7/29/10-Back Again

Hi All,

Let's hope I'm not making a habit of this, but I'm back at good ol' UWMC for a few days. I'm in a room I've stayed in before, so this does feel pretty familiar.

Let's start with the reason I'm here...

So you'll remember last Tuesday I had my shocking Sparky adventure which was a result of an episode of ventricular tachycardia (VT). Well, wouldn't you know it, this Tuesday, I had VT again!

I had just gotten to the office about 5 minutes before and was talking to my friend Stacey in my cubicle. All of a sudden, I got super dizzy and felt my heart speed up incredibly fast. I told her "it's happening, it's happening". I could still hear and talk, but I coudn't see a thing. After a few seconds, I felt three firm "thumps" in my chest. That was Sparky using his pacemaker function to override the bad rhythm and get me back to normal. After a few seconds, I could see again, and my heart started slowing down.

Stacey looked at me- wide eyed- and asked what she should do. I told her if I black out to call 911, but by that point, I was pretty sure the episode was over. She later told me she'd never seen me be so serious and direct with instructions. :) I was lucky that Sparky paced me out of the VT before I got a shock. And I was lucky Stacey was there to help if anything went astray! She was so calm and composed, probably not the reaction she would get from me if the situation was reversed. : ) Thanks Stacey!

I called Nick to come get me after my grueling 22 minute workday, and when he got there, Stacey and Lindsay escorted me to my car. I felt like a celebrity with an entourage (or a prisoner being transfer to another facility. One of the two).

When I talked to my doc's nurse, she said I should come in the next day (Wednesday) to have Sparky interrogated and to get a check up. So on Wednesday, we head to UWMC and after the nurse runs the interrogation, the doc comes in and tell's me we need to start me on a new drug, amioderone. It's an anti-arrhythmia drug to help prevent more VT. The downside is it can have lots of side effects-the most common being nausea. Some other long term effects concern the lungs and eyes. So the docs will keep a close eye on all my blood work to make sure those effects aren't kicking in. She also said I had to be admitted for a few days to make sure I could tolerate the drug-so here I am!

I've talked to the docs this morning and everything is going fine with the new drug-I'm not even feeling sick to my stomach. They also decided to add 2 more drugs to my list, so I think that's a grand total of 9 now. Good grief.

While I was talking to the docs this morning, we had a bit of a heart to heart (heh) about the current state of affairs. They are very glad to hear my heart failure symptoms are pretty under control, but my ejection fraction of 18 is lousy. The meds are not improving my heart the way we'd all hoped they would.

I was very upfront as I told the docs plainly that I was ready for something to happen. While I'm thrilled I'm not constantly in the hospital for congestive heart failure symptoms, my life is still not where I want it to be. I can barely work at all, I can't drive, I can't walk for normal distances, and most importantly, Nick and I can't even think of starting a family while I'm like this. Even if we wanted to adopt, I can't chase a baby around the way I am now, and most adoption agencies won't allow a very sick person to apply. So I'm ready to do what it takes to get some semblance of a normal life back.

The doctor agreed that we need to start actively pursuing heart transplant. That doesn't mean I'm getting listed right away, but he is ordering the remaining transplant evaluation testing be done. I may do some of it while I'm here today or tomorrow, or some of it may be done as an outpatient.

His thought was to see what these new drugs do for me for a month or two and then have another discussion in early September. That timeline sounds fine with me. I'm just very glad to have the docs ready to make some changes. I felt like we were beating a dead horse and I was sick of it.

So that's the story for now...I'll keep you posted! The docs expect to let me out of here around 3pm tomorrow so I'll get to spend the weekend at home! Good news.

Thank you all for the sweet notes and messages. You guys are the best!
Love to you all,
Jana