Transformed By My Struggle...
Seven- years ago, during what was diagnosed as "asthmatic bronchitis" but was actually Coxsackie B virus, I suddenly developed a life-threatening cardiac disorder.
With only minimal heart function, I needed an immediate Transplant. Due to changes that came with the Affordable Care Act, I was not eligible for the Transplant List.
My husband was told to “Take her home. Make her comfortable. Get Her Affairs in order.”
The doctors had no answers.
We were literally out of options.
Usually optimistic I was discouraged.
Though I had many around me, I felt totally alone.
The only light at the end of this tunnel seemed to be those of the train headed right at me.
Like most people, when there seemed no other way out, I did what I should do with my life every day; I put it in the hands of God.
His answer came rather quickly.
Just in the nick of time.
With no promises no expectations, and no other options, an experimental Complex Cardiac Device was implanted in my heart.
Very quickly it took over my heart's electrical functions decimated by the Virus. (Most often reserved for the Preschool set, Coxsackie B can be deadly in adults.)
Against all odds, and to the amazement of the doctors, my heart once again began to pump oxygenated blood through my body.
The troubles did not end there.
They became more complicated.
That first year I spent more time in the ICU and Telemetry than I did at home.
I went into kidney failure twice from adverse reactions to diuretics.
Then came multiple admissions for critical dehydration, again from diuretics.
Gallons of Potassium, which burns terribly, then magnesium was pumped into my veins. Over and over again.
I spent most of the first three years after I got sick in the hospital. Seven months without properly oxygenated blood flow left every organ in my body with "complications."
I had more diagnoses "...than Carter has Liver Pills."
While we thought the low point was the day of my diagnosis; it was not.
That came more than a year later.
It came nine months after the experimental Medtronic Viiva Quad S CRT-D had been implanted and miraculously got my heart pumping again.
It came. the morning my husband found me unresponsive.
Unlike our usual routine, when he’d put me in the car and drive me the five miles to the ER — this time he called the Paramedics.
On the way to the hospital, I went into Sudden Cardiac Arrest.
I was resuscitated multiple times that day before I was finally stable enough to be moved to the ICU. (btw ... Did you know that of the hundreds of thousands of people struck down by a cardiac disease or disorder outside a hospital less than 10% survive? Had I not been with the Medics when my heart "ground to a halt," I most likely would have died.)
Ten days after my SCA I was stable enough to be moved from our local hospital's ICU to the ICU at Tampa General Hospital so my Cardiac Electrophysiologist could find a way to correct the latest issues-- Atrial Fibrillation (aka AFib) and Atrial Flutter, and the GranDaddy of them all--Supraventricular Tachycardia. (The Medtronic "Quad" in my chest recorded every moment. Inch by inch. Millisecond by millisecond.)
While the multiple arrhythmias that sent me into Sudden Cardiac Arrest were calmed down. my heart had settled into a rhythm the Cardiac Team described as being “Incompatible with life.”
After three weeks of living in the fishbowl that is ICU, I was stable enough for the Science Fiction like process called Cardiac Ablation Surgery.
While I was under general anesthesia the nerve pathways in my heart were mapped out and tested. The ones causing the trouble, that had sent me into cardiac arrest, were burned so the mixed-up signals could no longer get through. I woke up feeling like a herd of elephants had been dancing on my chest. I later found out the pain was because of the number of times they had stopped and started my heart during the procedure. Cardiac Ablation is basically "Control-Alt-Delete" for the heart.
Once again declared a miracle, I went home the next day. wondering how long this "fix" might last.
Between hospital stays our house was a hub of nurses, therapists, and other healthcare professionals.
At one point, each of my organs had its own specialist.
Each body system its own treatment team.
My team was put together by God through my Primary Care Physician who served as the Leader of my Treatment Team aka “The Ringmaster.”
The time, dedication, commitment these people put into keeping me alive was nothing short of a miracle.
I hadn’t had an easy life.
I’d always been able to handle stuff; to handle pain.
To hold onto my faith that everything happens for a reason.
To stay optimistic.
If I saw a purpose in it.
If I saw God’s hands in it.
No matter how many times I was knocked down, I got up, dusted myself off and kept going.
Pain changes you.
Being chronically critically ill changes you more than I could have imagined.
It didn’t leave us where we started.
It picked me up and took me places a person would never have gone willingly.
It showed me levels of fear, of trust, of faith I never imagined, could exist.
Regardless of any physical healing, I was fundamentally changed.
You either become better or you become bitter.
But you will never again be the same person you were before you got sick.
For the first time in my life, though grateful to have been given more time, I saw no purpose in the battle.
I saw no purpose in my life.
I saw no reason to keep getting up.
I lost my optimism. I almost lost my Faith.
With an immune system battered by illness and the treatments, most of my time was spent in what I referred to as “Modified House Arrest.”
Twenty-four hours is a long day when you are chronically ill and have to remain housebound.
You can only watch so much television and read so many books.
I decided to begin an intensive online Bible Study.
Along with reading the Scripture and discussing it with people of faith from throughout the world, I spent many hours talking to God.
Telling Him how I felt.
Arguing with Him.
Yelling at Him.
Crying out to Him.
And finally… Surrendering to Him.
Growing up my Dad had a saying that stuck with me… “When you can no longer think of a reason to go on…You need to come up with a reason to Start Over.”
While I had no idea why I knew it was time to Start Over.
One morning, I listened to a sermon entitled “Let your troubles transform you.”
