Friday, August 30, 2013

Jenny- EP Study and Ablations

This week's post is dedicated to Joanne!

I've had two ablations. So I'll explain each type of ablation and what is involved with both procedures.. This week we'll go over ablations. Next week I'll talk about open heart/ablations.

I entered the Operating room and was given some medications.  They told me ahead of time I would not be asleep, so I was anticipating some pretty bad stuff!  I wasn't asleep but was given enough medication to think the clouds on the ceiling tiles were moving. They weren't!  They give you medications to make you forget. So I asked for 6 hours straight when I could go to the gym! I also kept telling them if they needed to aggravate me to go get my husband because no one can make me mad faster than him!  Oh well, the stuff my poor docs have to listen to while I am having surgery!

The first step of a ablation is to conduct the EP study.  This is the "mapping" process that is used to identify the overactive nerves inside the heart. So they put you on a table and make a tiny incision in your leg. (Usually your right leg.) You don't feel the catheter at all. It's inserted into a femoral vein.

It sounds weird to having surgery while awake and it seems pretty scary.  But once you are in there it's not scary.  I was more excited to get it done than scared. Because I wanted a normal life.  I jokingly told the team, "Let's go play laser tag in my heart!"  That's kind of what it's like.  The surgeon will ask you questions in order to try to get your heart to speed up.  Sometimes they try to make you mad or ask math questions. It's very hard to answer math questions when you are on loopy drugs.  Since most people with Inappropriate Sinus Tachycardia speed up while standing it's hard to trigger the heart while laying down.  But they need to trigger you so they can see the messed up nerves "light up" on the screen.  Sometimes they have you open and close your hand and make a tight fist because that will speed up your heart if you have an electrical glitch like me.  (Go ahead, try it, see if it works on you.) I'll wait.... You'll have several large TV screens above you which you will be able to see.  You can see each blinky light (which is each area that needs to be abladed.) They use several technicques to visualize the area.  You have a lot of equipment around.

Once they get a clear map they can decided which areas they are going to ablade.  The mapping process can take a long time. Mine took several hours.  About 6 hours. But they can go anywhere from 2-10 hours. When they are going to start the actually ablation they trigger some nerves.  You can feel what they are hitting sometimes because you will feel a sensation in your arm or in your diaphragm. When they hit your diaphragm nerves you feel a jumping sensation in your belly.  Very weird.  They have to avoid hitting the phrenic nerve during the surgery because that's the nerve that moves your diaphragm so you can breathe.

You can feel when they ablade. It was intense but I didn't cry.  The doc would yell "Fire" and the techs in the next room would fire the laser. I'm not exactly sure how that part works.  Very important that you don't move during this part!!! I had a mixture of hot and cold ablation.  But it's strange because you'll drift off and someone yells "Fire!" it's a very surreal experience. But you just stay still and it hurts for a few seconds while they burn each nerve. It's not bad. Sounds much worse than it was for me. Sometimes they have to use adrenaline to speed up your heart to see where the problem is located. They used adrenaline with me, you feel your heart pounding and it's hard to catch your breath.  But it's what needs to be done in order to find the nerves causing the electrical problem in your heart.

When they used the adrenaline I could feel my heart pounding and I felt the sensation of not being able to breathe.  I let my doc know and he told me he could see the problem.  Then he said he was putting me to sleep.  To get a better angle on the location my doc decided to go up the other leg.  I had about 5 points of entry in my legs.  They had found an AVNRT (AV Nodal Reentrant Tachycardia.) This was the cause of my SVT (Super Ventricular Tachycardia.) It's a nerve pathway that they say is like a dog chasing it's tail.  So when you are in that pathway you can't breathe.  It happens at the weirdest times like when you eat.  You can just be standing there minding your own business and your heart takes off like a racehorse.  It's not awesome.  But over the years I learnd how to calmly say, "Excuse me I'm in SVT can someone check my pulse/ox?  My doc was able to ablade the pathway.  I have a 99% chance that I will never have SVT ever again.

After you get through recovery after the EP study/ablation you will be asked to lay still for several hours.  This also means not getting up to pee.  It's very important not to wiggle your feet after the procedure.  If you are like me you'll want to move. Bad Idea.  Unless you like it when you start to reopen your incisions and a large man holds compression on your vein or artery for you for 20 minutes.  If you do they incision sites will open up and start to bleed.  I know because it happened to me.  A very large man was send in to hold compression on my crotch to stop the bleeding. It's a great time to ask lots of awkward questions!  It was kinda funny.  But unless you would like to reopen your wounds don't wiggle and do what the nurses tell you do!!!

