Sparky- Version 2.1- 11/28/2010

Hi All,

Ah, I feel like I've finally emerged from the post-surgery fog and can think straight enough to write. Nice!

The plan had been to get this surgery done on this last Monday. It wasn't an emergency, but having the pacing wire turned off was making me feel awful. Back to how been feeling all month-exhausted, dizzy, nauseas, lousy. So my doc wanted to correct this asap. But when Monday rolled around, we awoke to a lovely blanket of beautiful snow. Ooops.

As you might expect, Seattleites don't drive very well on snow (you may not know that they also don't drive that well in rain, but I digress). The hospital called and asked if we could postpone until Tuesday, as half of their staff couldn't come in. We said that was no big deal, and instead went in on Tuesday for the big day.

I was very familiar with the procedure by this point (this being my 3rd go round) so we whipped through the prep stuff and then I was wheeled off to try this again.

When I found out I was going to have this correction, I though they would cut a small hole in my 3 inch incision site and fix it from here. No, that would be too easy I guess. They cut the whole incision open again, and got to work.

As a note, my doc said when she saw the xray from my ER trip, she was pretty shocked. Not only had the pacing wire gone rougue and landed at my diaphragm, the entire casing of Sparky 2.0 had rotated 45 degrees. She had never seen one move out of place so badly.

As I learned that, I wondered if perhaps she wasn't at her most focused when she put in Sparky 2.0. Maybe she put on an episode of Grey's Anantomy for some inspiration, but got distracted by Dr. Yang's new career choice as a bartender who shakes more than just martinis. Who's to say? Or maybe when I got out of surgery last week and my shoulder felt just fine, I shouldn't have been whipping that arm around at da club. Hahahaha. Me at the club- hilarious. But I think I was pretty liberal with the arm moving, because it didn't really hurt. Oh well, who know's what happened, but I was ready to get it fixed.

The worst part of this surgery was because my blood pressure was so low (like around 75/30 instead of my normal 95/55), my doc couldn't use any sedation for the surgery. Just local anesthetic. The pain wasn't too terrible, but I felt every tug and heard way too much. The sounds of surgery are not comforting to the recipient of said surgery. I held it together and then started to freak out, but she got done right when I couldn't take it much more. Because everything was so messed up, the one hour procedure turned into 3 very tiring hours. When the doc finished, she had replaced the rougue wire, repositioned Sparky 2.0, and stiched him in.

Recovery was definately harder than last time. I felt like I'd been hit by a very small truck. But that's the way I felt after I got Sparky 1.0, so I took that as a good sign. I've spent this week resting a lot, but doing more every day. Today I almost feel normal! It's SO good.

Wanna hear one of the coolest things? Last week I told you that even with Sparky 2.0, I was feeling the pacing at least a few hours a day. Not painful, just uncomfortable and annoying. Well- no more!! Sparky paces me 100% of the time now, and I don't feel a thing! My doc thought that would happen and I'm so pleased.

Another awesome change is that my heart now feels warm! I didn't even realize that my chest and heart always felt cold in the last month, but I can tell such a difference. I also feel a lot more clear-headed (blood to the brain is a plus, I always say).

So all in all, I'm so happy with this decision. I think constant pacing was just what I needed. They say this won't increase my ejection fraction, but maybe this what they mean when they say you can start feeling a bit better even if your ejection fraction doesn't move. It's encouraging and making me very optimistic for this next year.

I hope you all had a great Thanksgiving! We were sad we couldn't be with family, but Christmas is just around the corner. See you then!

Love to you all,


Shake, rattle and roll- 11/21/2010

It's kind of hilarious at this point. Coming home from the ER last night at 1am, Nick and I were just shaking our heads. What are the odds?

Let me back up to what that I thought this blog would be about. Getting Sparky 2.0! I got my new device on Wednesday and everything went smashingly well (I'm celebrating all things British this week as Kate Middleton got Prince William to put a ring on it).

The surgery went fine and when I got out of recovery, I felt just fine. Not even fine for post-surgery, but just fine-I didn't even have to take a painkiller. Totally cool. Anesthesia did seem to make me more groggy than usual, but it was nothing awful.

I spent the night at the hospital on Wednesday night and Thursday morning they sent me home! Thursday and Friday were a little rougher as the anesthesia really wore off. I got sore and just didn't feel great. But my arm was still 100x better than last time. Yay!

Mom headed home Saturday (yesterday) morning. She was such a wonderful help and she is the best hair-patter west of the Mississippi. We were so sad to see her go. But the rest of the day, we managed just fine.

