{matters of the heart} the fight continues

It's been awhile since I've written. As my heart problems continue, I've been emotional, and my blog has always been a form of therapy for me, so I decided to journal my feelings again. This is probably a little scattered. 

Where do I start? It's been awhile. I was doing pretty well until this past March when one morning my defibrillator shocked me when I was getting ready for work. Because that was the first time it had happened, I panicked. I was pretty hysterical because it was scary. We went to the emergency room, and they said I was having atrial flutters. A few days later, it happened again. My doctor did an ablation procedure. After the ablation, everything was fine for a few months. I felt really well. 

However, things started to change within the last few weeks. Two weeks ago, my defibrillator shocked me again. I found out today that my heart rate was 250 that day. I met with my doctor today, and he said I'm not having atrial flutters anymore, but now I'm having atrial fibrillation, and my heart's been in it for the last few days. I was shocked. I had to ask him to repeat himself to make sure I heard him right. His plan is to start me on a medication that requires me to go into the hospital for him to monitor me for a few days. Later on, he'll need to do another ablation that will hopefully stop the irregular rhthyms of the atrial fibrillation. 

After having been shocked three times now, I walk around in this constant fear that it's going to happen again. I don't know if any of you have ever felt that before, but it certainly doesn't feel good. Because of this fear, I have a hard time relaxing. I'm jumpy and nervous. Noises startle me. I have a hard time going to sleep because I get afraid I'll get shocked in my sleep. I explained all of this to my doctor today, and he said I'm dealing with a form of PTSD, and that it's very common for his patients with defibrillators to have that. I got to thinking, "I can't have this...that's what people get when they go to war." And then I looked it up and found a medical journal article about it, and apparently it's a very real and common thing...

    "Many ICD patients cope relatively well with shock and are able to adjust and return to living life     without marked injury to their psychological well-being or quality of life. However, some ICD             patients, especially those who have received multiple shocks may consider the event traumatic and believe that their life was in danger and emerge with PTSD symptoms...An  ICD patient is         continually exposed to the threat of future defibrillation and must live with  a visible and tactile         reminder of this threat (eg, ICD pocket and scar)."

The article went on to talk about how patients experience "phantom shocks," where they reexperience it over and over, and I realized that this happens to me. It's almost like it's real sometimes, where you almost "feel" like you got shocked because you're so scared that you will and your mind is so consumed with that, and you imagine it. I know it sounds crazy, but that's exactly what's been happening to me. I realized that the emotional side of all of this is very real, and that I'm dealing with so much anxiety and constant worry about my ICD now. I have always been very open and honest about my entire journey, and I'm going to continue with my honesty about this part of it. I have struggled emotionally...more than I have before through my whole heart journey, but I have been vocal about it with my doctor and am working on it.

At first, I was so afraid to go back to work because of COVID and the risk of working in a school during a pandemic with heart failure. But now, it's honestly the best place for me. Working gives me something to focus on other than this crazy, broken heart of mine. My health is beyond my control, but things in my classroom are. So everytime I felt upset or discouraged, I went to my classroom and unpacked boxes (I moved classroooms this year). The more I was at school, the more at ease I felt. My co-workers have always felt more like family than co-workers, and they prove that to me over and over again. So many of them have reached out to me and offered love and support and even offered to help in my classroom. Their love knows no end. Today, I went in to work to tell my admin team about my latest issues and ended up ugly-crying in front of all of them and embarrassing myself, but no one judged me. You see, no one at work ever sees that side of me. They see Tough Candace. Strong Candace. They don't see the Candace that cries when she's alone or on her mama or daddy's shoulder. But today they saw the ugly, and all they said was, "We're here to support you, and we love you." 

My boss talked to me today about how I can't live in fear and I have to take each day as a gift, and he's so right. I needed that talk. Sometimes I lay in bed at night and cry because I worry I won't even live long enough to raise my own child. When you're 34 with a weak and messed-up heart, you think about stuff like that. The good news is, my doctor has assured me that these arrythmias aren't life-threatening, and while that defibrillator may scare me, and it hurts, the truth is that it WORKS, and I'm thankful for that. One of my concerns was that the shocks may be damaging my heart, and he also assured me that they're not. That made me feel better and eased my peace of mind a bit. 

So what now? For now, I'm back on a blood thinner due to the blood clot risk associated with a-fib. I'll go in the hospital soon for the new medication, and the ablation will be later on. In the meantime, I keep my faith just like I always have. I keep fighting. I stay strong. I'll keep telling my story. It's human nature to question why things happen to us, but I decided a long time ago that everything that happens to me was meant to strengthen my faith, to draw me closer to God, to quit trying to solve my problems myself and to lean on Him. I also believe that part of my journey is meant to encourage others, so I will tell every bit of my story, even the not-so-pretty parts about how discouraged I sometimes get and the emotions I've been struggling with because if I can encourage even ONE person with my story, then it was worth it for me to share my experiences. 

I'm grateful for your prayers always. 

the heart of a mama who had to say goodbye

This is a post I've been trying to write for two years. It's one I thought I would carry forever because I never could find the words to say what was on my heart. It's also one I neglected writing out of fear...fear of being judged and condemned for a decision I made. I finally have the courage to tell my story.

