I had only been in high school for 2 months when I got ill. I told my dad that I was going to stay home from school, something that I did NOT like doing. But I was so weak, so tired, that I literally had no choice.
As the days went on, I grew weaker. While I was barely eating anything, I seemed to be gaining weight. After 3 days, my parents decided that it was time to take me to the emergency room. After several tests, I was finally diagnosed with Lupus Nephritis. I was put on dialysis right away. All of the weight I had gained was water weight due to my ailing kidneys. Little did I know what else was in store for me.
After much discussion amongst my doctors at Sick Children’s hospital, it was decided that it would be beneficial for me to receive a medication called cyclophosphamide. This medication has proven to be beneficial in people with autoimmune diseases. Unfortunately, it wasn’t beneficial for me. Soon after receiving the medication intravenously while in my hospital bed, I remember having a terrible, terrible stomach ache. I looked over at the blood pressure machine that had just finished taking my blood pressure. It was 200+/180+. The machine started beeping a warning beep to alert the nurses that my pressure was high. The last face I saw was my sister's-she was sitting on the edge of my bed trying to comfort me as I told her how much my stomach hurt. I asked her to help me-my stomach was hurting really bad. Then…darkness.
I woke up 3 days later. The first person I saw was my father, sitting on the edge of my bed, smiling that huge smile of his. I noticed a bandage on his lip. When I opened my mouth to ask him what happened to his lip, I felt a terrible pain throughout my entire tongue. I came to realize that 3 days before, I had a bad reaction to the cyclophosphamide and I had a seizure. While the seizures lasted for hours. During the course of the seizure, I managed to bite my tongue several times without even knowing it, and 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. I took anti-seizure medication for a while after that.
Recovery...then a flare
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.
Months had passed and dialysis had become a fact of life for me, so I started to organize my life around it. I continued to go to school part time and work part time as well. I did this for a year…until I got ill again.
My left knee began to swell. It was warm to the touch. When I went to the hospital and told a nurse, she called the doctor. I was sent to the ER.
While waiting, I was covered in blankets because I was cold...and yet, I was sweating profusely. I was shaking. I could feel pain pulsing through each and every one of my joints, on each side of my body, starting from my shoulders, then travelling down to my toes, in unison on each side. First my shoulders (*throb...pause...throb*). Then my elbows (*throb..pause..throb*). Both my hips, my knees, my ankles..and my toes. The pain just pulsed through my body like a wave.
I later found out that I got an infection through the line that was in my chest for dialysis. The infection had traveled from my chest down to my knee. I had to have surgery on my knee to remove all of infected fluid and material in hopes that the cartilage in my knee had not been destroyed by the infection. While in the hospital, I learned that I would have to wait 4 days for my surgery. In the meantime, while receiving IV antibiotics several times a day, I had to endure the pain of having doctors, both experienced and inexperienced, stick 5 inch needles directly into my knee to draw out as much fluid as possible. The fluid would recollect in my knee every few hours...so I had to have this very painful procedure done several times a day. The students doctors who wanted to "show off" and do it themselves without the head doctor's supervision hurt me the most. They didn't know where exactly to put the needles and always ended up sticking it in the wrong spot, causing me a huge amount of pain.
I finally had the surgery and was told that I did not experience any permanent damage. I was lucky. I was up and walking the next day. There is no trace of that surgery anymore except for a few small scars on my knee.
A few years later, I fell sick. Again. I felt really warm. I had two large fans pointed on me at all times. I couldn't get cool enough.
My sister took me to the emergency room in the evening where they did all sorts of tests. Before the sun rose, I could no longer walk. I couldn’t move my arms. I was completely paralyzed on both arms and legs.
I was scared. I wasn’t necessarily scared because I couldn’t walk, but I was scared because I seemed to be losing control of my own body. I couldn't feed myself, nor could I answer my own phone. When I spoke, I couldn’t seem to speak quickly. My speech was slow and slurred. I drooled when I spoke. After much testing, I was told that a growth had developed on my brain, most likely due to Lupus.
I began aggressive drug treatment-again with a drug/steroid called prednisone. In the meantime, I had to learn how to do everything again. I had to learn to walk. I had to learn to use my arms. I had to learn to eat by myself, to go to the washroom by myself. I had to re-learn everything. In the meantime, the drug prednisone wreaked havoc on my body. The high dose caused my blood sugar to rise, making me temporarily diabetic. Extreme weight gain from fluid retention caused stretch marks. I began to suffer from avascular necrosis in both my left hip and right knee-another side effect of the medication.