You can usually go home the next day.  The recovery period is strange because you will feel burning sensations. For months. Off an on. You'll feel beat up. Picking up anything over 5 pounds will make your chest hurt.  That includes pushing grocery carts.  So be careful what you do after surgery.  The surgeons try very hard to burn as little as possible during these surgeries.  You can hear them counting off while they are operating.  I was very close to getting  pacemaker during my ablation.  The surgeons wait and if your heart clicks back on they continue.  If not they stop what they are doing and put in an emergency pacemaker.

Yes, that sounds scary but trust me.  You are totally safe in that OR.  They have control over everything.  So pick a fantastic surgeon and get on board.  Anything that gets you well is okay by me!

Friday, August 16, 2013


I finally got to see our new house today!!! Two weeks ago it didn't have grass and wasn't painted.  It's amazing what two weeks, sod, and a construction crew can get done!  It's finished and we move in a few weeks.  I am so excited to be moving on in our new life, in our new town.  It's pretty exciting.  Ava's new school is incredible and brand new. We signed her up for school this week and I can walk her to school in the mornings.  I don't know why this sounds like fun but I thought it would be a great time for me to talk to the kids in the morning and afternoon and get in some extra exercise! Looks like we are starting off the school year right.  Our family is doing great and we love our new town.  Miss all our friends from League City and hope to see everyone soon! Glad we had our new house to think about because it's been a pretty boring recovery.

I've spent the past week and a half sitting in my bed watching tv because my pacemaker wasn't set up correctly.  I've watched more tv then I care to admit the past month.  I'm stocked full of Orange is the New Black, (OITNB if you're cool) ,Breaking Bad, and Dexter.   I can't think of any more movies to watch and I'm really really sick of the apartment.  I also really miss our awesome friends and neighbors at our old house.  My friend Brian always helped me rehab from the surgeries and now he's too far away to walk with me!!! Hey Brian!!  I don't know any people at the apartment and it's too quiet around here during the day.

My pacemaker is setup exactly the way it was before but for some reason I needed it changed.  It might be because when we installed the new lead we had to connect it to a different location of my heart. I was going to wait until my 2 week checkup next week but decided that I couldn't wait any longer.  My cousin was kind enough to spend half her day with me going to the pacemaker clinic. Whoo Hoo for amazing cousins! My rate response setting wasn't right and I was suffocating in the car, with a really fast heart rate like I was running full speed with a heart rate of 150 while sitting. Taking a shower is also making me speed up too fast. It's not awesome. The tech said the water hitting my device is making it think I'm working out and speeding up my heart/breathing.  Dang this thing is sensitive! Guess I'll be taking showers backwards.

So we walk in and meet Robert, who looked exactly like Hank from Breaking Bad!  Yep, I'm definitely watched too much tv!  I explain my dilemma of not being able to laugh, sneeze, or walk without panting like a dog.  I should videotape one of these pacemaker adjustment meetings because they are freaking hilarious.  As the device is draped over your shoulder you have about a 3 foot area to move attached to the computer.  So you have to recreate what pisses off your pacemaker in that area!  Every surgery is different and I get new problems.  Last week I couldn't turn left, now laughing is a huge problem. I proceeded to get hooked up the machine and fake sneezed, did my trademark wiggle move, and fake laugh really hard so that "Hank" can see how messed up my settings were.  I thought about barking just to throw him off and see if he laughed but I resisted the urge. It's pretty funny to watch and definitely not how the older pacemaker users conduct their pacemaker tests.

"Hank" understood what I was trying to accomplish and helped me figure out a way to make it happen.  So he made some changes and I felt the pressure taken off my neck immediately so I could breathe.  It's actually pretty miraculous Steffanie and I ran around the building, jaunting through hallways, running through calwalks while I waved one arm in the air, wiggled and fake coughed.  I've lost all sense of modesty and decorum at this point and it's only about getting the settings adjusted.  So I ran around the building for 15 minutes and figure out if the new settings are going to be okay. It's hard to tell immediately and you actually really need to try out new settings for about  week before you really know.

You can tell when you get a really good tech because his first statement to me was, "Wow, you were really active, what happened in July?" So he got it. He knew from the recordings my pacemaker logs that I haven't moved off my butt since July when I ripped the lead.  I feel like the light switch is back on! I'm ready to move.  I haven't been able to get Ava's stuff ready for school or do any normal daily activities.  So I'm so grateful that "Hank" was there and able to adjust my sensitivity chip.  Yep, I'm a robot.  But aren't you glad I have a sensitivity chip? So the next time I make some jerkface comment ask me where my sensitivity chip went!

The day got even better because as we made our way to the elevator to leave a lady in her 60's asked which one of us had a pacemaker.  I said I did and she jumped to high five me, which was strange but great!  She said she "joined the club" in June and I told her I "joined the club" in February.  Pretty great way to end the day, especially since I entered the building having a hard time getting enough air to walk and and hour and a half later we're high fiving in the hallway.

