The rest of high school was uneventful. I got through my classes, achieved high honours, and even had the privilege of giving the Valedictory Address at my graduation in June of 2017. The final months of high school were filled with plans for my future. Scholarship deadlines were left, right, and centre. I was stressed out but for a good reason. I was exhausted all the time but I was convinced that it was due to the amount of weight that I had on my shoulders. Anyways, at the end of August 2017, I moved into my basement suite in Saskatoon where I would be living while attending the University of Saskatchewan.
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| Grad 2017 |
I had my class schedule, my textbooks, and my bus pass. I was nervous but I was ready. My schedule was pretty sweet (Thanks Mom). Mondays and Wednesdays I only had one class during the day that went from 10:30-11:20am. This was perfect for me because I didn't have to wake up early. On Fridays I had class from 9:30-11:20am which was also pretty great because I was able to travel home and make it to the school just in time for the football games. Tuesdays and Thursdays on the other hand.... 8:30am-4:30pm. This day consisted of my two most difficult classes and two other ones. Needless to say, these days were mentally and physically draining. I did my absolute best to work through my exhaustion that had been following me since high school... still convinced it was the stress because everyone knows just how stressful university is.
At this point in my life, I had been going for bloodwork as needed. Since being extremely fatigued is one of my most prominent symptoms, I had made many appearances at the RUH lab. (Shout out to Rachel and Rayna Morris for conquering the tunnels with me... after getting lost multiple times). Throughout the semester, my platelet counts had been slowly tapering off. I sat most of my grade 12 year around 30 but they have been slowly dropping since then.
It wasn't until December 11th, 2017 that I dropped within the treatment level. Because I had recently turned 18, the new treatment range for Adult ITP patients is anything below 30 (30,000).
Platelets - 20 - LL
Platelets - 19 - LL
Platelets - 15 - LL
My new adult hematologist, Dr Pearson, called me about my levels and discussed the game plan. He wanted to treat me at Saskatoon City Hospital the next week for two days as an outpatient. It seemed simple enough but because of the horrible timing, it really was far from being simple. To put this into perspective, I was a university student preparing for 5 final exams and a Bio Lab final, along with all the final papers and assignments due. My parents also just flew to Arizona that morning so there was no way that they would be able to be with me while I was in the hospital.
This is how everything went down:
Monday, December 11th, 2017 - Indigenous Studies 107 Final & English 113 Final (and make time to sign blood consent at the hospital in between my two, 3-hour finals and during the office hours...which is where I met Denise, the receptionist who I now talk to on a regular basis)
Tuesday, December 12th, 2017 - IVIG treatment
Wednesday, December 13th, 2017 - IVIG treatment
Thursday, December 14th, 2017 - Biology 120 Final
It was absolute chaos. But thankfully, my family is very supportive. My Grandma Colleen drove to the city Monday night and stayed with me in a hotel close to City Hospital. Originally, I thought that I would be fine by myself. I figured that I would either catch a bus, get a friend to drop me off and pick me up or just drive myself but little did I know, the nurses decided to leave my IV in my hand overnight, making my left hand extremely stiff and sensitive. There was no way I would've been able to drive.. but that didn't stop me from offering after Grandma and I got lost in the city a couple of times. My Grandma Myrna and Grandpa Dan also made their way into the city and went out for supper with us at the Pink Cadillac one night (I was in need of a milkshake and I think Grandpa Dan agreed that it was a good choice). I received multiple messages and phone calls from family members and family friends, all checking up on me and asking if I needed anything.
As you all probably could've guessed, studying in the hospital was not very effective. I was tired and distracted. It was also difficult to do things on my laptop using only one hand. I likely could have appealed to write my finals at a later time due to medical reasons but I decided that it was my best bet to write them while the information was still fresh rather than three months later. It was such a HUGE relief to have that week over with, you have no idea.
My counts went up to 58 after that IVIG treatment. This was exciting for the nurses and my Grandma because my counts were higher. This was not exciting for me at all because it was ONLY 58. I just assumed that they only went up that much because it was a shorter treatment and in the course of two days. That was that. I was released the day that my parents were flying home from Arizona so that night, we all went for supper at Montana's that was conveniently located right beside where I lived at the time. They too were excited that my counts had gone up.
Once I was done my finals for the semester, I returned home for the Christmas break. I was super pumped about all the good food but more pumped that I didn't have any homework, for the first time since summer!
