bring testing/screening to healthy people, those who become test positive become sick people...
You can call me crazy but enough is enough. Sign off...
So where does this leave us? Well honestly still wondering about everything pertaining to this disease. It's going to take awhile to let this sink in as we haven't told Jonathan the latest results yet. One thing for sure is we don't know who to believe, and this whole sequence of events has us wondering. Ironically the measurement that came up on the MRI was 17mm which was the same value on the very first echo he ever had at our local hospital. Makes you wonder doesn't it? If you don't test you don't bring in revenue, and if you don't bring in revenue you don't have a clinic. Getting approval for any of this from my health insurance company was never an issue, so one has to wonder if this emotional rollercoaster we went on was all that necessary...
For now we intend to live as normal as possible. Reliable risk stratification by the medical community remains a major challenge, but it also stems from the fact that most of the data on risk stratification have been compiled at referral institutions and derived from selected population known to be at high risk. At least Jonathan does not have the signs, the family history, nor symptoms that put him into a high risk category and can probably continue to be active. How much will be the million dollar question. We intend to let him live his life. He's not into the fine and performing arts so trying to change him as a person will be futile. We'll obviously have a serious conversation with him about warning symptoms and so on, but we intend to let him enjoy life as he knows it.
One might say that we're not willing to accept it. Nevertheless, I still believe that more people live normal lives never knowing they have this disease and don't live with a cloud over their heads. I also firmly believe that when you bring testing/screening to healthy people, those who become test positive become sick people...
You can call me crazy but enough is enough. Sign off...
Comment