Jenny-Adventures with becoming mute...

I have a history of really rare heart condition called Inappropriate Sinus Tachycardia and this week I was diagnosed with a neurological condition called Spasmodic Dysphonia.  So I guess that makes me both a spaz and inappropriately tachy.  Ha Ha. I was pretty resistant to going to the hospital but by the time I made it to the Cardiologist I knew I had to be admitted. I was so tired I tried to sleep on Dr. Farmer's table which seems totally logical at the time.  I am super stubborn and I was convinced I could walk downstairs but I couldn't. I didn't have the energy and my heart was too fast.

I had a slight cold that I got from my kids.  I kept thinking that it was nothing but inside I knew it was so much more than just a cold.    I couldn't breathe, my airway was closing, and I lost the ability to speak, then my heart went nuts.  I had 10 surgeries so I would not be tachycardic and here I was back to being tachycardic and I was mute.  Great.  Jeremy had to pickup Ava from school so he had to drop me off mute at the hospital to check myself into the hospital.  It was not a good day! Mute, waiting to check in and my paperwork wasn't in the system yet.  But I couldn't discuss it with anyone because I was mute.  Jeremy felt awful about having to leave me there but I needed him to go get Ava.  I had to wait 2 hours for the direct admit paperwork but I eventually got a room.  It also happened to be the same exact room I was in 5 weeks before which was weird!

So this is vicious cycle and it seemed so cruel to steal my voice from me again.   I spent a week in the hospital.  The docs were content with letting me hang out for another week.  It was a very frustrating time because I couldn't speak when my airway was clamping down and you have to stay calm, while silently trying to communicate and it feels like you will stop breathing.  It feels like someone is choking me with their hands around my throat.  At the same time I have no ability to communicate.  It's the way I imagine people with strokes feel because they know what they want to say in their head but cannot communicate.  I've had a vocal cord problem for 5 years off and on.  I haven't spoken (irony) about it much.  I'm not sure why exactly.  I always hope it's gone for good then it comes back at the most inopportune moments.. But today I decided to share this part of my story too.

Many people don't know that I was completely mute when I started on Facebook 5 years ago.  I had just gotten off a breathing machine and had no way to communicate other than writing.  So I got on Facebook and starting communicating.  It was incredibly liberating to be able to "speak" to people and still feel like a useful person. But it was a long process to regain the ability to speak. I actually had to go through speech rehab to relearn how to talk because the muscles in my throat do the opposite thing they are supposed to do when I speak.  It's a complication from asthma and severe reflux.  I can only control it through controlling triggers. Of course, it's incredibly strange and just adds to my weirdness!

When I have a voice it sounds like this when the vocal cord is spasming so much I find it hard to breathe or eat.  I sound very robotic. I cannot speak at a different speed or volume and I cannot say anything faster than this.  It's extremely frustrating.  On top of it sounding very strange people often think I have some sort of brain injury or I'm mentally incapable of understanding them. So I often choose not to even try to speak. I just write a lot of notes. I couldn't even order my own lunch in the hospital because I didn't have a voice that anyone could hear.  I couldn't tell my kids goodnight!  But I facetimed the kids and waved a lot! Makes you appreciate your voice.

So last week each time my throat would clamp down I would make it out to the hallway to wave down my nurse and write what I needed on a piece of paper.  It's very lonely not being able to speak because I am such an extroverted person. But I find ways to still communicate.  I can still dance, and move, and write.  My cousin Steffanie came to visit me.  She heard my weirdo voice and very seriously said, "At least you aren't chain farting or something." I laughed so hard I couldn't move.  So there's always that.  I'm mute, but I'm not, in fact chain farting. Love you cousin!

I got admitted from my cardiologist's office.  He said I couldn't go home and that I was too sick.  So I spent an entire week staring at the four white walls of St. Luke's trying to figure out what to do next. I could have just sat there and watched TV.  But I wanted to go home.  No one would let me go home until I could control my heart rate. But no one seemed to know what to do.

I was unable to speak so I decided to figure out if I could find a pattern with my throat clamping down. I needed to be able to tell the ENT the series of what was happening. So I decided to conduct an experiment.  I walked in the hallway with my telemetry monitors on and found out I was walking with a heartrate of 119-127 before dinner.  Then I ate dinner.  Walked again.  Immediately I was out of breath and feeling my throat clamp down.  Alarms went off, nurses chased me down the hallway.  I turned around assuming they were chasing someone else but then I saw the light on my door blinking.  The odd moment when I realized yes, they were indeed chasing me and finding out my heart was over 144 just walking. Well, crap. What the hell is this now?  Is it my heart, Is it my lungs?

Everyone was quick to blame the pacemaker, including me.  But it wasn't the pacemaker.  It was my throat constricting.  Which made my pacemaker think I was running full speed when I wasn't! Eating was causing the problem.  So I took a muscle relaxer and went to sleep.  Then I walked again, my heart was slower and my throat was open.  I let the docs know my findings the next day.  They said my experiments proved the problem and that I needed to get to the ENT Center immediately to begin treatment. So just like that I got released.  Because I fought for myself. Because I figured out what the problem was.  Be your own advocate.

