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Friday, November 13, 2015

Fixing Kyle's Heart

Oh, how life can change in the blink of an eye.
One day you're having a weekend getaway with your husband to South Carolina, and the next you find out your husband has to undergo heart surgery.
At the age of 29, I never thought I would feel the pain and panic of what life would be like without Kyle.
I'm young, and naive, and think that Kyle and I will live forever...and watch our babies grow up, while sitting on a back porch overlooking a lake, and have the air filled with our girls laughter.
I never thought my husband would come home one day from a routine office visit and tell me he had to have heart surgery.

In college, Kyle found out he had a mitral valve prolapse and a heart murmur. 
It's nothing too serious, and is fairly common.
The last time he had his heart checked out was right before we got married in 2011. 
At that time his mitral valve prolapse was considered "minor", and with routine check-ups he would be fine.
We moved, had two kids, and Kyle never had any issues with his heart and just kept putting off a heart check-up.
A few weeks ago he went to his primary care physician for something unrelated to his heart, but his doctor asked if he had had it checked out in awhile and recommended he get testing done to make sure it was all ok.
So he scheduled his appointment to get an echocardiogram done, got it done and awaited the results.
He got a phone call that they wanted to see him ASAP to go over the results.
He thought they were just going to tell him he had a MVP and a heart murmur, and wasn't too worried about it.
So I wasn't too worried about it.
About an hour into his appointment and I hadn't heard anything from him, and I started to worry.
I sent him a text asking if he was ok and he said "no".
I thought he was joking, but the longer it was until he got home the more I knew something wasn't right.
Once he was home, I took one look at him and realized his "no" reply, was true.
All he said was:
I have to have heart surgery.

I froze.
Like, my mouth fell to the floor and I didn't know what to do.
He went on to explain how his condition went from "minor" to "severe" and he would need to have heart surgery.
And because of the severity of it, it has started to enlarge his heart from working double time to keep up with the amount of blood being pumped.
And for the next 24 hours I was just in total shock.
What does this all mean?
What kind of surgery?
Are you going to live?
So, so many questions flooded my mind.
And I was terrified.
And I felt terrible for Kyle.
And I just kept waiting for him to blurt out a "just kidding", to end this nightmare.
But he never did, and phone call after phone call to set up the next step in this journey solidified that this was our new reality.
My 32 year old husband was going to have heart surgery.

The next step was to have a TEE and 3D Echocardiogram done.
This was to determine the shape his MV was in, and whether he would need a mitral valve repair, or a mitral valve replacement.
After being at the hospital for 7+ hours for a 20 minute procedure, we were told the doctors were hopeful it could be a repair, but we needed to see the surgeon to get the final say.

So next step...go see the surgeon.
They squeezed Kyle in two days later to meet with the thoracic surgeon, which is kind of unheard of.
But due to his age, and the severity of his valve, they made a lot of exceptions for him.
The surgeon explained to us what all was going on, what it all meant, and what was going to be needed for Kyle.
He was diagnosed with Severe Mitral Valve Regurgitation and a flailing leaflet.
What that means is the leaflet that opens and closes in his mitral valve to let blood flow from the heart into the body isn't working properly, and it is causing a severe leakage of blood back into the heart chamber, and into his lungs.
Without treatment, this would kill him in 8-10 years.
And the longer you wait, the more damage it will have on his heart, and it will cause it to enlarge even more.
So now that we know what is wrong, how do we fix it?
The surgeon was confident that Kyle's valve could be repaired, rather than having a complete valve replacement (which is more complicated and requires blood thinners for the rest of his life).
Kyle will undergo a 1-2 hour surgery, where they will stop his heart and put it on a bypass machine to do the surgery.
They will make an incision on his right side, go through the chest muscle with a probe, to his heart to repair the valve.
They will test out the valve 2 times to make sure it is working and his heart is able to handle it, before the surgery is over.
If for some reason there are any complications during the surgery with the repair, they will immediately replace the valve.
Once surgery is over, he will spend a day in ICU, and then 5-7 days in the hospital recovering.
After he gets discharged, he will then spend 2-3 weeks at home recovering until he is 100%.

Although after meeting with the surgeon, I feel more knowledge and able to answer questions for other people, I am just as terrified about it, as is Kyle.
You look at it like yes, this is going to save your life, but it's just a hard pill to swallow.
And while this repair will fix his heart for now, it doesn't last a lifetime.
He will need to have another surgery again in 10+ years again, and maybe 10+ years after that...who knows.
So while this will fix him for now, it's not a permanent solution and we'll have to cross this bridge again.