A little over two years ago, I was expecting our second child. I was excited, as most mothers are, to welcome a new child into our world. Our family was a place where another child would have been deeply loved. Unfortunately, we didn't get that opportunity.

Not long after finding out I was expecting, I was at a check-up with my pulmonologist for asthma. She told me that she suspected I had a heart condition, and that if diagnosed, it would be fatal to both me and the baby. I was crushed but hopeful for goood results. We made the appointment with the cardiologist, and he did an echocardiogram. As I was leaving the exam room, he stopped me, took me aside, and told me that the tests confirmed my worst fear. The tears came right away as I asked, "How bad is it?" He said it was very severe. I knew what was coming. No one had to tell me. My worst fear had just gotten confirmed. We went back to his office later, and as this precious doctor fought back his own tears, he told me that he would recommend terminating my pregnancy. My heart wasn't strong enough to withstand a pregnancy, and the baby and I would both die. He said that he'd never told anyone that before. I could tell it was hard for him, but the weight it put on me was unbearable.

People say they'll never do things. I've read so many things this week that said "I could never do that..." As a pro-life Christian, I never thought I'd find myself walking into an abortion clinic in New Orleans, but with a sickening feeling in my stomach, that's exactly what I did. My obstetrician had made me an appointment there, and my aunt drove me and my mom. It was late December...a few days before New Year's Eve. As I walked towards the building, I just kept thinking one silent but strong prayer, "God, please make a different way." Most of you reading this have never been in an abortion clinic, but I have, and the memory lives with me. I didn't really know what to expect, but I remember walking into the building was like walking into a nightmare. It was in an old house with bars on the doors and a security guard outside. Women were everywhere. There must have been 100 of them; there were multiple waiting rooms. In the back, they took my blood and did an ultrasound. The doctor explained the procedure to me. I asked her how long I would need to recover, and then I asked her the only thing I really wanted to know..."Is there any other way? My baby doesn't deserve to die this way." I just kept looking for hope, but she said no. We had to make an appointment to come back later in the week for the procedure.

The next day, I was feeling very short of breath and ended up in the emergency room in Slidell. They admitted me to the Intensive Care Unit and transferred me the next day to the Cardiac Intensive Care Unit at Ochsner Main Campus in New Orleans. There they brought in a team of doctors including cardiologists and high-risk obstetricians. I remember telling the OB, "Please don't make me go back to that place," and she said that someone in my condition should not be there without proper medical care. If I wasn't in a hospital bed, I would have hugged her. After many tests and monitoring, that team of doctors decided that they agreed with my original cardiologist's recommendation. My doctor told me that it was the hardest thing he'd ever had to tell a patient, but that if I was his daughter, he'd recommend the same thing.

The next morning, they started me on medication which basically caused my body to begin the labor process. They were going to do the procedure the following day. I was heartbroken and in pain. Even more than that, I knew what was coming, and I was scared. That evening my sweet daddy was playing music on his phone, and I asked him to find and play "I Know Who Holds Tomorrow." Those words had never meant more to me than they did on that night.

Many things about tomorrow

I don't seem to understand

But I know who holds tomorrow

and I know who holds my hand

About an hour later at 9:00 that night, my baby left my body - perfectly whole - with arms and hands, legs and feet. He was around 13-14 weeks gestation. Some people say that a baby isn't whole at that point, but my mama and I witnessed it ourselves. Sure, his organs weren't developed, and he couldn't survive, but his body was already formed at that early stage in my pregnancy. Doctors from every department came running, and several stayed with me until the OB could get there. I will never forget sitting in the bathroom, shaking and scared to death, with my supportive mama on one side, and a precious nurse from pediatrics on the other side, each holding my hand. When the OB arrived, they immediately took me to the operating room to do a D&C. A cardiologist was in the OR to monitor me. The very next day, I was able to be started on medication that would help my heart, and I'm still being treated for my heart conditions today.

Some people could argue and tell me that God would never have wanted me to end my baby's life, but I believe that God heard and answered my prayer. He sent me to a hospital with compassionate people who treated me with kindness and sympathy. He provided me the best care possible in an incredibly hard and life-threatening situation. He gave me a family who stood by me while I made a decision that no mother should ever have to make. I believe God was with me in that abortion clinic, and He was with me in the hospital. I know that He's still with me today, and despite my choice, He understands and loves me still. I know that God can take all of my sadness and pain and use it for His glory.

I think a lot of people thought I just had a miscarriage, and I was okay with that because I was scared of what people would think about me. The reality is that I made a very personal decision to let my baby go in order to save my life. It takes a lot of strength and courage to make the difficult choice to say goodbye to your child and then face a world that condemns you for it. I have grieved and suffered without talking about it for fear of judgment from others. If love alone could have saved my baby, I'd have two little boys here today. People are lighting up buildings in celebration of abortion while my heart just aches over my own.

I loved him. My family would have loved him. He would have had an amazing big brother. I think all the time how different our lives would be if things had went my way, but there will come a day when I will meet him in Heaven. That's the hope I'm clinging to.

