Nicole's Health Journey - The Diagnosis

Happy Mother's Day

 Nicole Boynton receiving a dose of Rituxan or Rituximab treatment for Wegener's autoimmune disease.

Mother’s Day 2017. Late the night before, I drove with my mom to pick up my grandmother from the airport. I clearly remember asking my mom, “Do you ever feel like something isn’t quite right inside your body?” I’d been experiencing side pain all day - almost like that feeling you get when you’re running and can’t catch a breath. I powered through the day into bedtime and tossed and turned all.night.long. At one point, I almost woke up my husband to have him take me to the ER…I googled “appendicitis” at multiple points in the middle of the night. I treated it like labor and told myself if I could go back to sleep, I’d be okay. 

And okay-ish, I was. I woke up on Mother’s Day to my sweet girls in my room ready to hit the road with Daddy to find breakfast tacos and coffee to celebrate Mommy. My husband was NOT okay with the kind of night I had nor the fact that I seemed unconcerned in the morning. The pain had dulled but was still present. He desperately wanted me to go see a doctor, but I refused. Fun fact: I like to people please, but I’m also VERY stubborn. I told them to go do their errands - I wanted to shower to see if I could feel normal. Thinking back, I remember wanting to shower and do my hair in case I had to go to the hospital for an appendectomy. Priorities, right? 

My people returned with tacos and coffee. I didn’t even feel like eating, but I tried. I knew when I couldn’t even stomach a few bites of my favorite cinnamon roll pancake that something was wrong. I wanted SO hard for everything to be okay. Deep down, I knew something was going on, but just didn’t want to face it - to leave my girls and go see what was causing all this pain. Scott and I exchanged some heated words, and I finally decided to go to the ER clinic. 

ER Clinic Visit Cut Short

We dropped the girls at my in-laws’ house and headed to a local place. The waiting room was empty and cold. I remember thinking this was such a crappy way to spend Mother’s Day - not with my kids and not somewhere fun…. I was so annoyed and fairly certain we’d be leaving in an hour with a lecture on dehydration or something like that. 

Blood work. Urine Sample. (Little did I know these would become part of my new normal all too soon.) They called for imaging since I was complaining of “flank pain”. I was significantly dehydrated so up goes an IV bag full of fluid. It was SO COLD. The room got even colder as the IV fluid drained into my veins. My sweet mom showed up out of nowhere to sit and be with us. The side pain continued and began to worsen. They hit me with some morphine, and I drifted off into a hazy nap. 

Eventually, the doctor visits, looks at my back and decides I’m having muscle spasms causing the flank pain. They’ll get me hydrated and send me home with some muscle relaxers. My hazy nap continued but is interrupted once again when the doctor returned with different news. 

Your kidney function is that of an 80-year-old.

“Your kidney function is that of an 80 year old.” What does that even mean? He assured me it’s very serious. I also had large amounts of blood and protein in my urine. What does THAT mean? He couldn’t explain the flank pain now…it was not a muscle spasm, and I must go to the hospital. NOW. In an ambulance. The morphine migraine set in right around this time, so I could barely keep my eyes open or try to argue. They wheeled me down the hall and straight into an ambulance. No lights on and no sirens, but I’m IN AN AMBULANCE ON MOTHER’S DAY. The migraine was blinding and nauseating. The kind EMT tried so hard to make conversation. I learned I was riding in a European style ambulance - they’re apparently not as bulky. 

The Hospital Stay

 Nicole Boynton in the hospital during her diagnosis of Wegener's/GPA along with chronic kidney disease.

I don’t even remember arriving at the hospital. My first clear memory from the hospital was hearing “114” called out for my weight - apparently, the bed was a super fancy bed with a built in scale. Who doesn’t want that? When I heard that number, my heart sank. I hadn’t weighed that since high school - my body was clearly not okay. My memory is still foggy at this point thanks to that pounding migraine. As meds set in to help the pain, I remember the on-call doc coming in to ask a bunch of questions. We answer: chronic cough, frequent nosebleeds, extreme fatigue, joint pain, sudden weight loss (of which I was unaware)…He tells us they pulled some preliminary blood work for several conditions, one being something called Wegener’s. Restless sleep came and went - I awoke in the morning to a new on-call doc and a nephrologist in my room. 

