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Saturday, March 26, 2016

Leaving for Germany Today

Today is the beginning of the next phase of my journey- my stem cell transplant in Germany. Thanks to God and YOUR generosity and prayers, my mom and I leave for Europe today! We leave Oklahoma City around 3 this afternoon and fly from here, to Houston, to Frankfurt Germany, and then to Austria. We are spending the first week in Austria while I adjust to the time difference. I will start treatments April 4th in Germany. 

"I will praise the Lord no matter what happens. I will constantly speak of His glories and grace. I will boast of all his kindness to me. Let all who are discouraged take heart. Let us praise the Lord together and exalt His name" Psalm 34:1-3

Prayer requests for today-
   -Safe flights with no problems 
   -Comfort and peace. On the 10 hour overnight flight I have to get up and walk every 30 minutes to prevent blood clots since I'm at risk because of my heart surgery and PICC line. I'll be wearing compression stockings also but I won't be able to sleep since I'll be getting up so often.
    -That I will not have a lot of pain and nausea 
     -That God will be glorified in everything
    -No problems with my PICC Line
    -Strength for my mom as she takes care of me. 
    -Peace for my brother and dad and others who can't go with us.  

I am very excited and nervous for this trip. Anytime you start new treatments it is scary and full of hope. Traveling halfway across the world for new treatments is also scary and full of hope! But God is with us. 

"When this burden is lifted I'll give praise to Your name, but until it's finished I'll give thanks just the same. For we have this hope as an anchor, you are with us, we will never be alone"

I didn't realize until recently that we arrive in Europe on Easter Sunday. How fitting is that? We're chasing physical healing, but we have peace and hope because the grave was empty! Jesus overcame death to give us live to the FULL!!!!

"So be truly glad. There is wonderful joy ahead, EVEN though you have to endure many trials for a little while" 1 Peter 1:6

"Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hopethrough the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade" 1 Peter 1:3-4

I love this song called I Will Rise. It's been one of my favorite songs since I got sick along with Psalm 73:26, "My flesh and my heart may fail, but GOD is the strength of my heart and my portion forever". 

"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 

There's a day that's drawing near 
When this darkness breaks to light 
And the shadows disappear 
And my faith shall be my eyes 

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 

And I hear the voice of many angels sing, 
"Worthy is the Lamb" 
And I hear the cry of every longing heart, 
"Worthy is the Lamb" 

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"
It's interesting to me when I see or hear comments from people who have just heard my story. Especially with the news story that they did last week about my journey, I've heard even more people say that they think my story is sad. I'm here to tell you that my story is not sad. 

What would be sad is if my stem cell transplant was in Miami. Oklahoma. 😉 but it's in Germany! 

Yes I wish things were different and I'm tired of being sick. Many times through the 10 years that I've been sick, I've wondered how I'm going to get through this season. But I have a God who promises to never leave me. Because I've constantly seen God's never ending faithfulness, even in times of uncertainty, I can look forward to seeing how God will continue to use this journey for His Glory! 

Because of Him, I can run the race with perseverance, even when I have no physical strength. His promises are true, and all of this pain is only temporary. This disease does not define my life. It's a huge part of my life right now, but my identity comes from God. Life is hard, but our bad days shouldn't define our lives. God is good, He is with us, and is our strength. Praise GOD because this disease and the sorrows of this world are temporary. Jesus over came the grave!!! His promises are eternal! 

My family and I can't express how grateful we are for each one of you. Over the last 10 years you have prayed for us and supported us in too many ways to count. We wish we could thank each of you individually but there's too many of you! What a great problem to have! 

You have been so generous and we are about $4,000 from our goal which is incredible! Thank you thank you thank you! 

Please keep praying!!!! We will be able text while we're there and have access to Internet so we will keep you updated. 

God is so good and I love you all 💚

Sunday, March 20, 2016

Stem Cell Transplant Using my own stem cells

My mom and I leave on Saturday to go to Germany for my stem cell transplant using my own stem cells. Tomorrow is the deadline for when we need to pay the clinic in Germany, so please consider sharing my GoFundMe page with anyone you think would be interested in donating or praying! Prayers are just as important! We will keep the GoFundMe going throughout my treatments in Germany. 