The song and lyrics below are by Shelly E. Johnson. She wrote this song after the loss of her own baby, and these words are beautiful.

I never got to see your face

or had a chance to choose your name

I never got to kiss your cheek

or watch what you'd grow up to be.

I never got to hear your cry

or soothe you with a lullaby

before I got to say hello

I had to let you go.

Hallelujah, to the one who gives

Hallelujah, to the one who takes away

Hallelujah! I am sure of this.

I'll hold you in Heaven someday.

Oh, what a sweet day that will be!

When I meet you on the golden streets

I'll run to you with open arms

and tell you just how loved you are

Then you will take me by the hand

and lead us through the Promised Land

and there we'll bow before the throne

and praise the God from whom all blessings flow.

{matters of the heart} release

While scrolling through Facebook this morning, I came across this beautiful post by my friend Colleen Gaddie (stirthesoul on IG). She's incredibly talented with her artistic Bible journaling, but it was her words this time that got to my heart. 

Colleen wrote - "Sometimes you are going through what you believe to be the hardest thing yet. Your heart is breaking. You dont understand. You dont know how the pieces will ever be put back together. Friends might tell you they have been there. They might share a similar story... but they dont get you. Not completely. They dont really know everything you've thought or processed through this. They dont understand how broken you are. But God does. He knows the things you wont dare whisper. The things that keep you awake at night. The sadness, disappointment, the anger. All of it. He knows your pain. Every bit of it. Turn to Him. Fall apart in His hands. Find strength and comfort in him." - written by Colleen Gaddie and shared on Facebook

Oh, I needed that message. I needed it more than I'm willing to admit. Broken. That's exactly how I feel. My heart is broken - both in the physical and emotional sense, and I'm tired of it. 

On Memorial Day, I was implanted with a pacemaker. This was my fourth procedure in the cath lab in the past year. At that time, they discovered that one of the leads from my previous optimizer device had become dislodged from my heart. That means I have to go in for another surgery to repair it as soon as I heal from this one. The lead that was dislodged is still sending the electrical pulses (just not in the right place), so I feel it all day long. It shakes my whole chest, and it's pretty frustrating. I am getting it turned off tomorrow though until it can be repaired.

Everyone always says that I'm strong...that I'm brave. I don't really think I am. I think I just am really good at faking it and acting like it's not bothering me, when in reality, my heart is filled with the words that Colleen said - sadness, disappointment, and yes, even anger sometimes. 

Last night, I lost it. I went to Mama and Daddy, and I just released it. I ugly-cried and said things that I've been keeping bottled up for months. I released all the frustration and sadness, and then, I actually felt better. 

However, I still don't understand it.

I don't understand why I can't just get well.

I don't understand why I've been diagnosed with an uncurable condition.

I'm tired of being tired all the time and the way it limits me from doing things I want to do.

I hate getting lightheaded and dizzy. 

I hate that I can't lift my arm to even grab a plate out of a cabinet or pull my child up into my lap. 

It may sound trivial but even things like decorating my classroom...I can't do that because I can't raise my arms, and I hate that, too. 

I hate that my condition keeps me from putting forth my best in everything, being a mama, being a teacher, and more.

I hate that everytime I feel bad about all of this, I also feel guilty, like I have no right to complain because I have it pretty good compared to others around me. 

I hate feeling helpless and having to ask others to do things for me.

I hate the looks I get from people when they find out I'm in heart failure...looks of disbelief. I hate the "but you're so young..." that comes right after it. Yeah. I wish I could explain it, too. "I hate the "but how did this happen to you..." question that comes next. If I knew, I'd tell them.

I hate the fact that at 32-years-old, I've thought more about dying than most of you ever have. I've had that conversation with my husband where I've explained to him where all the paperwork is for my life insurance policies. I hate that I had to do that. It makes me grateful for every single day that I'm blessed to live, though.

I hate that they gave me paperwork for an advanced directive and I had to make desicions about the kind of care I would want in case I can't make them for myself. I hate that I signed all the papers but am scared to turn them in because I feel like it's so final. So, when they ask me if I have one, I just say no. 

I want Grayson to have a mama who is well, and I hate that he doesn't. He deserves more, and I don't understand that either. I hate the fear he feels everytime I go in the hospital. No child should have to feel that. 

I don't understand why I had to choose to give up my sweet baby when so many people don't want their own. He is still so very loved. If love could have saved him, he'd be here with us. 

Despite all of this, I KNOW that my God hears every worry on my heart and every bit of frustration in my prayers, and I KNOW that He knows my pain. I KNOW that I will never walk this jouurney alone, and I KNOW that there's a purpose for my pain, and maybe, just maybe, that's what makes me strong.

lyrics from the song "Just Be Held" that I listened to as I wrote this...