So I arrived at the ENT office basically unable to speak.  They wanted to know certain details, like my birthday. Normal things to ask but imposssible when you have a neurologic speech disorder.  Numbers are impossible for me to say.  You don't realized how much you depend on your voice until you don't have one anymore.   It's embarrassing when I go out and my voice is not my voice.  It sounds like a different person speaking, a robot.  Even if the speech office I was the lone weirdo unable to communicate.  It was humbling. I wonder sometimes if God just wanted to see how I'll respond so he just throws things at me.
I had written out what I needed to tell the doctor since I couldn't communicate.  He read my experiments and hooked up a camera to look at my vocal cords as I attempted to say numbers.  He said he knew exactly what this was, it is a vocal cord disorder called spasmodic dysphonia.  I also have severe largngpharyngeal reflux which is a complication from asthma.  It's destroying my vocal cords.  So I stopped eating. I went on a liquid diet.  

I'll be on a liquid diet through Christmas.  I feel like it's a scene in Vegas Vacation when I eat dinner,"Gimme some of the blue, and that other "stuff". Ha Ha. I made a ton of different soups and smoothies.  But it's working.  My throat is starting to calm down and beginning to heal.  Some days I sound kind of normal.  But I didn't realized how much voice inflections matter.  Without them everything sounds like a question.  So when you call me I sound like I'm saying "Hi?", like I'm not sure if I saying hi which is confusing for people!  
My voice is slightly improving but it's a long process.  So I sound like this most days (after I've taken all the medications.) I'm trying to remain positive and I hope to regain my normal voice soon. Until then I'm kinda trapped at home resting. I'm watching a lot of tv and trying to sit still which is very hard for me to do!! I've been cooking all sorts of things, then pureeing the hell of them. :)   

I'm trying to be a good sport but this has cancelled our Christmas plans. We cannot travel until I am well and this has been very disappointing to all of us.  I tried so hard to make it for Christmas.  I even shipped all our presents ahead of time this year. Only to have to ask Jeremy's family to ship them back for me. We'll have a nice Christmas at home.  We have everything we need.  It's just hard when life throws you a curveball. Of course, I remember that so many people suffer with one thing or another.  Whether it be medical problems or financial ones.  We all need to support each other on this journey we call life.  

So how do you handle crappy situations?  You remind yourself of all the things you have in life.  You be grateful for all the "small" things, like walking, talking, and kissing your kids goodnight.  So don't stress over not getting the "right" presents or if you haven't sent out Christmas cards yet.  In the end it doesn't really matter.  We have each other, we all more love than can be contained in this house, and we have skype to visit friends and family. 
Remember this year that not everyone has family around, or maybe they are going through a divorce or a death in their family.  Reach out to support others.  Even when they don't ask for it.  God Bless and Merry Christmas.  Sing some Christmas Carols for me.  I'll be singing them in my head for now.



I did in fact get our first Santa picture taken!!! Yeah for progress!

Jenny-When the heart breaks it don't break even...Dedicated to Dr. Mehdi Razavi

My celebration of being one year post open heart.  This post is dedicated to Dr. Mehdi Razavi.

Dr. Mehdi Razavi

Play this while you read please.... Because I like to be more be more complicated than necessary. :)

http://www.youtube.com/watch?v=Fsk3irwOjSk

Because (when the hearts breaks it don't break even) is kinda my life story.....Do you ever walk past someone and wonder what their life is like, what challenges they face? I wonder if people appreciate their lives and what each of us have been given.  When I hear people complain I think, do they know what they have?  Do they value their life, their ability to breathe, to have a working heart? My wish is that all of us love more, spread joy, that we support each other as people, as parents, and as a nation.

I have so much to celebrate! WHOOOOO HOOOO! A YEAR SINCE MY OPEN HEART!

Ava and Mason at her 7th birthday party.  I MISSED her birthday last year.

Wow, time flies.  A year ago I had open heart surgery and I was so ill I couldn't walk to the surgery holding area. It was in those last quiet moments with Jeremy not knowing if I would wake up after open heart.  What do you even say to the person who has loved you and you have been with for 14 years? I was praying by some miracle I would see my kids grow up.  I was hoping I would survive.  Instead, I walked 2 miles in the Cardiac unit 2 days after open heart.  I had a new lease on life.  Gosh, my expectations were blown away. Not only can I walk one year later, I can run again.  What you didn't know was that I worked so hard after the surgery because one of my best friends, Monique (and fellow blog writer) had been hit by a car while training for a marathon and had a broken neck in the ICU and I wanted to get back to her in Louisiana, and to get back to my little family in Texas. So I was properly motivated to fight!

I have spent the past year meeting fantastic people who are true survivors, who motivate me to keep...doing...more.  I'm in the process of training to become a volunteer for WomenHeart, our local heart support organization.  We meet with heart patients and their families and support them on their journeys.  To be healthy and to help other people is a dream fulfilled for me.  In the meantime, I'm staying very busy helping patients all over the world, online.

I know nothing in life is a given.  I cry every time after I get my kids home after each surgery.  I love to listen to them laugh.  To hear their feet running upstairs with them never knowing what we went through to get them safely with a heart patient mom.  Everything seems so much sweeter now.  I can even sing again, because have enough air in my lungs that I have a voice again.  Truly remarkable year.  I choose not to focus on the challenges we have faced this year, but to celebrate our future as a family.  We are amazingly blessed. Exceedingly lucky.

