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Patient Stories

Jordan P

What It’s Like to Win “The Lottery”

By Jordan Parhar

Like many others growing up, I always dreamed of winning the lottery. Things like “How many video games could I buy?” or “How many NHL games could I go to?” were things that I would ask myself. Little did I know that I would end up winning a lottery of sorts one day, but not the kind I had initially envisioned.

One September day while I was in the change room of my 9th Grade gym class, one of my classmates asked, “Jordan, what did you do to your back? It looks pretty messed up.” I was really taken aback when he asked me that. “Is there something wrong with my back?” I wondered. I had been playing ice hockey for years and taken my fair share of hits, but I certainly didn’t feel anything. My Mom was a nurse, so I figured I’d get her to take a look once I got home.

As soon as I went home, I showed my mom my back and she agreed that something didn’t look right. She took me to see our family doctor, who referred me to get X-Rays at a nearby hospital. We were shocked to see that my spine was crooked and in the shape of an S. The doctor we saw told me it looked like I had idiopathic scoliosis, which I had no idea was a thing. Both my mom and I were shocked that we hadn’t noticed it before. However, after thinking about it more, it made sense. In the years leading up to Grade 9, I was quite overweight and self-conscious about taking my shirt off. Playing sports and eating healthier helped me get to a healthier weight (which led to me taking my shirt off when changing for gym class).

After receiving X-Rays, I was referred to BC Children’s Hospital to learn about potential treatment options. About 6 months later, I had my first appointment at BCCH with Dr. Firoz Miyanji. After getting another set of X-Rays he confirmed that I indeed had idiopathic scoliosis. Due to the 65 degree curve in the thoracic part of my spine, he let my parents and I know that I would be needing spinal fusion surgery. This meant I would no longer be able to play contact sports including hockey and football. Playing sports was such a huge part of my personal identity, so hearing this news was devastating. My mom, dad and sister were incredibly supportive of me but there wasn’t much that could cheer me up. I was worried that my life would never be the same.

Over time, I eventually came to terms with getting surgery. I felt that being negative about my situation wasn’t helping with anything and that I needed to change my attitude. In the days and months leading up to my surgery I was nervous, but wanted to do everything I could to prepare myself. I was told that keeping active as much as possible would help in the recovery process so I tried doing that. I began running on a daily basis and doing core strength exercises. As a competitive person, I knew that I’d beat myself up afterwards if I wasn’t doing everything I possibly could to help my process go as smoothly as possible.

Eventually the big day came. I was anxious, but relieved that I no longer had to wait. Before heading to the hospital, my parents and sister told me how much I meant to them and that everything would be okay. I couldn’t help but break down emotionally. I never would have gotten to that day if it wasn’t for their love and support.

After waking up once the spinal fusion surgery was over (my spine was fused from T2 to L1), I couldn’t believe that I wasn’t in more pain. Dr. Miyanji did a phenomenal job and I had so much support in the aftermath of my surgery. I questioned how quickly I’d be able to get out of bed and walk again, but his team helped me take my first post-surgical steps later that evening. I ended up staying in the hospital for five days before being discharged.

My recovery went very smoothly. After a few weeks of being at home watching the 2010 FIFA World Cup and playing on my friend’s old Nintendo 64, I was able to resume some basic day to day activities. It was June so school was out for the summer, but I returned to my part time job at a bookstore shortly afterwards. I also was able to resume practicing for my driver’s license test as well (I ended up passing in August which was exciting).

By the time September came around, I was ready for my final year of high school. Other than strenuous physical activity, I was able to do pretty much everything I had been doing prior to my surgery. My back certainly felt stiff, but I wasn’t in excruciating pain or anything. I was thrilled and incredibly happy. In the year or so after my surgery, everything went smoothly for me health wise. Dr. Miyanji said I was recovering nicely and he was happy with my progress. I felt so incredibly lucky that the worst of my scoliosis journey was seemingly over.

