Looking back, I’m convinced that God knew the exact time down to the minute I needed Dr. Redfield to call me.
He knew I desperately needed hope like never before.
But, I’m getting ahead of myself.
It was the week of Christmas 2018 when I was officially informed my Left Renal Vein Transposition had failed. Deep down, I’d already known that. My life was still far from normal & the symptoms were undeniable. But there was something about hearing those words spoken out loud by a trusted professional that made it click: my worst nightmare had become my reality.
Merry Christmas to me.
Apologetically, my surgeon informed me he was retiring so this would be our last visit. But I knew full well that even if he hadn’t been retiring, there wasn’t anything more he could do for me. I was now beyond the expertise of UVA’s vascular department.
I was promptly sent downstairs to an inexperienced, distant doctor who informed me my “only option” was a painful, temporary procedure that often causes more terrifying complications than it does successes. Oh, & I would have to be wide awake for the entire thing.
I walked out of UVA feeling physically & emotionally beaten to a pulp….
……but I also walked out of UVA knowing for the first time that Wisconsin was my next step.
In Chapter Sixteen I wrote a detailed blog post about the hand of God in our Wisconsin journey before it even really began. I shared about the program being put on hold indefinitely right before we were about to send my records, the two months of endless campaigning, the hundreds of letters written on my behalf, & the striking miracles God performed. It’s a crucial part of this story, & I would encourage you to read about it here: https://gracengrit.blog/2018/04/12/chapter-sixteen-grace-grit-gratitude/
But to refresh your memory, my parents learned about the auto-transplant program long before I did. This program is an absolute game-changer for those who battle severe Loin Pain Hematuria Syndrome like I did. The program is very unique, is composed of some of the very best doctors & specialists in the USA (& possibly the world) who have dedicated themselves to helping those who are in my position find relief, provides hope for those who have been told there is none, & offers a very promising chance of finding healing, or at the very least an improved quality of life.
But what is a kidney renal auto-transplant? I’m planning to go more into detail on this in another blog post, but for now I’ll share this: an auto-transplant is similar to a kidney transplant, but I was both the recipient & the donor. I would still have two kidneys, but they would both be in my right side. This meant another major surgery—my second in under a year—but the medical team was impeccable & it had an incredibly high success rate. We were confident this was the best next step for me.
Because Loin Pain Hematuria is so rare, there are very few treatments available, & we had exhausted all our options. We knew that UW was my best & possibly only shot.
I would be lying if I said it was easy to wait. But then again, I don’t think it’s ever easy to wait on God. 😉 I had never wanted anything so badly before in my entire life, & I wanted it immediately. But Jesus was still inviting me into a deeper healing. A healing that can never be stolen. A healing that was not fleeting, but one that would stick with me the rest of my life. A healing that would only continue to deepen my prayer life, increase my faith, & heighten my perception to the miracle.
Because grace always heals deeper.
& when I had learned to pray more fervently & constantly than I had ever prayed in my entire life, to seek God’s hand in the little things like never before, & to surrender to His plan for me instead of my plan for me….I got the call.
On May 9th, 2018 my amazing Mom & I started the long drive to Wisconsin. No, I wouldn’t be having the surgery on this visit. The purpose of this trip was to meet Dr. Redfield, undergo some tests, & most importantly, have the diagnostic that would determine whether or not I was even a candidate for the auto-transplant. It was a crucial trip, & nerves were abundant. We would be gone seven days….four days of travel & three days in Wisconsin. We were prepared for a tough trip. My symptoms had hit new heights in the past eight weeks, & we knew traveling would be incredibly difficult on my body. In fact, we weren’t even sure I would be able to make it there. Heck, I had a tough time just driving around town! But we proceeded forward in faith, trusting that God would give us exactly what we needed to make it there & back.
& you know what? The very first toll we hit, the car in front of us paid our toll.
Looking back, I think that was God’s way of showing us He had us in His hands from the very beginning.
& yeah, it definitely wasn’t an easy trip. My Mom had to drive the entire thing herself, & the travel was absolutely brutal on my body. Every morning I woke up incredibly ill, knowing I was in trouble. Due to the pain & nausea, I could hardly stay hydrated, much less eat. These two variables combined with throwing up meant I lost quite a bit of weight. In the seemingly unbearable moments, I would’ve given anything to go home. But despite her exhaustion from the drive, my sweet Momma always reminded me to just take things mile by mile.
So that’s what we did.
After two full, long days of travel we arrived safely in Madison, Wisconsin a full day ahead of schedule.
Yeah, Jesus certainly carried both of us mile by mile by His grace & strength alone.
