4/1/2010- A good day's work

Hi All!

Since I haven't updated in a while, I thought I'd write up a little note.

As I said before, no news is good news, and it is!! I haven't had too much groundbreaking news to share lately, so I've just kept busy with normal, everyday stuff. Like errands. I'm a fan of errands. There is nothing better to me than having a list of things to do (pick up dry cleaning, drop off library books, go to the post office, etc), doing those things, and coming home after a productive day. I feel so dang accomplished. Like I'm a pioneer and have plowed the field, shot a bear, made a peace treaty with a native American tribe leader, and am finally home to put my feet up and watch Grey's Anatomy. A good day's work, wouldn't you say?

So I did have a doctors appointment this Tuesday. It was my first appointment in two weeks (the longest I've gone since OCTOBER. Yeah baby!) and all was mostly well. My labs looked good, heart sounded good, doc was happy. : ) My blood was waaayyy too thin, so we are trying to fix that so I quit bruising like a peach. So we'll have to postpone the fight club extravaganza we had planned for this weekend. Blast.

I do have some kind of pulmonary test next week which will tell us how much my heart is effecting my activity. I'm not too sure why I need this- shouldn't I be able to tell that by how far I can walk without grabbing the wall? Oh well, I'm not a cardiologist, I just play one on TV. The one good thing is it will probably show my heart is pretty weeny and that will be helpful in proving to my disability insurance company that I really am sick. They keep thinking I'm faking it I think. Then they get a copy of some lab that shows my heart looks like a 70 year old's and they shut up for a few weeks. Bah, insurance! ; )

Let's see what else is going on....Ah, did I tell you I've been going to counseling? I'm not sure that's the kind of thing you're supposed to put on a blog, but whatev. I've told you guys most everything else. Plus, I'm not ashamed of it- I'll shout it loud and proud! I was just feeling really overwhelmed and I do mostly keep a stiff upper lip and sometimes you just need to be able to whine to someone you are paying. :) They have no vested interest as long as the insurance claims go through! It's been good and I have been feeling tougher emotionally lately which is awesome. I was crying at the drop of a hat there for awhile. But getting better now!

In other news- Nick's cousin Derek is in town visiting and we are having a great time with him. The guys have seen every tourist trap this town has to offer, and then some! : ) They have also done a lot of cool stuff too (like going to Vancouver, BC today. Lucky!). I've gone along to some of it (like San Juan Island last week) but not everything because I still do get tired pretty easy. But it's been a ton of fun having Derek here. Love it!

Well, I hope you all have a wonderful Easter and I love you all!!
Talk to you soon!!

3/16/2010- Smiling again!

Hi All!

Well, the last few weeks have been a bit of a bummer, but I'm happy to report that I'm doing good! I haven't had an "episode" in over a week now and yesterday I had a good doctors appointment! Holla!

Yesterday the labs were good, I didn't have fluid around my heart or lungs, and I wasn't having PVCs! The doc was so happy with that she increased the all important beta blocker, which makes me feel even better. Ha, take that heart failure!

Obviously, I'm in a much better mood too. : )

The doc says that while I'm on the upswing here, we'll keep increasing the meds and hopefully, that will give me a little more energy. The beta blocker is the one that makes my heart pump more efficiently, and every bit of efficiency means I have more energy to do things, rather than using all my energy just to have heartbeats. And I have to say, "doing things" is one of my favorite activities!

In other news, who is watching American Idol? I am so on the Crystal Bowersox train, but am also on the Sioban (Siobougn? Siobogn? Chavonne?) Magnus train. I told Nick last night that I know I love them both because I could listen to either one for a full hour and half concert. I can barely do that with ANY singer at all, so that's a big compliment! It also may be a small sign of ADD. Hmm.

Well, I hope I have no reason to update you all for awhile! Remember, no news is good news!

Love you!

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!

3/7/2010- In which you learn about PVCs

Grr. Last night was a real bummer-o-la.

Let me give you a little background on what's been going on...

I've been having these episodes where my heart will feel like it's beating so hard it knocks me around, I can't breathe well, and I get dizzy. I've almost gone to the hospital at least 5 times, but I just waited it out and 5 or 6 hours later, it would go away. We've actually been on our way to the hospital a few times when I have Nick turn around because I start feeling better.

I've told my doc about this several times and that's what lead to the King of Hearts monitor. She wanted to see what my heart was doing during these episodes. I had an episode the day before my last doctors appointment, so she got to see exactly what had happened. And it was pretty anticlimatic. All she saw were a bunch of PVCs (Premature Ventricular Complexes) which are also called "skipped beats" or "irregular beats". Everyone keeps telling me the PVCs are not dangerous at all unless they happen every other beat or every three beats or something.

My concern has been that when I have an episode like this, it stops me in my tracks. I have to lay on the couch and all I can do is listen to my heart pounding, try to breathe, and not move. It's pretty lousy.

So on to last night- I decided I was sick and tired of this craziness, so I went to the ER. I was having "an episode" and had just been feeling lousy all day. My chest had also been hurting a bit so when I told them that at the registration desk I got the speedy check in routine. I was in a bed getting an EKG within 5 minutes.

Surprisingly, the EKG said I was having a severe heart attack! Then they adjusted the tabs and saw I was ok. Just a little ER practical joke I guess. ; )

All my tests and labs came back normal (for me) although they saw me having the PVCs all night. After 3 hours they decided they couldn't really tell why the PVCs were effecting me so strongly. I almost started crying from frustration. The ER doc literally said "well, we don't know why you're feeling so bad, so I guess you should just go home". Barf.

But then the cardiologist came down (A very nice man who'd worked on me at one of my previous stints in the hospital) and we talked about how rotten I was feeling. I learned that the PVCs are essentially a nerve in my heart freaking out, and that causes the muscle around it to twitch. And the muscle happens to be my entire heart. Since my heart is so beat up anyway, it makes sense that any extra work (this twitching) could really have an effect on me.

I told him we have to find a solution for this- I just can't accept the answer that "it's just the way it is". He said we can tweak my meds to some degree, and there is also a procedure we can look into called Ablation.

Ablation is where the doc puts a catheter through my neck into my heart and burns a tiny burn on the section of my heart that is causing the PVCs. Then scar tissue forms and the nerve that was sending the signal for the PVCs is disturbed and doesn't send them anymore.

It sounds wonderful to me, but the doc said he's not at all sure they will do it. He said it's not dangerous normally, but since my heart is so weak, it's usually not great to damage a heart like mine (that's already damaged). But I want to speak to an electrophysiologist (the doctor that would preform the procedure) anyway. I'll certainly want to weigh the risks, but I don't want to give up on that option. I got an urgent appointment with the electrophysiologist on the 12th, so I'll know more then.

So we came home last night and got a good nights sleep in our own bed and I woke up in good spirits today. Thank goodness for that Cardiologist last night, or I may have acted on my impluse to clock the ER doc in the nose.

So today, I'll just chill out and watch the Oscars. My vote is Sandra Bullock for the Blindside. She was as sassy as they come in that movie!

I'll keep you posted on anything else cool that happens!