Man, it's been almost a month since I've written anything- time flies when you're not in the hospital!
Things have been really good around here. Since I've healed up from the surgery, I feel excellent. I'm not sure if I feel better than I did a few months ago (maybe) but I feel 100x better than I did the month before I got Sparky 2.0.
I think the main difference is that I feel warm and can think so much more clearly. I was also hearing my heart pound everywhere on my body- I felt like I could see my pulse in my fingers, ears, arms, legs- everywhere. I've since learned that can happen when your heart rate is erratic and weak. So that's gone now too. Ahhhhh (she says with a contented sigh).
Sparky got his 1 month check up today. All is well! The doc that tests the device was training another doc on the testing equipment, so I got the detailed explanation of everything she was looking at on the computer screen, which was pretty cool. I found out that if my heart ever goes into one particular weird rhythm, Sparky will sound an alarm. From my chest. I know- wild. She tested the alarm for me-it sounds like a European police car. "Woooga wooooga" is the best explanation I've got for you. Crazy.
I've had a lot more energy overall this last month- I can do 3 things each day now if I want. Examples include 1) Go to rehab, 2) Go to the grocery store, 3) Do the dishes. Or 1) Get dressed all cute and style my hair, 2) Go shopping for a little while, and 3) Go to happy hour with my girlfriends. I'm leaning towards the latter, but that's just me.
So the energy has been great, but it's like I've gotten a taste of freedom and I want more. I feel like I have more energy than my heart can keep up with. For example- I've been having this raging urge to run lately. I just want so much to have that feeling of working hard, sweating, and willing myself to make it to the finish line. I want to be able to push myself and be stopped by my muscles burning, not because I feel like I got punched in the heart and I can't see. I used to hate sweating and working out hard, and now it's all I want to do. So next time you're on the treadmill and hating life- think of me and enjoy the sweat a little ok? : )
That's all I've got for today-Merry Christmas to you all and I'll see you in the New Year!
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,
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'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. : )
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!
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!
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!)
Hmm. I knew I'd be writing up a blog today, the one year anniversary of my diagnosis, but I thought it would be filled with musings, memories, and hopeful thoughts about my future. Well, I'll get to that, but first let me tell you about today's ER visit! (I think this day may be jinxed.)
I have been feeling not so hot the last few days. I've been super short of breath, my chest has been aching, and I've been way more tired than usual. Nick and I planned to call my doc today after cardiac rehab, but I didn't get a chance to do that.
I was tired today at rehab and had trouble breathing, but I made it through all my exercises. I started my cool down stretches, and within a few seconds, I felt like I was going to pass out. I sat down and talked with Dave, the rehab therapist. We just planned to wait it out and see how I felt in a few minutes. Then I got super dizzy, my head flopped over to the side and I told him I didn't feel right.
The nurse said my heart rate had just dropped to 40 beats per minute. That's the lowest I've ever been. A year ago, one of the reasons I was admitted to the hospital was because my heart rate was 140+. So the meds have done a great job, I just have to deal with the consequences now.
My heart rate dropped to 40 again, and that's when Dave and Cathy the nurse wheeled me right over to the ER. After lots of tests and 4 hours of monitoring, they released me. It seems my congestive heart failure is under control right now (excellent), and my labs looked good. The only snag is my heart rate is quite low. So I'm going to see my cardiologist in the next few days to decide what to do about that.
Really, this is a very good problem to have. It means my meds are doing a very good job of making my heart work as easily as possible. The negative is with my heart rate so low, I'll feel wimpier than ever. But, if my heart rate stays low, it may qualify me for Sparky 2.0, which could make me feel a whole lot better. : ) Sounds great to me! So we'll see, and I'll keep you posted. But I feel fine this evening, just going to catch up on some TV and curl up on the couch.
As for the one year anniversary of this whole thing- today it's not as overwhelming as it was earlier this week. Yeah, my whole life has changed (along with my dear husband's life, and my family and friends). But I do have hope about what is coming down the pike. This doesn't feel like such a death sentence, but just something I'll have to work around for a long time.
I was talking to my counselor this week about my feeling surrounding this milestone and they were pretty mixed.
I'm proud that I've made it through the weirdest year of my life.
I'm happy that Nick and I are just as in love and are stronger than we were a year ago.
I'm sad that our plans for kids have to be put off for the time being.
I'm surprised how fast it's gone.
I'm overwhelmed by the love and support my family and friends have shown me.
I'm mad that this disease forced me to make changes I didn't want to make (like quitting my job).
I'm tired of going to the doctor and hospital and knowing what they are talking about on the medical shows like Grey's Anatomy and House.
I'm in awe of the power of love that I've felt surrounding me again and again.
I'm grateful for all I've learned about myself this year (plenty of time for introspection does that to a girl).
And I'm excited to see what the next year will bring!
Through it all, you've all been just wonderful to me. I'm more grateful than I can say, and hope I can be as good of a friend to you as you've been to me. Thank you!! Every note, call, prayer, joke, gift, and hug has warmed my heart (: ) and made each day easier. You all are the bee's knees. : )
So that's all I've got for tonight. I've got a Rangers game to watch with Nick, so I'll have to let you go!
Wow, it's been a long time! October has really flown by...mostly with me in a plane literally flying by. I've been in Oklahoma visiting my folks, and then a week after that Nick and I hopped on a cruise to the Caribbean. Whew! I'm exhausted, but so happy to get a chance to do those fun things.
In short, Oklahoma was a blast. My family and I did lots of hanging out, watching movies, and poking around their new town (Ada, which they have declared America's best place to live. I guess we need to inform Time magazine or whoever keeps up with that list).
I felt pretty good most of the time. We did figure out that all the talking and laughing wears me out pretty quickly, so I'd make sure to have a nap in the afternoon. Not a bad gig. : ) One bit of excitement- we found a big snapping turtle in the driveway, so naturally, we poked at it with a stick until he bit the stick. Very exciting. Sad news though- a few hours later, we found 'ol Buck the turtle run over on the highway. Dang it.
But no weird heart episodes during the trip- it was just a matter of taking it slow.
Then Nick and I were off to the Caribbean! We flew into Puerto Rico and cruised from there with our dear friends Chuck and Errin. Before the trip, we got a wheelchair for me. Her name is Hot Wheels McGee. She's fantastic. Unfortunately, she does look like the wheelchairs every hospital, hotel, airport, and cruiseship owns, so we had to gussy her up. So we bought stickers from every port we visited and put them on the chair, like passport stamps. Brilliant? Yep, we thought so too.