We celebrated Christmas early due to my cousin's hockey schedule and my university schedule. It really doesn't matter when Christmas is celebrated because Grandma Myrna always has the table (and 3 other tables, and both the freezers, and the counters, AND the cold storage room/former playroom) right FULL of baking. I am not kidding. It is awesome.
This Christmas played out a little bit different than I had expected...
It was supper time and we all filled our plates right full. Everybody ate until they were full to the top. The boys went back for seconds but made sure to add extra mashed potatoes (a family favourite). The food all looked and tasted SO good. I ate what was on my plate (which was less than normal and significantly less than what most people were eating). I wasn't trying to be rude by not eating very much but I truly wasn't hungry.
My mind was telling me yes but my stomach was telling me no!
I didn't have any dessert and I didn't have any goodies as the night went on. The next morning I tried to eat breakfast (which I usually sleep through and miss anyways) but I got really full right away and didn't feel great. I concluded that I just wasn't used to eating breakfast, therefore, my stomach was trying to adjust. I tried again at lunch, still couldn't eat. I tried not to make a scene as I nibbled away at this and that, feeling instantly bloated and sick.
It wasn't until we went to Eatonia to celebrate Christmas with the other side of the family that my eating patterns became noticeable and concerning. My Grandma Colleen makes tons of appetizers for our Christmas meal: surprise spread, chicken wings, rollups, shrimp ring, spinach dip, etc.
I love appetizers. Chicken wings are actually one of my favourite foods so obviously, I was excited to dig right in! But instead of getting sauce all over my face while filling my tummy with the delicious honey garlic chicken wings, I grabbed the smallest plate I could find and put two wings and a couple of crackers on it to eat. My Mom and Dad both shot me looks that translate to "Tianna, smarten up!" but I couldn't help it. I just wasn't hungry. I couldn't even finish what was on my plate before feeling gross and over-the-top full.
Basically, my whole Christmas consisted of me being hungry, staring at food, watching other people eat, and getting told to eat more. I wanted to eat so badly.
Despite my troubles with eating over the break, I thoroughly enjoyed seeing the family and having time off of school but unfortunately, all good things come to an end and I was headed back off to the city for Semester Two at U of S.
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| My grandparents & I |
Again, my life decided to take an unexpected turn. I knew my platelets had dropped to about 15 the previous week but Dr Pearson said, "If you're not worried, I'm not worried" and I wasn't because it wasn't out of the ordinary for me to be low and it really just wasn't a good time to be treated. Saturday evening rolls around and Mom looked me over, checking for speckles and bruising. Everything remained the same. Mom then went to the 5:00pm church service. She was back home within an hour and a half. In that amount of time, my symptoms got significantly worse. I had petechia everywhere. My sweatpants bruised my legs... aaand my butt looked like it had been majorly scratched (from pulling my pants up)."Oh my God. You are very low. Pack a bag, we're going to Nipawin Emergency Room right now" stated Mom
Once we got to the ER, I was taken into an assessment room right away. We did not wait long before someone came to see me and get the lowdown on my case. I had hardly even started to explain my ITP history when Mom enthusiastically says,
"Look at her butt! Tianna show him your butt!"
So yes, he saw my butt.. along with every other person that happened to walk into the room while Mom was there because I was just so 'fascinating'.
Anyways, after I mooned a bunch of people, the lab technician came in to take my blood. (Shout out to my future cousin-in-law Veline Griller for being awesome. I'm a really tough patient, especially when my counts are as low as they were). After she took my blood, we waited and waited.
Platelets - 2 - LL
This was the second lowest I had EVER been. I was admitted right then and there for a two-night hospital stay.
To back up the bus just a little bit, when I was treated the previous time in my grade 11 year, Dr Sinha took extra tubes of blood for general testing before giving me the IVIG treatment. The reason for testing before a treatment is that the IVIG is a blood product so it masks what your system is actually producing or carrying with whatever is carried in the product. It takes approximately 6 weeks before the blood product is completely cleared out of your system. Anyways, I found out two important things:
- My blood type is A-, the second rarest type
- I am IgA deficient
No, not the IGA grocery store. I was confused too. Our blood's plasma carries multiple different types of antibodies. I don't have any IgA antibodies, making me IgA deficient. This is extremely important because IVIG is a blood product and I need the type of IVIG that has the lowest concentration of IgA so that I don't have an allergic reaction. I had always been treated with Gamaguard IVIG in the past because it was the type with the lowest concentration but because it has a bunch of different parts of blood combined from multiple donors, it is impossible to know for sure if it contains any IgA. I always just hope for the best which has so far worked for me.