Hold it all together

Everybody needs you strong

But life hits you out of nowhere

And barely leaves you holding on

And when you're tired of fighting

Chained by your control

There's freedom in surrender

Lay it down and let it go

So when you're on your knees and answers seem so far away

You're not alone, stop holding on and just be held

Your world's not falling apart, it's falling into place

I'm on the throne, stop holding on and just be held

Just be held, just be held

**please know that I am forever grateful for your love and prayers.

{matters of the heart} just an update

It's been awhile since I've updated my blog. In my last post, I talked about how I was scheduled to go in that day and have the Optimizer device implanted. This device was supposed to help my heart function increase. The nurse had called that morning as we were walking out the door and cancelled the surgery for that day.

She called back later that day and rescheduled for the following day, so I had my procedure on January 25. The Optimizer device was implanted, but it was discovered at that time that one of my leads from my defibrillator had moved a little, so I had to go home wearing a Life Vest, which is an external defibrillator. I wore it for a few weeks, and then they did a procedure where they put me to sleep and raced my heart up to see if my defibrillator would react. It did, so that meant it was still working despite moving some, so I didn't have to wear the Life Vest anymore. 

As for the Optimizer, I've had nothing but trouble with it. I charge it weekly, and it frequently gives me an error message. The latest error message is that I'm not getting enough therapy from it, so I go back next week to have it checked. I've had to go back quite a few times to have it adjusted. I'm hoping that they can get it all straight soon so I can start feeling better. I have had a little more energy here lately, so I'm grateful for that. 

As far as my heart problems go, my cardiologist had thought that I was probably misdiagnosed with asthma years ago when I was first diagnosed. The asthma symptoms such as shortness of breath can mimic heart failure symptoms. I had a pulmonary function test done last week, and they determined, that I do, in fact, have asthma. My cardiologist said the asthma is working against my heart failure, and vice versa. As he gave me the news, I hung my head in frustration. My sweet, sweet doctor told me to keep my head up and stay positive just like I've been doing. He said I've been through a lot and my fight wasn't over. Trusting in God doesn't mean I still don't get discouraged at times, but it means I just know who to turn my problems over to.

For now, I am going to a pulmonologist next week for a consult. There's a medication that treats both that I might could possibly take in the future, but that's something my doctor and I will discuss another day. 

I don't know what else to say about it...just wanted to give y'all an update. I'm grateful for my health - even if it isn't the best - because there are so many people in worse condition than I am. I go to the cardiologist, and there are always elderly people in the waiting room with worse problems than me, and I just feel grateful. I see children battling cancer and other illnesses, and I'm grateful for my health. I pray for all of those people because I definitely don't have any room to complain. 

I want to thank you all so much for your thoughts, concerns, prayers, monetary donations, and more! It is all so greatly appreciated by me and my family. I feel so blessed and so loved. 

{matters of the heart} on hurdles

Hurdle. An obstacle or difficulty. For example, "There are many hurdles to overcome." Similar words are barrier, stumbling block, obstacle, hindrance. No matter how you define it or say it, a hurdle is one thing for sure - a discouragement.

I was finally set up to get the optimizer device - the one that is supposed to help my heart. At first, I was told all these wonderful things about it and then brought in to sign the consults only to be told that I didn't qualify. Then later I was told I did qualify for it, so I got approved and the surgery was scheduled. Three days before the surgery, I received a letter in the mail from my insurance company saying that they would not authorize it because it wasn't "medically necessary." The hospital got everything straightened out with the insurance company on Monday.

I woke up this morning feeling anxious. My stomach hurt. My heart was racing. I felt shaky. I was so ready to get this procedure over with. I packed my hospital bag, and just as we were about to walk out the door, the phone rang. Ochsner. The nurse said the hospital was busy today, and the doctor asked her to reschedule. She's going to call me later and see if they can get me in next week.

Satan is working overtime, y'all. To tell you I am okay with this would be a lie. I planned time off work. I left plans for a substitute. I was ready.

There's a reason I'm not having this surgery today. I know that there's something in God's plan that kept me from going to New Orleans today, and even though I'm so frustrated, I'm trying to accept that. The nurse said she will call me later today to reschedule, hopefully for next week.

{matters of the heart} I believe

It should have been different this year. That's what I said to my husband as we finished setting the "Santa gifts" up under the tree. Grayson had just fallen asleep in his new Lightning McQueen sleeping bag and tent - a gift from his grandparents. It should have been different this year. It could have been different this year. And as tears began to fill my eyes, I said, "there should be gifts for two children under the tree."

My heart hasn't been quite as lonely lately, as time heals the broken heart, but with Christmas time comes reflection and a longing for something I never got to know - being a mama to two. I've accepted that it just wasn't in God's plan for us to have that sweet baby, but the hurt is still there sometimes, especially when I think about what an amazing kid my Grayson is and how he has the the kindest, most sensitive heart. He would have loved that little brother. He randomly told me other day that he wanted a baby for Christmas. "Me too," I said. "Me too."  

Despite all the troubles my family has faced this year, I have to believe. I have to. I have to believe in the hope of Jesus. That God sent His son into this cruel world so many years ago...into a world that didn't even have room for Him. He sent Him to save the whole world when most of the world doesn't even want a savior. I can't even imagine what it was like for our God to do that, especially when He knew what the fate of His Son would be. That's the truest form of sacrifice and love. 

