When I was still a teenager, I had my first rheumatology appointment. In grade 11, I started noticing that my fingers had painful bumps on them and would turn white and go numb whenever I held something cold (like a slurpee - those things were gold), or they’d go red and burn like fire during dance class. I was quickly diagnosed with Raynaud’s phenomenon and perniosis. I was told that because the problem was aesthetic (not actually true), I’d just have to get used to it and I had a 25% chance of developing lupus in the future.
I remember going home and looking up the “disease with a thousand faces” only to find more questions rather than answers! My mom and I cried while we watched America’s Next Top Model as one of the girls had lupus and was too tired to go to the photo shoot so she got kicked off. Would this be my life? Would I have to let go of all my future aspirations because I’d be too tired and spend my days sleeping? It sounded horrible. And confusing.
I pushed the thought to the back of my mind and continued on with life now on meds. I started calcium channel blockers which helped temporarily, but then the blood clots would re-develop in my fingers just the same as if I never took the medicine at all. About a year after my diagnosis and many different opinions, I found a great doctor who worked on improving my circulation through acupuncture and pressure points. The bumps would come and go (usually with stress) but overall, it was such an effective treatment that I didn’t even have any blood clots for my wedding pictures 2 years later!
During this season of life, I prayed A LOT for healing. Oh Lord, please take this thorn from my side. I didn’t understand why this was happening to me. Was it because of past sin? (No, I know “bad things” don’t happen as “punishment” from God), was it because I needed to learn something from it? (I did a ton of self reflecting to see if I could learn any life lessons as fast as possible so this could be over and done with), was this the only way I would be close to God? (but I love God and I know I always will whether or not I’m going through tough times).
So when the ICU doctor at Lions Gate Hospital questioned me about my past, he put some of these pieces together - Raynaud’s, perniosis, hypothyroidism, heart failure - and ran some tests for lupus. I didn’t know it then and it would take 8 more days for those tests to come back (see part one of my heart failure story here).
I was now on my way to the CICU (cardiac intensive care unit) at St. Paul’s. I remember the drive in the ALS ambulance and wishing I could see the beautiful Christmas lights that lined the Lions Gate Bridge. When I arrived, the team was quite worried about me (“we were THIS close to putting you on life support!” I was told) and that lead to a pretty traumatic arrival. I mourned the gentle touch of the Lions Gate staff as I was pulled and pushed around by way too many nurses around my bed, ripping off blankets that pulled at lines they didn’t know were there. My neck was cramping from the positioning but my arms were strapped down so all I could do was cry out in pain. I’ll never forget looking up to see the nurse at the foot of my bed chewing gum. I would’ve given anything to leave in that moment.
My O2 was low enough to get the “Darth Vader” mask. It covered my whole face and the moisture that poured out two blue tubes was almost suffocating. My first night nurse was brutal; she shined the flashlight in her own eyes ‘to check’ so I thought she was pretty dumb. I hated St. Paul’s instantly from my first impression. This was a nightmare.
In the morning, it was a new day and thankfully a new nurse. I was even going to get my heart pic line out (the ‘pig tail’ they put in to drain the fluid from around my heart)! The doctor said it was going to be fine. But when he pulled that thing out - oh man. It was a 10 out of 10. No joke. My teeth were clenched so hard I thought they might start popping out! It took a little bit for them to figure out what medicine they could give me and they apologized saying “we’ve never done this on a conscious patient before”. I replied “next time, give the drugs first”.
That hurt a lot.
In the CICU, the medicine they gave me worked wonders to strengthen my heart. I didn’t need a heart transplant or even a pacemaker! Praise the Lord.
I was moved to a private room with a beautiful window view and I would spend the days sleeping, listening to sermons, and reading my bible. I went from not being able to sit up on my own or bend my legs to starting to walk a bit back and forth in my little room. I even got to wash my hair with a special hair bag. Things were slowly improving and I would be moving up to the regular heart ward after only 3 days. It was a miracle, actually. God was healing my heart and he was doing it fast.