I've had some setbacks too.  Mostly because I'm still working on learning my limits. Because I feel so much better than I have in years that I forget to stop.  Contrary to popular belief, I know I am not Wonder Woman. But I'm still young and want to live the fullest, most beautiful life that I can. I want to run more 5K's and spend the rest of my life appreciating (and using) my rebuilt heart.  It's a well known thing that heart patients go through so much emotional turmoil with these surgeries.  We know the future is not promised.  So we enjoy life a little bit more, we love a little harder, and we celebrate our victories no matter how small.  Because these stairs, they are mine now!

We all have our challenges, this one is mine!! Being able to climb the stairs!

I started last week unsure of what would happen, or what my future was going to hold.  I spent 3 days in the hospital unsure I'd be able to climb these when I got home. It might seem little to some people but these stairs WERE something that was extremely difficult for me. (Kind of a symbol of success for me.) I got my pacemaker fixed last week and now these stairs are easy again! When faced with challenges I always try to focus on the good things all of us have been given. No matter, what the situation I encourage all of you to find SOMETHING good to focus on. Something to celebrate.

Adults never notice ladybugs because we're too busy looking up.  Children appreciate all the little things we walk past everyday. Kiss your children more often, tell them just how amazing they are, because we only get ONE life. So forgive me for being sappy.  I'm just so damn happy.

I'm made it through this year actually passing EKG's for the first time in my life, I can play soccer with my kids, I can be a dependable mom and wife because of this man.  I am in such shock that he was even willing to treat me, much less get me to this point in a year.  I showed up at his office because another doctor didn't have any idea how to fix me.  I am going to be here for birthdays, holidays, vacations.  I'll be able to see my children start families of their own one day. Something unfathomable for me to imagine last year when I was so tired I could no longer walk, or speak most of the time.

This extraordinary doctor below took me on (even though my case was extremely difficult.)  He was the ONLY Cardiologist I have ever seen that said he could fix me.   He knew the things I didn't say, he saw the frustration in my face, he saw that if given the chance I could have an amazing future.  This is Dr. Mehdi Razavi, my Electro Physiology/Superhero Cardiologist doc and the man challenged with my crazy heart.  Thank you for taking me on and seeing a future for me that I could not imagine. Thank you for giving me more time with my family and for always being there when I need your help.  Because no one thinks the way you do.  You are stuck with me forever.  Congratulations!


A year of healing, a year of gratefulness, a year of seeing my children grow, of appreciating every breath. Thank you Dr. Razavi for saving my life. I was born with a heart I could not use and you built me a heart that couldn't be stopped. Every good thing I do for the world or every great experience I will every have is BECAUSE OF YOU. Because you cared enough to do the impossible. Thank you for never giving up on me. Impossible for me to thank you enough. Yes, I stole your picture from the internet. :)



Thank you for fixing my whole heart because when it breaks it doesn't break even.

Jenny

Jenny-Setbacks are part of life...

We all deal with them, the setbacks of life.  You try and do everything you can to move forward but sometimes life gets in the way.  We had a major setback and I had to leave Mason with my parents longer than I expected to.  He was gone for 2 months this time.  Which is incredibly hard on him (and us.)  We have him home now which has been great. It's been so much fun to see the kids reactions to the new house and getting their new playroom set up.  We're finally settled in.  It's a brand new start for us. Mason is scared I'm going to leave him again and I can't promise that I won't. All I can do is try to focus on what I can change which is my attitude.

We got back our little prince who changed so much in 2 months! Mom and dad have been working hard on his speech.  He's telling jokes, being playful, and basically running the house!   It's been delightful to see his little face again, and hear his contagious laugh. To see Ava and Mason running through the house together has been amazing.  Such a blissful thing to see both of your children together, so happy to be with each other again.  I caught Ava putting away Mason's clothes for me this weekend!  So lucky I have such sweet kids!  So happy our Mason is finally home.  I can't say how nice it is to have everyone back together!

Last Monday we moved into the house, which has been awesome.  Really hard to fight with myself not to carry boxes, but I managed to unpack the house, slowly, piece by piece.  I also had to get reprogrammed last week.  I had to make a tough choice, either be able to workout easily, or laugh.  I chose laughing.  It's a problem with the sensitivity of the pacemaker.  I can choose to have it speed up my heart very quickly or very slowly. I can choose to have it be very sensitive or respond slower.  It's a hard decision. Because I get benefits and downsides to each option. I actually have to physically tap on my pacemaker to get it to click on faster at certain times.  Which looks pretty ridiculous I must admit.  I feel like I have a Reebok, pump button inserted in my chest! Ever feel like you just can't win sometimes?  I was having a bad week with my heart then I walked to get Ava from school. It started pouring.  Like Monsoon level, flash flooding, sideways, freezing rain.  I just had to ask, "Really God, this week is just going to be like this huh?" Sometimes you have to laugh through the rain.

It seems because we moved the location of the leads after I ripped them that the heart is conducting the electricity differently. It's just not as easy to program this time.  I had 6 blissful months of a heart that actually worked without having to think about it.  I have to think about it now, how to move without setting off something.  It hasn't been easy I'll admit.  I'll eventually get the settings just right but this is the part of heart disease people don't talk about.  Some of us don't get a free ride. But I get a chance to live, and I left a lot of people behind who didn't survive.  So I feel so guilty complaining at all.

