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[Sara-moderator]
Author: Sherry (---.ras11.floca.tii-dial.net)
Date: 05-16-02 16:24
Sara,
I took your advise and spoke to Lisa just before she went to the conferance. I faxed her a few pages of info on Tommy (my hubby). She believes we've been jerked around by our doc here. I looked up the names of the specialists that Lisa told me about and found several studies. Boy!, did I find more info. on HCM! It really irritates me to know that the doc here didn't tell us about the other specialists. I do believe Tommy is at higher risk for sudden death since they did all of these procedures to his heart. He was doing well for awhile. Now he is begining to have some fluid retention in the ankles again, chest pain, and sortness of breath. He does have cp and sob daily, but they are worsening again. Please let Lisa know that I'm waiting to hear from her. We have though over the suggestions that she gave us. I think that the two of you are awesome !! Thank you so much for dedicating the time you do to all of us. It does make a world of differance in our lives! I wish we'd found ya'll a year ago.
Sherry
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[Re: Sara-moderator]
Author: s. beckley -moderator (---.dsl.mindspring.com)
Date: 05-17-02 03:51
Dear Sherry,
I'm very, very glad that you are on track now. You are very welcome...this is what we are here for.
As for getting in touch with Lisa, she is in New Jersey and I'm in Chicago! If you need to reach her, it is best to call the office and make an appointment with Ellen, the HCMA coordinator. Lisa schedules most of her phone calls since she works full time, raises three kids, and runs the HCMA ---and with an ICD!!! She blows my mind.
Keep us posted on your hubby.
take care,
sarah
Author: Sherry (---.ras11.floca.tii-dial.net)
Date: 05-16-02 16:24
Sara,
I took your advise and spoke to Lisa just before she went to the conferance. I faxed her a few pages of info on Tommy (my hubby). She believes we've been jerked around by our doc here. I looked up the names of the specialists that Lisa told me about and found several studies. Boy!, did I find more info. on HCM! It really irritates me to know that the doc here didn't tell us about the other specialists. I do believe Tommy is at higher risk for sudden death since they did all of these procedures to his heart. He was doing well for awhile. Now he is begining to have some fluid retention in the ankles again, chest pain, and sortness of breath. He does have cp and sob daily, but they are worsening again. Please let Lisa know that I'm waiting to hear from her. We have though over the suggestions that she gave us. I think that the two of you are awesome !! Thank you so much for dedicating the time you do to all of us. It does make a world of differance in our lives! I wish we'd found ya'll a year ago.
Sherry
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Sara-moderator]
Author: s. beckley -moderator (---.dsl.mindspring.com)
Date: 05-17-02 03:51
Dear Sherry,
I'm very, very glad that you are on track now. You are very welcome...this is what we are here for.
As for getting in touch with Lisa, she is in New Jersey and I'm in Chicago! If you need to reach her, it is best to call the office and make an appointment with Ellen, the HCMA coordinator. Lisa schedules most of her phone calls since she works full time, raises three kids, and runs the HCMA ---and with an ICD!!! She blows my mind.
Keep us posted on your hubby.
take care,
sarah