Take the Risk

Fast forward to February of my grade eleven high school year.

June of Grade 11

Everyone's biggest worry was if they were going to have a valentine for the upcoming Valentine's Day.  The second semester was in full swing.  I was so focused on my classes that I almost didn't notice the speckles beginning to accumulate on my lower legs and ankles.



Here's the drill:

"Mom! I have speckles!"
"Let me check you over"
"Ugh fine"
*out comes the flashlight*

We concluded that these symptoms fit the "as needed" criteria for bloodwork, as stated on my standing lab requisition that I'm sure most 16-year-olds don't carry with them wherever they go...


We were right.  I was low.

Platelets - LL - 10

By this time, I was getting used to how these types of situations played out:

Symptoms, bloodwork, results, hospital, IVIG, more bloodwork, go home, repeat.

We loaded up the van the next morning and went to Nipawin.  Because my counts were at 10, Dr Sinha wanted to know my count the next morning to see whether I was dropping lower or increasing. In pediatric ITP patients, treatment is administered when patient's platelets are less than 10 (10 000)... so when I was exactly at 10, it was touch and go.

The bloodwork in Nipawin proved that my platelets were heading in the wrong direction.

"Platelets, could you please make a U-turn and try to go in the right direction?" I thought

Platelets - LL - 8

Although I only dropped 2 platelets overnight, I was in the treatment range, therefore, we continued our trek to Saskatoon Royal University Hospital which was going to be my home for the upcoming days.

Jamie & I

My ITP symptoms are quite fluent.  Petechia, random bruising, fatigue... and hunger.  I get SO hungry.  As most people know, I can't usually eat a lot.  I can eat the typical lunch and supper (occasionally breakfast but I usually wake up at noon due to the fatigue anyways) and snacks throughout the day.  This day was no exception.

Breakfast - Tim Horton's pulled pork panini + fruit smoothie
Lunch - Tim Horton's grilled cheese panini + donut + frozen lemonade
Lunch #2 - Red Lobster... The Ultimate Feast + biscuits + caesar salad
Supper - Ribs + fries
Supper #2 - Hospital meal
Evening snack - Ice cream with Jamie

My parents couldn't believe how much I could eat.  Even after that, I wasn't completely full.  I just got cut off for some odd reason..  Anyways, my tummy was (almost) full and I was ready to battle my ITP.

Dad prefers MY hospital bed over the chairs..

This episode was quite uneventful.  Everything ran smoothly and my platelets were heading upwards.  Now this time I was slightly disappointed that my platelets decided to cooperate so quickly.  I could've used an extra day.. or two or three.. to stare at the very attractive male nurses and med students that were taking care of me.



At one point there were two very attractive guys in the room beside me.  Fortunately, they were standing on the other side of the window so we could see them clearly.  I was a little too far to the left to get a great view like my mom had in her chair.  When I turned to talk to her, I saw her lower her phone and snap a picture of them through the window.  I didn't even ask her to do it.  Proud daughter moment.

Anyways, my platelets were back to a safe zone and we were ready to go home.

***

Just when I get through one battle, I'm onto the next one.  Shortly after my platelets crashing, we got a call from a surgeon notifying us that I got a surgery date for my jaw.  I had an underbite as a kid which led me to braces at a young age.  Unfortunately, I wasn't done growing, therefore, the final result of my braces altered and shifted.  I was unhappy with my smile because some of my teeth were behind, and some were ahead.  They didn't line up properly.   We walked back to the orthodontist's office and decided to go with the other option this time: braces and jaw surgery.  To put this into perspective, I went to ortho for the first time on February 8th, 2007.

Jaw surgery - August 16th, 2016

Of course, my platelets had just fallen not too terribly long before and we had no idea what they were going to do.  They really do have a mind of their own.  We were worried about how they would hold up during this major surgery.  Platelets have a HUGE role in any surgery and anything that needs to recover.  If I go into a surgery with low platelets, my chances of bleeding are higher and my chances of clotting are lower.  Between my hematologist and surgeon, they created a game plan specifically for my case.  I was given tranexamic acid which is a pill that helps healing and prevents bloodloss.  Despite not being able to eat or drink anything past midnight, these pills were an exception.  I was to take them the night before, the day of, and three days after my surgery to minimize the chances of me bleeding excessively during surgery.  Due to me needing to take the pill for three days after, I couldn't have my jaw wired shut.  Instead of the wire, they elasticised my jaw.  This totally sounds like I had it easy because elastics are stretchy but there was no way my jaw could open any further than enough to swallow my pill.  Luckily, everything went as planned and there were no complications.  I did learn that if you leave an open bag of popcorn twists out overnight they will get stale, making them easy to flatten.  When they were as flat as they could go, I could slide them in through my elastics and let them melt on my tongue.  The texture did not apply to me because of the state I was in and I tell ya, having something that wasn't blended up was a magical experience.  Throughout my surgery and recovery, my platelets stayed reasonable and cooperative, thankfully.

 My 2016 year was quite hectic regarding my health but looking back, I consider myself lucky.  My jaw surgery was, and still is, one of the biggest, most life-changing events to ever happen to me.  There was so much that I didn't know going into it.

Would my platelets get me through?
Would I wake up?
Would I bleed to death?
Would I look ugly?
Would I regret changing how I look?
Would my recovery be okay?

SSLC billet group

I was scared shitless. But I didn't want anybody to know.  I texted "I love you" to all of my family and friends that weren't there with me before I went into surgery.  I really was unsure of what was going to happen to me after I walked through the doors to the OR but everything turned out okay.  It was a big step to adjust to what I now look like.  I spent a few months after my surgery looking like a Dr Seuss character called a "Who".  Certain muscles in my face were still healing, leaving me looking slightly odd.  My mom still told me that I looked cute.  

My ITP really does determine the path my life takes.  My platelets and I are an unpredictable team but we manage to make 'er through everything.

I think it's time to share a few more things I learned from this experience:

1. Jamie Kowalchuk is the best at bringing snacks
2. Hot med students are really the key to getting better
3. Don't look in a mirror the day after you have jaw surgery... 
4. If your dad says he invented a new kind of soup, it's likely the fish and rice that they had for supper blended up
5. Popcorn twists will become your favourite food if you can't eat anything else that is solid
6. It is possible to watch seven seasons of Greys Anatomy in two weeks
7. Don't even try to eat a Smokie at SSLC, your jaw is not healed enough.  Just pack protein drinks in your backpack for later
8. Get yourself a mom who takes pictures of hot guys for you and you're set for life
9. It is totally acceptable to eat 5 meals a day when you have low platelets
10. I am fragile, not sick.  This is when I started using that term to describe my ITP

Most importantly, I learned that it is okay to be scared.  In all fairness, like I said in my first blog post, I don't like change at all.  My jaw surgery was a permanent change that was literally changing the way I look forever.  It's safe to say that I took a huge step outside of my comfort zone and I'm so grateful that I did.  Don't be afraid to take risks.

Your fragile friend, Tianna