Be grateful that you wake up everyday with the ability to breathe on your own, with a beating heart, and you don't have to calculate all your actions.  I'm always running through them.  Trying to figure out how to get to my intended goal and look normal/be able to breathe.  But when running up stairs is exhausting and causes you to breathe very loudly it's hard to cover up.  It's heartbreaking.  I'm usually pretty tough but this week has gotten to me.  I had 10 surgeries to be normal and I'm not quite there yet.  I might not ever be. But something I did get back was my ability to sing.  I didn't have enough oxygen the past few years to be able to sing.  I can now which has been amazing.  I didn't take it for granted.  We finally found a church that feels like home and I can sing again.  Just over a year ago I couldn't even stand during Mass because I was too weak.  I'm strong now and so grateful.

I get to raise my kids and see them have great new experiences in life. We'll deal with the rest.  But right now, today, I'm not where I want to be.  Setbacks are part of life, not matter who you are or where you come from.  All we can do is focus on the positive and try to get through each day, remembering and being grateful for all the things we have in this life.  For the chance I now have to see my kids grow up.  For the chance to be a dependable person again.  To be there for holidays, and birthdays, all the things I've missed over the years.  I'm really very, very lucky, even despite the setbacks.

Helping other heart patients has been my salvation.  Because it's something I can do to give back.  To be grateful for what I have been given, to share helpful information that only I know because I've had these surgeries.  No matter where you come from, we have setbacks, we have successes and failures.

Mason, our cute little guy!!!

Jenny-Being a parent is like wearing your heart on your sleeve...

Being a parent is like wearing your heart on your sleeve.  I've heard this saying most of my life but didn't really understand it until I had children.  It's so hard to see children fall, and not be able to catch them.  But maybe it's not our job to catch them.  It's our job to teach them how to fall and to get back up.  As parents we aim to raise independent, bright children who think for themselves.  I went to college with people who didn't know how to wash their own clothes.  Which shocked me because my mom and dad taught us everything about life (excluding cutting the grass and car maintanance!) So I'm determined to teach my children as much as we can to prepare them for life.  I'm trying really hard to not control everything and to be okay with that fact.  But it's hard when things happen to kids.  It's hard not being able to prevent all the falls in life.  That being said I've had another setback.

First, I should say that Ava is fine. But here's what happened. On Thursday, Ava and I were off to soccer, she was thinking about what the team name was going to be and daydreaming about playing.  Ava was holding her soccer ball and I was holding a bunch of water and my purse.  We were in a parking lot and I told Ava a truck was coming and to stay on my right side.  She heard me but I say things so often she doesn't always listen, do any of us listen all the time? Then I heard the ball hit the ground. I screamed and turned sharply towards Ava on my right, to grab her but she wasn't there.  She ran in front of the truck to chase her ball.  I flipped to my left side praying she didn't get hit.  There she was an inch from the bumper.  Thank God the driver was able to stop in time and was paying attention. It's was awful and overwhelming to think just that fast I could have lost her.

Will it be the last time something happens to one of my kids, no, unfortunately. We can't protect them from everything.  But it's so hard not to want to bubble wrap them and let them go a little bit. When I moved so quickly to find Ava I injured my muscles. I wasn't sure if I ripped my new lead so I ended up having to get checked out at the hospital. All is good, I didn't rip it but it's hard trying to parent with a body that is not 100 percent. I'm working on it and need to rest a few more weeks.

Today marks 6 weeks since my lead replacement surgery. I'm going to try really really hard to not break it again.  But with two kids and life I'm not sure if that's completely possible!  But I'm going to try!  It's frustrating having constant setbacks and I'm looking forward to getting back to normal life.  I miss the gym so much!!! But I'll have to start back slowly.  I still have a hard time walking past the weights because I miss lifting so much.  But I think I will be able to run again.  I'll find out more in a few weeks during my post surgery checkup. Until then I'm going to eat really clean and try to learn to sit still. It's not easy ya'll !

I was talking to Monique last night about everything that has happened for the past year for both of us.  We've spent a year recovering. In a few weeks it will be our year anniversies since her accident and my open heart. We were in the ICU at the same time, she was in Lafayette and I was in Houston. A year of rehabbing and surgeries, and successes and setbacks.  But we press on, we move forward, because we don't have another choice.  Because it doesn't occur to us to quit.  We wouldn't have it any other way. We are recovering because we're type A and when we set our mind to do something we make it happen.  No matter what.  But both of us have to extend our internal deadlines for some of these things that we want to do physically  In my head, I'm a 18 year old runner, but my body won't let me do exactly what I want, yet.  I'm going to try the best I can to get back where I want to be. But patience isn't a virtue I have conquered yet!!

Trying my best to focus to changing the things I have control over and accepting the things I can't change.  I'll get back in shape as soon as I am able to run again.  It's a journey but I see the light at the end of the tunnel now.  So thankful for my life and this year. It's taught me that nothing is perfect, but we're all trying to do the best we can.

Jenny- Growing up...Building rockstar kids...

Dr. Bud Frazier

Ava with Lisa and Rebecca (my sweet friends and Women Heart Leaders)

Most of the children in our town started school last week.  With the new year comes new dreams and possibilities.  It made me think about the people in our children's life and what influences us to be who we are as people.  Who knows which experiences give us that spark to help direct us where we need to be and how to get there?  It's something I think about often because Ava is almost 7 and we have talks weekly about "what she wants to be when she grows up." It's our job as parents to see the potential in our children and direct them where to focus their interests.