My family and I are so grateful for your continuous prayers and support in so many ways since I got sick 10 years ago. We will never be able to thank you enough. I wish I could thank you all individually but there's too many of you! What a great problem to have! Many times I've wondered how I'm going to get through this season. But because I've constantly seen God's never ending faithfulness, even in times of uncertainty, I can look forward to seeing how God will continue to use this journey for His Glory! One of my favorite verses is Psalm 73:26, "My flesh and my heart may fail, but GOD is the strength of my heart and my portion forever". Yes, Life is hard, but God is good, He is with us, and is our strength. Praise GOD because this disease and the sorrows of this world are temporary. His promises are eternal! 

Wednesday, March 2, 2016

GoFundMe for Stem Cell Transplant

Many of you have asked about donating to my stem cell transplant in Germany, so here's the link.

Please share this with those who you think would be interested in helping, either financially or by praying. The money needs to be raised by mid March to meet the clinic's requirements to start treatments on April 4th. 
Your prayers are just as appreciated! 

If you wish to share this on Facebook, you can go to the Pray for Victoria page (link below) and share from there, or just copy the link and post it yourself. Thank you so much for your prayers and support!!! We can't say thank you enough.

Thursday, February 25, 2016

Stem Cell Transplant in Germany

I've shared some of this information before but I have a lot of new friends who may not know this 😊 
For those who don't know, I've had Lyme Disease for about 10 years. 

Tomorrow, Feb 26th, is my 23rd birthday! I never thought that I would still be sick on my 23rd birthday, but God is so good and I have hope! Things are going to get better! 

"The Lord is my shepherd; I have all that I need. He lets me rest in green meadows;
he leads me beside peaceful streams.
He renews my strength. He guides me along right paths, bringing honor to his name.
EVEN WHEN I walk through the darkest valley, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me" -Psalm 23:1-4

I am officially scheduled to begin treatments for the Stem Cell Transplant in Germany on April 4th! They will use my own stem cells for the transplant. I'll explain more about the treatments and transplant in this post, but I first want to share a little of my story with Lyme Disease. 

Before I share part of my story, I want to tell you a couple of things. I want you to know that yes, this part of my story is hard, but my story is NOT sad. You shouldn't feel sorry for me. Yes, I wish things were different and I'm tired of being sick, but I have God who promises to never leave me. Because of Him, I have hope and I'm not giving up! God has carried me this far and He won't fail me now! My story is not a sad story because God is in control, He is faithful, His promises are true, and all of this pain is only temporary! 
I also want to tell you that this disease does not define my life. It's a huge part of my life right now, but my identity comes from God. 
God has something bigger planned for my life. Our stories are greater than what we can see right now. I can't tell you my story without telling you about God, The Ultimate Healer. Like one of my favorite songs says, "Oh to tell you my story is to tell of Him". 

Now onto the details. 

Why we're doing the Stem Cell Transplant, what I've already done, and what we hope this will accomplish-

My mom and dad have done so much research since I got sick. When I got sick about 10 years ago and no one knew what was wrong, my parents had to become like doctors to get me the care I needed. After 2-3 years of no real answers, they took me to a clinic in Nevada that several people from our church had gone to. My mom had actually been to that clinic a few years before I got sick because our friend needed treatments there and her husband couldn't go with her that time. That was such a blessing because she saw what they did at the clinic and learned a lot. That was not a coincidence, that was God. We live in Oklahoma, but my parents took me to the clinic in Nevada and I was diagnosed with Late Stage Lyme Disease and many co-infections on Dec 3, 2008. We were so happy for a diagnosis after years of no answers, but I don't think we fully realized the weight of that diagnosis. I thought that with a couple weeks of treatments that I would be better. 

As we quickly learned, there is no medical cure or standard treatment protocol for Late Stage Lyme, which also means that insurance won't cover any treatments for it. If Lyme is caught immediately, 99% of the time it is curable with a few weeks of antibiotics. 

"Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart."

Since there are no protocols for treatments, Lyme patients are left on their own to figure out what to do for treatments and treatments also depend on what each person can afford since insurance won't pay for it. I've traveled across the country for treatments, and soon will be going across the world to Germany. Most Lyme patients have to travel for treatments. 