I do have to tell you about one disappointment. Since I got Sparky 2.0, I've still been feeling the pacemaker pacing. Not all the time, but at least several hours each day. It is pacing almost 100% of the time, but I guess I just feel in when I'm in certain positions. So if you see me sitting down, with my back arched and my head on my right shoulder, you'll know what's going on. : ) It's not painful, just surprising and uncomfortable. But it is not accompanied with the severe dizziness, nausea, and my knees almost collapsing. So it is really an improvement.

So back to Saturday evening- I was watching a little "Watch What Happens with Andy Cohen" (love it, by the way), when I started feeling lots of pacing. Enter weird back arch and head on shoulder. That lasted for about an hour, and then "It" started. I was standing up and then I felt like I was getting the Heimlich maneuver, over and over. I freaked out, because I'd never felt anything like that before and I'd never ever heard of a symptom like this.

So right away I told Nick we had to go to the ER. Usually, I wait a few minutes to see if the episode will calm down, but not this time. By the time we were halfway there, I was sobbing (half from the pain and half because I was FREAKING out). Nick drove like a madman and we zoomed into the ER. They got me a wheelchair and into a bed in about 10 seconds.

I told the nurses and doc what was happening, and they all did their work quickly, all the time looking at me with wide, confused eyes. They could see my whole body convulse at about 70 beats per minute. It kept going for a several hours while the docs called the cardiologist and electrophysiologist to figure out what the heck was going on.

It honestly felt like I had some foreign being right below my ribcage. Like if they cut me open, a clown would jump out like from a jack in the box. I kept imagining Dr. House finding a 4 foot eel in there or something. And I was only partially kidding. And the other weird part is every time I'd sit up, the jerking would get way worse, and I almost fell off the bed.

Based on recent events, Nick and thought it was probably something to do with one of Sparky's wire being somewhere it shouldn't. The doc didn't agree- he thought it was gallstones.

Well, Nick and I should start our own medical practice (I think we'll call it The Morrelli Group). We were right. And the doc was wrong-o-la.

After awhile, the electrophyisologist got there to interrogate Sparky. He read 10 feet of readouts the machine printed, and poked around on buttons for a while. Then all of sudden he asked "have they stopped?". Um, yeah. "How about now?" Ow ow ow ow. No. Then he stopped them again. It was like he was the puppet master and I was on a string.

Evidently, the new wire I got for Sparky has moved to the wrong place and settled on my diaphragm (the place your hiccups come from). So once it moved there, it was trying to pace my diaphragm at 70 beats per minute. That caused the convulsions (imagine the worst hiccups of your life, then throw that out. This was way worse. ; ).

So once the doc figured this out, it was an easy fix. He just turned off the rogue wire and all was well again. Ahh....peace.

They want to get me in for surgery on Monday (tomorrow) but they're not what time they can squeeze me in. It sounds like this a pretty simple fix- just use a tiny wire to move around the other wire. But as we've learned today, the strangest things can happen.

Anyway, thank you all for your love and well wishes for the first surgery. I'll just assume those continue on for this next surgery. :)

I'll keep you posted on the weirdness!

Tomorrow, tomorrow, I love ya, tomorrow! 11/16/2010

Hi All,

Tomorrow's the big day! I'm awfully excited to get Sparky 2.0. The last week or two have been rough, and the thought of getting this slow heart rate fixed is AWESOME.

Today I went to UWMC to get some blood tests and have a venogram. A venogram (I learned today) is basically the long, convoluted way docs have to look at my arm for the remainder of my blood clot, because I can't go in an MRI ( because of Sparky). I asked what would happen if they did put me in an MRI? Would Sparky be ripped out of my chest?? I think I saw a House episode where that happened. The truth is much less cool. The metal in Sparky would mess up the MRI picture, and the magnet could screw with Sparky's settings. Hmm, no one would put that on a TV show, I'm sure.

The docs planned to shoot some contrast solution into my left arm and take some x-rays. But after they did that, the saw absolutely no blood was getting through one vein. They said that could be a narrowing of the vein, which happens after defibrillator wires have been in there awhile. So they snaked a tiny catheter up my arm to get a better look. The good news- there is no narrowing and no blood clot! The not so good news- no blood was flowing through that spot because my heart is pumping weakly. Not exactly new news though.