Last week I had the opportunity to meet Dr. Bud Frazier, the doctor who has done more heart transplants than anyone in the world.  He lives in Houston and runs a lab building heart pumps, operates on patients, and oversees their care.  He was kind enough to meet with our heart group at Woman Heart.  Dr. Frazier is a funny, gracious, humble man who told us about his experiences and his history.  He's a guy you would walk past in the grocery store, blending in with the rest of us without any air of superiority.  Getting to meet him was a gift.  Knowing the accomplishments this man has made to medical science made me think he must have known his entire life what he wanted to do with his life.  As we all found out, the most surprising thing about Dr. Bud Frazier is he could have become a dentist or Methodist Minister instead of world famous heart surgeon/inventor. It's all about the influences our children come across in their lives and their experiences. He looked at the world around him and saw a few career opportunities in front of him because of who influenced him.

Opportunities that come in life are sometimes unexpected.  Some people get to do what they love as their career, while others search for finding their place in the world, some don't ever get motivated.  Some people are able to take tragedy and spin it into something positive.  What started out as a devastating football injury changed the course of Dr. Frazier's history.  Is he had not been injured and had to retire his football jersey the world as we know it would have forever been changed for the worse.  Why? Because this man sees a problem and took it upon himself to fix it and instead he changed the world of heart surgery, forever. He invented the heart pump!!!

What changed Dr. Frazier into thinking about a career in heart surgery?  Surprisingly enough, it was procrastination of all things!  He had a research project due and a friend offered his topic for both of them to write about. The project was about transplants in dogs, and Dr. Frazier became interested in them.  He transplanted a spleen from one dog to another and took care of that dog every day for a year.  He bonded with that dog and was very upset when the dog died one year later.  Doing that project made him want to do transplants.  He continued operating on thousands of people, getting to hear their stories and being a part of their lives.  One 24 year old lady with two children was dying and was stuck in the hospital completely bedridden. She haunted Dr. Frazier because she wrote him everyday in the hospital asking to die.  She got her transplant and is living a full, beautiful life 10 years later because Dr. Frazier cared for her, not as just a patient but as a person. Some of those people stayed with him. Like the boy who gave him the idea for creating a heart pump.

This Italian boy was 19 and dying.  Dr. Frazier was operating on him with another surgeon and Dr. Frazier had his hand inside this boy's chest pumping on his heart when the boy opened his eyes and looked at him directly in his eyes.  At that time a heart pump did not exist and the boy died after Dr. Frazier was pulled off of him because nothing could be done at that time to save this boy.  But Dr. Frazier decided then to build a pump that would do what his hand could do.  The rest is history. He really made it sound simple, he had a problem and he needed to build something to fix the problem.  He made it sound as if he was working on car engines or something instead of hearts! He has to work with companies/manufacturers that are willing to build new heart pumps.  That's easier said than done which is the biggest frustration he has with his life's work, finding people to build what he needs. But they aren't far away from designing a total artificial heart replacement which would revolutionize the way people can live with heart failure.

Some of us know from a very early age what we want to be.  Others pick a career based on their talents.  But a select few accidentally, miraculously find their calling.  Ava could be the next person to invent something that changes tens of thousands of lives.  But we'll never know our true potential unless we keep looking for it.  Unless we help our children find their focus in this world.  That doesn't stop when we become adults but it's something we all should strive to work on.  Finding our place in the world. I'm still working on it...are you??

More information on Dr. O. "Bud" Frazier's work in link below.

http://www.texasheartinstitute.org/Research/Devices/

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!

Jenny-Adjustments

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?"

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!

Jenny

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!!!

Jenny

Sometimes when God closes a door, he nails the windows closed too!

     

Hi everyone...I want to apologize for my unexpected hiatus! After the last court date I wanted to take a week or two off to gather my composure and get a clearer picture of things, then I had some unforeseen health issues come up. With all that behind me, I wanted to tell you what I've learned, because I was delightfully surprised to find that something could actually be gleaned from all this!

     First, I was completely disgusted with the sentence given to Derek Perilloux, the man who nearly killed my daughter and myself because he chose to drive with a blood alcohol content of 0.16. House arrest is too good for a man who inflicted over $1,000,000 in insurance costs alone, not including my $45,000 vehicle he totaled and taking my nursing career from me! So, I thought..."what would be enough? Would ANYTHING really hurt as bad as the pain he's caused us?!?"... I decided there was NOTHING that could do that!!! No earthly sentence will ever do justice to the pain this man has caused my daughter, my family, my very LIFE! So, to him I say "karma is a BITCH! You'll get yours and no court, no victim like myself will have to make her impact statement to ensure your punishment".

     I didn't reach those conclusions easily. I went home from court that day completely disgusted. How could this happen?!? Why wasn't a harsher sentence imposed?As a person who always looks for the "signs" around me, I couldn't understand what could possibly be learned by all this! After weeks of deliberation, I came to one conclusion: this wasn't God's punishment, but that of a court filled with flawed, imperfect humans imposing what THEY thought was "good enough". Why wasn't God there to let me know things would be worked out somehow, some way? Because sometimes, we have to go on blind faith. We can't have the answers all the time, that would be too neat, too tidy. Sometimes shit happens, and you just need to hang on for dear life with all you have and trust that even though you have no control over the circumstances, things WILL even out in the end.

