IHSS and CHF

I am a 31 year old female, take 50 mg of Toprol XL daily, and had an AICD device implanted September, 2001.  I was diagnosed with IHSS two years ago, after ten years of symptoms and a strong family history of the condition.  I have read as much as I can about IHSS on the internet, but I have a hard time getting answers from my cardiologist as to how the condition applies to me.  His usual response to a question is,

[CCF-M.D.-RCJ]

Apuller,

Sorry to read of your ordeal.

First, there are experts in IHSS -- now more commonly referred to as HOCM (Hypertrophic Cardiomyopathy).  We have two fantastic doctors here at CCF who deal with HOCM: Drs Craig Asher and Harry Lever.  Both can be contacted thru our website, www.ccf.org.  Other centers also have experts, most notably at the Mayo clinic.  I strongly advise that you seek at least a one-time opinion from a HOCM expert.

Your insurance company is interested in their "bottom-line", as are all insurance companies.  They know that in patients with the generic diagnosis of "CHF", having frequent nurse/doctor/phone contact decreases hospitalization frequency and thus decreases their costs.  One of your doctors must have coded at least one of your visits as being for "CHF", and that is now what is prompting the phone calls.

Now, some patients with HOCM experience severe symptoms of fatigue, shortness of breath, chest pains, and passing out.  Others have no symptoms.  In fact, HOCM is the number one cause of sudden cardiac death in adolescent athletes, the majority of whom have no symptoms before dropping dead (that is why you had an ICD placed).  So it would not at all be uncommon if you never experienced any symptoms or signs, such as weight gain that the insurance company mentioned.

Hope that helps.  But don't just listen to me, seek an opinion from an expert.

[Always curious]

Have you checked out <http://www.hcma-heart.com/>? This is the web site for the Hypertrophic Cardiomyopathy Association. They have a dynamite message board with a lot of people who are experts on HCM. (HCM, by the way, is VERY different from DCM.) I think you would get some good assistance about dealing with the insurance company as well as about locating a cardiologist who specializes in HCM.

Be your own good advocate! And good luck!

[Always curious]

Well, the technology didn't handle the URL I gave you. Let's try it differently! It is

http://www.hcma-heart.com/messages/

I hope this posts well!