So it was a good investigation. Although I do have a pretty big complaint. This whole thing was supposed to take 20 minutes, but since they had to change plans and do the catheter, I was gone for an hour and a half. I asked someone to go tell Nick what was going on so he wouldn't worry. And no one went to tell him. So poor Nick was in the waiting room, scared to death for over an hour. Nurse that was supposed to go tell Nick= FAIL.

Nick has been pretty anxious about this whole Sparky replacement. We both know it's the best thing, but he just hates the hospital so much. It just shoves this whole situation in his face and it just overwhelms him with worry. I'm so lucky to have a great husband to help me through this mess. I'm convinced that it's much harder to have a loved one be sick than to be sick yourself. At least I feel informed and well taken care of during procedures. Nick is left in the waiting room, sweating it out. It's not just not cool.

I also know my family and friends worry out about stuff like this, and I appreciate you all caring so much. Thank you! But do realize this stuff doesn't really stress me out anymore. It feels pretty routine nowadays and I can see past the uncomfortable bits to the part where I'm going to feel better soon!

We'll be at the hospital at 10:45 tomorrow morning and then they'll whisk me off to get ready about 11. The surgery should take 4 hours, but knowing my spazzy veins, I wouldn't be surprised if it went long. I will make SURE that someone goes out to update Nick and Mom this time. No excuses, just do it.

I'll ask Nick to send out an update when Sparky 2.0 and I finally meet! I'm sure I'll be woozy and not feel up to my journalistic duties.

Thank you for all the prayers, well wishes, good thoughts and hugs you've all sent! They will make an excellent love blanket that I can feel around me when I'm in that operating room. It's freakin cold in there. : )


It's a yes! 11/12/2010

Hi All,

Don't you just love it when things go smoothly? I really really do. And today, they have!

I talked to my doc's nurse and my insurance company and it turns out that I meet the qualifications for Sparky 2.0!!!!! I didn't even really get to use my super secret insurance tricks and skillz. The one win I can claim is my doc wasn't even going to try to get Sparky 2.0 approved because she didn't think I would meet the insurance company's qualifications. But I never take no for an answer, and here we are! : )

Sparky 2.0 is the biventricular pacemaker/defibrillator (Option 2 if you are referring to yesterday's note). This is the device I've been hoping for. In some patients, this device helps improve the ejection fraction (how much blood my heart can pump). That may not happen for me, because my electrical conductivity isn't as messed up as some other patients, but it may help a bit and it may help it not to get worse.

The other awesome thing is that I won't need surgery later on to put in this device. That equals less chance for infection, fewer complications, and less moo-la. Win win win!

I'm going in on Monday or Tuesday for blood tests and an ultrasound of my shoulder where I had that blood clot last year. Since they will be poking around in that shoulder for this surgery too, they want to make sure they don't dislodge any remainder of the clot that is still there.

Then on Wednesday I go in for surgery. The procedure will take about 4 hours. They will cut open in the same place they went last time, remove Sparky, poke 2 wires in my heart, put in Sparky 2.0, and attach the wires to Sparky. Bada bing bada boom! I quit having these lousy episodes (like I've been having all afternoon). SO excited. : )

I'll stay overnight on Wednesday, and hopefully get out of there by Thursday. The pain probably won't be quite as bad as last time, because they don't have to create a pocket in my muscle this time. I'm sure I'll have some cool bruises, and won't be able to lift my arm for a few weeks. No big deal.

My mom is coming up for the surgery. I told her she didn't have to come, but she wanted to, and I really wanted her to come anyway. :) So she'll be here on Tuesday and stay for a few days after the surgery. There is nothing better than being babied by your momma.

I can't tell you how relieved I am about this ya'll. I've heard "let's wait and see" and "we're doing all we can for you" so much this year and it is so exciting to know the docs can do something to fix this. I'm as happy as a clam!

I'll keep you posted!

A solution of my very own! 11/11/2010

Hi All,

Well, for the first time in a long time, when I went to the doctor, she immediately said "Ok, let's fix this". Yahoooooooo!!!! A solution? A real solution of my very own? Hell yeah!

Let me back up...

So in my last note, I mentioned how slow my heartrate was getting. It keeps going down to 40 beats per minute, which is when Sparky kicks in. I don't feel it every time Sparky beats for me, but I do feel it a lot and it is very uncomfortable. Not a shock, but more like a strong thump coming from inside my heart. It almost always takes my breath away for a second, and it makes my heart ache pretty badly.

