A Year of Mess and Miracles

Spoiler alert: This story has a happy ending. A way happier ending than I could have ever written. In fact, this is the complete opposite of the story I thought would one day be told. I always knew this story would be shared eventually, but truthfully, I always imagined that it would be someone else telling the story of how I died. But it isn’t. Its me sharing the story of how I lived. This is not the ending I was prepared for, and I’m still processing that deeply and painfully. But nothing compares to the gratitude I feel. I am so thankful that, for once, I was wrong. It truly is a gift to be aliveSo that being said,
here is the story of my miracle:

At the beginning of 2018, I was given the opportunity to receive a spinal cord stimulator implant to treat my severe Complex Regional Pain Syndrome. I had been fighting my insurance company for months on end, anxiously waiting for approval. On February 7, I had surgery to place a temporary SCS trial, to make sure that the treatment was effective before doing a more invasive surgery for a permanent implant. After 7 days of virtually pain free bliss, it was determined that my trial was effective enough for a permanent implant.

I was told that March 14, 2018 would be the day that my life would change forever. I thought THIS was the miracle I had been waiting for, and for a day or two, it seemed like I was right. I had zero complications during or immediately after the surgery, and I went home that day with a 100% effective stimulator. I had no feeling (aka no pain!!) from my ribs down, exactly as we had hoped.

Miracles all around, right?

But then slowly it seemed like that miracle was turning into a nightmare. I hadn’t really been able to eat since the surgery. At first we thought it was just normal recovery from major surgery and major painkillers, but day after day I vomited everything I put in my mouth. I had no nutrition in my body, and on day 9 post op, I couldn’t even stand on my own two feet. I found myself alone in the Emergency Room late that night. I assumed I would just need a few liters of fluid to rehydrate and nourish my body, and a few doses of Zofran to end the nausea once and for all. I knew I was wrong when they kept coming in to take more blood. Something wasn’t normal. I soon found out that my kidneys were slowly failing and my body was in metabolic acidosis – my blood was completely acidic, toxic to my body. I was admitted for three days on a sodium bicarbonate pump, with a fun potassium crash thrown in for good measure. My body was a wreck.

Upon being discharged, I was still unable to eat without medication to stimulate my stomach to digest. It was as if my stomach was suddenly paralyzed, and nobody could tell me why. My pain management doctor, the one who implanted my SCS, told me that it was merely a coincidence that my stomach became paralyzed the same day he implanted the device into my spine.

I believed him. Why wouldn’t I?

Despite a few extra pills each day, my life moved on. I thought I had made it through the worst of the storm, and things could only go up. They certainly couldn’t get much worse. I rebuilt from the ground up – I reenrolled in school, I started a new job, I started going out with friends again. Things were certainly hard and different, but I was still pain free thanks to my stimulator, so I was endlessly thankful.

Of course, all of that crashed and burned again in the middle of June – only 3 months after the surgery.

In the most confusing and devastating ways, it was discovered that the stimulator in me had completely malfunctioned. It needed to be removed, and a new one implanted.

Why?

Because they were implanted incorrectly the first time. Nothing was anchored, the leads were out of place, and that cant be corrected without surgery. Remember my paralyzed stomach? Yeah, it wasn’t a coincidence. The stimulation had been covering my internal organs – obviously, not good.

The next several weeks were the most heartbreaking blur of my life. Every day I was on the phone with my doctor’s staff, the insurance, or my caseworker. If I thought it was hard to get this surgery approved the first time, then nothing would prepare me for the insurance battle the second time. The insurance wanted nothing to do with this. They paid for this very expensive surgery less than 4 months prior, why would they want to pay for it again? It wasn’t their fault that the first surgery was botched. They denied the claims endlessly, and I ran out of options.

My caseworker called me for a final time the morning of August 27. She told me it was over. There was nothing she could do anymore. The insurance company’s decision was final: I was not worth the cost of saving.

I was a case number with a price tag… not a human with a name.

That night was the lowest of my entire life. I knew that I wouldn’t make it without this surgery. I had absolutely no hope left and honestly, no desire to advocate or fight for myself at all. It was easier for me to assume that the insurance was right – my life was not worth saving. At this point, I knew that no matter what I would be dropping out of school, and probably losing my life in one way or another. There just didn’t seem to be any other option.

But by the next morning, there was another option – a complete miracle.

I got a text from a friend that morning while I was picking up breakfast at Panera. This wasn’t just any random friend, but one who means a lot to me and knows me and cares for me better than anyone. She has a lot of qualities and experiences that I benefit greatly from every single day, but there’s also one thing she has that legitimately saved my life that day: a dad who is the kind of doctor that treats my disease and does the surgery I need.

Without telling me, she had shared my situation with him and asked him if he could pull off a miracle and save my life.

He said yes.

I was being handed a literal miracle as a gift, with a perfect bow on top. And yet, I was still full of fear and doubt. How could this be real? What does this even look like? If I accept this gift – that means travelling and surgery and recovery, none of which is fun for me. If I turn this down – it likely means certain death. I never thought “life and death” situations were real. I thought they were just made up plot points to add drama to books and movies.

I chose life that day.

A few days later, I was sitting in his office in Abilene, 4 hours from where I live. He showed me my leads on the fluoroscope and confirmed that this busted stimulator was the cause of all my problems, and that he would be more than happy to fix it… at no cost to me.

A nearly $600,000 surgery, completely pro bono.

(Disclaimer: because he and his staff are way better than any of my previous doctors, they were ultimately able to get insurance approval for me in time for the surgery – but with this miracle story, it was the thought that counts)

A few weeks later, on September 24, my friend brought me back to Abilene and it was time for the surgery to be done – correctly, and for a final time. Because her own dad was my doctor, she got to stay with me the entire time, including in the OR. The surgery went perfectly, and everyone says that the device taken out of me was clearly not ideal – it was massive and just not done correctly. There was a ton of scar tissue in my spine, but everything went in flawlessly and all I’m left with is two perfectly imperfect scars.

Exactly 1 year after my botched surgery, and 6 months after my final miracle surgery, I have a perfectly functioning stimulator and virtually no feeling in my lower body.

This whole experience was overwhelmingly healing for me in many more ways than I originally anticipated. I have massive amounts of medical trauma, mostly stemming from an abusive doctor that performed 5 surgeries on me when I was only 13 years old. To be able to feel safe in an OR for the first time in my life was such a gift, and I couldn’t be more thankful for that. Knowing that there are doctors out there that care for patients as humans, and not just case numbers, has completely changed my perspective.

The entire process of receiving and accepting this miracle was a beautiful illustration of the mysterious ways that God works, and how He will literally take me to the ends of the Earth (or just to Abilene…) to show me how much I’m worth to Him and the people that love me.

I realized shortly after this final surgery that this whole journey was always intended to end like this. Both of my implant surgeries served a purpose – the first one showed me that my pain could be healed. The second surgery showed me that my heart could be healed.

Healing is an ongoing process, and I still have a ways to go. But now that I’ve made it this far, I couldn’t be more thankful for where I’ve been.

Thankful for my miracle.

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