Montreal screening for Jonathan

[Linda]

Bert, thanks for keeping us posted. I hope you soon get this all worked out. In the meantime, you know that we are all thinking of you and the family. I wish I had more to offer, but just knowing that Jonathan is being seen by some of the best is quite reassuring. Linda

[Reenie]

Hi. Boy, it seems the more questions you ask the more confusing the answers get, doesn't it? I know it's hard, but I guess it's still a waiting game. I will continue to keep you all in my thoughts and prayers. Try to relax while you wait. Maybe take a vacation? I know, not likely, but it's an idea.

Reenie

[Bert]

The trip was pretty because we got to see family and Jonathan attended a Canadiens game on Saturday night. Otherwise, we are just as confused as ever. Their findings were once again different from all others with the exception that they all agree that it is definitely a mild form and that it is somewhat difficult to make a diagnosis and that the evolution of the disease will help clarify things.

The summary report of the Echo was as follow:
The leaflets of the mitral valve were midly thickened. There was a mild mitral regurgitation. The posterior and apical endocardial surface have prominent trabeculations and they were not included to measure myocardial dimensions. The maximal end-systolic short-axis ratio of non-compacted to compacted layers was 1.8. There was no focal dyskinesia. The papillary muscles and apparatus of the mitral valave appeared thickened and abnormal. There was a localized hypertrophy of the septum related to an insertion of a false tendon. The posterior wall and septel thickness were within normal limits. There was no obstruction of blood inflow opr outflow. The diastolic function was normal.

RVEDD: 22.5
IVSD: 8.9
LEVDD: 52.2
LVWTD: 8.9
LVESD: 35.6

shortening fraction: 32%
LV mass: 200 gm
Index LV mass: 121 gm/m2
Mitral E wave: 1.34
Mitral A wave: 0.67
Mitral E/A ratio: 1.99
IVRT: 0.08

The way they measure up there is very different from what were used to. So, these measurements may look odd. In any event, what is most confusing is the fact that his first 2 echos talk about concentric hypertrophy and now it looks more like asymmetric. The posterior wall was originally the thickest measurement and now it isn't.

So... Where do we go from here? After speaking with Dr. Maron for at least 1 hour from Canada last night, it looks like it's back to Boston for April 15th. At that time, another echo will be in order as well as and MRI and a thallium stress test. He also would like for us to agressively persue the hypertension issue that Jonathan has had in the past, eventhough his reading are now getting better. A 24 hour ambulatory bp reading seems in order.

We're hanging in there and haven't given hope. As Dr. Maron explained his case is still well within the "gray area" and we need to be patient. Time will tell.

Sorry for the long post, but I just wanted to share. All the best