I just look at Kyle now and think, wow....we are going to save your life.
I'm 29 years old, and I'm worrying about keeping my husband alive.
Making sure he lives to see his girls, to watch them grow up, to walk them down the aisle, to see them have babies of their own.
Explaining to our 3 year old why daddy goes to the doctor so much now, and trying not to absolutely lose it is tough.
"Daddy's got a broken heart and we're trying to fix him".
She always thinks he's going to see Doc McStuffins, and asks if he's gotta get a shot.
"Daddy go see Doc MmmStuf-ins?"
"Daddy get shot?"
"Aww...poor daddy"
"Poor daddy heart"
And while it makes me smile to think of a 3 year olds perspective of it all, I want to just cry.
And I hug my babies extra tight these days.

It's absolutely terrifying, and my heart just breaks for him.
It's not fair.
And I go through emotions of being so grateful to God for leading him to the doctor, but then I'm so angry at him for doing this to him.
Why?
Why him?
Why now?
He's so young, and has so much left to do with his life.
So many places to see, so many opportunities to take, so many journeys of life left to experience.
Why worry him for the rest of his life with this?
It's sad, and scary, and emotional, and as much as I hate it...I can't even imagine how he's feeling.
So many what if's.
So many outcomes to think of.
But in the end...this will save him and his heart.
And really, that's all that matters.

So in the next few weeks, Kyle needs to have a heart catheterization done, and a CAT scan.
As well as pre-op testing (blood work, EKG, etc.).
And then of course...the surgery itself.
Please pray for him, send positive thoughts/vibes, whatever you do.
We all certainly need them, especially that handsome man of mine :)
I'll try and keep updates coming from time to time, as I know a lot of family and friends are interested in following along.
And thank you, thank you, for everyone who has prayed for him and kept him in your thoughts, who have called, texted, messaged us...it means everything.







8 comments:

  1. What a blessing in disguise that GP visit was, my Nana had MVP and complications late in her life from it. It runs in the family, along with murmurs. Modern medicine is amazing and so wonderful that this didn't go undetected. Lots of prayers that everything goes smoothly.

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  2. Praying for you and your family! I used to be an echo tech and all this sounds so familiar. Trust in God! hugs!!

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  3. We are thinking of you and pray for you.

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  4. Sending lots and lots of love, prayers, positive thoughts and HUGS your way! ❤️❤️❤️

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  5. I was wondering where you've been. Kyle and your family are in my prayers! Lots of positive thoughts coming your way. <3

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  6. My husband had a heart attack at 35, and I understand your feeling of fear. Like it's a ticking time bomb you have to worry about for the rest of your life. But it does get better, I know our situations are much different, but emotions the same. Brian had a hard time dealing with it in the beginning and it had him down. He had immediate heart surgery following his heart attack. What helped him most was reading positive and motivating books. I will ask him if he has any book reccomendations, for Kyle. I will pray for him & your family. I know the morale and condition of daddy severely effects the whole family. I had some rough bouts of sadness and anxiety dealing with it too. Trust me I know where your head can go, thoughts of having to support your kids alone one day. What is his longevity of life compared to mine? Will I be alone one day? But honestly, anything could happen you know? So you just have to keep the faith and we are firm believers in what you put out into the world you get back. We say positive affirmations each night together as a family & Brian has some that he says himself. We firmly believe our quality and longevity of life won't be effected. We have a strong faith because we have to. So give yourself time. Know that you both won't feel this way forever, you will feel safe and confident again. I promise. michaelacour@gmail.com is my email if you ever need to talk. And I'll DM you some good books from my husband's list after I ask him tomorrow.

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  7. so sorry to hear about this. keeping you and your family in our thoughts.

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  8. Jenna,
    This is my first time commenting on your blog but I read your story and just had to share my experience! Eight years ago, my mom had almost the exact same experience. She was born with heart issues (the same as Kyle if my memory serves me right) and about 9 years ago my mom went in for a checkup. Turns out she needed a mitral valve repair or replacement as she also had mitral valve regurgitation and her valve was weak and not properly letting blood go in and out. She had robotic heart surgery and the doctors were able to repair her valve. She even left the hospital after 3 days! She had a great (and surprisingly speedy) recovery and now eight years later she is still going strong with no issues. However, in my mom's case she will not need additional repairs (unless something should come up unforeseen). I just wanted to share my story in efforts to ease your mind. Their stories had so many similarities, I just had to post. I'll be praying for you all over these next few weeks! :)

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