I believe because I have hope. I got that hope when Jesus died on the cross for all of us. And no matter how bad things on Earth get, no matter how far I feel the world turning from Him, I still believe in that hope. I believe that just like God sent His Son to be born in that little town of Bethlehem that night, He's going to send him again one day to save all of us who have held to our faith and salvation at a time when just like when He was born, the world has no room for Him. 

I believe that our "angel baby" is with Jesus, and being held by my sweet aunt, who went to Heaven just a short time before that. I believe that Jesus saved our sweet baby from this world by bringing him into a perfect place...a place where he would never know anything but peace and love. That's my hope. I have that hope that our Savior will take us there one day, too, and there my heart won't be broken anymore. My hope is in Jesus. And I believe.

And I believe that there's a place called Heaven

And I believe in a place called Calvary

I believe in a man his name is Jesus

And I believe that he gave his life for me

- music by Dailey and Vincent

{matters of the heart} on changing

A year ago, Lysa Terkeurst posted this to her Facebook page. "What if God's plan is to change us through this before he changes our circumstances in this?" I shared it because I was going through a difficult time. We had just gotten the news that our baby's life, and mine, might be at risk, and we were waiting on test results to confirm. Her post showed up in my Facebook memories today, and I found myself comparing my feelings about this post last year to my feelings now.

Last year my heart was so heavy. So burdened. I wanted so badly for things to turn out MY way that I'm not sure if I was really even seeking God's will. I kept saying "Thy will be done," but did I believe it? I wanted him to answer my prayers my way, but as we know now, that's not how things turned out.

Here's what did happen. He changed me. God changed me and showed me that He is still in control. He didn't change my circumstances, but He taught me to fully rely on Him...to let Him hold me as I went through one of the scariest days of my life. He changed me because He made me stronger. He made me more faithful. He taught me to never give up and to SEEK HIM.

As I begged him through my tears every day to change those circumstances, He was already at work changing ME. It took having my heart literally and emotionally broken to make me understand that it wasn't all about me. You see, God put me in that circumstance in that time to teach me something. He showed me that I can't do this alone, and  now when people say to me, "I don't know how you're going through all this," I know just how I'm doing it. Mercy. The endless mercy of my friend, Jesus. He is good, and His mercy endures. Forever.

{matters of the heart} life is tough, but so am I

Defeated. That's how I feel this evening. I wrote an update yesterday on how the plan now is for me to get the Optimizer device for my heart. I had been told by the doctor that this was a great opportunity for me, with assurances that it would make me feel better, have more energy, and have less shortness of breath.

I couldn't help it. I was excited. I thought that within a month or so, I could feel like a healthy person again. After a year of dealing with a diagnosis of heart failure, I was running to the hope I'd been given. 

Today I sent a message to the coordinator of this study asking her when my surgery date would be. Her response wasn't exactly what I wanted to hear. She said that the sponsor of the clinical trial was not sure if they wanted to implant this device in me due to my diagnosis of eosinophilic myocarditis. They believed that this device may not help me at all, and if it doesn't, then they didn't want to take a chance on the implantation. She said she was waiting on a phone call from them with their final decision.

Just like that, I didn't feel so certain in that hope anymore. Now I don't even know what to think or do, other than just wait on that phone call telling me if I've been approved for the device or not. 

Life is tough, but so am I. That's what the pin on my shirt says. I went back to work today, and I was so excited to see all my students. I missed them so much, and I could tell they missed me, too. Two of my students gave me a card with that pin attached to the front, and I knew it fit me perfectly. 

Despite having a great day back at work, I feel discouraged with the news I received today. However, the truth is that my hope's not in this life. If we put our hope in this world, we are going to be let down. I spend so much of my days trying to be brave. People tell me that I'm always smiling and that I'm so strong. That's not me, y'all. I don't do that alone. Like the song below says, I'm just trying to hold it all together piece by piece. I'm not brave at all, but my Jesus...He is, and that's more than enough for me. 

I may have worries here in this life, but my blessings outweigh my burdens everyday, and that...well that's something to be thankful for. I can look at the heartache I've been through and feel sorry for myself, or I can be grateful. I can be grateful that I've been BLESSED with great doctors, with a great hospital nearby, and with AMAZING family and friends to support me. I can be grateful that with these people on my side, I don't have to feel defeated, and with their help, I can get back up and fight. That's exactly what I'm going to do.

I've been doing all that I can

To hold it all together

Piece by piece.

I've been feeling like a failure,

Trying to be braver

Than I could ever be.

It's just not me.

So be my healer, be my comfort, be my peace.

Cause I can be broken, I can be needy,

Lord I need You now to be,

Be my God, so I can just be me.

{matters of the heart} an update

It's been awhile since I've updated this blog with my heart condition. That's because there are days that I really just don't want to talk about it. However, I have gotten a lot of good reception to me sharing my story through this blog, so I'm going to continue. So many of you shared with me that you loved reading my thoughts and about my experience. I appreciate that so much. I was so scared to share that deeply personal story of last January with you. Not many people knew about it, and many of you said things like "I knew you had a hard time, but I had no idea it happened like that." Thank you for loving and supporting me.

