Congestive Heart Failure

[buckeyefan]

My name is Amy. I'm only 26 years old and I was diagnosed with CHF last year. I've had heart problems all my life and I thought I had that under control. I was born witha congental heart defect and I had a pacemaker put in when I was 3wks old. And I have had one ever since. That, I knew what to do...just go to doctor appointments and have routine surgeries to replace the battery in the pacemaker When I was diagnosed with CHF, I didn't know how to react. I got it because of a virus and when my doctor evaluated me I also had a blood clot in my heart as well as an EF of 10%. I have had a one year check-up since having CHF and there was no change. I've changed my diet and I excercise a little more than I used to. What else can I do? If there is anyone out there that can relate, I would love some advice.

[drauris]

Hello Amy,
Are you seeing a heart failure specialist? If not, find a cardiologist that specializes in patients with congestive heart failure. Look for one affiliated to a hospital with a heart transplant program. How are you feeling? what are your symptoms. I think with an EF of 10% you need a closer follow up.
Auris

[LadyMK]

Hi Amy,
I'm new here, too, and I read your story. I, too, would be very concerned about your EF of 10%. I know that EF is a bit misleading--nobody has an EF of 100%, in fact 50% or 60% is considered very normal and healthy. But 10% is low. It means your body is not getting all of the oxygen (from the blood) that it needs. You are probably tired a lot.
I want to encourage you, like the other post did, to find a heart failure specialist. They work with this kind of thing all of the time and will know the latest meds, treatments, and so on. Regular doctors just don't know that much about heart failure because heart failure is very complicated.
You might benefit from a CRT device instead of your regular pacemaker. That helps some heart failure people--but it does not work in everyone. Meds might work but you'd probably need somebody to carefully plan out a regimen because you'd likely have to take three or four or more drugs. (Another reason to see a specialist!)
Some people with CHF wind up getting transplants but that is pretty extreme. It may be that your condition can be managed with a pacemaker upgrade or some prescriptions.

[azark]

I see you made this post (request) about a year ago. If you still read replies, you might give everyone an update of how you are doing and what you've done in the past year.

I had a doctor, very experienced with CHF, who had a rather controversial theory that the implant of a "regular" pacemaker in a patient who didn't have CHF would eventually "cause" CHF in that patient. This was apparently a result of his observations over a lifetime of treating patients in a small town environment where the patients tend to stick around rather than being transient. He was a real champion for the Bi-V pacemaker, which was only approved by the FDA about 5 years ago. (I used the past tense "had" above since this doctor passed away a few weeks ago from cancer -- a real loss.)

If you haven't already, follow the previous advice about seeking a doctor who has taken extra training and is interested in CHF. He/she may not be a cardiologist, but also may be hard to find. You can do a lot of self-training about CHF by searching the internet. I've done it for the past 20 months since I've been diagnosed with CHF and am still finding new information.

Good luck and let us hear from you.

[biohazmtb]

Amy

I also had a low EF of 13 and was put on a regimen of four different prescriptions. Low dosages at first then increased over a period of three months. Had to follow a strict diet and exercise plan but have improved after a year of following this. I wish you the best. Jerry