Three Years Post Cardiac Catheterization

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.

May112019

Things I’ve learned about Motherhood.

I love being a mama. I always dreamed of motherhood. I never imagined the choices I would have to make in order to carry a child. I never knew how hard just daily life would be keeping up with an [almost] toddler, and my heart. Although motherhood isn’t easy all the time, it’s been an amazing journey, and I’m so THANKFUL to have the opportunity to celebrate my first Mother’s Day on Sunday. I’m new to the motherhood tribe, but I’ve learned a few things.

You are meant to be their mom. No matter how many times you ‘think’ you failed them- you didn’t.

God placed you as their mama for a reason. You are strong enough. If you are a part of the chronic illness world, you may think you are not strong enough for this motherhood world too- but you are.

You are strong and you are a fighter, and you can be an amazing mom to your little one. It might look a little different than another mom’s journey, but you can rock motherhood too.

You are capable. They need love. On the days where you feel overwhelmed by life, or by a physical/mental illness, just love them. And they’ll show you in their own way how much you are capable of being enough for them. You are an awesome mom. They love you for being you.

Cherish their smiles and enjoy the moments, even if you think they aren’t perfect. Your child adores you, and seeing them smile will remind you of just that.

You are a superhero. You are their superhero.

Mar192019

Will my story include healing?

You hear it a lot, “pray and it’ll be answered”,

-but what if it isn’t?

I believe in the power of prayer. There’s no doubt in my mind prayer works. An answered prayer is a true miracle.

But, do I believe every single prayer is answered? Yes, and no. I do not believe He always answers our prayers with the outcome we pray for.

God hears every single prayer, but I believe that God sometime’s says, not yet, and sometimes even no.

I recently read the story of the two blind men in the Bible.

Matthew 9:27-31

²⁷As Jesus went on from there, two blind men followed him, shouting, “Have mercy on us, Son of David!” ²⁸When he went into the house, the blind men came to him. Jesus said to them, “Do you believe that I am able to do this?” They said to him, “Yes, Lord.” ²⁹Then he touched their eyes saying, “Let it be done for you according to your faith.” ³⁰And their eyes were opened.

A few years back I had someone tell me that my heart wasn’t being healed because I didn’t believe God would heal it. I told her I believe He can heal me, but I don’t believe He will heal it just because I pray for it to be, unless it’s a part of His plan.

That doesn’t stop me from praying for healing, but it stops me from being so angry at God when healing doesn’t happen. I used to be so bitter towards God because I’d pray for the pain to stop, and my prayers were never answered. My relationship with Christ was slowly becoming non-existent, all because I had this notion in my head that God would heal me if I asked. I would question everything- maybe I wasn’t a good enough Christian, was I was praying wrong, and was God even real.

I sometimes wonder if God has a different story for my healing. Maybe earthly healing is not a part of His plan.

I still pray, and I still hope one day God heals my heart. Either way, I have faith that He has a plan, and He will answer each prayer according to His will.

God healed the blind men in the story. God asked if they believed He could do it, and they said yes, and they were healed.

It’s a miracle story, but sometimes our miracles become evident in a different way.

Just because you aren’t healed, doesn’t mean God isn’t listening to every prayer, and seeing every tear that falls from your eyes- He does.

He is right beside you, holding you close.

I truly believe that God answers every prayer, but sometimes the answers aren’t what we want, and I am learning to be okay with that.

Maybe healing isn’t a part of my story here on Earth, but I will continue to use my pain to tell others about this journey God has placed me on. It might not have been the path I prayed for, but it’s the path God has me on until He answers my prayers in a different way.

Mar52019

You are enough for motherhood.

I used to dream of being a mom. I could not wait to embark on that journey. But then my journey with a chronic illness began. I was 18, in college, and single, so I never thought much of my future as a mom.

