Heart Failure_Treatment

[Quinn]

I have not been here in a while. Much has changed. I have HCM, 52 mm left atria, a whole lot of Afib (non focal). First 15 years only rate control and no AF. Last four years increasing AF until I was given Norpace a year ago. Norpace reduced the frequency of AF but it contnues. I am very symptomatic when in AF. Now on 600mg Norpace daily, Verapimil, Torprol, Lasiks, Coumadin. Understand each.

Two weeks ago I thought I was in another bout of Afib. Went in and discovered I was in heart failure. It felt bad. Could not walk, lift my arms, speak softly. They fixed me up and after a couple of days sent me home. Now the question is what next?

I will meet next Wed with my EP doctor who has consulted with my cardiologist and others for options to manage the AF. My challenge is I keep hearing from the PA's and Nurses, and some doctor comments that "treating AF is difficult just with healthy hearts and your heart isn't healthy..." well that leaves me wondering is there some hope for... what I can't even explain.

I imagine I am normal in that I want a fix, I want to live a long time, and I want to not live with this monkey on my back. It is the shock of heart failure, the physical decline I have experienced in the year I have been on norpace, and the lack of optimism (institutional as well as personal) that confronts me now.

What am I looking for? Knowledge and hope...can you share some?

[Sarah]

Dear Quinn,

Afib and CHF are quite treatable but tricky. You are taking just about every type of drug in the book --did you know that? A calcium channel blocker, a beta-blocker and a potassium channel blocker (verapamil, toprol, and norpace in that order)

It sounds like you are at the point where seeing an HCM specialist for an overhaul would be a good idea. Amiodarone, while very strong, is something to consider since Norpace helped someone, a stronger potassium blocker could be a big help. There is another one, too, called dofetilide that has fewer side effects than amio.

My aunt has been in afib for over 30 years and is doing quite well. People can also last a long time with well managed CHF. Truly. You need to see the right people though, the ones for whom this stuff is second nature --check with Lisa to find out who would work best for you.

take care,

S

(I've been on dofetilide and norpace and verapamil and toprol and a few others.)

[Pam Alexson]

Hi Quinn,

Sorry to hear things are tough right now. Sarah gave some great advise, and the call to Lisa is very important , top of the list, as well, a look see by an HCM specialist/s is of unmeausurable value.

Hoping that you will get the help you need. We are all here for you.

Pam

[Linda]

Quin, I'm sorry things are so difficult for you right now. Here's another "Call Lisa" message. She will help you find that Knowledge and hope. I suspect you will receive lots of well wishes and support right here over the next day or so, but talking with Lisa will help you find a good direction and plan. Please keep us posted, thinking of you, Linda