Considering my medical situation the message was quite relevant:
Don’t waste your pain.
Don’t hide your pain.
Let God heal it.
Let God recycle it.
Let God use it to bless others.
The Preacher clearly believed that If we let Him, God uses our pain to help others.
In Bible Study, on television, in the music, I listened to, and online sermons I used as “background noise,” the message I was hearing began to echo those of the Sermon —
Use your Troubles to Transform your life.
“Each of us is designed by God for a Specific Mission.”
There had been a time where my life was centered around helping others escape the traps life can set for us. These days I barely left the house other than to go to a doctor’s office or back into the Hospital.
“You have a Mission that no one else can accomplish.”
Between spinal injuries, I suffered years before, and the Cardiac Issues I was facing, I could barely walk.
What did I have to give?
“God has a plan for you.”
I couldn’t even cook dinner for my husband.
What use could I be?
“Everything in life has Spiritual Significance.”
Did the preacher mean that God had a hand in my current condition?
Some loving God He was.
My physical battles and pain were about the only things I had in excess.
There were times I was so overwhelmed, so weakened from the physical battles that never seemed to end, that I found it difficult to even get out of bed.
Throughout the Scriptures, we are reminded that there is pain, pressure, difficulty in everyone’s life.
Everyone goes through tough times.
Everyone has failures.
Everyone experiences pain.
Everyone faces tragedy.
No one goes through life without problems.
No one goes through unbroken.
There is pain, pressure, and difficulty in everyone’s life
God assures us that resistance, resilience, determination; the ability to bounce back no matter how bad things get is about perspective.
It’s all in the way we look at things.
The Disciples of Jesus believed that everything that happened to them on earth was meant to prepare them for what would come next.
That no matter how tough the problems (and they faced some rough ones) they are temporary and nothing compared to the troubles that faced Jesus when He walked the earth.
I began to think that maybe there was some way I could be of use again.
I was still breathing.
My heart was still beating.
Maybe there was a way I could serve.
Maybe I would try to start living again.
Slowly and quietly (at first) I began to reach out online to others dealing with issues related to serious illness — to patients as well as their family and friends.
Soon I found myself fielding questions from Cardiac patients around the world.
They wrote that my story brought them hope.
Their stories touched my life more than I could have imagined possible.
God brought each of them into my life at just the right time.
They brought me Healing.
They brought me Gratitude.
God began to use my writing to transform me.
I began to see His fingerprints all over my struggle.
God used them to bring me closer to Him.
God used them to help me begin to grow into a servant.
God used them to bring His message of comfort to others.
God used it to deepen my fellowship with other believers.
God used it to provide a platform for my testimony to His Grace.
God used my battle and the struggles of others to show me my purpose.
Eventually, I began to listen.
Through those He sent my way, I began to understand the Mission He has for me.
Rather than focusing on my pain, my feelings, on how sick I was;
God had me focus on helping others.
Helping them find information and resources.
Showing that there is always Hope.
Bringing His comfort.
- I began to volunteer with the American Heart Association/American Stroke Association.
- I write and my writings are published by multiple websites as well as several Social Media Platforms and digital publications.
- I write to better understand my journey.
- I write to help others believe that there is reason to keep fighting when all you want to do is give up.
- I write to address issues related to living with serious Chronic Illness.
- I speak with researchers and journalists. I answer their questions, educate them about the importance of their work.
- I share the miracle of my survival and the blessings I have received from so many others who take the time to share their struggles with me
- I discuss what it’s like to be part of an international experiment.
- I describe what life is like for people who live with complex cardiac diseases and disorders. Those of us who never know what tomorrow will bring.
- Most important of all, I write about what life is like for the parents, siblings, family, and friends who fight the battle right alongside the patient.
My writing is now carried on multiple websites, Social Media Pages, and in several Digital publications.
I am nearing 20,000 Facebook Followers. The interviews are published both online and in newspapers around the world. I will soon publish my first book. It's a Reflective Journal (I Am Enough) designed for those living with chronic illness and/or other disabilities.
I believe that I can handle anything if I see a purpose.
If I see God’s hands in the mix.
Life, especially for a Christian, is not about luck or fate.
God is pulling the strings.
He has a plan for everything.
His plan decided for each one of us long before we reached the earth.
God is quite adept at getting his message out.
I am humbled to be a small part of his witness.
God’s plan for my life involves all that has happened and all that will happen to me-- including my heart failing.
Once again He is helping me grow through adversity.
God helped me become better rather than bitter.
God uses my story as witness to the world of His ongoing presence. To demonstrate the relevancy of His miracles.
God uses my deepest pain to bring hope to the weary.
He comforts me so I can be of comfort to others.
God has used this struggle to make me more. More compassionate, more passionate, more sensitive, more loving, more patient, more gentle, more responsible… Basically more human.
God used the struggle to transform my life.
As usual, God is making good out of bad.
Next week is the Seventh Anniversary of my initial admission to ICU. In a few months, my Quad which was approved by the FDA two years after it saved my life and remains the “Cadillac” of CRT-D’s) will run out of battery power. This device, like most CRT's, was not designed to have its batteries changed,
It will have to be replaced.
We are discussing replacement options.
God is still using me to deliver his message of Hope and Faith. While I am no longer a “Chronically Critical Patient, my EF is,60%, BNP under 50 my health remains fragile. But I'm still walking the halls.
"Kicking Ass and Takin Names."
Isn't it A Great Day To Be Alive?”