Duke Clinic, North Carolina

[Fred]

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

[Lisa Salberg]

Re: Duke Clinic, North Carolina

Well.. you rather bet me to this Fred... but thanks

I have been in contact with Dr. Wang at Duke and am happy to say they are setting up an HCM clinic. They have a specific interest in the use of MRI in HCM. Several years ago I met Dr. Wang at the Americal College of Cardiology conference, he stopped at the booth and pulled out his lap top to show me his MRI images of HCM hearts. I was impressed with his energy and his work. At that time he was still in Chicago, I was happy to hear that when he moved his interest in HCM remained with him!
I have received some information on his clinic, they do not yet have a web site but I will be adding there information to the "Links Page" (which I may be remaining to HCM Centers/Links Page).
With a septum of 3.35 it sounds like an ICD may be in your future - tell your wife not to worry ... many of us have been there and are just fine

Best wishes,
Lisa

[Fred]

Re: Duke Clinic, North Carolina

Lisa,

ICD because of the thickness of the septum? Does that put me in the risk for sudden death category?

Please explain.
Fred

[Lisa Salberg]

Re: Duke Clinic, North Carolina

Sorry Fred...
Yeh, the septal measurement does give you at least 1 risk factor for SD. I do not recall the rest of your situation (sorry) so I can only say you appear to have 1 risk factor for SD at this point.
Lisa

[Fred]

Re: Duke Clinic, North Carolina

Thanks Lisa, do you have my any chance those numbers from the meeting around?

[dughr]

Re: Duke Clinic, North Carolina

Hi Fred,

I don't know how old you are but I suspect from reading your letter you are in the "younger" age group with HCM. I have spent the last few months anguishing over surgery vs. ablation and I have way too much information and perspective to go into here, but if and/or when you come to face this decision, I would be very happy to discuss with you my position and how I came to decide on it. I am actually having the surgery in 12 days. I am sure I will have a lot more to add afterwards. Incidentally, I am 38 and also in the "younger" group of HOCM'ers who require medical intervention, (younger has to do with surgery vs. ablation). Great work getting into a group of specialists. I am also in a budding group of cardiologists growing a new practice treating this disease and can probably help you feel comfortable with this aspect of treatment. If you want to know more or would be interested in details, I would be happy to tell you my experiences and also as they develop. Best wishes,

Doug

[Lisa Salberg]

Re: Duke Clinic, North Carolina

Fred... I will look up some of the power points and let you know. FYI just because the septum is large does not mean that you will need septal reduction, the key is obstuction...if you have a "gradient" of 30mm or greater then it is time to consider septal reduction.

Lisa

[Fred]

Re: Duke Clinic, North Carolina

Doug: thanks for the invite. Let me see the doc first tomorrow and then I will take you up on it. BTW I'm 30.

Lisa: Thanks, that would be great, and much appreciated. My last doc told me that I'm obstructed (SAM) and that my gradient was 43.9 mm. But when I asked the MRI guys yesterday, they told me it would take some time to calculate from the MRI's, so hopefully I will find that out tomorrow as well. Tomorrow they will do an echo (don't know why, after doing the MRI...) and they will give a holter monitor to wear. No stress tests at this time

Thanks guys!
Fred

[Sarah]

Re: Duke Clinic, North Carolina

Dear Fred,

The risk factors for sudden death are:
family history of sudden death
personal history of fainting, ventricular tachycardia, and/or cardiac arrest (not to be confused with a heart attack)
an incorrect blood pressure response to a stress test (eg it goes down when it should go up)
a septum over 3cm (30mm)

ICD placement depends on your situation. If (for example) you had lots and lots of vtach and had fainted, but your septum was not over 3, you may get an ICD. However, if your septum is gigantic, but you've never fainted, you may get one. It all depends on your overall situation, keeping these factors in mind.

Please search the board for previous posts about myectomy, ablation, gradient, and sudden death.

Take care,

S
PS I had that MRI done when he was in Chicago. I didn't get to see any of my images, but it sounds great.

[Robert Hartwell]

Re: Duke Clinic, North Carolina

I too was part of the MRI research study done here in Chicago. Just after the procedure, they showed me a series of images that they took looped together like a video of my heart beating. At the time, I was still too new at all of this to fully understand my problems, but it is impressive.

Bob

[Fred]

Re: Duke Clinic, North Carolina

So I was at the Doc on Friday. Had an other Echo done, got my holter monitor put on for 48 hours and then saw the doc.
He is a really nice person, very patient and seemed to respect that I knew a lot of what was going on with me. He took the time to learn more about me as a person and let me ask all the questions I wanted to ask.

He wanted to get a stress test done which I will go in for on the 30th.
He called me this morning and told me that me gradient was 58 mm at the moment. Little bit higher then last time but still moderate.
He wants me to get on disopyramide 2x 100mg/day to start of with.

I asked him about myectomy and he told me that they do the operation at Duke but only about 10/year. He said that he's very happy with the results that he has seen.

So lets see what comes out of the Holter monitor data and how the meds are working out.

Keep all y'all posted!
Fred

[annamc]

Re: Duke Clinic, North Carolina

Fred:

First off let me say that I'm wishing you the best and that if/when you have the surgery, I hope it all comes out with no complications for you.

This thread really interested me b/c your from NC and it said Duke Clinic. Wow! I'm interested in knowing more about this doctor and since I live in NC, may be I could get there more easy. Oh, and I've never had an MRI. It sounds cool, but it took 1 1/2 hours. That's a long time! At least it shows the full picture of the heart though.

Well, I'll go for now, but I'll be looking for that link on the HCM web page,

Anna

[djs]

Re: Duke Clinic, North Carolina

I've only ever had echos and holters done (2 of each) at the non-HCM clinics that I've been to in my 4 years of diagnosis. I'd be interested in knowing if MRIs are becoming a new standard?

[Lisa Salberg]

Re: Duke Clinic, North Carolina

No it is not a new standard, however it has its place in some cases. We can see wall motion better and get some clearer pictures in those with questionable measurements.

Lisa

[Sarah]

Re: Duke Clinic, North Carolina

When MRIs become super cheap (if ever), then maybe someday we'll skip echos and go straight to an MRI. In the meantime, they are mostly reserved for hard-to-call cases and research.

S