So here's to you getting your high five for the week!! Amazing people are everywhere, so go out and make some new friends.  Call your old ones too.  We all could use some support!

Love this expression on Mason's face, He's like, "Dude, where's my hair?"

Friday, August 9, 2013

Jenny-Broken Heart Mended

Have you ever heard the quote, "Well Behaved Women Rarely Make History?"  It's something Perky and I always tell each other.  In times of struggle you have to dig deep even when you want to quit.  Plus, sometimes a drastic action is what you need to get your head in the right place.

I was in the hospital last week with some mystery thing and the cardio docs couldn't figure out what to do.  They sent in a surgeon I had in the past who did an experimental surgery on me.  We thought we'd try the surgery again to see if we could make my heart calm down.   He came to see me but said it was too risky and he was scared I'd have a stroke or a heart attack.   He seemed scared.  I cried because it felt he had given up on saving me. That was a rough day.  But I had to regroup and decide what to do next.  I am not a quitter.  

I made myself walk in the hallway to clear my mind.  And that changed everything.  The nurses chased me down yelling at me that I was in V Fib (which can lead to sudden death.) I told them I was fine but they didn't believe me.  Then I snuck out my room again, and it happened again.  Then 7 cardiologists and came to see me.  They had an idea what was happening.  I had hope again.  I was really praying they would find a problem with the pacemaker, not with my heart. Sure enough, they did. If I had "behaved" they wouldn't have found the problem.

Tuesday I went in for surgery.  Some guy was waiting for his cardiac surgery and wouldn't stop talking about his death.  He kept talking about the corener coming to pick up his body in the "meat wagon."   He said this in a waiting room of 25 people waiting for their heart surgeries.  You could hear a pin drop.  No one was talking but him.  Everybody somber, reflecting on what was about to happen.  I really wanted to tell him to shut up but I resisted the urge. It was seriously hard though!  I also wanted to tell him the surgeries keep us alive, so not to be scared of them. It's a miracle these docs perform everyday, it's a gift.  

Then they called me back.   I met a lady in her 80's getting her first pacemaker.  She asked me questions so I answered them.  I gave her my crash course in pacemaker implants.  I just can't seem to stop teaching wherever I go! They called me back to the OR.  The cath lab seems like a second home now.  The blue lights glowing seem reassuring in a weird way.

Foster, the pacemaker tech was there in the operating room with me.  He's the tech that went out of his way to design programming for me and April.  He's not a morning person, but I was really glad to see him.  Because he knows exactly how I need my pacer set up.  Everything was prepped again just like  6 months ago.  The nurse and I were cracking up that only one boob gets cleaned for the surgery!  They put the blue tarp over my face.  It's really aggrevating because my hands get tied down during the surgery too.  Your face always ends up itching and you can't scratch it. 

We started the surgery and I could feel my skin burning.  They used a cauterizing tool to cut out my old scar. I let them know I could still feel it so they injected more drugs into the skin around my incision.  Then I don't remember anything.   When I woke up they were strapping my arm to my waist and telling me it was over.  I was confused because you stay awake for pacemaker surgeries. The nurses were babbling about cardioversion.   I assumed they were talking about another patient.  But then I realized I was asleep the whole time.  So I asked them if it was me.  The nurses looked at each other and them they told me what happened.

They said during the surgery I went into atrial flutter and they had to defibrillate me.  They shocked me to get my heart into a normal rhythm.  The nurses in surgical care told me I had a burn mark on my chest from them shocking me. It's on the opposite side of my pacemaker.  Looks like a giant badge!  Here it is...

I've had a lot of time the past two weeks to think about what I did wrong.  I wanted to bring the kids on vacation.  I wanted everyone just to have a normal vacation.  But instead I ended up in the ER and came home broken.  I don't want to live like I have a broken heart.  But I think it's time I accept that I can't do what other people can do.  I'm going to have to watch from the sidelines.  It's not perfect, but I'll be alive and I will be able to watch the kids grow up.

I'm not in much pain.  Actually all my chest pain I've been in for a month is gone.  It was all due to the lead being in the wrong place when I moved it pulling Philip out the water.  I'm so grateful to be fixed again. To be almost whole again.

It's hard for everyone to understand why I want to move so badly.  But when you've been sick for so long it all you dream about.  I felt so much better with the pacemaker I just wanted to live my life.  But I  got a little too comfortable.   Getting shocked helped me realize I'm in a really serious battle with this heart.  The end game is going to be heart failure.  Which is probably why I push things the way I do because I never know what's going to happen.  It's why I tell everyone I love them a thousand times.  Because life is short. So mend your fences.  Take care of your heart and leave the world a little better than when you came into it. Have a great week!


