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Well we finally after much anticipation made it to the HCM clinic at NEMC. What a day we had! First thing, the 3 of us had our echos done and then the EKGs before noon. After anxiously waiting for the results for the better part of 3 hours, we finally met with Drs Maron, Link and Udelson. Much to our surprise the measurements that they recorded on Jonathan were a lot less than recorded during his first echo. They pointed out that the thicknesses that they saw were in the range of 1.1 to 1.2 cms, not the 1.6 and 1.7 previously recorded. His ejection fraction was 70%, the peak gradients were fine and nothing was unusual on his EKG. In addition, Angela's echo and mine were negative and everything looked perfectly fine.
Could it be? We did talk a lot about Jonathan's unusually high blood pressure readings and high level of activity which had completely ceased almost a month ago. Bottom line is they want more data and really want to see the tape of the first echo. Best case scenario would be that those numbers were properly recorded and that his thickness diminished because of deconditioning because that would definitely rule HCM. Another thought would be that the way the echo was wwrong in the first place and that the measurements from NEMC are true in which case he still has a little bit of thickness but probably due to hypertension and exercise.
Once again, I ask. Could it be? So now we were told to continue deconditioning, get that third reading in Canada at the end of the month, monitor the blood pressure and seek a specialist in pediatric hypertension.
Once again, do I have reason to be optimistic? I'm still nervous and will be until it's final. 1.1 and 1.2 readings could also be early stages of HCM but so far we no history of this condition in our family. I'm afraid of being excited, but I have no reason to doubt Dr Udelson, Dr. Maron and Dr. Link. Do I? This board has been my inspiration the last 3 weeks so I need to know from you guys.
Thanks a lot.
Bert
Could it be? We did talk a lot about Jonathan's unusually high blood pressure readings and high level of activity which had completely ceased almost a month ago. Bottom line is they want more data and really want to see the tape of the first echo. Best case scenario would be that those numbers were properly recorded and that his thickness diminished because of deconditioning because that would definitely rule HCM. Another thought would be that the way the echo was wwrong in the first place and that the measurements from NEMC are true in which case he still has a little bit of thickness but probably due to hypertension and exercise.
Once again, I ask. Could it be? So now we were told to continue deconditioning, get that third reading in Canada at the end of the month, monitor the blood pressure and seek a specialist in pediatric hypertension.
Once again, do I have reason to be optimistic? I'm still nervous and will be until it's final. 1.1 and 1.2 readings could also be early stages of HCM but so far we no history of this condition in our family. I'm afraid of being excited, but I have no reason to doubt Dr Udelson, Dr. Maron and Dr. Link. Do I? This board has been my inspiration the last 3 weeks so I need to know from you guys.
Thanks a lot.
Bert
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