Some people who have Lyme are on IV and oral antibiotics for years and years and years. I have done both oral and IV antibiotics and my body could not handle it. 
When the Lyme bacteria is killed, it causes a herx reaction. *see bottom for more info about a herx reaction*

When I couldn't handle the antibiotics and we learned more about Lyme, we decided to go the more natural route. The clinic in Nevada does mostly alternative treatments.
Instead of using antibiotics to kill the Lyme bacteria, the treatments I've done teach your immune system to recognize the Lyme (it hides from the immune system) and fight the Lyme itself. The treatments support your body while the immune system is "jump started" to recognize and kill the bacteria. These treatments still cause the herx reaction, but my body is better supported with the natural treatments. 

I have been doing treatments for about 7 and a half years now. Before I got the Lyme, I was so healthy. I had never had an ear infection, even as a kid.

Lyme Disease is not well known, even though it's becoming an epidemic. Lyme is so destructive, especially when it's not caught early, and I want to share how it's affected me and why I need the stem cell transplant now. 

Because I was misdiagnosed for 3 years, 
Lyme damaged every part of my body and every organ. 
Since I became sick with Lyme, I've been diagnosed with:
-Mono- that's when I first got sick. Lyme feels like arthritis and the flu. 
-Gastroparesis-stomach paralysis which causes constant nausea 
-Dysautonomia/POTS (Postural Orthostatic Tachycardia Syndrome) -autonomic nervous system dysfunction
-Heart problems- an arrhythmia has caused seizures and has caused my resting heart rate to always average around 130bpm, but it has gone as high as 180bpm or higher, even when I'm just laying down. 
-Stage 2 Kidney Disease- was just diagnosed with this a few months ago
-Interstitial Cystitis- also just diagnosed a few months ago. It's a painful bladder disease 
-Pain- joint pain, muscle pain, bone pain. Pain everywhere. Pain so severe that requires morphine 24/7
-Brain fog and concentration- the Lyme is in my brain too. When I first got sick, I couldn't even read my textbooks. My parents had to read them to me before I had to stop going to school because I was too sick 
-Memory loss- I have very few memories of life before I got sick. I still sometimes don't remember conversations or things I did a few days earlier. 
-Endometriosis- I've had 3 surgeries for this
-Ovarian Cysts- I had an orange sized cyst removed and have had many other cysts 
-Appendicitis- but my white count wasn't high, I didn't have a fever, so it almost ruptured. My immune system is so weak that it didn't know I had a horrible infection and all the tests were normal. I just had severe pain and was admitted to the hospital and then they did exploratory surgery and found my appendix fixing to rupture
-Gallbladder- stopped working so I had surgery to remove that, then 3 months later is when I had appendicitis and another surgery. 
-Weakness-I used to be bedridden and could barely walk 
-Insomnia- sometimes no amount of medicines can get me to sleep. Pain plays a role in not being able to sleep as well
-Constant Fever- I have a low grade fever all the time. 
-Numbness- my legs and arms go numb
-swollen lymph nodes everywhere 
-This list isn't everything of course, but these are some of the major things. 

Because of all of that and more, I've had to have:
-my heart shocked. After a 5 hour heart procedure last May, they had to shock my heart in the OR. 
-8 surgeries, 2 of them emergency surgeries
-I had a port in my chest for IVs for 4 years and I can even do my own IVs at home. 
-5 PICC lines. I'm fixing to have my 6th PICC line placed for the stem cell transplant. 
-A spinal tap
-Staph infection from my port that spread to my blood. This resulted in a week long hospital stay, emergency surgery to remove the port once I was stable, and then I got a PICC line and did IV antibiotics for about 7 weeks
-a couple of GI scopes with biopsies of my stomach and whole GI track
-a transesophageal echo (TEE). Instead of doing an ultrasound of your heart from the outside (called an echo), "the ultrasound probe is positioned on an endoscope, is guided down the patient's throat into the esophagus." I was totally awake for this and it was not pleasant. 
-So many ER trips. Before I got my first PICC line, I was in the ER at least 4 times a week for IV fluids, nausea medicine, and morphine. That went on for months. Even after being able to do IVs at home, I've ended up in the ER all the time for all the various problems.
-Countless hospitals stays and several days in the ICU 
-I used to do IV fluids at home almost every day for many years 
-Like I mentioned, I had seizures from a heart arrhythmia and couldn't drive for a year because of them 
-On December 1st, 2015, I had a 10 hour heart surgery to fix my heart! I had to be awake for the first 7 hours with nothing but Tylenol and local anesthesia. That was an interesting thing! It's rare that they do the surgery with the patient awake with only Tylenol. But I did it!!! GOD got me through it, along with the prayers of so many, and all the great doctors and nurses with me in the OR. I had 6 nurses and several cardiologists, plus a lot of extra people in there, and they all were so compassionate, knowing how hard it was for me. 
-I've seen almost every specialist because of it affecting every organ and body system 

