my cardiologist downplays my cardiomyopathy

[mizz_d67]

I'm 45 and was diagnosed with PAC's in '04; was told its not life threatening. A year prior to that I was put on 40 mg propranolol to prevent migraines.In 2010, started having scary strange, pounding heartbeat and chest pains with fatigue. Was referred to a new cardiologist. He did a cardiac-cath and said my arteries are clean as a whistle but EF is 40%. He diagnosed me w/cardiomyopathy (a new word for me). He told me to continue the propranolol and added lisinopril 5 mg per day. I asked him if this condition is what's making me so tired and he said no; acted like its no big deal and said he wanted to recheck heart function in 6 mos. and hopefully the meds will have improved my EF. I went online to find out more; found theres 3 kinds of cardiomyopathy and wondered why he didnt tell me which one I have. At my follow up appt, I asked what kind do I have and because I was so nervous I cant remember if he did(duh). However I do think that i would've taken notice!-This dr. kinda talks in a rambly yet pleasant way and his attitude is like I'm in there for a sprained ankle or something "no big deal"...He told me to double the lisinopril, ordered an echo, and said if my heart function hasn't improved in another 6 mos. w/the meds theres nothing we can do. I'm glad I came across this site because I don't know who to talk to and I think I should get another doctor but would love some advice! All the stuff I've found online about this subject makes me think my condition IS a big deal and I want to be fully informed. Sorry this is such a long post. Your responses will be appreciated!

[grendslori]

You're more than welcome. Come back anytime, also.......find yourself a new cardiologist.

[mizz_d67]

Thank you for your response. I don't know how to pick a best answer. If I did I would pick yours!

[anacyde]

Cardiologists tend not to freak out when they see cardiomyopathy because they see it quite often.  Your EF is 40%, which is definitely impairment in heart function, but you're not in the need-a-defibrillator-now category, and it is possible you could experience improvement on medications.

I would assume you have dilated cardiomyopathy, based on what you've said.  As to your feeling tired, some people feel surprisingly good with an EF of 25%, while others feel rotten at 50%; every body is different, and how you handle cardiomyopathy is not going to be the same as someone else.

This is a great site for the information you're seeking.  Read the forum and I think you'll begin to find a little relief from the understandable anxiety you're feeling right now.

[grendslori]

Cardiomyopathies can be a big deal. There are several different types: Dilated (where the walls are too thin), Hypertrophic ( where the walls are too thick, sometimes causing blockages), Restrictive (similar to Hypertrophic) Post Partum Cardiomyopathy which is like Dilated, Alcoholic Cardiomyopathy (speaks for itself) and Compaction Cardiomyopathy which is now just being recognized. You need to find a doctor who understands the cardiomyopathies and how to treat them, not everyone does. The Mayo Clinic and Cleveland Clinic are two of the top centers for working with patients with cardiomyopathies; also any major university hospital that does transplants; they tend to see a lot of cardiomyopathy patients. The type and severity of your disease determines the treatment which can be anything from the foods you eat and medicines to a transplant as a last resort. (about 5% of patients require transplants). If you have high blood pressure, this can lead to a cardiomyopathy so that would need to addressed. An EF% of 40 is not really that bad; the norm is from 50-70%. If your EF% is 40 then you probably have a dilated cardiomyopahy and have CHF which is a chronic form of heart failure. This is often a form of cardiomyopathy  that is caused by a virus that most do not even realiz they have. My advice to you is to get yourself a new cardiologist; the one you have doesn't sound very good at all!