Saturday, November 28, 2015

Prayer Group and Picture for My Surgery Tuesday

My sweet friend Alyssa, who also has Lyme made a Facebook prayer group for me. If you want to join, here is the link

Also, Alyssa asks that you change your profile picture to this to show support

I'm so humbled by all the prayers and support. I love you all!

Friday, November 27, 2015

Heart Surgery on Tuesday

(For those who are new here, I am 22 and have had Lyme Disease for 10 years. It has affected every one of my organs, but God is so good! He is my strength and my hope!)

I hope you all have had a great Thanksgiving! We have so much to be grateful for! I'm so thankful for every one of you! You have been such a blessing to me; supporting me, praying for me, and encouraging me. "I thank my God every time I remember you" -Philippians 1:3
I pray that I encourage you too.

This Tuesday, Dec. 1st, is a big big day! It's the day of my long awaited heart surgery. I have to be at the hospital at 5:00am and the surgery starts at 7:30am. It is expected to last all day and could be 10+ hours. It's a rare surgery so it's a little scary.

"There's a peace I've come to know
Though my heart and flesh may fail,
There's an anchor for my soul
I can say, 'It Is Well'

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God, fall on my knees 
And rise, I will rise"

"You get glory in the midst of this
and You're walking with me
And You say I am blessed because of this
So, I choose to believe
As I carry this cross, You'll carry me

And I know Your promises are faithful
and God, I've seen Your goodness in my life
And oh, I've found your mercy is a river
Your love is an ocean wide"

-How we got here-
Ever since I got sick with Lyme Disease 10 years ago, I've had tachycardia, which is a really fast heart rate. My heart rate can be 150bpm even when I'm just lying down, and then goes even higher when I stand up. Until this year, no one has done anything about it. I've seen cardiologists and they haven't looked into it really. When I started having seizures, I was referred to an Electrophysiologist. They are special cardiologists who study the electrical system of the heart.

In May of this year, at the Oklahoma Heart Hospital, I had a procedure called an EP study, done by the Electrophysiologist. According to Google, an EP study "tests the electrical conduction system of the heart to assess the electrical activity and conduction pathways of the heart". During this procedure, they put wires in your heart and have to make your heart rate go up to around 300bpm to make a map of your heart's electrical system. This shows them exactly where the arrhythmia is. I was awake for this procedure and it is not pleasant to have your heart rate that high for hours, but it needs to be done. So during the EP study in May, they found my heart arrhythmia and I was diagnosed with Atrial Tachycardia, which is a specific type of arrhythmia. We found out that the arrhythmia was contributing to my seizures. They then planned on fixing it. During the 5 hour procedure, that I was awake for, they realized that my arrhythmia is too close to the nerve to my diaphragm (the phrenic nerve), so they couldn't fix it without causing damage to my diaphragm. They ended up shocking my heart to get it to slow down, and then the next day, I had a surgery to put in a permanent heart monitor in my chest. I still have that heart monitor and it is right under the skin by my heart. The doctors are able to always see what my heart is doing.

After those procedures, we sent my records to Baylor Hospital in Dallas because they are supposed to be the best at heart procedures. The head of Baylor looked at my case and said that they don't do the procedure I need. It's not a common procedure and is very complicated and risky. That was frustrating since they're supposed to be the best.

We were then sent to OU Medical Center here in Oklahoma City and have been working with cardiologists there ever since this summer. We love them, and they have agreed to try the surgery I need!

-About surgery Tuesday-
On Tuesday, there will be a lot of people involved in my surgery. I will have at least 3 cardiologists, a general surgeon, an internist, anesthesiologists and nurses, and other doctors on stand by if needed. Since it's not a common procedure, they said that there will probably be a lot of people in and out to watch it. I'll be famous! Just kidding. I'll be the only case for the day and the procedure will take most of the day. I will have to be awake for it. Yes, AWAKE, all day, while they try to fix my heart. I'll explain why later in this post.

Many of you have asked what they will be doing during the surgery. Once we get into the OR and they place all the lines and monitors, they will do another EP study, which is what I had done in May. In May, the EP study took 5 hours, and they said that this one Tuesday will be way more detailed, so it could take double that time. 

Once they find the exact location of the arrhythmia, they will start to try to fix it. To do this, they have to move my heart away from the phrenic nerve (nerve to my diaphragm). They have 3 or 4 approaches to try and move my heart, each one more invasive. It is a very delicate procedure. The last approach is for a surgeon to move my heart with his hand. If they are able to get my heart far enough away from the nerve to my diaphragm, they will then do an ablation, which is where they burn off the part of the heart that is causing the arrhythmia. That is the plan for how they will try to fix my heart. 

Like I said, I will be awake for this surgery. Why? They need my heart rate to be really high for the EP study, and then also as they try to fix my heart and sedation lowers your heart rate. They usually don't do this complicated, rare, and long procedure with the patient totally awake, but we've all decided it gives us the best chance of fixing my heart. I will have an anesthesiologist sitting by me the whole time, and if I absolutely cannot handle the pain, or they end up having to move my heart with their hand, they can put me to sleep. Unfortunately, putting me to sleep increases the risks and the chances of success go down. So my goal is no sedation and no pain medicine. My cardiologists are very honest with me and told me it is going to be so painful and uncomfortable, but God will hold me. They will put me to sleep once they are done and as they take everything out of my heart and get me to the recovery room.