In the year or so after my surgery I had been doing quite well. I had started University and had made a ton of new friends which was really exciting. I was able to start running and playing non-contact hockey again which made me feel very optimistic about my future. However, despite this not everything was perfect. I did start to notice a few things that were unusual. The first was that I would run out of breath a lot more easily than I did before. I also would feel a bit feverish after playing hockey or running for a long period of time. Finally, I noticed that there was a small bump in the middle of where the incision was on my back. Like I did back in 9th Grade, I went to show my mom to get her opinion. Just as she did in the years before, she took me to the doctor. This time, we went straight to see Dr. Miyanji.

Dr. Miyanji thought the bump on my back was strange but he remained calm. He said that he would perform a quick surgery on me to open up my back to figure out what was going on. He said it would likely only take an hour or so, and that he’d be able to tell me what was going on afterwards. I was booked for surgery a few weeks later. I had a much shorter period of time to prepare myself than I had previously, but I tried not to worry. The fact that Dr. Miyanji wasn’t panicking helped reassure me that everything would be okay.

In the weeks leading up to my second surgery, the bump on my back grew larger and larger. Two days before my scheduled surgery, it actually burst open and began leaking fluid. My parents bandaged me up and took me to the ER at BCCH right away. Despite the uncertainty surrounding what was going on, I was less worried this time around. Having been through surgery once before made this time feel a lot less intimidating.

When I was about to be sedated, I started to feel more nervous but tried my best to keep calm. “This will only be for an hour or so” I told myself. However, when I woke up I knew something was wrong. My chest had hurt like it never had before. As I was coming to, I could hear my parents talking with Dr. Miyanji. I wanted to speak but before I could, I vomited everywhere. “What happened?” I asked. Dr. Miyanji explained that when he opened up my back, he discovered an infection living on the titanium rods that had been fused to my spine. Instead of being under for one hour, I had been in surgery for over six (which is why my chest was in so much pain). The titanium rods from my original surgery had been removed, and my back had been left open with a VAC dressing over top.  I would be having another surgery in a few days to clean up the rest of the infection and to sew me back up.

I was in complete and utter disbelief. There was so much to process and my thoughts were racing. “The rods are out? I have an infection? My back is open right now? What’s going to happen to me!?” I could tell that my parents were extremely worried, but they tried not to show it. Shortly afterwards I was taken to a room upstairs to rest. I was so weak and tired that I couldn’t do much more than sleep.

The next day, Dr. Miyanji came to see me again. He wanted to reassure me that everything was going to be okay. A doctor from the hospital’s infectious disease team came with him to let me know that they had looked into the infection. This doctor let me know that I had an infection that had entered my body at some point around the time of my initial surgery. The infection had been dormant in my system for a long time, but continued to grow over time until it had spread to my blood. I was going to be put on IV antibiotics to help fight the infection while they attempted to figure out what it was. During this time, I needed to stay in the hospital which meant I would need to drop out of University for the semester.

As disheartening as this news was, I tried my best to stay positive. I was however quite curious about what happened and if this was common. After asking about it, Dr. Miyanji said “Jordan, the chances of this happening in this fashion were slim to none. As soon as you’re home you should buy a lottery ticket because cases like these are few and far between.” I knew he felt terrible for me. If it were any other doctor I probably would have been upset, but I knew that this situation was a total fluke. I could tell that Dr. Miyanji was going to fight tooth and nail to make sure that I was going to get through this okay.

A few days later, I had my third surgery. This procedure was much shorter and simpler than the previous two. Once it was over, I was grateful that my surgeries were finished for the time being. My condition wasn’t improving though. I started feeling really sick from the different antibiotics I was given as the infectious disease team was trying to discover what sort of infection I had. Eventually, I was given IV Vancomycin to clear out my system.

