Lisa Salberg
12-16-2004, 12:29 PM
Hello to all!
Well I have had a rather busy, crazy, educational and exhausting week! Lets start last Wednesday night. Becca, my daughter, and I were packing to head to Boston for her stress test and MRI. She wanted to try on a skirt in her closet that had been a gift a while ago but was too big. I was thrilled she actually tried on a skirt without me begging! It looked lovely on her. She went to take it off and was in a hurry. She bent over as she unzipped it catching the zipper in her skin! OUCH! We tried unsuccessfully for over an hour to get it off. Needless to say this was very painful and there were a lot of tears. OFF TO THE ER – I gave up! Thankfully there was no wait and they were able to numb her skin and cut the zipper apart and it fell off, amazingly without a drop of blood! We were home at 11:45pm.
Last Thursday Becca and I headed off to Boston for her testing. We had a nice dinner out with Dr. M. Maron and Becca got to show off her hospital bracelet from the evening before. We stayed at the Best Western Inn on Longwood, a lovely hotel next to Children’s Hospital. Becca had a stress test and EKG Friday morning and saw Dr. Charlie Burel. She did fine on her tests and she was ready to see Dr. M. Maron for here MRI. I had forgotten to tell Becca one little detail about the MRI – the injection of contrast agent, well forgot is not the best word, omitted would be more truthful. So she only had but a few moments to dread the needle, and when it was over a few tears were shed but she was just fine.
The images from the MRI were simply amazing. To be able to see the heart in such detail was helpful, enlightening and truly educational. As far as official diagnosis goes, Becca is still officially clear. However, I think this is only because she falls into the category of ‘we have never been able to see this before so we do not know what it means’. Becca's measurements are not typical in all regions of the heart. You would expect to see the thickness of the heart remain equal though out the heart, hers does not. In the basal septal region the wall measurements are 30% larger than all other portions of her heart. At its thickest it measures about 10.3mm not over the 12.0mm which will have all agree that it is HCM. As the remaining portions of her heart walls are an equal .7mm and only the basal septum is 10.3mm is says to me that yes, in fact this is HCM, however clinically there is no literature to back this up. We are reviewing our options and at this time the question is do we treat her for the episodes of inappropriate tachycardia or not. So I am in a state of confusion at this point as to what to do with my own daughter.
Saturday night I was to go to my mother in laws to have a nice quite Hanukah dinner. I had no time to do anything around my own house so I called my mother in law and she packed up the meal and brought it to my house. We had a lovely dinner, lit the candles and them proceeded to decorate the Christmas tree! Not a traditional way to decorate a Christmas tree, but I do not have a traditional family! Sunday was busy too, off to my brother in laws to celebrate Hanukah with the rest of the family. Sunday night I packed to head off to Cleveland.
Monday morning I was off to Packard. I had to handle some items there and run a holiday party for 80 people! OK the party was over and off I head to the airport!
I get there with 20 minutes to spare! Only to get on the plane and be delayed for 2 hours due to snow in Cleveland. After being told a few times that Cleveland had closed the airport then changed there minds and reopened it and after several time changes we finally took off. I landed in Cleveland at 9:00pm
At 7am I was waiting to observe a myectomy. I have written a very detailed account of this and you should all see it in the next few days in your emails!
After a very long, educational and interesting day at the Cleveland Clinic I enjoyed a wonderful evening out with Dr.Lever, his wife, Dr. Lytle and Dr. Kapadia.
The next morning I headed home at 6am and after a day in my office at Packard I made my way home to my own bed!
THE END!
Well I have had a rather busy, crazy, educational and exhausting week! Lets start last Wednesday night. Becca, my daughter, and I were packing to head to Boston for her stress test and MRI. She wanted to try on a skirt in her closet that had been a gift a while ago but was too big. I was thrilled she actually tried on a skirt without me begging! It looked lovely on her. She went to take it off and was in a hurry. She bent over as she unzipped it catching the zipper in her skin! OUCH! We tried unsuccessfully for over an hour to get it off. Needless to say this was very painful and there were a lot of tears. OFF TO THE ER – I gave up! Thankfully there was no wait and they were able to numb her skin and cut the zipper apart and it fell off, amazingly without a drop of blood! We were home at 11:45pm.
Last Thursday Becca and I headed off to Boston for her testing. We had a nice dinner out with Dr. M. Maron and Becca got to show off her hospital bracelet from the evening before. We stayed at the Best Western Inn on Longwood, a lovely hotel next to Children’s Hospital. Becca had a stress test and EKG Friday morning and saw Dr. Charlie Burel. She did fine on her tests and she was ready to see Dr. M. Maron for here MRI. I had forgotten to tell Becca one little detail about the MRI – the injection of contrast agent, well forgot is not the best word, omitted would be more truthful. So she only had but a few moments to dread the needle, and when it was over a few tears were shed but she was just fine.
The images from the MRI were simply amazing. To be able to see the heart in such detail was helpful, enlightening and truly educational. As far as official diagnosis goes, Becca is still officially clear. However, I think this is only because she falls into the category of ‘we have never been able to see this before so we do not know what it means’. Becca's measurements are not typical in all regions of the heart. You would expect to see the thickness of the heart remain equal though out the heart, hers does not. In the basal septal region the wall measurements are 30% larger than all other portions of her heart. At its thickest it measures about 10.3mm not over the 12.0mm which will have all agree that it is HCM. As the remaining portions of her heart walls are an equal .7mm and only the basal septum is 10.3mm is says to me that yes, in fact this is HCM, however clinically there is no literature to back this up. We are reviewing our options and at this time the question is do we treat her for the episodes of inappropriate tachycardia or not. So I am in a state of confusion at this point as to what to do with my own daughter.
Saturday night I was to go to my mother in laws to have a nice quite Hanukah dinner. I had no time to do anything around my own house so I called my mother in law and she packed up the meal and brought it to my house. We had a lovely dinner, lit the candles and them proceeded to decorate the Christmas tree! Not a traditional way to decorate a Christmas tree, but I do not have a traditional family! Sunday was busy too, off to my brother in laws to celebrate Hanukah with the rest of the family. Sunday night I packed to head off to Cleveland.
Monday morning I was off to Packard. I had to handle some items there and run a holiday party for 80 people! OK the party was over and off I head to the airport!
I get there with 20 minutes to spare! Only to get on the plane and be delayed for 2 hours due to snow in Cleveland. After being told a few times that Cleveland had closed the airport then changed there minds and reopened it and after several time changes we finally took off. I landed in Cleveland at 9:00pm
At 7am I was waiting to observe a myectomy. I have written a very detailed account of this and you should all see it in the next few days in your emails!
After a very long, educational and interesting day at the Cleveland Clinic I enjoyed a wonderful evening out with Dr.Lever, his wife, Dr. Lytle and Dr. Kapadia.
The next morning I headed home at 6am and after a day in my office at Packard I made my way home to my own bed!
THE END!