Hey guys,
I just wanted to send you guys an update on what's going on with me. After my last visit with my regular Cardiologist, he told me that he could no help me any longer and that he wanted me to go to Duke, he knows a doc there that is trying to become a HCM specialist and want to start a HCM clinic down here.
So I'll be having my appointment tomorrow (Friday 7/11) with Dr. Wang.
Over the last weeks or so I've been getting the regular phone calls reminding me that my appointment is coming up. Then on Tuesday one of the reminders was for a MRI on Wednesday (yesterday). Not remembering somebody calling me that they wanted me to come in for one, I called and was told that they are doing a clinical research program and wanted me to come in and get a MRI done for free!!
So I went there, did the 1 1/2 hour MRI and afterwards sat down with the tech guys to look at the pictures. I only have one word for it. Waaaooow!!
That was so amazing; they could exactly measure my septum (for a first!) And everything was so clear. It's so cool.
Also they noticed that there was connective tissue in my septum, because it showed up in a different shade. This was so worth the time to go there.
If you ever get the change to get an MRI done, do it.
My previous doc (non HCM docs) did echo's and got measurements anywhere from 1.4 to 2.4 cm. The MRI showed that my septum was 3.35 cm!! At least now I know why I have been feeling so bad the last 6 months....
So finally I'm seeing a real HCM doc tomorrow. I'm so excited. You guys have been such a big help in the last couple of months for me. I learned so much from reading the site and talking to people with HOCM.
As I assume that an operation will be in my near future I was wondering if somebody can help me with something. At the meeting in June, numbers where posted about the number of myectomy's done and the success rate and the death rate associated with it. Same for alcohol ablation and the need for ICD implants. Did somebody write those down? I got some but it went by to fast to get them all.
This might help me when I talk to the doc tomorrow, and to calm down my wife Christina a bit.
Strange that I'm not a bit worried about me, and she is... (What does she know that I don't)
Thanks for listening and I'll let you know how it went.
Fred
I just wanted to send you guys an update on what's going on with me. After my last visit with my regular Cardiologist, he told me that he could no help me any longer and that he wanted me to go to Duke, he knows a doc there that is trying to become a HCM specialist and want to start a HCM clinic down here.
So I'll be having my appointment tomorrow (Friday 7/11) with Dr. Wang.
Over the last weeks or so I've been getting the regular phone calls reminding me that my appointment is coming up. Then on Tuesday one of the reminders was for a MRI on Wednesday (yesterday). Not remembering somebody calling me that they wanted me to come in for one, I called and was told that they are doing a clinical research program and wanted me to come in and get a MRI done for free!!
So I went there, did the 1 1/2 hour MRI and afterwards sat down with the tech guys to look at the pictures. I only have one word for it. Waaaooow!!
That was so amazing; they could exactly measure my septum (for a first!) And everything was so clear. It's so cool.
Also they noticed that there was connective tissue in my septum, because it showed up in a different shade. This was so worth the time to go there.
If you ever get the change to get an MRI done, do it.
My previous doc (non HCM docs) did echo's and got measurements anywhere from 1.4 to 2.4 cm. The MRI showed that my septum was 3.35 cm!! At least now I know why I have been feeling so bad the last 6 months....
So finally I'm seeing a real HCM doc tomorrow. I'm so excited. You guys have been such a big help in the last couple of months for me. I learned so much from reading the site and talking to people with HOCM.
As I assume that an operation will be in my near future I was wondering if somebody can help me with something. At the meeting in June, numbers where posted about the number of myectomy's done and the success rate and the death rate associated with it. Same for alcohol ablation and the need for ICD implants. Did somebody write those down? I got some but it went by to fast to get them all.
This might help me when I talk to the doc tomorrow, and to calm down my wife Christina a bit.
Strange that I'm not a bit worried about me, and she is... (What does she know that I don't)

Thanks for listening and I'll let you know how it went.
Fred
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