To update you on what's been going on with my heart, I had a defibrillator implanted on November 6. For those of you who don't know what that is, it's a small device that was implanted just above my left breast. If my heart stops beating, it will shock it back into rhythm. You know the shocking machines on Grey's Anatomy and other medical shows? Picture that on a smaller scale. A lot of people have been asking if I feel better since having it done, but it doesn't make me feel better. It's just there literally to save my life if I go into cardiac arrest. As for increasing my heart function, it doesn't do that, but we have found something that will.

At my last visit with my regular cardiologist, we met with a Heart Transplant Coordinator and began the process of talking about those options for me. However, the arrhythmia doctor who implanted the defibrillator felt that he had another option that would help me. It's called a Cardiac Contractility Modulation Device...also called an Optimizer. They have been doing a clinical trial with this device, and it's been proved to be very successful with the trial patients. I was unsure about it at first, because, let's face it...this is a LOT to take in all at once. I just want to be a mama and teach kids and bake cupcakes now and then. If this device can improve my quality of life, then I'm on board. I'm tired all the time. I have days where I am so weak, and I wake up feeling like I'm about to cough my lungs up every morning. This device is supposed to decrease my fatigue and shortness of breath and make me feel better. If you want to read more about how the device works, here's the link to the company's website. I have to have some labs done and wear a heart monitor for 24 hours before I can get this device implanted, so I'm going to see about setting those appointments up soon. Hopefully we can do this procedure right before Christmas break so that I can recover during the Christmas vacation from school and return in January. If this device is successful for me, then that means I don't have to get a heart transplant, and that is truly an answered prayer...or PRAYERS because I know how many of you have been praying for me. :)

Nobody ever wants to have to deal with health problems, but I must say that I have had an AMAZING support system in my family, friends, and co-workers. I'm so grateful for all of you. Thank you isn't enough.

Common questions and answers about heart failure...

What is heart failure?
Chronic Heart Failure, or CHF occurs when the heart is unable to pump sufficient blood to meet the needs of the body. Doctors index heart strength by a parameter called the Ejection Fraction (EF). A normal EF is greater than 55%, but in CHF, it typically falls to values less than 45-50%. FYI - mine has been as low as 20% but was most recently measured at 30%.

What are the symptoms?
Common symptoms of heart failure include shortness of breath, fatigue, weakness, persistent coughing and difficulty performing everyday tasks such as grocery shopping or climbing stairs. Another sign of heart failure is the accumulation of fluids in the legs, feet, abdomen, lower back and lungs. I have every single one of them. I didn't make it to church this morning because of a severe cough. I struggle with fluid retention and have to take a ridiculous amount of Lasix daily.

Information from the Impulse Dynamics website.

{matters of the heart} the beginning

I've started this post in my head a hundred times, and I still don't know what to say. This...the beginning...is the hardest part of all to share. It's the post that hurts my heart the worst. I questioned whether or not I should share my whole story or leave certain parts of it out, but then I saw this picture below on Facebook the other day, and I felt that it stuck with me. That's the goal of me sharing my story - to be real, be humble, be strong, and be able to share myself and touch the lives of others through that process.

Not long after I got married back in 2011, I started being sick all the time. I had a cough that wouldn't go away and shortness of breath. I went to the doctor over and over for different medicines and shots. Each time I got the same answer - bronchitis. Around Thanksgiving that year, I ended up in the hospital and was told I had asthma. I had never had asthma problems prior to that time. I followed up with a pulmonologist (lung doctor) and started a regimen of medicines and inhalers. The problem was none of them, no matter how high the strength, ever helped me. I tried practically ever inhaler on the market at the highest dose. I did allergy testing. I took allergy shots. I took several different pills every day for the asthma. Nothing made me feel any better. I stayed in and out of doctor's offices and emergency rooms always with the same symptoms - coughing, wheezing, and shortness of breath.

Nobody ever checked my heart. I guess that's not something you typically check on twenty-something-year-old people. They treated me for an asthma attack, prescribed lots of steroids, and sent me home.

Around October of 2016, I found out that was I expecting a baby. Having already had Grayson, who was three at the time, I was thrilled at the thought of him getting to be a big brother. I had an ultrasound and was excitedly planning for Baby #2. At a routine visit with my pulmonologist, she became concerned that I could have something pulmonary hypertension - a condition that would be both fatal to me and the baby - and she referred me to a different cardiologist. I went for a consultation with the new cardiologist, and he wanted to do an echocardiogram (an ultrasound of the heart) to rule out the pulmonary hypertention. He did agree with the pulmonolgist - if I had this condition, it would kill me and my baby because my heart wouldn't be able to handle the pregnancy.

