3/13/2010- Trying to gain some perspective

Hi All,

Well, I went to the doc yesterday and yet again, I left feeling like it was an excercise in futility.

As you may remember, the PVCs I've been having have really been messing with me. They are the reason I went to the ER last weekend and I've had more this week. A few weeks ago, I was able to get an appointment with an electrophysiologist today and was so excited to speak to her. She was actually the doc that put in Sparky so that's cool too.

We talked and the bottom line was that she was puzzled, just like everyone else. Although she thought that all my trouble wasn't just being caused by PVCs but maybe also be caused by my heartrate speeding up frequently. That could also cause me to feel my heart pounding and to make me so tired.

The one thing she did say over and over was that I seem to be incredibly sensitive to anything going on in my heart, way more than most heart patients. Which, as she said, is unfortunate. This was proven once again when the nurse tweaked Sparky with a little tiny electrical shock that I was not supposed to feel. I didn't know what she was going to do, but as soon as she shocked me, I gasped from the weird feeling and then saw hundreds of little pinpoints of light in my vision, like a huge swarm of fireflies. While that's cool and all, it's pretty surprising while talking to your doctor.

So after we discussed for a while, she gave me two options:

1) Do a catheter test to see if she can see any particular section in my heart that is causing the increased heartbeat and the PVCs. She'd do this the cath lab and they would inject me with adrenaline to try to get my heart to act up. She could then possibly burn that little section of my heart to get rid of the tissue that is causing the problem. The bad side is that since I feel everything in my heart, this would probably be really uncomfortable and can be dangerous since my heart function is so weak anyway.

2) Start taking a drug called sotolol which is like one of the drugs I'm taking now, except it has anti-arrhythmia properties to it, so it could very well help with the fast heartbeats and the PVCs. The bad part is that it doesn't have the life lengthening properties that the drug I am on now has. Also, I would need to stay in the hospital for a few days after first taking it to make sure I did ok on it.

My thought was "HOORAY! Here are some options that can get me out of this mess!". Yeah, I know that neither option sounded that great, but at least I wasn't being told that I would just have to live with this.

My vote was the sotolol because it would be less invasive than burning off a piece of my heart. Plus, my hope was that I could take it for awhile and then maybe get back on the old drug later, so I could keep getting the long term benefits of the old drug.

Well, the doc was about to admit me to start the sotolol and get this show on the road, when she decided to call my cardiologist, just to get her blessing. Suffice it to say, the blessing was not given. My cardiologist freaked out and said that sotolol was way too risky and that she was not taking me off the other drug.

So by the end of the visit, my cardiologist said I could take a little more of my current drug which may help the PVCs a bit. Yipee. I was not impressed.

I held it together until I got to the parking lot and then cried and cried and cried. I just felt like I was so close to having a solution and then it got taken away. Logically, I know my doctor is right, long term effects are what we have to focus on. But man, it's hard to worry about feel crummy all the time.

After a while I composed myself and then my friend Lauren and I went to dinner and a movie. It was a fun girls night and just what I needed. Thank you Lauren!

Anyway, today is a new day and I have a fresh perspective. My hope is the drug I'm on will start easing up the PVCs and things will start to get better. Better attitude=feeling better! : )

And on that note, I'm going to take a little nap!
Love you all!
Jana