     Needless to say, I didn't wanna accept this. I felt so alone, so deserted. So many of you have told me how strong you think I am, how "inspirational" my story is. I wasn't feeling inspirational...I felt like a failure. I'm a control freak who has to have everything just so. Things and people outta my hands make me uneasy. Then, it dawned on me...maybe that was why I had the accident to begin with. Sometimes things, people we love, need to be taken from us, because they aren't right for us, and maybe so we know how much we can handle on our own, how strong we are. Without coming out of our "bubbles of comfort", we never truly know what we can do.

     You've heard people say "Sometimes, when God closes a door, he opens a window"? After these last few weeks, I say "sometimes God slams the door in your face and nails any possible alternative exits closed to prevent any hope of possible escape from the shitty clusterfuck in which you find yourself!!!"! You're stuck like chuck and MUST accept that which you naturally resist! Now, this is the part where everything came together for me! I felt alone, "woe is me, it sucks to be me sometimes".  Then, I naturally thought back on other difficult moments in my life, to remember how I got through...times where I only THOUGHT it sucked to be me because of surrounding conditions, but have been lucky enough to work through. I concluded that sometimes, when God locks me up to swallow my medicine, he gives me amazing people to help me through! I suddenly realized that all those times I thought I was alone when I was younger, I had my parents, big sisters and big brother to guide me through. In grammar school and high school, I had my best friend, Lizzie, to pull me through. Sometimes, after I got sick with my autoimmune disease then had my accident, when I had to have surgery after surgery, I had Jen to cheer me up and 
make me step back to see how lucky I am that my heart works the ways it's supposed to! And when it seemed that my family and friends were out of reach, I had my fiancé, and the best man I've ever known, Kevin, holding my hand through it all. I've also had all of you, telling me how brave I am. But, I want you to know,  I'm not brave, just extremely hard-headed and incredibly blessed with people who love me enough to make sure I get through it all! 

       The conclusion? No matter how our situations differ, just about all of us are lucky enough to have a handful of people we can always count on. We are never REALLY alone. Life sucks and, inevitably, we will all, at some time or another, feel that we are alone. It might seem we've somehow been foresaken, but even  windows that are nailed shut aren't shatter proof! It's just a matter of having people who love you enough, know you well enough, to help you break through them! When caged like an animal, fight back like one! Thanks to my awesome family, best friends-Liz and Jen, and especially my sweet angel, Kevin...and to all of you, without whom none of these important lessons could be learned! I love you all!!!

Jenny-The bucket list

Some people might see these things that happen in life as reasons to stop trying.  Reasons to stop living. That wasn't my experience with the other side. Getting so close to losing my life or life as I knew it made me just want to try harder to fight harder.  Not just for myself but for my kids.  So when you have one of these setbacks just don't forget to see the bigger picture. Lessons can be learned everywhere.

I didn't have an easy time with my pregnancies.  I had to go through a LOT of testing, medications, and trials to have our precious kids. So I don't take them for granted.  I don't think anyone should take having children for granted.  Because so many people can't have children, or never had the opportunity.  It's something that has fulfilled me in ways I cannot express. My kids have the greatest questions about life and offer some pretty great insights at times too.  Makes me feel like we must be doing something right. Since I was injured on vacation I've had lots of time to think!  I just started back at the gym but I try really hard to make sure everyone in the family is happy.  Mason wanted to go to preschool so I found one for him.  Ava has lots of plans for the summer too.

That being said we all have days when the kids are screaming and you are so tired you could cry but you can't stop.  You can't stop because you are a mom.  My two little driving forces are always there to make my realize what is important, who I'm fighting for, and who I need to teach each moment I have available. I'm so lucky to have them.

So we work on life lessons, we play, we explain things over and over again.  Aren't we all searching for something? Trying to learn something new? I hope I never lose that enthusiasm for life that children have, their inquisitive nature, the many questions they have about things I've never thought about.  Put me at the kids table during Thanksgiving.  I'll have a great time.

I have a lot to do this summer.  We just moved to a new city and I had to get everything set up.  We're also on the hunt for a new house.  So these things have taken up a lot of time.  But Ava has a bucket list.  Yes, our six year old keeps a running tally of things she would like to do and it's my job to make them happen. I'm not exactly sure how this happened but she makes sure I know what's on the list. I'm basically a part-time chef, teacher, driver, and all around planner.

Making promises to kids (and keeping them) is really important.  So when I say I'm going to do something I really try to make it happen. So in between writing deals, making offers, working out, and cooking I've been subjugated to make these dreams come true.  Which is really more of a gift to me than is it to Ava.  Because I get to experience these things with her. So we took the family vacation. We showed Ava the ocean. She got to meet a famous dolphin.  This week it was seeing the movie Turbo, without her screaming brother, go to a trampoline place with Stacey and me and literally bounce off the walls. Next week it's making a pineapple upside down cake (Seriously where does she come up with these ideas?) and riding a horse. Not at the same time!

Stacey and I were really excited to go jump and happily got ready to go without thinking other parents wouldn't be jumping.  The thought just didn't occur to me.  So we went today and for an entire hour we jumped, and laughed, and fell, and bounced off walls. I jumped in the foam pit and climbed out cracking up laughing.  Yes, I was one of the only adults out there.  Why? It made us sad to see parents there on their phones, on their computers waiting in the lobby.  Sure, we all have stuff to do.  Not every minute can be dedicated to fun. But these moments are the ones we will treasure. These are the best days of of lives.  The ones we can spend together.