The cruise was fantastic. There were only two days where we didn't get off the boat because it was too hot/I was too wimpy. But I did get to snorkel 3 (!!!) times. The best was in Dominica at a place called Champage beach. Dominica was (is?) a volcano, and when you snorkel, you see all these little tiny bubbles coming up from the sea floor, from air vents. It's AWESOME. There were tons of fish, and I have to say it beat Hawaii's snorkeling. SO cool.
So we've had a great month, but I'm glad to be home. I am pretty tired from all the fun and was ready to get back into a schedule this week. Cardiac rehab went pretty well this week, but I did have to stop early a few times because of some chest pain I've been having. I'd been kind of ignoring it while on the trips (oops) but they don't believe in ignoring anything at rehab. I go see my doc in about a week and we'll discuss it then. Unless it gets worse, then it's off to the ER I go. There's no risk of a heart attack because I don't have any artery blockage, but chest pain is never something they sneeze at.
Other than that, I've just been trying to adjust to life without working. It hasn't been hard with all the traveling, but now that that's done, I'm trying to find things to keep me busy. I've got a few things in the hopper...I'll keep you posted on how those go.
Well, that's all for now...I promise to do better at updating you on the shenanigans.
I love you all!
Sorry for such a long silence...I'm at my folks in Oklahoma and we've been having so much fun, I haven't had time to blog! And when I have had time, I've been too tired from all the fun. :)
So, a little more about my Mayo visit- it was really good. We didn't uncover anything wild; most of the test results were similar to my tests done in Seattle. But for some reason I really wanted to have everything done again just to make sure nothing was missed. So when the results came back very similar, it made me more comfortable trusting the docs in Seattle going forward. Maybe I'm not loyal, but this really is a business transaction for everyone, and I wanted to get "quotes" from other places, just to be sure. : )
Some of the tests I did were an echocardiogram, an exercise stress test, blood work, an overnight oxygen test, and chest x-rays.
The echo showed my heart function at 24%. My test in Seattle a few weeks ago showed 23%. The margin for error on that test is 3-4%, so it's essentially the same, but I like that it went up a bit, instead of down!
The exercise test was pretty telling. I'd done this test before and it had shown that when I had to stop the test, it was because I reached my limit with my heart. That was after I'd done cardiac rehab for months and was in pretty good shape (considering). This test showed that when I had to stop, it wasn't my heart limiting me, but that I was deconditioned. That's a fancy way to say out of shape. I'm not surprised because after my sparky shock, I was too scared to work out on my own and have just gotten back into cardiac rehab. So that means some of this wimpyness I've been feeling should go away as I get back into rehab full swing. Excellent!! We thought that was excellent news. I was worried that the shock had done permanent damage and I was just wasn't going to be as strong, but that's not the case.
The only other test that showed something different was the overnight oxygen test. You clip this little monitor to your finger as you sleep and it monitors your oxygen levels. During the day, my oxygen levels are very good (97-100%). But during the night, my levels got to 79% or so. That's low. The doctor thinks I may have a bit of sleep apnea, which you can get from congestive heart failure. So I may be doing a sleep study in Seattle sometime soon. Treatment for sleep apnea has been shown to improve the ejection fraction a bit, so that could be really cool too. And I may get better sleep and need less under eye make up in the mornings. Win win!
After I finished all the tests, I met with the doc to review. He was a little cocky, but pretty nice. He did tell me that after I get to the therapeutic dose of my beta blockers, my heartrate may get too low and that would make me eligible for a biventricular pacemaker/defibrillator. Basically, Sparky 2.0. This device has two leads that go into the heart (Sparky just has one) and can improve the ejection fraction. So that's exciting too!
I did ask him about transplant and he said I'm just not sick enough yet. He told me heart transplants are for survival, not quality of life. He said you have to weigh the risks vs the benefits, and the risks just aren't worth it yet. Who knows what will happen in the future, but for now, he said to plan to live like this for some time. He said to focus on getting stronger, losing weight, reducing stress, and building up on my meds. That is the best recipe for me right now.
I do feel good about the visit, even though nothing groundbreaking happened. I'm ready to plug along slowly now, just taking things day by day. That's completely against my nature, but I've been broken, like a wild horse in a Disney movie. Well, maybe not broken, but I'm tamed a little.
So that's what happened at Mayo. One sidenote- we saw more REALLY old people in Cadillacs there than you can shake a stick at. And one old guy stole my dad's newspaper and another old guy stole our lunch table in the cafeteria. I guess sick old people don't have much to lose, so they live life on the edge. : )
And thanks to you all for your well wishes for the trip!
We are about to head out of town for Oklahoma, but I wanted to write up a quick update about my Mayo trip.
We just wrapped up all my tests and my appointment with my doctor. The upshot is that things are about the same as I've heard, but I got encouraging news about how cardiac rehab and losing weight can help my heart get to it's potential. Meaning that my heart is weak, but is strong enough to take me doing more exercise and I should see see an increase in energy and stamina from that. Great news! I was under the impression that I was kind of at my max now, but that's not the case.
They did some additional tests that I'd never had before, and I feel like they were generally more comprehensive. The doc did recommend some prescription dosage changes, so I'll talk with my doc about those when I get home.
I'll write a much longer blog later (probably in a few days when we get to OK), but I just wanted to share the news. I do feel like I'm leaving here with a lot more peace and a renewed sense of optimism. So that was worth the trip alone! Plus getting to hang out with my family has been a blast too!
Thanks to everyone for their support! You guys are just the best. :)
I'm packing up to head off to the great state of Minnesota! I have my initial appointment at 7:15 on Tuesday morning, and then it will be at least 2 days of tests, consultations, and more tests. : ) I'm so happy I made the decision to do this. I honestly can say that I'll be fine if the docs say I'm doing the right things and all I can do is wait. At least I will have heard it from the best and I think I'll be able to move on from here.
I did do some research on the doc I'll be seeing, and I'm impressed. He went to the University of Bombay, and then came to the states where he did his fellowship at Harvard and then at Brown. Not too shabby! He specializes in heart failure as well as cardiac transplantation, so he should be able to give me guidance on transplant and all the other options.