During my 5 days up in the cardiac ward, the doctors ran a ton of tests to try to find out what caused my heart failure. My heart biopsy came back that it was not caused from a virus like they originally hypothesized (yeah, you read that right - having a heart biopsy was weird. But now that you know me a little better, I’m sure you’re not surprised that I was singing “Kickstart My Heart” to the cardiologist in the operating room). So what caused it?
Every day, the team of doctors would make their rounds and explain to me what they were doing to help me and how things were going. I felt like quite the heart expert myself! I felt totally in the loop and I appreciated so much that I had the best of the best at St. Paul’s (first impressions are not always lasting impressions). But on the 2nd to last day of my stay, a different doctor came by and said “Okay, you have lupus, goodbye.”
But not exactly those words. It sort of felt like that, though!
I was so caught off guard, I didn’t have time to be educated about what lupus was the way I was educated about my heart! So I took a breath and remembered that time I was a teenager and was warned about this. Okay. Lay it on me.
The doctor explained to me that I fit the criteria for a lupus diagnosis and I’d have to take medicine (hydroxychloroquine) basically forever to help suppress my overactive immune system. They couldn’t prove what caused my heart failure, but they could prove what didn’t so at this point, all signs were pointing to a lupus flare.
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I teach about the immune system to high school biology students so I have a pretty good idea what’s supposed to happen. Basically all cells (ex. your body cells, all types of bacteria or virus cells) have something called antigens on their surfaces. These antigens are kind of like beauty marks/scars/tattoos on the outside of the cell for recognition. When your body sees any of your own body cells, they know it’s you, and when they see anything else, they know it’s not you because of the antigens. This way you can make antibodies to bind to those antigens, signalling the cell to be attacked and destroyed. This is a great system for when you want to attack a bacteria or virus that isn’t supposed to be in your body!
For people that have lupus, a normal body cell isn’t recognized as one of the team, and the immune system creates antibodies against the normal antigens, signalling them for attack.
— — — —
I learned that I had high levels of antibodies against my dsDNA (so basically all my own cells), anti-SSA antibodies that attack the development of the fetal heart, and cardiolipin and anti-phospholipid antibodies that cause abnormal blood clotting.
I was told that lupus is a chronic illness and there is no cure. Because of my anti-SSA antibodies, the chances of miscarriage are very high and I would most likely not be able to bear children.
I sat by myself in silent tears for a little while. How was I going to tell Zach? This isn’t what he signed up for. Devastated, I prayed. Looking up, I saw the verse I wrote on the whiteboard:
Isaiah 41:10 “fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”
It wasn’t an easy day to say the least. Even four years later, I still cry on January 9th.
And then came January 10th. I was going home! And I had improved a lot! For the other nerdy science folk out there, from my admission to my first outpatient appointment: my BNP went from 5,000 down to 150, my ejection fraction had gone from 23 back up to 60, and my dsDNA antibodies went from 650 down to 40.
THIS IS UNBELIEVABLE.
It took a little while to regain strength and not have to pause for a breather half way up a set of stairs. I returned to work a few months later after spring break on a part-time basis but not back with my regular classes; I was on “light duties” so to speak. We lived with my parents at first so they could take care of me. It was like being a baby all over again, but this time I was old enough to appreciate it!
There were lots of really hard days where I struggled both physically and emotionally. I found my strength in the word of God (the bible). I read, journaled, and prayed as I wrestled with what all this meant for my future. I found peace, joy, and purpose in the truth God spoke about who he says I am: redeemed, beloved, blessed (and more!).
It is so amazing to me that my heart was restored to full capacity only 3 weeks after heart failure. Only a few months later, I was able to start exercising again and I experience NO ISSUES with my heart to this day. I believe this “heart event” was a way for God to show me the lupus. Because I was able to be closely monitored by high risk doctors, I have since carried two healthy babies to term. What a miracle. God is so good.