Seeking Information On Heart Arrythmia

My sister has been having problems with heart arrythmia for some years now. She’s had a pacemaker and defibrillator installed about 5 years back, and unfortunately the defib has had to fire several times since. Oh, and since I’m sure it will come up: she’s mid-50’s, history of heart issues since her 30’s, not overweight, no high blood pressure, no health issues I’m aware of other than the heart problem (isn’t that enough?)

She called me from the hospital in Buffalo yesterday quite upset about a number of things, most of which are irrelevant to this post. However, she did say medication was no longer controlling the arrythmia, the side-effects were getting intolerable for her, the procedure a couple months ago when they tried to locate and cauterize the faulty bit of heart tissue causing the problems didn’t work, and they’re transferring her to the Cleveland Clinic because, I presume, her docs are running out of ideas. (Yes, she does have good health insurance, yay for that.)

Obviously, the situation is very serious. I’m not going to flinch from that. I’m all too aware that if it weren’t for modern medicine we would have lost her some time ago and that, with this condition, sudden death, or relatively quick death, is always a possibility.

What I’m curious about is what, if anything, can be done from this point? Other than medication, what is there? Googling isn’t terribly helpful, as I just don’t have the energy to spare to sort through the info-dump that results. While sympathy and best wishes are always appreciated I’m hoping some of our medical Dopers can help me out here, either with info or pointing me to reliable sources on the internet as opposed, well, the rest of the internet.

As I’m on my way to Buffalo today and will be there at least through the end of the week (taking care of things there so Sister doesn’t have those particular worries, it’s something I can do to help her) I may not be able to reply to this thread for some time even though I should be able to read it. So thank you in advance for anything you can give me.

Need more info on what particular type of arrhythmias she’s had (I assume more than one since she’s got a pacer and defib in situ) along with more info on the type of pacer/defibrillator. Is the pacer biventricular? Does she have heart failure? What’s her ejection fraction? Other associated heart disease? Infarct, coronary lesions, valve trouble?

I apparently have a type of Arrhythmia that bores heart specialists to sleep. And if I understand my doctors, Arrhythmia is neither a disease or condition; it’s a symptom.

I’ve been to two different specialists (both well noted in this region) and each of them said, “yes you have funky heart beats. Come back next year and we’ll look at it again.”

I take medication for it but sometimes it will occur and sideline me for periods of a minute to 15 hours.

My last specialist said that I have two or three different “expressions” of Arrhythmia.
Skipped beats, rapid beats, fluttering, I get them all. Never to the point of total disability. I don’t pass out or collapse but I can definitely tell that my strength and energy levels drop to about 60%.

The specialists said that pretty much everybody gets an episode of Arrhythmia now and then but their hearts re-synch so quickly that all they may notice is the feeling of a a slight flush. His exact comment,“Everybody gets these, you just get them more often.”

I know I can’t help you or your sister with any advice other than to let you know that there is a wide range of impact for people who have Arrhythmia. Some of us like your sister are severely affected and some of us like me are more or less just inconvenienced by it.

Don’t know.

No.

Don’t know.

Familial hypercholesteremia.

Not to my knowledge.

No valve problems, but apparently they found some scarring on the outside of her heart which they “took care of”.

They did a crapload of tests at the Cleveland Clinic, then spent 7.5 hours working on her in the procedure room (I’m presuming some of that was the usual hurry-up-and-wait of hospital stuff, but it does seem a rather long time). Apparently they’ve got things under better control now, but they also said it would be 6-8 weeks before they knew for sure what the results would be.

Sister sounds a lot more upbeat, although she also mentioned feeling like she’d been beat up and hit by a truck (apparently they had to “punch a hole in her chest” to get at the scarring on the outside of her heart)

Glad she got a fix, Broomie. Hope it pans out for her.