In the fall of my sophomore year of high school, I had to stop going to school because I was bedridden and so sick. I'm proud to say that I finished high school on time from home! A teacher would come to my house and I would also do things online. I graduated on time, but I was in the ICU on the day of graduation so I wasn't able to attend. I decided to try and start college when I was supposed to, so I lived in the dorms at Oklahoma Christian University (about 8 min from our house) for my freshman and sophomore years and I only took about 2 classes a semester. The classes wore me out so I didn't get to participate in the social part of college. I also spent a lot of time at home while trying to live in the dorms. I should have graduated college last year, but I haven't taken a class in over a year because of the seizures and heart problems and heart surgery. I know I will be able to finish school later. 

All that to say, we do not take this decision to go to Germany lightly. For the last 7 years, I've done antibiotics and alternative treatments at many different clinics around the country. We have been going back and forth to the clinic in Nevada since I was diagnosed. We've spent months and months there since I was diagnosed in 2008. I've also done treatments in other locations. We have seen improvement with those treatments! The amount of Lyme in my body is less because of all those treatments! 

And while I've made progress, I'm still not well. My cardiologists, who are known worldwide and who did my heart surgery in December, said they believe that I have autoantibodies that are attacking my body. I was diagnosed with the kidney disease and bladder disease a week before my heart surgery after months of constant kidney infections. The bladder disease and kidney disease (my kidney function is lower than normal) are (most likely) caused by the autoantibodies. "Autoantibodies are antibodies (immune proteins) that mistakenly target and react with a person's own tissues or organs. Autoantibodies are usually just a sign of the disease, not the reason." So Lyme has caused my immune system to attack my organs. The cardiologists said that's what was happening with my heart. There was a line of abnormal cells in my heart which caused the arrhythmia. They were able to fix my arrhythmia in the 10 hour heart surgery in December! But, they said that it isn't a matter of IF the arrhythmia will come back, it's WHEN. As long as the autoantibodies are in my body, they will continue to attack my body, and they'll attack my heart in a new place, causing other heart problems. 

Like I mentioned, we have done countless treatments to get rid of the Lyme. 

One might ask, well if you've done so many years of treatments and the Lyme bacteria is mostly gone, why am I still so sick and why do I need the stem cell transplant? 

For 3 years this disease went undiagnosed, which means that it had 3 years to invade everything. 

I'm still having all of these problems because of all the damage that the Lyme did to my body and immune system. Yes, the bacteria load is better (it will never be 100% gone), but the treatments can't fix all of the damage. 

Most of the treatments available in the US are just to get rid of the Lyme bacteria from your body, which has to be done obviously. But people who had Lyme for years without being diagnosed find themselves still sick, even after all of the Lyme treatments. 

We have been looking at stem cells for a while now and we, along with all my doctors, feel like the stem cell transplant will be the turning point for me. Unfortunately, stem cells are not approved for Lyme in the US. 

About the actually stem cell transplant process-

The clinic in Germany mainly just treats cancer and Lyme Disease. A Duke Oncologist just came out and said that in the infectious disease category, Lyme is the equivalent to cancer. If you want to read about it, I'll post a link. My Lyme doctor in Nevada has started treating cancer too. 

This is a very simple description of stem cells! There are 2 types of stem cells: embryonic and somatic (or adult) stem cells. So everyone has somatic stem cells once they are born. Stem cells are just cells that don't have a specific purpose yet. It's a lot more complicated than that, but I didn't promise you a science lesson 😊

The estimated length of stay at the clinic is 2 weeks. When I get to the clinic, they will do all of their testing. They will then drive us an hour away to their lab where they will take out my stem cells. They will take the somatic, adult stem cells from my blood by just drawing blood like normal. They want it to be done at the lab so that they don't have to transport them. They will then take us back to the clinic. 