I'm flying out tonight and will meet my parents and sister at the airport (they are driving up from Oklahoma). I'm so excited to see them! Rhetta (my 15 year old sister) and I have been planning how to squeeze in several mall trips, including the Mall of America (note: the "M" is capitalized. I checked their website). I'm not sure how tired I'll be from all the appointments, but I'm sure we'll be able to have a little fun too. : )
Then after we're done at Mayo, I'll drive back to Oklahoma with my family, to spend a week or so. I'll get to see my brother Skylar there- yay! Who knows what kind of fun we can dig up. We may need to try catfish noodleing. Are you familiar with this concept? You get in a creek, stick your hands under the creek banks, looking for catfish holes. When a catfish bites you, you pull out your arm with a catfish on it! Essentially, your arm is your fishing pole, and your fingers are the bait. Ok, maybe we'll just try to find someone else that's noodleing, film it, and put it on youtube. ; )
Nick is so bummed he couldn't come on this trip, but he's got a lot going on up here, and it's best that I have a loose schedule on this trip. I'm already missing him- he's in Lubbock this weekend, visiting good friends and his dad. They all went to the Texas v. Texas Tech game yesterday...and the Longhorns won! But Nick doesn't get home until tomorrow, and I leave tonight. : ( So I'll have to keep him posted via unlimited cell phone minutes!
Alright, I'm going to try to squeeze in a little nap before I need to finish up packing. I'll keep you all posted about the clinic visit!
Love you all,
I'm happy to report I'm feeling much more, well, happy! I got out of my funk by yesterday morning, and am back to my normal self. It's amazing what a good night's sleep can do, huh?
Today was my last day at work. It didn't really feel like the last day-I'm not sure why. My co-workers are having a goodbye get together for me sometime soon, and I think that's when it will hit me. I'm sure I'll be crying a river, so I'll have to go pick up some waterproof mascara.
I'm pretty exhausted tonight. Again, confirming this is the right decision. I went to rehab this morning and then to work, and I'm going to write as quick as I can so I can go to bed! : )
Tomorrow is my first day of being work-free. I need to think of a cool way to say that. Employmently challenged? Mini-retirement? Independently wealthy? Wait, no....
We do have plenty to do though...I thought I would be bored stiff, but Nick and I have about 4 places to go tomorrow. Thank goodness for the handicap parking tag-that things gonna get a workout!
I talked to the Mayo Clinic today to confirm my appointments. They have me scheduled for a plethora of tests and they said I would be there for at least 2 days, maybe longer. I couldn't care less...I just want them to be thorough. I continue to get the best vibe from them. Everyone is so nice and completely has their act together. You know, mayo always was my favorite condiment- bahahaha! I've been trying to get a mayonnaise joke in here somewhere. Does it feel forced? : )
Ok, I'm gonna hit the hay. I just wanted to assure you all I'm out of my psychosis and can think clearly again. I'm so glad. :)
I'll keep you posted!
Jana- step away from the laptop, you are far too emotional, grouchy, sad, excited, bewildered, defeated and hungry to be to communicating with others right now. Stand by while I blow my nose, wash my hands, and get a snack.
*10 minutes later*
Ok, I feel like a different person. (by the way, the leftover porkchop I just ate from last night was delish).
So the whirlwind I'm in started with me giving notice at work yesterday. That was exhilarating at first- I really felt like I made a big decision and it was the right one. But as the night wore on, it really just hit me how much of a life change this will be. I'm used to having work be a major part of my life and how I define myself. And now, that's just gone. It's really weird. And now I have to find a new way to define myself. Hmm, I sound like a self help book on the clearance rack at Borders.
Next, I had my appointment with my cardiologist this morning. It was what I've come to expect- more of the same treatment plan. Good news though- my heart function had gone up to 23% (from 18% most recently). We also looked at my heart measurements over the last year and it shrunk from 7.2 centimeters to 6.8%. Not a lot, but it is certainly moving in the right direction. She said she thinks I am going to be one of the patients that improves very slowly, over a long period of time. That was hard to swallow, but I'm getting my head around it.
Honestly, I've been hoping that it will be transplant time, but it doesn't look that is in the cards anytime too soon. She told me getting on the transplant list would not happen the way I am now, as I would be listed as a status 2. No status 2's are getting hearts these days because there are so few hearts. Only status 1's are getting hearts (those that have to live in the hospital or are on 24/7 IV med drip). So there is no point of getting on the list- we just have to keep a close eye on me to see if my status needs to change. She did set my next appointment with her for November instead of the normal 4 months away. So I like that she's ready to keep close watch.
Also, this morning I got a call from the Mayo Clinic about the appointment I requested. I was super excited. PS- they get an A+ for customer service (and I am a TOUGH grader on customer service). Everyone I talked was sweet, helpful, and smart. They said they could see me as soon as Monday, but I set an appointment for the 21st, because I need to make travel arrangements.
I'm really excited, but I am bracing myself for the outcome to be the same as my doctor has said. I think one of the reasons I'm upset lately is because I see that "magic bullet" I keep hoping for slipping away. I think the next thing I need to do is be ready to start creating a life I want, knowing I have certain parameters I have to work within (and around). I'm not sure what that life looks like yet, but I'm not going to push myself to figure it out today. In case you haven't figured out, I like to know what's going on NOW, but sometimes I just have to be patient (blech. the "p" word" : ).
Anyway, I hope this note doesn't come off as ungrateful or too grouchy. I know I've had a lot of good news in the last few days, but for some reason, tonight I'm just overwhelmed and can't quite be happy about it yet. Tomorrow, I'll bet. : )
Thank you all for the sweet notes, thoughts, and prayers! It helps to know I have so many people cheering for me as I am on this crazy ride!
I love you all,
Wow. What a day. I did something today that I never in my life expected to do. I stopped working. I've been working since I was 12 (I had a babysitting empire. It was awesome.). Today I gave my notice at my wonderful job (Account Manager at Kibble & Prentice, an insurance brokerage in Seattle). I just decided I was too tired to keep it up.
Nick and I have been kicking the idea around for awhile, and last week we decided that my attempts at working just weren't worth the energy it took. I was only working 5-10 hours a week anyway, but I really felt a responsibility to be there when I said I would, and I was just putting undue pressure on myself.
The main reason I wanted to stop working (besides being exhausted) is so I can start spending what energy I do have on the things I really care about- which is seeing friends and family. So watch out, I may be coming to a couch near you! : ) First plan- go see my fam in Oklahoma. I can't WAIT. I miss them so much. Nick won't be able to join me this time, but we'll send him lots of pictures of the fun we're having. : )
In heart news, I go to see my cardiologist tomorrow. I will find out the results of the echo (heart ultrasound) I had yesterday, which will tell us if my heart function is improving or not. As always, I have my hopes up that she'll say it's time to make some big decision. But I'm sure she'll just say we need to wait longer to let the meds work. The frustration is mind-numbing.
