Wednesday, October 30, 2013

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. :)

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.


Monday, October 7, 2013

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!!!