In the lab, once they separate the stem cells from my blood, they will then "clean" the stem cells to get rid of any infections or other bad things that circulate in the blood with the stem cells, so in my case they want to make sure no Lyme comes with the stem cells. Once the cells are as clean as possible, they will give them something to make them grow, and they will grow those cells into millions of new stem cells. The process of growing the stem cells takes about 10 days. 

While the stem cells grow, I will receive IV treatments every week day for the 2 weeks. Some of the treatments are similar to he natural treatments I've done in Nevada, but they also do a lot of other things. Some of the treatments will kill any bacteria in my body, some will help my body detox, some will help my organs, some will help circulation, some will help inflammation, some will help my lymph system, and I will get a lot of nutrients in my IVs. For each person, they use different treatments so I won't know exactly what I'll be doing until I get there and have testing done. 
Since they'll be killing the Lyme and other bacteria, I'll have a herx reaction, just like I do with other Lyme treatments. 

Something amazing that they do...I will receive injections that actually resets the immune system and it sets your immune system back by 10 years. I don't totally understand what exactly that means, but It's pretty incredible. I can't wait to hear all that I get to do! 

Once the stem cells have grown enough, 
they will inject JUST the NEW millions of stem cells into my body. They won't re-inject the ones they took from my body, just to make sure they aren't putting infection back into my body. They don't actually put the stem cells into my veins in an IV, they inject them where a flu shot would go. The reason for that is because that way, it goes into the lymph system and spreads throughout your body in the best way possible. 

The goal for this treatment is for the new stem cells to go into my body and repair all the damage caused by the Lyme bacteria. So since the stem cells don't have a specific purpose, they will go to whatever parts of my body need them the most. They can repair tissue, organs, it'll help my immune system, pain, and hopefully a lot of other things! We really need it to help my kidney disease, bladder disease, stomach paralysis (Gastroparesis), heart, auto immune problems, bone and joint pain, and many other things. 

Once I will receive the stem cells, about 2 weeks after being there, I will be able to come home! 

The first 100 days after the transplant are critical and I will need to take it easy. 

The transplant will most likely make me tired for a while. Each case is different and they can't tell me when I'll for sure start seeing results and feeling better. It can take 6 months to a year to see the full results from the transplant, but a lot happens in the first 100 days. 

I will be having my 6th PICC line placed on March 25, here in OKC. We don't know for sure when we are leaving for Germany, but we do know that I'm starting treatments April 4th. 

I am so grateful for this opportunity to go to Germany. I am nervous, but hopeful. Like I've said, we've done it all and are counting on this transplant to be the turning point. 

We have had people ask, and we are setting up a GoFundMe page for the Stem Cell Transplant since insurance won't cover anything and we have to pay for it all 2 weeks before we go. Thank you so much to those who want to donate. Your prayers and love mean just as much or more to us. If someone wishes to donate but not do it online, my church is taking donations for me so you can contact me if you wish to do that. 

I'm not shy in asking for prayers because God tells us to pray and He works in every situation, even if we can't see it at the time. 

So, will you please be praying about this who process?

Please pray that:
-the PICC line procedure will go well
-we can get the funds to pay for the transplant
-I handle traveling well
-that there are no complications with the stem cell transplant 
-the transplant does everything we hope for and more
-that God is glorified in this whole process

My favorite verse since getting sick is Psalm 73:26 "My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever". 

Nothing in this world is certain. But God is. 
He has never left me. I'm so blessed!
 "I can see a light that is coming for the heart that holds on, and there will be an end to these troubles, but until that day comes, STILL I will praise You, STILL I will praise You, You never let go, through the calm and through the storm"

Please share this and ask others to pray. It's time for a miracle after 10 years of being sick! No matter what, God is good! 

"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"

"I’m waiting on You, Lord
And I am hopeful
I’m waiting on You, Lord
Though it is painful
But patiently, I will wait

I will move ahead, bold and confident
Taking every step in obedience

While I’m waiting
I will serve You
While I’m waiting
I will worship
While I’m waiting
I will not faint
I’ll be running the race
Even while I wait"

*"The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough"

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!