After a full day to explore the area, rehydrate, & catch up on rest we headed into a packed day of consultations, tests, & the diagnostic procedure. On the drive, I’d gotten a call from the clinic to let me know I should plan on being at the hospital for twelve hours. In addition, I wouldn’t be allowed to eat or drink anything the entire day due to the nature of the tests. This meant in addition to my usual issues, I was guaranteed to be weak & dehydrated. Anxious, I prayed for a strength that surpassed all understanding as I walked into the facility.
If you’ve read my blog, you know I’ve had several traumatic health experiences & many complications. As a result, it made me really distrust the medical community & extremly apprehensive about going to doctors offices or hospitals. But as soon as I walked into UW, I knew this was where I was meant to be. By the end of the morning, I loved Wisconsin! I felt completely at ease there & genuniely trusted the nurses & doctors. Everyone was so kind & went above & beyond to ensure I was well cared for. I appreciated the way they clearly communicated exactly what they were going to do & explained it in a way that was easy to understand. The nurse practitioner actually gave me a “roadmap” that reminded me of giving a speech….it was definitely my language! 😉
In addition, everyone was actually very familiar with LPHS, NCS, & SMAS without any explanation! They quickly proved they truly are specialists in this department. My expectations were far exceeded. I was blown away.
By mid afternoon, it was time for my diagnostic….the lidocaine test. First, they would insert a camera through my groin to look around & ensure there was nothing out of the ordinary. Then, they would insert a catheter all the way up to my ureter & kidney. Through it, they would thoroughly coat the area with numbing lidocaine. This simulated how my body would feel without a ureter or a kidney in the left side, thus determining if the surgery would be truly beneficial for me. The idea was if woke up with pain, I likely wouldn’t be a candidate for the auto-transplant. But if I woke up pain-free, I was almost guaranteed the surgery. It was a big test, & everything in me not only wanted but needed to pass it.
After checking in at the front desk, I was informed I needed to report to pre-op. No, it wasn’t necessarily a surgical procedure. However, it was an invasive one that would need to take place in an OR under anesthesia.
…..& that’s when my nerves spiked.
Because even though I was abundantly thankful I was going to be knocked out for the whole ordeal, I wasn’t emotionally prepared to be in pre-op or an OR again. I wasn’t prepared to be hit by a wave of memories.
I remembered sitting in the waiting room with my parents anxiously waiting to be called back to be prepped for my Left Renal Vein Transposition. I remembered putting on the sterile gown, socks, & hairnet. I remembered getting the IVs placed, talking with the nurses, & meeting each member of the surgical team. I remembered the paralyzing fear I felt as I waited to be wheeled into surgery. I remembered trying not to cry so I could be strong for my parents. I remembered seeing the cold operating room for the first time & the scary tools on the table. I remembered it all.
But yet, everything felt different in the best sort of way. & when the kind, smiling nurses came back to wheel me to the OR, I felt an odd, inexplicable peace that surpassed all understanding. & as I discussed the news with the anesthesiologist I had a feeling everything was going to be okay.
The next thing I remember is waking up in post-op. I was groggy & confused of my whereabouts, but completely painfree.
Overwhelmed, I started to cry. Immediately, everyone was concerned something was wrong, but it was because for the first time in almost two years, I didn’t have an ounce of pain. They were tears of joy.
That evening I ate a full meal, walked without hunching over, & had my best night of sleep in years. We woke up early the next morning & headed back to UW for my scheduled CT scan & consultation with Dr. Redfield to find out whether or not they would offer me the surgery. I admit, I was anxious of the unknown, unsure of what this day would hold.
But as He had always been, God was oh so present in every detail of that day from the very beginning.
It was around 7:45am, & I was still pain free. I had just been taken back to the CT scan waiting area to drink my required gallon of water (yes, an actual gallon) & get my IV placed. It was just me, a woman, & her husband in the waiting room.
Out of the corner of my eye, I noticed the man pull out a Bible & begin talking with his wife about his ideas for the Bible study lesson he was going to teach that Wedsnesday evening. It was a beautiful Bible. I don’t think I even realized I was saying the words out loud, (I’m not super brave with that kinda thing) but I complimented him on it. They smiled at me & started telling me about how they spent hours together tediously placing tabs & such. I loved their idea & told them I would love to do that with my Bible someday as well.
After that, I didn’t say anything else so I wouldn’t bother them too much, but then he offered to read the Bible out loud so I could hear it too.
Wow. I see you, Lord.
There was no adequate words to describe what a divine God moment that was for me. It was a perfectly timed reminder of His presence in every aspect of this journey. An amazing reminder of His promises as I was about to go into another long, scary day.
As I walked into Dr. Redfield’s office the next morning, I was sure of two things. One, that Jesus is ever so faithful. & two, that I had lived twelve glorious hours completely pain free, & now I was ready to live the rest of my life pain free….whatever it took.