I returned that 24 hour monitor to the hospital about 10 days ago and then I had to wait until yesterday to get the results. In the meantime, I was getting worse and worse. I've been having these episodes where I'll feel a few strong thumps, then I immediately get dizzy, my face breaks into a cold sweat, my knees feel like they are about to buckle, my chest hurts terribly, and I can't think straight. I've had these episodes almost every day for the past week or two, and they last anywhere from 10 minutes to an hour.

So when I went to the doc yesterday, I was READY for some action. As soon as my doc came in she said that my 24 hour monitor showed that 40% of the time my heartrate was "wicked low" (her words, heh heh). When I told her about the way I'd been feeling she said there was no question, I need to have Sparky adjusted to help my heart pace better.

Then the electrophysiologist (the surgeon who put in Sparky) came in and we put together our game plan. There are two options for me.

Option 1) Open my incision site where they put Sparky in, stick another wire in my heart (this time in the upper chamber) and attach the wire to Sparky. This will let Sparky pace my heart all the time and I won't feel those thumps. He will keep my heartrate up, so I won't get the awful episodes. Excellent!

Option 2) Replace Sparky with a bi-ventricular defibrillator/pacemaker (Sparky 2.0). That device has 3 wires and can not only pace the heart, and shock it if it goes into dangerous rhythms but it can also help with the electric conductivity of the heart (which can make the ventricles of the heart pump more in sync). This last piece is what has the ability to improve how well my heart pumps blood. Unfortunately (or fortunately?) my electrical conductivity is not normal, but it's also not quite bad enough to meet the qualifications for my insurance company to pay for this new device. I meet all of the other requirements completely, but I am missing that one by a bit.

So I'm talking with my insurance company to see if an exception can be made in this case. My doc would prefer to put in Sparky 2.0, because she thinks will help me more down the road. Also, even if we do option 1, we may need to go back in and do option 2 later on (maybe even within months). I'd really rather have one surgery to get it all done, instead of two. Plus, it's cheaper to do one procedure instead of two. So we'll see. Being in the health insurance biz for years had better pay off! : )

Anyway, my doc would like to do the procedure next week, if we can get the insurance stuff figured out. I'll keep you posted, but it could be as early as this coming Monday or Wednesday. Yay!!

Three cheers for getting stuff fixed!



Hi All,

Guess who's not in the hospital? Me, that's who! After last week's little ER visit, I was worried I'd be back at UWMC for a longer stay...that's just the way those visits usually turn out. But not this time suckers! (She says in a escaped bandit kind of way)

I did go to my cardiologist a few days after the ER visit, to check in. She and my electrophyisologist (EP) checked out the EKG print-out that my rehab folks sent them and didn't really like what they saw.

I asked them to repeat what they told me about 3 times and then I got embarrassed because I STILL didn't get it. I can usually understand their explanations pretty well, but this went over my head. I think the gist is: When my heart dropped down to 40 beats per minute in rehab, it wasn't that it just slowed down, the upper chamber of my heart (I think this is right) stopped beating for 6 seconds and Sparky kicked in and beat for it at 40 beats per minute. The mystery is why that chamber just stopped beating. Maybe the docs told me why this could be happening, but I don't remember what they said (sorry, I should start carrying a tape recorder to all my appointments, like the real journalist I am).

They did interrogate Sparky and saw that he was definately kicking in a lot, keeping my heart rate at 40 or above. I'm not sure how low it would go without Sparky...maybe stop? I'm not sure if I'm just being dramatic here or that really is what would have happened. Anyway, I don't have to worry though, because Sparky is (once again) earning his keep!

In order to get a better handle on this situation, my doc ordered a 24 hour holter monitor, which is like that monitor I had this winter, except this one records every beat for 24 hours and the other one just recorded when I pushed a button. I go see my doc again on the 10th, so we'll discuss the results then.

My EP told me that if my heart keeps doing this a lot, we may need to put in Sparky 2.0. It's not the same device I was hoping for (the bi-ventricular defibrillator); it's just a defibrillator with a better pacemaker in it. But it sounds like it's safer than Sparky, so if I need it, let's do it!

I'm not too worried about getting a new device. I know what the surgery is like, and it's not that bad. I'm surprised this didn't throw me for a loop, but I've just been feeling tougher (emotionally) lately. This is just a little hurdle and I'm sure I'll get through it just fine.

So I'll keep you posted on what the next step is. (By the way, if I get Sparky 2.0, I'm totally going to demand Sparky to bring home. No, not to put in a glass box and cherish- I'm selling him on Craigslist!)