Saturday, August 3, 2013

Jenny-How you break a Partymaker....

Monday I was not feeling well. Just a little bit "off" like you feel when you are getting sick. I ate lunch but felt strange and wanted to rest. I was lightheaded. I called my pacemaker clinic and told them I needed to come in right away. I thought the programming had gotten messed up.  Which happens sometimes when you get your pacemaker checked. If the technician clicks on the wrong thing they can change your programming!! So I thought that was what was going on.

I drove myself and Ava to the office. As soon as I stepped out the car I knew I was in serious trouble.  I couldn't talk so I couldn't alert the valet so I decided to try to make it upstairs where I needed to be.  I whispered to Ava to hit the floor button 24 and we were on our way.  I didn't think I'd make it out the elevator.  But I did.  Just barely.  I couldn't see where the office was so I looked around and motioned for Ava to go that direction.  Then whispered at her to open the door.  I knew I was going to faint so I laid on the floor, of an office with about 20 people in it.  20 heart patients and their families.  No one came to my aid.  Ava calmly waited in line behind people registering.  The front desk couldn't see me.  I went unconscious.  Then I woke up and yelled it was my pacemaker and I needed help.  Then Ava told them my name and my information. She yelled at the entire office to read my medic alert bracelet and that I have a pacemaker.  She got me help.

Next thing I knew was my doctor was there.  I asked him to make sure Ava didn't see anymore of this and he promised she was safe.  Then they tried to put me in a wheelchair but I passed out again and slid onto the floor with my leg bent behind me. So a nurse tied me to the wheelchair and they went to check my pacemaker.  I was in robot power down mode. It felt awful. I couldn't hold up my head. Then the paramedics showed up and took me to St. Luke's.

My heart twin April came to visit.  She figured out it was my left side. I couldn't move my neck, head, shoulder or left arm and breathe normallly. I was panting and gasping. It feels like I'm being suffocated.  Once we figured out what it was we called our wonder doc, Dr. Mehdi Razavi on his cell phone and told him we figured out it was the side with the leads and seemed to be the pacemaker. Some docs wouldn't appreciate being told by a patient what was wrong but that's what makes this doc so different. He listens to me.  He doesn't let ego block him from hearing me.

Fast forward a few days I had been trapped in my room for days with a dayglo bracelet on my wrist that says "FALL RISK" they gave me yellow socks too which means I'm not allowed in the hallway. But I knew if I didn't walk we wouldn't figure out what happened so I snuck out.  I changed my clothes so they wouldn't notice me as fast.  I went around the unit 1 lap and then the alarms went off and the nurses were full out running towards me telling me I was about to crash. But I wasn't.  I didn't even feel bad right then.  They said I was in V Tach, which can lead to sudden death. Several docs checked the montiors and confirmed the v tach. Then Dr. Razavi called and said it was the pacemaker. So I snuck out again. The nurse hates me by this point and thinks I am an idiot.  It happens again, they run at me again and make me lay down in the nurses desk.  I'm still not feeling that bad. They tell me my heart rate is 270.  But it wasn't.

So the whole crew shows up. About 7 cardiologists.  They changed some settings on my pacemaker and turn down the voltage.  I turn my head to the left and like magic I can do it.  Then one of the docs tells me I was breathing 150 times in a minute. People normally breathe 20 times in a minute. So it was awful.   The team realized right then what it was.  I moved my lead!! Yes, it was still connected, electricity was going through it. But it was moved so it was now hitting my phrenic nerve.  So every time I moved my shoulder, arm, or head I was hitting this nerve and couldn't breathe.  It was a Eureka moment.  We had an answer after days of not knowing what was wrong. After days of not being able to move at all.

So Dr. Razavi called me. He was amazing as usual.  He's going to operate on Tuesday.   As it turns out my heart is a little more horizontal than most hearts.  Fun fact, Did you know when you bend over slightly the bottom of your heart tips forward?  I didn't know that!  Docs often ask patients to learn forward in an exam. This is exactly why!  So they can listen to your heart better!  So my leads needs to be placed further away from this nerve.  But since my leads are screwed into my heart I may have torn my heart slightly.  We won't know for sure until he gets in there.   So my whole device will be removed, the leads will be in a new location and then we recover for 6 weeks all over again.

It's going to be a long wait until Tuesday because I can't move.  I want to see the kids but the slightly movement is shaking my leads and I can't breathe.  So I'm home but stuck in my room.   I'm so relieved my daughter knew what to do in an emergency situation. Something all our kids really need to practice with.  Make them remember vital information. Practice what to do in an emergency.  It's so important.

So next week Bob Marley and I have a date with the OR.  Then I'm be back to my normal robot self!! I promise to behave this time.  As it turns out you can pull hard enough to break a lead!!!