Tomorrow marks three years since I had my first heart surgery. I actually had two that day.
I went in for a heart catheterization, and a hopeful ablation. I left with a heart catheterization, and then a second procedure to implant a loop recorder.
Tomorrow marks three years since I found out firsthand that doctors can’t fix everything, no matter how many medical advancements there are. That a 99.9% success rate means nothing when you’re that .1%.
I learned how it would feel to wake up from a surgery, so hopeful, and then to have your dreams crushed by a nurse that tells you it did not work but that there is no reason to cry because it’s not the end of the world.
That was when I realized no one truly understands. Until you have your heart working against you, you’ll never understand how it feels to wake up during a surgery to see a screen of the inside of your body with a catheter next to your heart, ready to burn the bad section. And then to go back to sleep, and wake up being told it was all for nothing.
You’ll never understand what it feels like to black out when you’re standing, sitting, walking, anything.
You’ll never understand how looking at a flight of stares makes you want to cry because you know when you walk up them, you won’t be able to breathe or see.
You’ll never understand how it feels to have your heart beating over 200 bpm.
You’ll never understand how taking pills every night to slow down your heart can make you feel out of control. The one organ that is suppose to keep you alive is failing you.
But honestly, I am glad you do not understand- because that means you have never had to experience this type of pain.
Three years ago tonight, I honestly thought there was no way I wouldn’t leave that hospital cured the next day. Although I wasn’t cured, it did lead to my long-awaited diagnosis. A piece of my heart did not form correctly, and it never would have been seen without the catheterization.
That surgery changed a lot. It changed my faith in the medical community, and in God. I learned the hard way that just because they have a medical degree does not mean they can work miracles all on their own, and just because we pray, doesn’t mean God answers them.
But I am still searching. Searching for the reason God is making this a part of my story. The reason he is allowing me to be the .1%.
Although that day did not end like I had hoped (and I’ve had two surgeries so far, that both ended the same way, with no cure as an outcome), I have had some positive things through this journey.
I have an amazing supportive doctor that hasn’t given up, even if that just means finding a medication (and switching a million times) until we find one that manages symptoms the best for the next few months.
I had a successful pregnancy and birth, despite my heart working against us.
I’ve learned that life is full of so many ups and downs, and that we can’t predict the future, or change God’s plan.
That doctors don’t know everything, and that is okay, even though it can be very frustrating.
I’ve learned that sometimes you have to accept that you might never be healed. That your life might always consist of cardiologist appointments, medication changes, surgeries, black-outs, high heart rates, dizziness, nausea, and people who will never understand.
Below are some pieces I took out of my blog posts I had written right after my surgery.
People with chronic/invisible illnesses deal with a lot. It’s not easy, but we put on a smile. We have to. We have to keep going because life doesn’t revolve around us, and it doesn’t stop just because we’re having a bad day. So we put on a smile, and we continue living.
I don’t know when and if this will ever get better. I am to the point now where I do pray I get healed, but right now I am taking it one day at a time, and just praying for one day.
One day of no episodes. One day where I can forget about it all, and go to bed that night saying, “wow, this is what it used to feel like. This is what normal is.”
And whether or not I have that day here on earth, I do have hope knowing that in the presence of Jesus, when I make it to my eternal home, I will have an eternity of these one days. And knowing that makes all these other days a little easier.
These long words have changed my life forever- Inappropriate Sinus Tachycardia, Supraventricular Tachycardia and Posteral Orthostatic Tachycardia Syndrome. When one isn’t fighting against me, another one is. One has a cure that has not worked for me yet, and the other two have no cure at all. And I’ve accepted it. I’ve accepted that my life will have a lot of downs, but I’m very thankful for all the ups I am able to have as well.
I am still very hopeful for my one day although I know that one day might not happen until I am face to face with Jesus.
If June 2, 2016 taught me anything, it’s that I am no longer in control, but that there is a reason for my story, even if I never know that reason. My heart is my heart, and it’s what God gave me.
Herald is my story. I wouldn’t be who I am without my misbehaving heart.