But in 10 years or 15 years is any of that stuff going to matter if we didn't spend this time with our kids?  No, it's not.  Their dreams should be our dreams too.  That's the way it should be, because we brought them into the world.  I wouldn't have it any other way. So I'm off to find a place for Ava to ride a horse and I guess we'll be baking this week too.  Don't worry. Mason gets his dreams too.  For now they mostly involve superheroes, or drawing sharks eating a variety of things.  But pretty soon he'll be making a list for us too.  So they are directing us on what they want in life.  It's our joy to provide it. Hopefully all of us never lose the wonder in a child's eyes when they get to experience something new.

Like I always say,  "don't forget to stop and look for ladybugs." It's things like ladybugs that kids notice all the time and we are blind to seeing anymore. Because we're always looking up, propelling forward in some crazy foot race, while kids are looking at the ground and happy with things that are free.

Hope all of you have a great week.

Jenny

Jenny - Dream #1 Realized and Setback!

I'm baaaack!!!! Sorry for the hiatus!  We were on a VACATION to sunny Clearwater, Florida!

So over the years I've had lots of time to think and dream of what I would do if given a healthy heart.  Last week we finally had the chance to cross our first dream off the list...Go on our first family vacation.  Mason got to go on his first airplane ride.  Ava hasn't been to Tampa in about 4 years and we were all thrilled to be there together for the first time. It was the culmination of a dream for me, to see our friends, expose our kids to life outside of Houston and hospitals, and act like a normal family.  I should apologize now to all the people on the plane that had to endure his antics!  Especially when he yelled for 15 minutes that he needed to poop.  It was kinda hilarious. But we arrived safely.  We met with our Matchmakers, Anne and Matt and their beautiful kids.  Had a fantastic week.  Full of lots of swimming and cooking (not at the same time.)

Suspicious of the sunroof in the rental car!

We got to see Winter, the dolphin from the movie Dolphin Tale!  It was incredible to see her swim without a tail. She was precocious too, trying to open a door to get into another tank to play.  No disability in Winter!! She was playing and swimming just like all the other dolphins.  I think she is a great example to kids with disabilities to not let anything stop you! Ava was really glad to see all the sights from the movie.  Mason was thrilled they had stringrays and a hammerhead shark display!  The kids got to hold her prosthetic tail!

Love Bridgette's face in this picture!

Jenny-Kale Yeah!

So the Katy adventure is continuing. I was grumpy about it the first week, resistant to change. I almost cried when I saw the closest gym because I hate it there.  It's hot, the machines are older, and I just wanted to complain.  I think the culmunation of a lot of changes all at once was just getting to me.  I always thought I was pretty good with change. But I'm realizing that's just not true! I'm stubborn as hell and I plan.  I should just accept these facts and work within them!  I'm over being grumpy now over the move.  But I don't like the "new kid" stares at the gym.  Why do people stare? I wish people would just talk and ask me questions. I can't focus on the negatives so I'm choosing to see the positive in our move. Like my gym has a juice bar! A juice bar!! I'm telling you people it's not that hard to make me happy! The whole foods is really close to where we live and I laughed my butt off seeing this last night...

Kale Yeah anyone???

Busy starting our 3rd week week here I'm excited at what this city has to offer. I'm learning my way around town and figuring out that this city is much more focused on health. I'm also trying to adjust to all the changes this new city forces me to make and old habits to break. It's very hard to move further away from my friends. I've always thought of myself as a person that handles change well.  But I don't. I'm a planner. I like to see my plans through until the end.  It's just something I need to accept about myself and use it to my advantage.  But I'm trying really hard to accept what this move is going to do for our family.  SO many positive changes for us! Being resilent is one of the most important things I can teach my children.  But I have to teach them by example.

I've spent a lot of time this year having surgery. It's time for me to rebuild my body and make myself the best me I can be.  I could list all the stuff I can't do with a pacemaker but what would be the use in that? I choose to focus on what I can do and working within those "limits" so I can stay healthy.  I run really slow.  But I'm freaking running. Something I haven't been able to do in a long time. I'm convincing a bunch of my friends to run too.  So we can all celebrate together. It's a good time in our lives and I want to be that role model for my children.  I want them to grow up knowing that working out, and eating right is a part of life. 

I've been focusing on eating extremely clean and I'm seeing fantastic results.  I read Kelsey Byers new book about Eating Clean called Eat Clean and Follow Your Dreams .  My overall review of the book is it's a quick read, and it's a great jumpstart for people who aren't familiar with eating this way. Experts say your results are 80% diet and 20% working out.  So I'm shifting the balance of things. I'm focusing on eating very good foods, focusing on putting certain nutrients in my body and detoxing from sugar.  I still eat one small piece of dark chocolate a day. But I'm not on a diet.  This is the way I need (and want) to eat the rest of my life. People write me all the time about how to start eating clean.  So if you are interested check out this book.  Incorporate some small changes at first then work your way up, or go cold turkey, whatever works best for you.  Work with your strengths to overcome your weaknesses.

I got mad this week seeing a so called "health expert" suggest that people should eat junk then just work out more.  That's such a load of crap. Of course I love good food, I'm from New Orleans! But do I think we should just cram our bodies full of junk? No! It's not just about weight, it's about feeding your body nutritious food to reduce inflammation and reduce plaque in your arteries. I improved my running time by 2 minutes in just a week because I was fueling my body correctly.