I think I mentioned last time I was going to try to get an appointment at the Cleveland Clinic. Well, that didn't work out that great. They got all my medical records and told me I was on an "optimal treatment plan". Hmm. I suppose that's good news, except I really wanted them to come up with something different to do. Also, I think they were confused about what I was asking. They thought I wanted to be listed for transplant there, but really I just wanted to get their opinion (after seeing me and testing me). So I may call back to further explain, but frankly I didn't like their attitude, so I'll look elsewhere too.
I've also requested a call from the Mayo Clinic. From my research, I think I like their style better. A little more soft and fuzzy. I like that. I need to be coddled. : )
Anyway, that's about all I have for now. I'm pretty exhausted from this crazy day, so I'm going to go hit the hay.
I'll keep you posted on the appointment tomorrow! Also, I'm taking bets on my heart function results. I was at 18% last time. My vote is 20%. Nick's is 24%. What's your vote? Winner gets a pair of grey socks with non-slip pads on the bottom from my last hospital visit! (Slightly used. Just kidding, they're new!)
Love you all!
Home again, home again. While the trip to Hawaii was just fabulous, I'm glad to be home. It's a lovely 65 degrees here, the air is sweet, and my DVR is full of great shows I recorded. : ) Ahhh.
After I updated the blog while we were in Hawaii, we continued to have a great trip. Lots of relaxing, hanging around the beach, sightseeing, etc. The rest of the trip wasn't without a little drama though.
We all wanted to go to Pearl Harbor, so a few days before we left, we went for a visit. Nick pushed me in my wheelchair so I wouldn't get worn out, but it was a pretty hot day (low 90's I think) so I was already kind of wimpy. We were only there about 20 minutes and I started feeling the effects of the heat in a bad way.
The only way I can describe the feeling is to say that it feels like the bottom falls out the bottom of my heart. It makes me nauseous, and it takes all my energy just to breathe. My head flops over to the side because I don't have the energy to hold it up. Nick and his parents rushed me over to a cooler spot with a good breeze and I perked up a little, but it happened again a minute or two later. Nick's mom said I turned really pale (except for my cheeks. Those things are always pink.) and I couldn't hold my eyes open.
The third time it happened, I told them I thought we should head to the hospital. Nick rushed to get the car and off we went. Everyone was really great, finding the directions to the hospital on their iPhones (thanks Steve Jobs!) and zooming off to get me taken care of. The hospital was about 15 minutes away, and by the time we got there, the air conditioning had made me feel tons better. So instead of going to the ER where I knew I would have to stay for 6-24 hours, we decided to eat lunch by the hospital and see if I continued to improve. I did, so we narrowly escaped a trip to The Queens Medical Center in Honolulu. Whew!
The rest of the trip I had good and not so good moments. But the relaxing was just wonderful. Thanks again to Gay and Pete for a fabulous trip! XOXO
Since we've been home, things have been good. I'm getting ready for my dr appt with my cardiologist on 9/10. This is where I will have another heart ultrasound and see how my heart is doing. We may make some plans about next steps (I hope!).
In other news, I was doing some research on top heart hospitals, and I was pretty shocked to find out my hospital is not ranked in the top 50 heart hospitals nationwide. Um, I didn't know that. They are a great facility, and are very highly ranked for other things (like cancer treatment), but they are not a leading heart hospital. So with this in mind, I've decided that a second opinion is something I need to do-soon.
The Cleveland Clinic is known as one of the top few heart hospitals in the nation, so I'm heading to Cleveland! Nick is pretty buried with job hunting stuff right now, so I thought it would be great to have my mom come along with me. It will be some great bonding time, and no one is more motherly than my mother. : ) And the other great part is my sister Rhetta is coming along too!
I don't have an appointment yet, but I had my medical records sent to them today (several hundred pages. Whoa). The heart failure team will take a look and let me know if they can see me for an evaluation. So please keep me in mind and in your prayers as I wait to get an appointment! We'll probably be there for a few days as they run all sorts of tests. I'm really excited to get some more eyes on this situation and see if they think transplant is right for me or not, and in what timeframe. And who knows, maybe they know of some other treatment I haven't heard of! We'll just have to wait and see.
So anyway, it sounds like I will get an appointment in late September, but I'll keep you posted when it's firmed up. I'm pretty excited, but I'm trying not to get my hopes up. I tend to do that, but nonetheless, having the best heart folks in the country look at me can't hurt. : )
Well, that's all I've got for now!
Love you all!
It's a quiet Sunday morning and I thought I'd check in and share how the trip has gone so far. In a word- Snorktastic!! We snorkeled at Shark's Cove yesterday and I am enamored. We saw TONS of fish, the kind you only see in your dentist's aquarium. Angel fish, puffer fish, this fish that looked like a noodle, clown fish, and about 20 other kinds of rainbow colored fish. And we even saw a Humahumanukanukaapua'a (Hawaii's state fish. Duh).
And the snorkel trip was that much sweeter because the day before yesterday my snorkeling plans were dashed. We had gone to snorkel at Hanauma Bay, the place everyone says is a must see on Oahu. I wasn't feeling all that good as soon as we woke up that day, but I desperately wanted to go to the bay, so off we went. Nick and his parent's were wonderful to me- drove me right up to the entrance, stood in line to buy our tickets, and carried everything. But I still wasn't feeling right. By the time we got down to the beach (via trolley), I was feeling even worse.
My heart was pounding, I was dizzy, I could barely lift my arms. I sat under a tree for about an hour, hoping I would start to feel better so I could snorkel. But I didn't. I couldn't muster the energy to stand up, much less walk down to the water and snorkel. So I just watched and was so disappointed. It was a huge reminder of how my heart just can't make it sometimes, no matter how much determination I have. So we left, and went on a driving tour of the south east side of the island. We still a great time, but I was so exhausted, I could barely hold my head up. It was early to bed that night for sure!
So yesterday, when we decided to go to the North Shore to see the big waves, I was trying to decide to bring my swimsuit or not. And Nick said "hey, we've been planning in case bad stuff for so long, now let's plan in case good stuff happens!". I love him. :) So I brought my suit, and when we got to Shark's Cove, the water was calm and I felt really good, so snorkeling we went! And it was fantastic. : )
In other heart news, I did think I had a little Sparky event 3 days ago. It was late afternoon, and I was super tired. My heart started beating weird, and I almost passed out. I felt a hard thump in my chest and thought it was Sparky pacing my heart. We used my fancy Sparky transmitting machine to send a recording of what happened to my doc, and left her a message to call me back.
