New To List--need info

[Heather Davis]

Hello. My name is Heather Davis and I am very eager for information about HCM. My husband Jose was recently diagnosed and we are trying to figure out how serious this really is. He has a lot of shortness of breath, some dizziness, and much less stamina than he used to have. He has been put on Accupril. Does anyone have experience with this drug? Another question we have involves work accomodations for someone with HCM. Jose is supposed to pack large shipments of publications as part of his job but is finding that too taxing. I am worried that this activity is too stressing and want him to let his employer know so that they can give this task to someone else. Do you all have any advice on this? Thanks!

[Reenie]

Hi Heather. Welcome to our site. It sounds like you are in need of information. I suggest you call Lisa Salberg at 973-983-7429. She can help you with getting in touch with an HCM specialist. Then you will be able to make decisions based on good information. Unfortunately many doctors don't see enough patients with HCM to effectively treat them.

I don't know anything about accupril personally, but I see that it is a drug used to treat high blood pressure and is an ACE inhibitor. I do know that some people with HCM are treated with ACE inhibitors.

As far as Jorge's job, he may have to talk to his employer to scale down the physical part. Many people with HCM are unable to continue to do physically intensive jobs.

Please give Lisa a call. And good luck to both you and your husband.

Reenie

[Heather Davis]

Thanks

Thanks Reenie. I will call Lisa. This is a great site!

[Sarah]

Welcome

Dear Heather,

Please read the rest of this site for lots of info about HCM. The important thing to know is that the vast majority HCMers live a full life span despite what you may hear about sudden death. It is very rare that this happens although it may not seem that way sometimes. While there are a lot of people who have lost loved ones on this board, only about 1-2% of the total HCM population experiences sudden death each year.

It is VERY important to talk to Lisa about doctors and about work. She is an HR director and can tell you how to approach hubby's job the right way.

Accupril is not the usual drug they picked to use first. In fact, some people do not recommend ace inhibitors for HCM. I would be curious to know the rational for this choice.

(bytheway, the risk factors for sudden death are a history of fainting, a history of cardiac arrest, a family history of sudden death, episodes of ventricular tachycardia, and low blood pressure when you exercise. And a septal wall of over 3cm.)

Your hubby should be getting copies of all of his tests, especially the echo report. What does it say?

Take care and keep us posted.

S