On the day of the echocardiogram, Mama and Grayson went with me. I had the test, and as I was walking out of the room, the doctor stopped me. He had already read the results, and he came to me and said that I did, in fact, have pulmonary hypertension. I asked him how bad it was. He replied, "severe," and then he handed me tissues because I couldn't stop the tears from flowing. He didn't have to explain what that meant. I already know what it meant for my baby. Mama and I took Grayson to Andrew and Daddy's work, and they took him home to Aunt Melonie. Later that afternoon, with tears brimming in his eyes, that sweet doctor told me that he had never before had to do anything like that, but it was his recommendation for me to end my pregnancy. I had no choice. I could choose to carry the baby, and the baby and I would both die. There was no "maybe" about it. Having a four-year-old at home, I couldn't take that risk. 

My heart was broken - in more ways than one.

We went to see my OB/GYN, who took Mama and I in her office and recommended a place to go to in New Orleans. She had already made me an appointment. I was so naive because I thought that because this was a medical emergency and a life or death situation that it could be done at the hospital, but apparently not there in Slidell. I was being sent to an abortion clinic...the horror of that place and the memories there still haunt me. 

Aunt Mary drove Mama and I to New Orleans for the appointment. My stomach hurt all the way there. We pulled up at this place, and I prayed and begged God for another way. This place was in an old house in a not-so-nice-looking neighborhood in New Orleans. It was the kind of place that had bars on the windows and an armed security-guard. One step at a time, we walked down the sidewalk, straight into an abortion clinic...a place I never thought I'd find myself. The waiting room was filled. Another waiting room off to the side was filled as well. There was standing room only. Disbelief filled my mind as I realized, "Every one of these women is here to give up her child. Every single one." Every woman present in that waiting room that day represented a baby that would die. My heart ached even more because at that moment, I felt grief and guilt all at the same time. We were told that due to my situation, we would not have to wait in the waiting room with the others and would get taken back right away to meet with the doctor, but that wasn't the case. We had to stand up and fill out paperwork while we waited. When they called me back, they wouldn't let Mama come with me. Here I was, a 30-year-old woman, crying and wanting my Mama to come with me, but it was something I had to face on my own. They drew my blood and did an ultrasound of the baby. They asked if I wanted to see, and I said yes, of course. The doctor then explained the procedure. I was horrified at the whole process, and it was not something I wanted to put my baby or myself through. I kept asking her, "Are you sure this is the only way?" Over and over that day, I just kept thinking, "There has GOT to be a better way." We set up an appointment to come back later that week. 

The day before New Year's Eve, I was gasping for air, so Mama and Daddy took me to the emergency room in Slidell. They admitted me to ICU that night. The next morning, my pulmonologist just happened to stop in the ICU to visit other patients and saw my name on the patient board. Okay, so we know that wasn't coincidence...that was God because when she got in there, things started happening. She asked me about the baby, and I told her what was planned. She said that was unacceptable and that with my condition, I needed to be at Ochsner. After getting a central line in my neck and an arterial line as well, they transferred me by ambulance to Ochsner Medical Center in New Orleans. There I was in the Cardiac ICU. I stayed in the CICU for a few days while a number of doctors studied my case, including a high-risk OB/GYN. They wanted to make sure their diagnosis agreed with the diagnosis of my other doctors. After doing another ultrasound, another echocardiogram, etc., they concluded that I did, indeed, have severe pulmonary function, and my life was very much at risk. I remember the day my doctor sat down by my bedside and told me that he had never recommended ending a pregnancy to anyone, but if I was his own daughter, he would have told me to do the same thing. This wasn't something that I or any of the doctors took lightly. I appreciated that about all of my doctors. They knew how much I was hurting and how much our baby was already wanted and loved. Everyone treated me with sympathy and kindness at a time when I had to do the hardest thing I had ever done. I have always been pro-life. I still am. However, I know that I did what was right at the time. At first, I worried what all my family and friends would think of me. Then I realized that all the people that knew and loved me fully supported me, and the ones that didn't...well, their opinion didn't matter.

The next day I was given medication to make my body go into labor. I turned off my phone because I didn't want to talk to anyone at all. Mama and Daddy stayed with me all day. At 9:00 p.m. on January 5, my sweet baby was born. I don't know if it was a boy or a girl, but I do know that even at 13 weeks, it had the form of a baby, with a head, a body, arms and legs...even little fingers. Y'all, I don't know how anyone could ever say a baby in the womb is not a life because my baby is proof that it is. Mama and I got to see the baby before they took it away. I'll never forget that. The OB came, and they took me to the operating room to do a D&C. I know that God was with me through that entire experience because I begged to not have to give my baby up in that awful place we had went to. When I went in that OR, I not only had an OB there and a full staff of nurses, anesthesiologist, etc., but there was a cardiologist as well. I was well-taken care of, as would not have been the case elsewhere. I know that my baby opened his or her eyes, and the first thing it saw was the face of Jesus. I know my baby rests in Heaven with my loved ones. As for children, I was asked often if I would try to have another baby. I can't. I absolutely cannot have another child. However, my life is so blessed with Grayson; he's my joy. 

I was able to go home the next day. I took some time off work, and then I went back and submerged myself in teaching to try and keep my mind off the grief that filled my heart and mind. I cried almost every day on my way to work. There were times I had to pull over because the tears would cloud my eyes. For months, I was just not okay. I tried to hide it. I did a lot of crying in private. I felt guilty if I grieved that whole process and the loss of the baby because I felt like I wasn't being grateful for the child I had. If I didn't grieve, then I felt guilty about that, too. It took a long time for me to get back to a place where my emotions were controlled. 