Nipawin hospital didn't carry Gamaguard IVIG but they did carry Gamunex IVIG which is the next best thing. We discussed it with Dr. Pearson who approved the Gamunex IVIG and I signed the blood consent, fully trusting that this product would work as well as Gamagaurd IVIG has always worked for me.
Due to me arriving so late at the hospital, my treatment finally began at around 1:30am and continued for about 3-4 hours although I don't remember much because the medication they gave me through the IV before the Gamunex made me fall asleep almost instantly. I do remember being thankful that there weren't any traumas that night because I was put in the trauma room in the ER as they were shuffling rooms around. By the time I got my room, I was already done the first part of my treatment. The next treatment was to start 24 hours after the last one started so I waited in the Nipawin hospital all day doing nothing but watching Netflix and snapchatting my boyfriend. At around supper time, Janay agreed to go to the Venice House and get me some honey garlic chicken wings because I was craving them SO badly. Like I said in a previous post, ITP lows make me extremely hungry but this time I couldn't eat because of my stomach acting up. I ate about three chicken wings and looked at Janay, helplessly, and said,
"I'm full... I really can't eat another one, I might burst"...
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| Janay & I |
I nibbled at another one before insisting again just how full I was and getting up to go to the bathroom. The wings were really good but I still just could not eat. This was extra frustrating when my appetite is so big.
Eventually, my next treatment began and ended. My blood was drawn the next day and I had gone up from 2 to 11 to 37. Again, I was not happy. I got released Monday morning, giving me time to get home, pack, and head back to the city for university again. Mom was wary of letting me go back because of how unpredictable my platelets had been so she insisted on coming with me and staying with me at least for that week. She helped me with cooking and cleaning and was willing to come to classes with me if I absolutely needed someone. I felt much better and didn't seem to have any complications with my treatment. I mentally noted that I didn't even get a headache that I usually get after an IVIG treatment.
I had NO idea what I was in for.
Mom and I crawled into bed to watch Netflix for an hour or so. At around 11:00pm, I got up to brush my teeth. I remember standing in my little bathroom, in front of the mirror when I felt as if I was turning to stone. Every single muscle in my entire body felt like it was hardening under my skin. I called Mom over and asked her to feel if my muscles were actually hardening, to see if she could tell. She gently placed her hand on my shoulder and I screamed out in pain. She tried another spot, the same reaction. She got me to lay down on my couch while she asked me a few questions, like any nurse.. I mean, mom, would. In the process of that, my jaw started trembling uncontrollably. It made me giggle a little because I was nervous and had no control over what it was doing. I looked like a child who stood outside in the winter time too long. This stumped nurse Carlene, which lead to a call to the Healthline (811). Mom explained my history and what was currently happening but they insisted on speaking to me. They asked me the same questions and got the same answers then promptly said,
"Go to the nearest emergency room right now"
So my Mom repacked my bag (in about 30 seconds) and off we went to the RUH Emergency Room at around 11:30pm. By this point, my whole upper body was shaking and trembling. I was wearing a sweatshirt and Mom said that she could see the muscles in my abdomen moving around, making my stomach look like it was fluttering. After sitting in the waiting room chair for a long time, the trembling relaxed but did not stop. Eventually, around 3:30am, we were called to a different section where we waited to see the doctor on call. I stood up and walked down the hall to that waiting room. Just that small amount of walking was enough to make my whole body tremble and shake all over again. A lab technician took me into a room to take my blood. He was the third person in 9 years of needles to get blood out of my right arm. My counts were still up higher than before and everything else came back normal. I had to give a urine sample as well and similarly, everything came back normal. The doctor finally called me into the assessment room. We gave him the details of my situation and he was getting ready to do a physical assessment. He barely touched me and I was screaming in pain, worse than previously that night. His face said all we needed to know: he was stumped which led to a call to Dr Peason (again). Together, they decided that it was likely just a reaction to the blood product they gave me and that I would have to wait it out until the worst of the reaction is over.
Mom and I arrived back at my place at around 5:30am, absolutely exhausted. I crawled into bed, wincing in pain with every movement. The pillow hurt the back of my head. The sheets made my back and legs ache. The blanket was unbearably heavy. Everything hurt SO bad.