I will be in the hospital, possibly ICU, for at least a day, maybe longer depending on how it went and how I'm doing. 

There are several possible outcomes of this surgery because they aren't sure if it is going to work. The best outcome would be that they are able to fix my heart and that the arrhythmia doesn't come back. They are worried that my immune system is attacking my heart, causing the arrhythmia, and that if they fix it, that my immune system will attack another part of my heart and create a new arrhythmia. We are praying that doesn't happen. There's also a possibility that they get in there and can't get my heart away from the nerve so it would be too risky to try to fix. It's scary knowing there are so many things that could happen, but I really have the best doctors in the world, and God holding me, just like always. My surgeons are worldwide known for their procedures.

"It is well, it is well, through the storm I am held, it is well, it is well with my soul" 

My surgery has been rescheduled a lot and was supposed to be last week. I got pneumonia and we needed to get my kidneys checked out, so my cardiologist called and said that it would be too risky to do last week, so they moved it to Dec.1st. Unfortunately, one of my cardiologists was scheduled to be out of town on Dec.1st and I was bummed because he's so caring. A few days later, he called to say that he cancelled his whole trip just to be in my surgery. How incredible is that?! I'm SO grateful! Not many doctors would do that, but mine really care. It's a big surgery and he wants to be there for me. I'm blessed to have such great doctors!

I had pre-op tests a couple weeks ago and they all went well except for when they needed to get blood work. I've had 5 PICC lines and I had a port in my chest for 4 years for IVs because my veins are so bad. The pre-op tests took 4 hours because they could not get blood. They called in everyone and even tried in my feet and couldn't get anything. So, they're going to put a femoral central line in once we're in the OR so that they don't have to try to get normal IVs. They said they need lots of access for the surgery, so they'll put several central lines in once we're in the OR since they're tricky to put in. 

This week I finally saw a Nephrologist (kidney doctor) and was diagnosed with Stage 2 Kidney Disease, which means my kidneys aren't functioning as well. It's not a big deal right now, we just have to watch it. That helps explain my enlarged kidney, a cyst in my kidney, and me retaining fluid. My heart and kidney problems are causing me to retain fluid so I'm on diuretics for that. I was also diagnosed with Interstitial Cystitis or IC, which is an autoimmune problem that affects the lining of the bladder. It causes the bladder lining to be so inflamed that it bleeds and it causes severe pain and feels like you have a bladder infection 24/7. I have so many autoimmune problems. My stomach paralysis, neuropathy, they said kidney and heart problems might be auto immune, it's crazy. We'll be looking at treatments after my surgery. 

This is all a lot to take in, but I have peace because of God. You all have been praying, and God has given me peace. 

Sometimes when we are overwhelmed, we don't know what to do. But I love 2 Chronicles 20:12. It says, "For we have no power to face this vast army that is attacking us. We do not know what to do, but our eyes are on YOU." 
Look to God!

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day." 2 Corinthians 4:16

Prayer Requests: 
  • Peace for my family and I as Tuesday gets closer
  • Peace and patience for my family and friends as they wait during my surgery since it'll be an all day surgery
  • That they be able to get the central line IVs in easily
  • That I'll be able to do the surgery without sedation and not be in a lot of pain
  • That the surgery will work and the arrhythmia won't come back
  • That there will be no complications during and after surgery
  • That recovery will go well
  • That I will be able to show God's love to the doctors and nurses taking care of me
  • This is odd, I know, but please pray that my bladder problems don't flare up during and after surgery. Bladder catheters really irritate things and I'll have to have one for the procedure and after when I'm on bed rest for 6 hours to prevent bleeding from where they went into my heart. 
My surgeons told me to make a playlist on my phone to play in the OR since it'll be such a long surgery, so please comment with encouraging songs! Also, I'm making a poster with encouraging Bible verses to have while I'm in the hospital, so please also let me know your favorite verses! I hope that the songs I choose will encourage the surgeons and nurses as well! I hope I can talk to them about how God has gotten me through everything and talk to them about the meaning of the songs! 

Honestly, I'm scared. I'm scared about the pain, being awake during the long surgery, and scared that it might not work. But because of God, I can be scared, but not terrified, I'm tired, but I'm still fighting. All because God. He gives me strength to go on!

2 Corinthians 4:8-9 says what I'm feeling perfectly. 

We are praying that this surgery works. If it does, we will have a huge celebration! But even if it doesn't, God is STILL good, He is STILL faithful, and we will be okay! Just like in Daniel 3, Shadrach, Meshach, and Abednego were going to be thrown into a burning furnace for not bowing down to the King. They said that God was able to save them from burning in the fire, but EVEN if God didn't do that, they would STILL praise Him and He was STILL GOOD. I hope to live life like that. Even if my heart isn't fixed, I will STILL praise Him! 

I will update as soon as possible after surgery. Please be praying!!!

If you want updates sooner, you can:
  • Follow me on Twitter (@VictoriaShariW)
I will have my family update my social media throughout the day as they get updates from the OR!

Tuesday, November 24, 2015

Will post more soon but wanted to let you all know that my heart surgery is Tuesday, Dec. 1st, so a week from today. Please be praying about it! I have to be awake for it and it will last most of the day. Thanks for your prayers!