We all have to start somewhere.  So make the decision today that you are worth it, your family is worth it, eat to live.  I had to cut down on all our material possessions movings from a large house to an apartment. I thought I'd miss all "my stuff" but I don't, at all.  I'm realizing I didn't need all that stuff anyway. The same way I don't need junk food in my life. I don't need it in my home. Scale down your life and make things simple.  We're all too complicated these days.  So start small.  Focus on your health, your family, your emotional wellness, and being a joyful person.  With every negative find the positive. Fight to see the light at the end of tunnel. So Kale yeah, I'm on board. Are you?

Jenny

Monique, Etc

It's Wednesday afternoon, and Our Heroine is Proudly Watching her amazing Son train for swimming races. She has this week Conquered Setbacks, overcome Adversity, and has braved Many New Experiences. She has Relearned how to continue Forward and not be held back by the Chaotic nature of Life. She says, "Nolite Le Bastardes Carborundum!"

Jenny- New dreams...New Realities...

I'm at a place I could not have imagined a year ago.  A place where I can dream and bring those dreams to reality.  I have a working heart and we've struggled for so long it was hard to imagine THIS place.  I went to a work function with Jeremy this week and NO ONE cold tell under my pretty, lace cocktail dress I hid a secret.  A secret maze of scars and a robot heart.  I was so amazed and giggled at the thought I can blend in now.  I'm so grateful to finally be here.  We just moved and I packed all the boxes. I moved boxes. I helped unload and I unpacked everything myself.  Being self sufficient isn't something I take lightly.  I can make plans now to travel, plans to take the kids to events and introduce them to new things like horseback riding.

So my new dreams are starting.  I played golf with Jeremy this morning and conquered several flights of stairs to go to this awesome driving range called Top Golf.  Something I would not have been able to do just 3 months. Heck just 6 weeks ago...I found an amazing gym yesterday and I ran 5 whole minutes.  Sure, that doesn't seem like much but to me it was amazing.  I was born with a heart I couldn't use and Dr. Mehdi Razavi built me a new heart.  He gave me one I can LIVE with.

This feeling of guilt is something heart patients struggle with and I am no different.  You meet people in the hospital and you know which ones aren't going to come home.  You vow to never forget them so you always remember to do what you need to do to stay alive.  But they haunt you.  Wondering about them, wishing you exchanged numbers.  I have to tell you about an experience I had a few weeks ago.

I was attending the Woman Heart Houston meeting where me and an AMAZING, FANTASTIC, group of CANTANKEROUS heart patients get together each month. No, it's not the somber, boring meeting you might think. This is a place where we CELEBRATE each other.  We SUPPORT each other, and we understand how the other one feels.  I joked with the table when the waiters walked up and told them we wanted as much fried stuff as they could bring to the table.  We all chuckled.  Then proceeded to order wonderful kale and beet salads and rave about them.

We don't look back at what we can't do anymore, we talk about all the things we want to do in the future.  I met two heart transplant recipients, which was an honor.  What a gift to be in the presence of such brave women.  We talk about how hard it is to trust that these surgeries will "hold" and we are allowed a brief respite to feel safe.  Several of the people there were perfectly fine, then had their aorta tear and they woke up on ventilators with their chests cracked open.  I had several rough times but I always knew when I was having surgery.  Can you imagine how panicked you would be waking up after emergency open heart or bypass surgery? So today, wherever you are in your life, whatever challenges you face, remember to thank GOD that you are here, alive, and breathing.

I looked across the table and the lady looked familiar but I couldn't place where I had met her.
She grabbed my hands after the meeting. She look deep into my eyes and said, "I was so worried about you. Did you get your babies back? How are they?" Then it hit me.  I choked up and I remember where I had met her.  I was in radiology talking to her about my friend's bakery, The Peacebaker, because she makes things heart patients can eat! This was the lady I have often wondered about.  She sat in radiology with me wearing oxygen.  She was surprised to see someone my age with a bad heart and I explained that I too had been on oxygen for months.  I named my oxygen machine "Big Bertha" and refused to address it by any other name. I was there in February getting evaluated for a pacemaker.  We laughed as we waited for our echocardiograms.  We talked about New Orleans, and food, all the things we can't eat anymore but love.  She was a foodie and she was a lovely person.  I'm so happy I was able to find her again.  I can cross her off my list of people to worry about. Because she's back with me where I can support her in her heart fight.

So many things came full circle in that meeting.  Just feeling loved and supported by this group is amazing.  I am so lucky to be alive and able to move now.  We're planning a family vacation, something we have NEVER done. We're making plans for summer fun activities and I'm able to celebrate this summer with the man I love and have been married to for 10 years.  We've lived more in those 10 years then some people do in a lifetime.  I'm so grateful for what we learned about each other in those 10 years, for what I learned about myself.  Lessons maybe we would not have learned without my heart being "special."

So I'm not going to look back with sadness at the athlete I used to be. I'm going to redefine my definitions of things.  I'm going to continue to be grateful for my life, for my family, and for my marriage.  I'm completely unable to even express how grateful I am to have found a doctor who didn't give up on me.  To have friends that rallied around my whole family.  To have parents and in-laws that took my children for months at a time. My doctor told other doctors working with him that I would get through the surgeries, that I was tough enough to handle it.  He was right.  Feeling so blessed.  On to our new adventures....

Jenny