She called back to say that Sparky didn't pace me- I had an episode of atrial fibrillation. That's where the upper chambers of your heart beat really fast and out of rhythm. Though scary and uncomfortable, they are not dangerous. Yay for that! Boo for having more weird rhythms. I'll talk to my doc more about that when I get home.
So that's the heart highlights of the trip so far! We are having the most relaxing, lovely time here. The other day, we were going somewhere and I told Nick I wanted to drive. He was about to hand me the keys and then we both realized I'm not allowed to drive right now! We'd both completely forgotten. It's pretty nice to forget. : )
Love you all!
Just wanted to write up a quick note before we head off to HAWAII!!! We're going with Nick's parents , Gay and Pete, and we couldn't be more excited. A vacation is exactly what we need. Things have been a little stressful this year (I thought I'd downplay it today : ), so sitting on the beach, snorkeling, drinking cool beverages, and generally living "the island life" is what we want.
I got the sign-off on this trip from my doc about 2 weeks ago. She said as long as we were going to Oahu (we are) she was fine with it because there is a great heart hospital in Honolulu. So I wrote up a full list of my conditions, my meds, my doctors numbers, and the phone number and address for the Honolulu hospital, to carry with us just in case. It was kind of a depressing list, but whatev- we're going to Hawaii!!
We are renting a wheelchair there, so I can be pushed around in style when we go places with a lot of walking involved (Pearl Harbor, etc). And because of this, I got to pack cute shoes and not worry about packing sensible walking shoes. Ha!
We're going to go to Hanauma Bay to go snorkeling-oh I just can't wait. Nick remembers it from his childhood and the pictures I've seen look SNORK-TASTIC. : )
We'll go to the North Shore, drive around the island, hang out at lots of beaches (guarded by good ol' SPF 100 of course), and eat lots of yummy island food. I keep seeing rumors of shrimp trucks. Um, yes please. And sushi, oh the sushi!!
Well, it's about time to go, so Aloha! We'll be sure to post plenty of pictures.
So tired, so tired. Just got home from a long visit at UWMC and am pretty pooped. It was a fine visit and nothing too wild happened.
Labs were mostly fine, and we'll be doing a few tweaks here and there. We did talk about my upcoming visit with cardiologist in early September (I saw my nurse practitioner today). I told her that if the echocardiogram I have in late August doesn't show improvement, I want to start thinking about transplant. And she put on the brakes.
I know it's her job not to rush things and to give the meds time to work. But we are now past the window where the meds would have worked, if they could. She talked about how you don't want to transplant too early, because the transplant meds can be hard on your other organs (kidneys, liver, etc). I told her I was aware of that (I've done pretty extensive research already) but that at this point, I'm getting really close to my wit's end.
Honestly, I'd rather get a new heart, go on with my life, and do all we can to help my other organs as we go. Plus, new meds come out all the time, and my hope is better ones will come on the market. Also, the meds I'm on now have lousy long term effects to my lungs and eyes, and if I got a transplant I could get off those.
I told her I can't just keep waiting for years for the meds to possibly work. My life is dramatically on hold right now and I don't want to stay in a waiting pattern for years. It's not fair to me, to Nick, or to our families. We are literally stuck and can't move forward with the life we want until I get somewhat better.
That was about the time the tears started. I'm glad I let her see my frustration and sadness. The docs need to see that. So by the end of the conversation, my NP said that we can certainly have more discussions about transplant as we continue down this path.
I'm perfectly happy to wait until September when I talk to my doc. But if she's not ready to make an action plan at that point, I'll have to get another opinion. Because every time I'm in the hospital, the other docs I see say it's time to get seriously going on transplant evaluation, but then I see my doc as an outpatient and she's wanting to "wait and see". I do know she knows my history better than anyone, and has my best interest at heart. My NP told me today that I'm at the forefront of the entire department's minds because I'm having these new symptoms (Sparky firing, etc) and they are all trying to do the best thing they can for me. I actually was stopped by 2 cardiologists, an electrophysiologist, and 2 nurses as I walked down the hall, just checking on me and saying hi.
The more I think about it, the more I think my NP may have just been giving me "the company line" about transplants, but maybe she's in the dark about what my doc and her counterparts are thinking. As I've learned from reading lots about transplants, it's wait wait wait wait then all of a sudden it's go go go go!
One other thing that happened today is my doc signed the paperwork for a disabled parking permit. I've put this off for a long time, thinking that I can make it, or having Nick drop me off a the door. But I've decided to put aside my pride and just have it for those times parking is just too far to walk. It really can make the difference me barely making it in the building and then spending the rest of the night paying the price, or feeling fine.
So that's all I've got for right now. I'll keep you all posted on any further developments, but as of right now we're just gonna "wait and see". : )
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,
Tuesday, I decided to stop being a lazy bum and go back to the YMCA (I hadn't been in 2 1/2 weeks). I did my 12 minutes on the treadmill fine, although I was feeling some weird heartbeats, so I slowed down a little. Then I went to the Precor stationary bike machine in another room and got going. There was one other person in there, but she left right as I was getting on the bike. After about 3 minutes, I decided I was hot, so I turned on the fan at the other end of the room, and then I got back on the bike. Then it happened.
All of a sudden, I felt crazy dizzy and I started to breathe deeply to clear my head. Next thing I know, I woke up on the floor.
When I woke up, I felt like my heart was going to explode and I didn't know where I was. Then I realized the huge bike had fallen on me and the full weight of the top of the machine was on my chest (right on top of Sparky, no less).
I screamed for help 4 or 5 times, and then people started pouring into the room. I told the YMCA people that I had a heart condition and that I blacked out. The next few minutes are kind of fuzzy, but the ambulance got there in about 2 minutes (nicely done!), and I had paramedics asking me a million questions, strapping me to a backboard, putting me on a stretcher, and getting me in the ambulance within just a few minutes.
Let me interject here with what we've determined actually happened. It took a few days to patch this together, using the paramedics notes of what they saw, the YMCA employees stories, what I remember, and the information we got from Sparky's readout. It seems that while I was on the bike, my heart went into ventricular tachycardia (VT). That's where the top and bottom chambers of heart beat out of sync and go really fast. It doesn't always cause sudden cardiac death, but it's pretty common that it will, so that's the reason I have Sparky.