I then started dating, and the thought of being a mom would come and go from my mind. I’d ask myself if I even thought it would be possible. I considered all my options- adoption, surrogacy, and pregnancy. I knew ultimately I wanted to be a mom no matter how that came about, but I really desired to carry my own child.

A few years into my journey with my heart, I met my husband. I was terrified to even mention children. Normally this would come about later on in the relationship, but with there being a possibility that I could not carry a pregnancy I knew it needed to be an early discussion since this would not only be my life, but his as well. I started to resent my heart (and honestly God too). I didn’t think it was fair that I would never be able to have a normal pregnancy. I would never be able to just get pregnant when it happened or when I desired. I’d have to stop medications, and plan it out carefully in accordance with my health. A part of me wanted to simply give up my dream and desire to be a mom because I did not want to have to plan my life around my illness, and in my mind if I chose not to have children, then I’d be making the decision for myself, and not allowing my heart to do the deciding for me.

But the desire to be a mom never went away. It was strong.

I never truly worried much about my health, in regards to how difficult it would be on my body. My focus was always on the child. I wanted them to be okay. I worried would I be enough for my child? Will I be able to care for him or her like they deserve? Will I be able to adequately play with them without blacking out, and carry them in my arms safely from point A to point B? My biggest concern was the nine months I had to share my body with another human. The medication that was keeping my heart regulated could potentially be harmful for the child that was growing inside of me. I worried would I be enough to provide a safe place for them to grow…. When I tell you it was a struggle, I don’t mean that lightly. It was the hardest nine months of my life. Physically, but also emotionally and mentally. I had about fifteen hospital visits, and one 2 day stay (not including the actual birth).

I wanted to be enough for them. I tried so hard to be enough, and I hadn’t even met him yet. I saw his face on each ultrasound and was so in love with this sweet baby, and I wanted to simply be enough. I spent many nights crying, worried I wouldn’t be the mom he deserved.

My son is now almost 9 months old. He’s been on this earth the same amount of time he was in the womb.

Here’s what I’ve learned during my time as a mom.

♥︎ you will adapt to your circumstances.

♥︎ motherhood is not a one-way or no-way path. It can be different for every single one of us.

♥︎ your child will love you no matter the struggles you face (and most of the time they won’t even notice your struggles).

♥︎ God gave them YOU for a reason.

♥︎ you will always be enough for your child. You are a superhero in their eyes.

♥︎ you are their mom, and no one can replace you.

♥︎ you got this!

Motherhood is not easy. The path to motherhood is different for everyone and does not come simple to most. We each have our own journey, and we are simply doing the best we can. Don’t be so hard on yourself. You are enough for your precious baby.

Feb202019

A little honesty.

Being a mom has been amazing, and I am so blessed to have my son in my life. The love I have for him is indescribable.

A few years ago I wasn’t sure if I’d ever be able to carry a baby, or have the energy to be a mom. I was at a very low time in my life emotionally, and physically. My body felt like it was failing me.

Doctor appointments, medications, and the right treatment got me to a good place where I felt like I could make my dream to be a mom a reality.

We planned our precious baby.

The first month was easy. The second got harder. Each month was harder and harder. The pregnancy was definitely taking a toll on my body, and my heart.

Lately I’ve been thinking about what the future holds regarding expanding our little family in the next few years- and it terrifies me.

I want to give my son a sibling, but I also have a huge fear of going through it again. I care about him so much that I am afraid to risk not being able to take care of him to my fullest ability for nine months.

Chronic illness has been very hard on my life- but not just physically. It takes an emotional toll on your life. At 24, I shouldn’t have to think about whether I can handle another pregnancy. It’s tough, thinking about the future. Thinking about if it’s fair to my child to have another child. To risk not giving him the mom he deserves for nine months.

I never realized how hard it would be. The amount of anxiety it gives me thinking about it. Thinking about what the right decision is.

But although it’s a decision that terrifies me, I know it’ll be a decision that’ll we’ll come to in the next few years that will be the right fit for us.