After a few weeks, I was allowed to go home. I was also put on a waiting list to go to rehab in order to help me learn to walk again. The waiting list was about 2 months long.
I wasn’t prepared to wait 2 months to learn to walk properly again. When I got home, I did my own physiotherapy everyday. A family friend came to my house and helped me as he was a physio therapist. I walked up and down the stairs in my house. I did strength training. I did everything. Much to the shock of all of my doctors, I can do everything that I was able to do before. A month and a half after I became able to walk again, I received a letter in the mail telling me that a space had become available for me in a rehab clinic. I threw the letter in the garbage.
Again, a few years later, I woke up and began to get ready for work on a Monday. My stomach hurt so badly! I decided that I couldn't go to work that day-the pain was too intense.
By Wednesday, the pain was simply unbearable. I couldn't sit, I couldn't stand, I couldn't sleep. I managed to twist myself into a mildly comfortable position on the ground on the living room. I had a bucket beside me which I threw up in multiple times. My Dad stayed home with me on the Wednesday to take care of me. He was scared at what he saw in the bucket after I had thrown up..it was black.
Finally, I felt a severe pain in my stomach. It felt like I had a water pipe in my stomach and it just busted. I told me Dad...I have to go to the hospital. In fact, we had gone to the hospital the day before, but after waiting very uncomfortably for 6 hours, I told my Dad to take me home. This time, we went to another hospital.
Before leaving, I called my rheumatologist. I told him I was really, very sick. He told me to come to the hospital and he would meet me down in emergency.
We got into the car and drove. Every bump in the road, every crack, every turn...was extremely painful. I moaned and groaned in pain for the whole 30 minute drive. When we got to emerg, my doctor was already outside, waiting with a wheelchair. He came to collect me and wheel me in. He went in and spoke to the ER doctors. He saw my face. My colouring was off. I was slumped over in pain. He knew that I was not a big complainer...and therefore he knew something was wrong.
I was called in within 10 minutes. If not for my doctor, I know I would have been there for hours as the waiting room was quite full. After doing a CT Scan, the ER doctor came in and said "It doesn't look good".
I had a perforated bowel. I needed emergency surgery. I would need to wear a colostomy bag. Everything was just happening so fast...I did not understand.
Within about an hour, the surgeon on call was paged, I was prepped for surgery by the nurses, and I was whisked off to the OR while my worried father made his way home.
I wore the colostomy bag for 6 months, and which time I had surgery to have it reversed. I remember that horrible time every day when I look at my stomach and the scars that remain.
In an attempt to take more control of my life, I decided to learn how to operate a dialysis machine so that I could do it at home. I learned about inserting needles into my arm, setting up the machine, cleaning it, ordering supplies, etc. I have been on home dialysis since early 2008.
In July of 2011, the pain from the avascular necrosis really began to hinder my quality of life. I could barely walk sometimes, relying heavily on pain medication just to do basic things. So in August, I had my hip replaced. The surgery went off without a hitch, and I can walk much better. Sometime in the future, I'll have to have my right knee replaced too.
On March 1 of 2012, I finally received my kidney transplant! My donor was my older brother. The kidney worked quite quickly; I believe this is due to the fact that the kidney came from my sibling and we were deemed to be a 5/5 perfect match prior to the transplant. I am ecstatic to be off of dialysis as it has been a long time coming! I look forward to experiencing all of the things that I could not do (or would have had a lot of trouble and/or expense doing) now that I have my transplant! My brother is my hero..but I won't and can't forget how much my entire family: Dad, Mom, Sis AND Bro, look after me and take care of me. I love them all so much that words cannot even begin to describe it!
So here I am today. I’m 31 years old now. I’m now off of dialysis and I also graduated from college at the beginning of 2012 (I got Deans List Honours too. Pretty sweet, eh? :P ) Prior to pretty much all of the above mentioned episodes (and surprisingly, many, MANY episodes that I did not even mention), I was on track to have a kidney transplant...but I've gotten sick and had to postpone it. I have now realized that it simply wasn't the "right time" to receive my new kidney. Now that I have received it and finished school just prior to receiving it, I am so excited about what the future holds where my career and just life in general has in store! I’m also involved with Step by Step organ transplant association.
According to many people I know, I don’t “look sick”. Well, I’m glad I don’t look sick, because I’m not. I may have Lupus, but as you can see, while Lupus may try, it DEFINITELY doesn't have me.