My blood work came back with positive markers for some form of vasculitis. A kidney biopsy was necessary to confirm diagnosis. In the meantime, I’d broken out in a rash on my torso - right where my flank pain originated. The pain remained and now the rash was sensitive to the touch. After examination, it was clear this pain was SHINGLES. My body was in such distress it had broken out in shingles right over my kidney area…I had multiple docs tell me to “Thank God” for the shingles, otherwise I would have gone into kidney failure not too long after this. 

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The kidney biopsy came and went. I spent a sleepless night on my back hoping not to cause unnecessary internal bleeding after the biopsy. It was a long night. Results would come in 24 or so hours. I was STILL in the hospital. I couldn’t go home. I couldn’t see my babies. I had the shingles, so my babies couldn’t visit me. I’m also stuck in what we affectionately called “the hole”. For some reason, the hospital was crowded at this time, so I was still in the room they put me in from the ambulance. No windows. No natural light. And two extra chairs pushed together. They adhered a lovely window mural sticker to the wall to make it feel like a beach. Ha.

The Official Diagnosis

“ANCA positive pauci immune necrotizing glomerulonephritis.” THAT was my official diagnosis. It was described to us as a relative to Wegener’s/GPA but not exactly the same. Essentially, my body was attacking my kidneys, and around 60% of my kidney function was gone without hope to regenerate the scarred tissue. 

Heavy steroids started in my IV. Then the discussion of other medications started with a question: “Do you have kids?” We told the doctor we have 2 girls, and he said, “Good.” The realization quickly set in that he was about to tell me I shouldn’t have anymore children. More on this later.

I had two options for medication, both considered forms of “chemotherapy” - one more toxic than the other but had also been in use much longer. We both agreed on the newer medicine which is administered via infusion. I’d have 6 doses within 6 weeks then another dose every 6 months for the next 2 years. In addition, I’d be on steroids indefinitely. 

My hospital stay continued - I was finally deemed a hazard due to the shingles and was quarantined to “the hole”. I could leave to use the bathroom down the hall. Yay. My second to last night during my stay, I was moved up a room with a big beautiful REAL window! I was given a sleeping pill - the high doses of steroids make you amped - and drifted off to sleep. 

The Treatments Begin

 Nicole Boynton receiving her first dose of Rituximab as treatment for Wegener's autoimmune disease.
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My first infusion was the next morning. This particular medicine can cause severe allergic reactions, so it has to be administered with IV Benadryl and dosed VERY slowly. I’ve never experienced anything quite like that IV Benadryl hitting my veins - instant fuzzy vision and instant nap. My blood pressure is high anyway thanks to my low kidney function, so it was monitored like a hawk during the infusion.

I’ll never forget the sweet nurse who pressed a guardian angel coin into my hand as the infusion started. I held it on my lap during my Benadryl nap and prayed for the meds to do their job with minimal side effects. Thankfully, all went well and I stayed just one more night - with one more sleeping pill - to be monitored. 

Home Sweet Home

FINALLY. I was released to go home. I hadn’t hugged my babies in DAYS, and I wanted to be Mama again. Re-entry at home was a bit tough. The girls were 1 and 3 years old - it’s hard to explain Mommy’s black and blue arm veins and why she’s been gone for a week. I had to find a new normal of when to take my pills: blood pressure pill and steroids every day like clockwork. The doctor told me to call him ASAP if I felt any signs of fever or an infection. My infusions suppress my immune system, so I was very susceptible to germs. 

I remember feeling like an alien in my own house. People had been visiting me, taking care of my kids, cleaning my house, setting up meal calendars - the world was moving and going on while I sat and felt stuck. Stuck with a new label - a new diagnosis that was quickly changing life as I knew it. No, it’s not cancer - no it’s not a terminal illness (it would have been 50 years ago), but it’s still life changing and shocking. I was (and to be honest, am still) angry - angry that so much had to change - angry that now I must rely on pharmaceuticals and doctors. My anger is slowly morphing into general frustration and also a sense of gratitude. It’s been a little over a year since this crazy week in the hospital, and I’ve learned so much about myself and the future with an autoimmune disease. Stay tuned for parts 2 and 3 of my story.