[Finally, a good doctor]

Author: Robbyn (---.sympatico.ca)

Date: 09-19-02 09:06

Hi there,

I have finally seen the HCM specialist - Dr. Wigle in Toronto. All I can say what a difference between him and my cardio. Thanks for the recommendation.

First thing he did was take me off Verapamil as he said it is probably making me feel worse. He did talk to me for 45 minutes, but you always think of lots more question afterwards - so I have a few.

He is talking about myectomy or alcohol ablation So I will have to go back over those threads more closely - so I may be back with more questions on that subject. One thing he did say was my left atrium is 'significantly' enlarged. I am wondering what they do for that. And here is a really dumb question but can you have HCM and HOCM. As in the obstruction on the septum and the enlarged heart?

Can anyone give me stats on the probabilty of HCM being hereditary. My Grandmother was told she had an enlarged heart all her life from rheumatic fever.

No one else in my family has this disease so far. SOME of my brothers and sisters have been tested - other don't think is hereditary.

Thanks for your help and take care,

Robbyn

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[Re: Finally, a good doctor]

Author: Sarah B.-Board Moderator (---.client.attbi.com)

Date: 09-19-02 09:52

Dear Robbyn,

I'm very glad you got to a specialist. In reverse order, HCM is hereditary. Period. There are a few ultra-rare cases of someone being the first genetic mutation in the family, but as HCM has been misunderstood and misdiagnosed for a long time, it is more likely that grandma had HCM and her kids just haven't been tested or didn't express the HCM gene (which is also rare, but can happen). The other thing about HCM is that if you have the gene, you can develop signs/symptoms at any time between ages ten and 70 --most often it shows up in the teens and 20s, but the HCMA recommends screening every 5 years as an adult to be safe (1-2 yrs for kids). Your family (all of it) should be screened on a regular basis. I recommend e-mailing them the link to the HCMA home page so they can read about the heredity part for themselves. Also, the HCMA has a great book on HCM, too.

Please read the HCM Overview on this website for a better understanding of HCM and what it means about the structure of your heart. HCM does _not_ mean, actually, that your heart is enlarged. As for HCM vs. HOCM: HCM means that you have a thick septum and/or a thick left ventricle wall. HOCM means that you have HCM and some of the thickness is up at the top of the septal wall and is blocking (obstructing) the mitral valve. This is when a myectomy or an ablation is considered to return normal function to the mitral valve. So it sounds like you have HOCM, a variation of HCM.

As for your left atrium, if you have been in atrial fibrillation for a long time, it becomes enlarged from beating incorrectly. The stress of fibrillation stretches the atrium out; it is doing more work than it was designed for. Unfortunately, there isn't anything they can do about this except try to keep you in rhythm to prevent more enlargement. I have the same problem myself, btw.

take care,

Sarah

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[Re: Finally, a good doctor]

Author: Ruth Yaun (---.madison.chorus.net)

Date: 09-19-02 15:11

Robbyn

That is how I got HOCM or when they called IHSS. I had Rheumatic Fever two times. The last time was when I was a senior in high school..

spent 6 months in the hospital. I am now 59 years old and still living..I am very limited in what I am able to do.. Ruth

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[Re: Finally, a good doctor]

Author: Robbyn (---.sympatico.ca)

Date: 09-19-02 21:43

Ruth,

My grandmother lived till she was 84 in fairly good health. Although I am sorry to hear your activity is limited.

Sarah,

Thanks for the info. It somtimes seems the more info I get morrre confused I become. When he said the left atrial was significantly enlarged I wasn't sure what he meant as I don't have atrial fibrillation.

I do have HOCM and the obstruction is 2.2 which I didn't think was that large as he said there are people there that have 5.0. I have been very symptomatic since March. It seems to take so long to get to the bottom of these matters. I am trying to get ready for the next appiontment and round of questions.

Take care,

Robbyn