Over the next week, I continued to have visits with Dr. Miyanji and the infectious disease team. I was feeling better and regaining some strength. The testing results eventually came back inconclusive, so they were unable to figure out what exact infection I had (the belief was that it was a p.acnes infection). After twelve days in the hospital, Dr. Miyanji let me know that I could go home but I would need a PICC line to be put into my arm so that I could continue to receive Vancomycin through an IV. The plan was for me to get the PICC line taken out after three weeks. I would then switch to Clindamycin (an oral antibiotic) to ensure that the rest of the infection would be cleared from my blood and my system. Being able to go home to sleep in my own bed was such a joy. I was hopeful that everything was going to be okay.

My first few weeks back at home were a breeze. I returned to my previous recovery routine of playing video games and watching sports. Things started to get interesting after the PICC line was removed though. Shortly after I took my first dose of Clindamycin, my body started to swell and turn red everywhere. Eventually my throat started to close up and I went into anaphylactic shock. It turned out that I was allergic to Clindamycin and I had no idea. I couldn’t believe it. After going to the ER, I was given epinephrine and spent the night in the hospital.

Throughout all of this, my mom had been by my side each and every day. She slept with me in the hospital. She made me meals. She helped me with my IV. She drove me to all of my appointments. She sacrificed all of her vacation days at work to stay at home with me each and every step of the way. I was so fortunate to have love and support from her, my dad and my sister through everything. If it wasn’t for them, I wouldn’t have been able to stay positive.

After my allergic reaction, I was able to get a new PICC line put in, but I would need to have weekly bloodwork checkups to make sure that I was doing okay. Once I had been to a few appointments and had been doing well, I told my mom that I felt comfortable driving myself so that she could go back to work. She was nervous, but agreed that this would be for the best.

On the day of my third appointment, it was raining quite heavily outside. The street leading up to the bloodwork clinic only had single lanes of traffic. This normally wouldn’t be a problem, but it was on this day. When I was about two minutes away from the clinic, a car at an adjacent stop sign ahead of me made an unexpected left turn onto the street. This caused every car in front of me to slam on their brakes. I did the same, but the driver behind me wasn’t able to fully stop with the wet road. She slammed her Ford Explorer into my Nissan Altima which caused me to ram into the car in front of me. After screaming in shock, I was in utter disbelief. I got out of my car to realize that it was completely destroyed. Someway, somehow I was almost completely unscathed. It was a miracle. My parents were extremely upset at the other driver, but were so glad that I was okay. Worried sick about me, my mom agreed that she would take time off work to look after me until I had fully recovered.

Fortunately, the craziness started to come to an end after my car accident. In the weeks ahead, things slowed down considerably. I started feeling better and was able to attend some social events again. I got my PICC line taken out, and the infection had cleared my body. In the follow up X-Rays I had with Dr. Miyanji, he said I had once again been recovering very nicely. After a year of checkup appointments, he let me know that my spine had stabilized and that I wouldn’t be needing another spinal fusion surgery. Hearing this news had me speechless. I couldn’t believe it. Being able to walk away from three surgeries, a blood infection, a crazy allergic reaction and one major car accident in one piece was the best feeling in the world.

——————

While I haven’t won millions of dollars in the lottery like I dreamed about as a kid, I certainly feel like I have in life. Whether it’s the phenomenal care I received at BC Children’s hospital, the overwhelming love and support I’ve received from my parents, or the fact that I’m able to continue living an active lifestyle, I consider myself to be a lottery winner in so many ways. In the 10 years since my surgeries, I’ve been able to do so many things that I once didn’t think were possible including:

  • Winning a rec league hockey championship while playing on the same team as my dad
  • Graduating from University with two Bachelor’s Degrees (History and Education)
  • Living in a Kenyan village for a month to teach at different schools within the community
  • Landing my dream job as an elementary school teacher

The one thing I am most grateful for about my experience with scoliosis is the different perspective it has given me on life. It’s helped me recognize what is truly important in life (my family and my friends), while also helping me stay positive in times that are difficult. I consider every day of my life to be a gift, and I now try to enjoy each one to the fullest possible extent. As difficult as this whole process has been for my family and I, I’m so lucky to have gone through it. I cannot imagine where I would be in life if I had never “won the lottery” by being diagnosed with scoliosis.

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