My heartrate got up to 250 beats per minute (I'm normally at 80 these days). Because my heart was freaking out, my brain didn't get enough blood, and I blacked out within 2-3 seconds of the VT episode. Then I fell off the bike, but since my feet were still in the foot straps, I pulled the bike over on top of me, slamming the handlebars right into my chest (mostly on Sparky. What are the odds?). Then while I was on the ground, Sparky shocks me to get my heart out of that dangerous VT episode. And then I wake up. I think I was out for about 3 minutes, because my iPod had gone past one whole song from the time I blacked out to the time I woke up. (fyi, the song I missed was 50 Cent's "In Da Club" which I'm bummed about. "...come give me a hug.". ; ).
All in all, it was a lousy 3 minutes.
When I got to the ER, the docs actually didn't think I'd had a shock. But when they downloaded Sparky's information several hours later (they call it interrogating him. Hee hee. I imagine a spotlight and a bad cop with a cigar screaming at Sparky) they found the VT and that ol' Sparks had done his job. Even after a 200 lb bike fell on him. Sparky, you've earned your keep. Also, note that I do recognize the irony that I was hit by a stationary bike. ; )
While I was in the hospital, they also did another ultrasound of my heart to see how's it functioning. Bummer news-it hasn't improved over the last 6 months. It's actually gone from 22% to 18%. Grr. The goods news is the docs say is not enough of a change to make a difference in how I feel. The bad news is they really hoped that 6 months of high doses of my meds would have caused that number to jump a lot. So we may be having more serious conversations again soon. I'll keep you posted on that.
They released me yesterday, with scripts for potassium, more beta blockers, and then they told me I can't drive for 6 months. And that's when my jaw dropped. Evidentally, when you black out and have an ICD shock, others don't want you on the road with them. I'm being a smarty pants, but honestly, I completely agree. If I had been driving when this happened, I could have killed myself and who knows how many others. I didn't have enough time from the time I started feeling dizzy until I blacked out to pull over. In the past, I had been told I should have plenty of time before I passed out, but it turns out with my lousy heart function, I black out sooner than most people would in the same situation. Argh. So I will be bumming rides from people a lot more often...friends- beware!
I love you all!
We've had the most mild spring-too cool by Seattlite's standards. And I've loved every dreary, 62 degree day. However, a few days ago, we hit "Summer". All 97 degrees of it. And here's the problemo-No one in Seattle has air conditioning! That's a brutal combination.
Well, Nick was a genius and got us an air conditioner for our bedroom, but with that heat, it was still almost eighty in the dead of night.
And that's when the full heat effects took their toll on my poor little (well big) heart.
I just hadn't been feeling right all day (I was dizzy, and overheated, and weak). So as I tried to go to sleep, those things just got worse. I started gasping, feeling pukey, and if I even touched my stomach lightly, the pain was really bad. These are classic heart failure symptoms, all due to water retention around my heart and other organs. Blast.
We put a cold towel on my forehead and I ended up taking a lasix (diuretic) at 2:30am and peed all night. So it was a lousy night's sleep, but by morning I felt quite a bit better. The scary thing was I hadn't felt that bad with heart failure stuff since right before I was diagnosed. So all the bad memories came rushing back and for a little while, we thought we were going to have to head off to the ER. But we made it through the night!
I went to the cardiologist the next day (yesterday) for a regular check in. She ran all my labs and said they were a little high, but not terrible. The lasix did the trick!! Her main advice was to be extra cautious in the heat, stay hydrated, take extra lasix if needed, and don't push it. I'm not fabulous at "not pushing it", but I'll do my best.
Other than stumbling through the heat like a zombie, things have been good! We're headed to a party tonight at our friend Jillian's house- and she has a pool!!!!! I knew I was her friend for a reason. ; )
Oh, for a quick "what's the big picture look like" update- We are really close to having me on the full doses of my heart meds (it's taken 8 months to get there). I should be fully dosed up by August and then they are going to do another ultrasound of my heart to see how my heart is functioning with those meds. At last ultrasound, it was pumping at 20-25%. Normal is 70%. So I can't wait to see what it is!! My guess is 35%. 50% would be just dreamy though. :)
After that test, I'll meet with my doc and we'll determine the next course of treatment (maybe some new drugs). If the function isn't improving much, we will probably have to start kicking around the idea of a transplant sooner than later, but I have a feeling that won't be the case. PMA (Positive Mental Attitude)!
Anyway, I hope you all are having a great summer! Texas friends- come up and see us to cool off! Next week is supposed be lovely and in the 70s!
Love you all!
I was just sitting on my couch, watching Oprah, and thought I'd drop you all a line. (Not that Oprah was boring. Far from it- she had on Kristie Alley who is consistently a train wreck. Good tv, for sure)
Not too much exciting news around here, which is superb on the health front. I'm trying to kick a brutal cold that has NOT caused many heart failure symptoms this time (boo-yah!). Colds just like this landed me in the hospital twice in the winter, so this is a big improvement!
Nick's sister's (Mandy and Kelly) and their families came up from Austin to see us over Memorial Day. Oh, the fun we had! We went to the aquarium, which rocked. You can pet starfish in a big tank. Very fun for us, less fun for the starfish I'm sure.
Addison, our 21 month old niece, had a fabulous time and was as cute as button (even cuter than BoBo, but don't tell Nick I said that). She actually loved BoBo, but her love was unrequited. That cat hissed, snarled, and was generally a jerk to her. And Addie laughed and laughed. She hasn't quite learned to read her audience yet. : )
So as summer starts, I'm excited to see what the season will bring. With this whole heart thing, I really felt like I missed last fall, this winter, and a good chunk of spring. So it's pretty important to me to really feel like I can put my "I was here" stamp on this summer. : ) I just want to spend lots of time outside in the lovely city, enjoy the parks, hang out with our fun friends, and relax. Mmm, sounds good.
Another thing I've been thinking about is taking a break from all this heart stuff. You know, just not have this condition for awhile. Ok, I guess that won't work, but I do want to stop giving it so much energy. For the past few months, I've been on a mission- learning all the details I can, talking to doctors, and researching online. Well I'm tired of it. I'm just taking a break from worrying about it all.
I'll keep taking my meds (duh), going to rehab, and eating pretty well, but I'm not on a mission anymore. I don't think it will hurt anything, and I would love to put that energy somewhere else. So that's the plan. I'll keep you guys updated on how it goes. And I'll do that with a nice glass of iced tea in my hand and my feet propped up!
I am completely drained, exhausted, part of me wants to cry, and part of me is completely at peace. Most of the day the doctor's office will do that to you.
Today was a big day I'd been looking forward to. Today was the day I was going to get to meet with my cardiologist who I haven't seen in 4 months or so. I usually see her nurse practioner, but I asked to see the doc because I had been feeling so lost and needed to get the state of the union from her.
