Diagnosis & Struggles
Life and Diagnosis
I was born and raised in Toronto. In my younger years, I was always interested in any and all extra-curricular activities I could possibly get into. This meant being on every sports team, the drama club, and the school band. In fact, when I got to high school, I was my band’s concert mistress (aka I was the boss of the band…kinda…)
As the youngest of 3 children, I was always doing my best to involve myself in my older brother and sister’s activities. As an undisputed tomboy, more often than not, I found myself fishing, playing ball hockey, and going on long bike rides with my brother, who is 4 years older than me. Why he allowed me to hang out with him and his friends instead of shoo-ing me away…I’m not sure. But up to this day…I’ve always been thankful for that relationship.
I started high school in 1996 and was ready to see what this whole “secondary-school” thing was about. I was on the heels of confidence, having been voted as class president and addressed my graduating class as the valedictorian in grade 8. I was ready to take on the world!
The universe had different plans.
After a few short and awkward months in high school, I fell ill. I never stayed home from school unless I was REALLY sick, and this was definitely one of those times. I had no choice; I was so sick that I could barely convince myself to get out of bed to go to the washroom.
Days passed and I wasn’t getting better. In fact, I was getting worse. I was eating next to nothing, but was gaining weight at an alarming rate. My mom had decided that enough was enough; we were going to the hospital.
“…ko look good” is what my uncle, a nurse at the hospital we went to, had said to us in a mixture of Yoruba and English…with “ko”, in this case, meaning “it doesn’t”
I didn’t know what was going on. After several blood tests and much discussion, it was decided that I needed to go to sick kids hospital. Immediately.
The next few days were a blur. Specialists scurried around me, checking my pulse, temperature, and my overall well-being. It didn’t take long for them to come up with a diagnosis.
“Your daughter has a disease called Lupus.” said Dr. Harvey. I was lying down in my hospital bed staring at the ceiling as I listened to my parents speak to the doctor while sitting on the couch a few feet from my bed. They continued to talk, but I didn’t hear anything else after I heard the doctor say the word lupus. The weight I had gained was water weight-weight that my ailing kidneys were unable to help me expel.
It was all a blur. The next thing I knew, I had a line/tube in my chest and I was attached to this gigantic machine that was seemingly gulping up my blood and spitting it back out. I later learned that this was a dialysis machine.
Seizures and Memory Loss
Cyclophosphamide: an anti-cancer chemotherapy drug which is also used to treat non-cancer illnesses..like lupus.
Side Effects: hair loss, nausea and vomiting, poor appetite, loss of fertility, diarrhea, mouth sores, bladder irritation, slight risk of developing other cancers
After much discussion, it was decided that I would be put on cyclophosphamide. The side effects were alarming to me to say the least, especially the loss of fertility and the risk of developing other cancers. I had to take my chances.
I was in bed receiving the medication intravenously when I started to feel unwell. My stomach started to hurt…badly. I writhed around in my hospital bed as I asked my sister, who was sitting on the edge of my bed, to help me, as I was in so much pain. My father informed my doctor that I was not doing well, so the doctor came in and shut the IV off.
A short while later, a nurse came in and took a look at my IV and made some adjustments. She left shortly thereafter.
I had a blood pressure cuff on my arm that was programmed to periodically take my blood pressure. I felt the squeeze and release of the cuff. I turned to look at the machine, as it started to beep loudly. My blood pressure was 200+/180+. My dad, who was standing beside the bed, turned to go and call a nurse. My mom stayed, continuously calling my name. Well, that’s what I’ve been told. I looked over at my sister…and then everything went black.
I woke up 3 days later.
The first person I saw was my father, sitting on the edge of my bed, looking down ay me and smiling. I noticed a bandage on his lip. The first words out of my mouth were going to be “What happened to your lip?” When I opened my mouth to ask him what happened to his lip, I could barely talk. My tongue hurt so bad. I came to realize that 3 days before, I had a bad reaction to the cyclophosphamide and had several seizures.
During the course of these seizures, I managed to bite my tongue several times without even knowing it. I also managed to hit my dad in the face while he was trying to hold my thrashing arms down. Doctors and nurses rushed into the room when they heard my Mom’s screams for help. Several doctors and nurses tried to hold me down to no avail. They put tongue depressors in my mouth to stop me from biting my tongue off. There was no time for stretchers- one of the doctors took me in his arms and whisked me away into another room, leaving my Mom, Dad, and sister in my hospital room with my empty bed…not knowing when (and if) I’d come back.
I was put to sleep by the doctors while they figured out how to bring my blood pressure down. My blood pressure eventually went down with the help of several blood pressure medications and having been given something to make me sleep. I took anti-seizure medication for a while after that. I didn’t talk much in the weeks following that episode; it hurt my tongue too much.
Recovery…then a flare
Prednisone: a synthetic steroid used for suppressing the immune system and inflammation.
Side effects: fluid retention, weight gain, high blood pressure, acne, thinning skin, cataracts, avascular necrosis, anemia, depression, mood swings, diabetes.
I managed to recover from that episode. I was treated very aggressively with a medication called prednisone. It’s a beneficial medication with terrible side effects, but in the end, it is prednisone that got me better. In fact, I got so much better that I was able to get off of dialysis. I went on to finish high school and take a chef training course in college with only a few hitches along the way. I decided that I wanted to go back to school and study business, so I enrolled in university and was ready to go. Just one week before I was to start university, I had another bad Lupus flare. This flare was so serious that my previously working kidneys had begun to fail again. They failed to the point where I had to resume dialysis.
It goes without saying that I was devastated.
I never imagined the number of crazy events I would go through after this.
- Septic Arthritis in my knee
- Transverse Myelitis (super scary)
- Perforated Bowel (complete with emergency surgery…VERY scary)
- Home/Nocturnal Hemodialysis
- Hip Replacement
- Knee Replacement (see above link…similar deal, just a lot more painful..!)
- and finally, Kidney Transplant!
There’s tons more to come, this I’m sure. I’ve fought many battles and won…I’m willing to continue and keep up the fight!