I've been following up with the cardiologist that saw me in the hospital ever since January. He is amazing. He has tried to control the heart failure with medication, but my heart's just not improving, unfortunately, and that's how this all got started. After years of misdiagnoses, feeling weak, tired, short of breath, etc., we finally know that my heart is failing, but my will is not. There is a purpose for all of this. There's a reason for my pain. I may not know it yet, but that's why I'm sharing my story. I'm being humble, and real, and strong, and I pray that someone gets a blessing out of my journey.

There were photographs I wanted to take.

Things I wanted to show you.

Sing sweet lullabies.

Wipe your teary eyes.

Who could love you like this?

People say that I am brave, but I'm not.

Truth is, I'm barely hanging on.

There's a greater story...

written long me 

because He loves you like this.

I will praise the One who's chosen me to carry you.

Such a short time,

such a long road.

All this madness, but I know

that the silence has brought me to His voice.

{matters of the heart} on living

I've had comments made to me a lot recently along the lines of "I don't know how you're doing it," or "I don't know how do everything you do," or "Why are you at work?"

Let me tell y'all how I'm doing it. Jesus. My Jesus gives me the strength to tackle the day, and that's exactly what I do. Then I rest by His grace, and I get up and do it again the next day. Yes, I am absolutely worn out by the time I get home from work every day. Thank goodness for my crock pot, y'all. It's saving my family from another McDonald's meal one slow cooker recipe at a time. Every day around lunch time, I get so weak and tired. Fatigue...just a normal part of heart failure. 

My job alone is stressful - even for a regular person not dealing with heart failure, but teaching keeps my mind off everything. It gives me 78 other hearts to focus on besides my own, and my prayer is that I can teach them so much more than Language Arts. I want them to leave my classroom knowing how to, above all, be kind, and if I can show them the love of Jesus through my love for them, then I've really accomplished something. I can't control my own health, but teaching...that's something I can do. 

The thing is...I have to keep on living. I have moments where I cry it out, moments where I throw myself a full-blown pity party, but I don't live there. I cry it out and move on and keep living. I go to work because it gives me purpose during the day. I go to church because it renews my spirit. I pick Grayson up at school with a smile on my face because he cheers me up like nothing else. Heart failure may be my disease, and it may scare me so bad, but it does not define me. 

Nobody knows the number of our days, but while I'm here, I'm going to make the days count. I'm going to love as much as I can and do as much as I can, in all the time I can. 

I don't know what tomorrow will bring.

I can't tell you what's in store.

I don't know a lot of things.

I don't have all the answers to the questions of life, 

but I know in whom I have believed,

and He knows my name.

Every step that I take,

every move that I make,

every tear that I've cried,

He knows my name.

When I'm overwhelmed by the pain, 

and I can't see the light of day,

I know I'll be just fine

because he knows my name. 

{matters of the heart} how you doing?

I live in the South. We Southerners are known for our manners, so you can't go anywhere without anyone saying, "How you doin'? You know what most people reply? "Good." Most people say they're doing good. I found myself answering that way this morning when someone asked me how I was doing, and I stopped and thought, "No...I'm not." I'm lying. I'm not good. I'm not okay.

The truth is that I'm not sleeping well. My mind is a mess. I’m exhausted. I can’t walk far without getting out of breath. I can't turn my thoughts off. I hug my little boy everyday like it might be my last. I'm confused. I'm overwhelmed to the point that sometimes I just can't stop the tears from coming. The truth is that my heart is broken...both physically and emotionally. I put on a happy face everyday and try to go about my normal day, but I'm just broken.

I'm a wife, mommy, daughter, and teacher suffering with advanced heart failure. My heart is weak and enlarged. My heart function is low, and my valves are damaged. The blood doesn't pump properly through my heart. I think there's more that I can't even recall right now. I've been on a myriad of medications since January 2017, but the medicine isn't helping to increase my heart function.

On Wednesday, October 18, my cardiologist finally felt it was time to meet with the Heart Transplant Coordinator. She met with me and my parents, and I left with an overwhelming packet of information on Left Ventricular Assistive Devices (LVADs...heart pumps) and Heart Transplantation. I learned what UNOS meant after hearing it all this time on Grey's Anatomy. In case you were wondering, it's the United Network of Organ Sharing.

I am not sure I've processed all of this yet. I want to wake up. I feel like it must be some bad dream, right? It's not, though. This is my life now, and this is the mountain God is giving me to climb. The process to be evaluated for the heart transplant list is incredibly overwhelming (seems like I use that word a lot these days), but the only way I know how to deal with this is lean on Him for understanding and take each day, each appointment, each test, just one at a time.

You're probably wondering how a 31-year-old person got such a damaged heart. Yeah, I wonder that myself a lot, too. I'll start from the beginning...next time.

As for now, when you ask me how I'm doing, the truth is "I'm fighting. I'm surviving."

"Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD." Psalm 27:14