Nick warned me not to get my hopes up too high for the appointment, but in typical Jana style, I thought of nothing else for the past few weeks, wrote up an extenisive list of questions, and read every article I could find online about my condition. I'm nothing if not thorough. : )
Well, to me, the appointment was a big fat bummer. Nick saw it very differently. The main thing I was hoping to get was an action plan of something different we could do that could really improve my energy and quality of life. Maybe get Sparky another wire to help the pace of my heart. Maybe try a new drug. Maybe some fancy new treatment. No. She said all she wanted to do was keep ticking up my drugs. And I started crying in her office. I just felt so stuck.
She did have quite a bit of encouraging news to tell us, but I was in no mood to hear it. She said the results of the bike test I did a month ago were actually pretty good (the nurse practioner read the results wrong) so my heart can withstand excercise pretty well, so keep up the cardiac rehab. She also said my heart has shrunk a tiny bit (about 4 millimeters). That is a miniscule amount, but it's not getting bigger. And that transplant in the next few years seems pretty unlikely. Which is certianly good.
All in all, it was an ok visit, but I told Nick I think the problem is I almost feel like she's being too positive about the whole thing. To me, she's acting like this condition is not that big of a deal. Nick sees her as being optimistic and not dwelling on the bad stuff. I'm just not sure if I like her approach. So I'm kicking around the idea of getting a second opinion. Not that I think someone else will say something different, I just wonder if I'll like the way someone else says it. I haven't decided yet, but I'm positive I need to sleep on the idea and not making any decisions when I'm this loopy.
So the second doctor's appointment...I don't think I've told most of you this yet, but Nick and I decided to go see a Perinatologist (high risk obstetrician). We aren't ready to have kids yet, but we thought it would be a good idea to talk to someone that handles cases like mine, just to get the lay of the land.
It was to our good fortune that I was referred to one of the best perinatologists on the west coast. He actually invented a test that looks at the aorta and can tell how the heart will respond to pregnancy. He routinely has 2-3 people with cardiomyopathy in his care at any time. He's kind of a big deal. : )
He was straight-up awesome. He was super blunt, but also very caring and he was acutally willing to give me options and tell me what our course of action would be in each scenario. He gave me the facts and I will love him forever for that. : )
He starts off by saying that he virtually never tells anyone not to get pregnant. He likes a challenge, he likes to help people have their families, he's not scared of much. He said I was one of about 4 people he has told to not get pregnant right now in his 30 year career. My heart's pumping capacity is simply too weak and the likelihood that I would die during pregnancy is almost certain.
But he then went on to say we need to wait about a year to 18 months to see how much my heart has improved. He wants my ejection fraction to get to 50% (it's 20% right now). If we can get there, we should be able to have a baby. I would be monitored incredibly closely (like going to the doc 2x month at first, and then going to 2-3x week near the end). I may end up on bed rest. And it's still risky, but he said people have babies all the time like that. This is the best case scenario.
The next scenario is if my heart gets worse within that time. And if it does, then it's transplant time. And he said having a baby a year after a transplant is no problem at all. Almost as low risk as any other pregnancy.
Then there's the scenario where my heart improves some (say to 35%) but I can't get over the 50% hump. That's the hardest scenario. We could weigh the risks of pregnancy at that point, but it would be a very serious conversation. We could also wait and see if my heart got better in the years that followed. As much as we don't want to wait for years, the doc said we could wait 5-10 years if we have to. I just hope that's not the case. And then there's always adoption. We'll have a family no matter what. It's just a matter of how we get there.
We talked about drug changes, and tests he would do when I got pregnant and it was all very good information. He also talked about how much weight loss can help, so that is our next plan. It is one of the only things I can control in this whole mess, so that's where I'm going to focus my attention for now. It's got to be slow, but I know we can do it. He wants to see us again in a year to see where my heart's at, and we'll reasses then. And he said to take this year to relax, enjoy each other, work on getting better and don't worry about this stuff. We'll handle whatever the answer is when the time comes.
All in all, I was SO relieved to talk to this doctor today. It was just what I needed. I felt understood, encouraged, excited, happy, informed and hopeful. That's exactly what I needed and it makes for a great start to the weekend. Nick was super happy with the appointment too and I think we can let some worry go for now. I may still make the second opinion appointment, but maybe not. Maybe I just need to trust the process and give the medicine's time to do their job. Patience is not my strong suit, but this diagnosis is turning out to be a crash course in patience. So I'll try.
I'm going to pass out on the couch now.
I love you all!
ps, did anyone see Grey's Anatomy last night?? Whew, I had to pause it 3 times just to let my heart calm down. McDreamy!! No!!!!
I don't have anything groundbreaking to tell you today, but I've been mulling some things around in my head and I thought I'd get them out in the open (maybe this will give me the guts to do something about it).
Yesterday I had an appointment with my nurse practitioner to make sure my labs looked ok after my trip to Vegas. They all checked out. : )
We did talk about my prior test results (that bike test I did a few weeks ago and my ejection fraction). I told her that this trip I took really showed me that I can have fun and be happy with this illness, but it also reminded me how very limited I am.
See, I've been thinking a lot about the future and how I want that to look. I know I don't have a ton of control in this whole situation, but knowing facts helps me make contingency plans. Which I like. I come from a long line of planners (shout out to ALL the women on my mom's side :) and "well, let's just wait and see" is about the most annoying phrase anyone can say to me. And it seems like that is ALL the doctors tell me lately.
It occured to me that I feel like I'm getting the same treatment plan as the docs would give a 70 year old. It's like they are ok with me spending a vast majority of my time resting on the couch. I'm not ok with that. The bar needs to be set higher for me. The way I am today, I absolutley could not take care of a baby. I can't work 40 hours a week. I can't take a vacation without a wheelchair. These are important things to me.
I'm also getting frusterated with the treatment options I've been given lately. Meds or transplant. Really? It seems like there is a pretty big gap between those two options. Is there nothing they can do to make me feel better and have more energy? Is there a clinical trial I can be part of? Is there a procedure we haven't talked about?
While telling this to my NP, she did tell me there is the option of putting another lead onto Sparky (which will make him a biventricular defibulator) and other lead will help with the sychronization of my heartbeats. Evidentally, that usually gives the patient a lot more energy and can improve the ejection fraction. Ok, why has no one told me this before? That right there makes me wonder what other options are out there that no one has thought to tell me before.