The last six years dealing with my heart has been difficult to say the least, but it’s definitely taught me so much.

It’s taught me to trust God with the unknown. To trust him even when I am scared. My personality is the type to want to have a plan, and a definite outcome, and that is not something a heart condition provides.

But although I am scared and worried of the future, I know that God has it all planned out. The good, the bad, and everything in between.

Feb82019Feb 18 2019

Our story choosing life.

October 3, I saw two pink lines.

I was excited, and scared. Scared because I knew the risks that would come.

My baby was no surprise, yet he was planned- by us, and by God.

I knew the hardship that I would go through.

I had a hard time finding an OB that would accept me.

Even after finding an OB that would accept me, they didn’t want to accept my baby’s life with the same value as my own.

To me, my child was not a clump of cells, but he was a human- my precious baby.

It was the hardest nine months of my life. I tried to not show it much. I cried majority of the days, and not from hormones, but from pain and fear.

Pain from the stress of a pregnancy on my body, and fear that my child would not survive.

I will not forget the moment they told us that my son had cysts on his brain. I was 19 weeks. I did not know how to process my feelings. That’s the same week that I started to feel him kick. And kick hard. He wanted me to know he was there, and he was real.

Instead of joy, I was feeling heartbreak. I will admit, I did not want to feel his kicks because I did not want to become even more attached to a child that might not survive.

I felt guilty, and ashamed. Ashamed that I was wanting to disconnect from my son.

After a few days of grieving what might be, I realized that this was my baby, no matter the outcome. I was his mom. I had to protect his life. His rights to have a chance.

The next four weeks were hard. I was hospitalized for two days due to a really bad episode I had with my heart. All I wanted was for my baby to be okay.

We found out at 23 weeks that his cysts were gone, and he was perfectly healthy.

As the pregnancy continued, so did my episodes. They would consist of my hearing and vision going out, I couldn’t talk or move. I was consciously there, but it was like I had no control over my body. It was the scariest time of my life.

We continued on.

We planned his nursery. We bought his tiny clothes.

I was so worried about something going wrong so when my family threw a baby shower, I wanted to be happy, but I just knew people would ask me about how things were going and I didn’t want to admit- not well.

At around 32 weeks I was having an increased amount of episodes and so my cardiologist increased my medication.

At 35 weeks there was signs that it was slowing my son’s growth down. We didn’t think too much of it.

At 37 weeks I experienced the most terrifying moment of my life- even more than when we found out he had cysts. He failed a biophysical profile test (BPP) which is a test that uses a non-stress test with an ultrasound to check the health of the baby. We spent an hour doing an ultrasound. That hour was quiet. He had a heart beat, but no movement. I knew something was wrong when the ultrasound tech had me flip to different sides, and was pushing hard on my stomach while she looked at the screen.

I prayed, like I never have before. I did not want to lose my son.

I was sent to the hospital, where they did further testing.

He started to move some, and he was okay.

At 39 weeks, his growth dropped tremendously. We decided the best thing would be to induce.

36 hours of labor, and my son was born, healthy.

The staff that told me to consider an abortion at 5 weeks to make my life easier did not understand that the pain my body would go through for 9 months was nothing compared to the moment I got to hold my son for the first time. The doctors that told me I’d lose my son to a miscarriage multiple times between 6-10 weeks were wrong. The fear I felt when I was told my son’s cysts could mean he would be incompatible with life outside the womb was no match against our God.

I will admit that I did not have a strong faith my entire pregnancy, but I knew one thing: I’d fight for my son till the very end, even if my life was compromised. He was my baby.

I held my 6 lb 13 oz son, and knew in that moment that we don’t know the struggles we will go through in life, but at the very end of those struggles is a beautiful moment that God created.

I know some stories do not end like mine, but that doesn’t change the fact that God planned this, as scary as it might be. He hand-picked you for this, no matter how the story ends.