I also talked to my NP about transplant a bit. She said you have to wait for a window of opportunity with a transplant. You can't do it too soon and you can't wait too long. Well, I'm not feeling 100% confident that they are going to catch me in the right window because they only seem to be doing these big tests when I put up a fuss. If I hadn't been a whiny baby and groused about feeling lousy for weeks, they wouldn't have done those two tests until next year. And the results as of now were bad. Who knows how they would have looked in a year?
I think I'm unintentionally fooling them with how I look when I go to doctor's visits. I'm going to quit wearing makeup and taking a shower. Then we'll see what kind of tests I get. ; )
So all this mulling keeps leading to one thing. Have a heart to heart (heh) conversation with my cardiologist and tell her my thoughts. Bring up my serious concerns and ask for straightforward answers. I do understand that my doc honestly may not be able to tell me what may happen and in what timeline, but I at least want to know what the studies have shown and what she has seen in her experience. And maybe ask her to do some additional reserach. Good grief, that hospital has earned enough money on me, I think it's only fair.
Sorry for the long, boring post but I thought some of you might be interested in the more clinical side of this.
I'll keep you posted!
Ahhh...vacation. Is there anything better? Additional vacaction? Ok, that would be better I guess.
I got back from Las Vegas last night at midnight- whew. I had a total blast and loved every minute I spent with Sara and Jenny. : )
I got in on Friday night and met the girls at the hotel. We stayed at Jenny's timeshare and it was fabulous! It had 3 (count em, 3!) bedrooms, so we each got our own room. Holla! And there was a private veranda that is bigger than our living room, dining room, and kitchen combined. Awesome I tell you.
We spent the whole weekend lounging at the pool, enjoying exotic beverages, eating yummy food and laughing. Tons of laughing. : ) We gambled a bit and saw a few shows- good times!
Here's some unbelievable news- I didn't get sunburned! SPF 70 in a spray can rules. I've heard rumor that you can get SPF 100 now. Oh, it's too much to hope for! I did have to put zinc oxide on my Sparky scar to prevent it from burning. The doc that said that a burn there would hurt like all get out. Ok, she said it would hurt, but I can only assume the amount would be "like all get out".
I did take all the precautions I could to prevent me getting heart-sick. I got wheelchair service at the airport, cause that's how I roll. ;) (Thanks for the joke Jillian). It was honestly a lifesaver. I guarantee I couldn't have walked to the gate without passing out. The real bonus is that I got to bypass all those healthy hearted suckers in the security line! Ha, that wiped the sympathetic look right off their faces. : ) Kindness for the ailing goes right out the window when the ailing get to cut in line. Heh heh.
Jenny and Sara also suggested we get a wheelchair from the hotel and use that around Vegas. That was really taking one for the team...do you know how hard it is to find wheelchair ramps in a casino? Hard!
Wheeling around Vegas was great, but not without it's snags. The first day, we got a bum wheelchair. The girls thought it was hard to push, but we kept going. Until we were crossing a cobblestone street in front of the Venetian, and we hit a bad cobble. And the little front wheel of the chair fell off!!! In the crosswalk! And the chair tipped forward and I almost fell out! (Nice driving Jenny. ; ) Anyway, a nice guy stopped and helped us put the wheel back on. Ah, the kindess of strangers!
We had a fantastic time, but I definately did feel the effects of the bum heart. I'm not sure if it was from doing so much (although we did kept a very relaxed schedule) or what, but my hands were super shaky, and I was nauseated a lot. And there were a few times when I had to prop up my head becauase I couldn't hold it up while we were wheeling around. I made a Drs appointment for this Friday just to check in and make sure all is ok.
It was a wonderful trip, and exactly what I needed. It took a lot of extra planning, but knowing I can go places again is so liberating!! And next time, Nick will get to enjoy the short security line with me! : ) Yahoo!
Man, it's been awhile! The good news- I've been feeling really good lately. : ) I'd say I've had about a 3-4 week good run, where I haven't had a bunch of PVC's and I've had good energy. Yahoo! I'm not really sure what the difference is here, but I'm happy for it. Don't look a gift several week run of good heart feelings in the mouth, I always say. : )
So that's the good news...now for the confusing news.
2 weeks ago I had a pulmonary stress test done. This test was a real bear. They hooked me up to a 12 lead EKG (which oddly enough only had 10 leads. I asked for a discount; they said no). I also had stickers on my forehead, a headband with sensors on it, a blood pressure cuff, and I had to wear a mask over my mouth and nose (like in Silence on the Lambs, but with a hose at the mouth). It was quite the get-up. Then I had to ride on a stationary bike.
They started off at no resistance, easy peasy. Then they upped the game. It got really tough, but gradually. I did the bike for 17 minutes! I was all proud of myself because the doctor kept saying "Good! Good! Excellent job!". I was pretty sure I rocked the test and blew them all away with my skill and excercising prowess (being that I've gone to cardiac rehab for WEEKS now). The one scary part was at the very end, my heart rate got up to 184. Sparky starts charging at 188. I had no intention of being defibrillated on a bike, so it's good that that's when the test ended.
So today at my doctor's appointment, I got the results of the test. And they weren't great. My nurse practitioner (NP) talked me through the results, but it was pretty confusing. The gist is that if I had a healthy heart, they would expect me to score a 31 on this test (sorry, I don't know what that scale goes up to...I don't think it's 100 though). I got a 16. 14 is the cutoff for "Severely limited". If I got a 14 or less, the docs would start looking pretty seriously at transplant again. Ack.
My NP was taking the positive approach- "Well, it's 16, not 14, so that's good!". Yeah, but 16 seems pretty darn close to 14. She said this number paired with my ejection fraction of 20% means that even though I'm feeling good and looking good (not bragging here, I just mean I have good color and am perky), these tests continue to tell the story that my heart is quite damaged and we need to keep a very close eye on it.
I decided that I wanted to talk to my cardiologist about this test and my condition as a whole. A State of the Union if you will. So my NP is trying to get me an appointment with the cardiologist within the next month or so.
In better news, I'm going to Las Vegas this weekend for a girl's trip! We are celebrating my wonderful friend Jenny's birthday. Jenny and her sister Sara are my best friends from Red River, NM, where we lived when I was in high school, so it will be awesome to catch up. This is my first trip involving a plane, so that should be interesting. I am going to play this heart thing up big time and am getting wheelchair service at the airport. Brilliant! Anyway, I'll tell you all how the trip goes, but I'm sure it will be fabu!
Ok, that's all for now...
I hope you are all doing well...I love you!
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!!
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!