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| Always needing my mommy |
Then the part that scared me more than I can even say... Mom had to somehow crawl into her side of the bed without moving a blanket, sheet, or pillow, and without making the bed shake at all... I was impressed because Mom isn't the most graceful person, but she got in without causing me too much pain. The next part I was worried about was if she rolled over in the night or accidentally kicked or touched me in any way because I could not handle any contact. My muscles were so tense. You know how it feels after you do a really good work out? It was that type of sore... x100000000. We woke up about 4 hours later because I had a much-needed appointment with Dr Pearson at City Hospital at noon. Fortunately, he spent two hours with us, discussing everything and trying to get to the bottom of what was happening with my body.
Up until this point in my life, my symptoms and counts had been so predictable. I would always fall in the Fall, around October or November. I would get petechia on my lower legs and have more random bruising on my arms and legs. My symptoms were so consistent that I could literally guess a number and be within 5 of what my count actually was. Everything was changing now. I couldn't predict anything and I was dropping at random times.
Dr Pearson also tried to give me a physical assessment with little to no luck because my muscles were still so tense. The major thing to look for in an ITP patient is an enlarged spleen. I often give Dr Pearson a hard time when he tries to feel for mine because it either tickles causing me to laugh or I am too sore to be touched. On a side note, before I was released on Monday morning, I had an ultrasound for my spleen which confirmed that my spleen was enlarged which is what we thought was causing my appetite loss. Often if a spleen is enlarged, it pushes on the stomach, creating unwanted pressure which can affect one's appetite. In this particular situation, he was unable to feel for my spleen because of my condition but we did schedule a follow-up ultrasound to check things out. He agreed and concluded that I reacted to the blood product they gave me. We were unsure of why though.
Was it because it was Gamunex instead of Gamugaurd?
Did it contain IgA?
Was the rate of infusion too fast?
Was the dosage too high for my body weight?
There were multiple factors that could have caused my reaction. Dr Pearson told me that he has seen tons and tons of reactions but none quite like the one I was having, which sparked a little more interest in my case. He told me to alternate between 600mg of Advil and 600mg of Tylenol, every two hours.
The next day, my muscles began to release a little bit but I still could not be touched. Then, the headache hit me and it hit me hard. I was maxed out on painkillers and they didn't even dent the pain. The pain was so strong that it made me vomit uncontrollably for a few hours. I remember crying to Mom,
"I just want to be knocked out"
Mom spent hours phoning different hospitals and offices trying to get ahold of Dr Pearson because this all started to happen right at the noon hour when every office is on lunch break. We finally got ahold of him and he said that there was a different medication he could prescribe for me but it would make it much worse afterwards, meaning that it would help now but make me even sicker after the headache is gone. Finally, I found a comfortable position, next to my pail, and fell asleep for a few hours. In this moment, I learned that counting backwards from 100 by sevens does, in fact, work. This nap was much needed because my headache wasn't nearly as powerful when I woke up.
At this point, I had still only been to one or two of my classes and I was almost three weeks in. I was stressed out about being this sick and I was beginning to get more stressed out thinking about all the homework I was going to have and how on earth I was going to catch up and be prepared for midterms that were approaching quickly. That's when Mom popped the question,
"Tianna... do you remember the last time you have actually felt good and rested?"
"No, I can't remember"
That was all she needed to hear. She called Dr Pearson and asked his opinion and he fully supported/encouraged me to follow through with what we were thinking.
I needed to move home and be with my family and get better once and for all.
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| Or I could go back on vacation... |
This was a really difficult decision because it truly felt like my ITP had defeated me. I had been fighting for so many years, working as hard as I could to live my life and be successful despite everything that comes along with an autoimmune disease holding me down. ITP has been a tough battle but I seemed to be in the lead for so long until this year. Everything was falling apart. I was embarrassed to tell people I dropped out of university because all throughout high school I had a 95%+ average.. I am capable of achieving things if I put my mind to it and work hard. This reaction though, made me feel hopeless. ITP really was in complete control of my life and now I'm just waiting to figure out how to take control again.
Since this, it has been a waiting game. I go for weekly blood work to monitor my platelet levels. I haven't been able to get a job or do any extra schooling because my ITP has been too unpredictable to make an honourable commitment. But don't worry, my battle with ITP is not over and this story has more to it.
Here are a few things I have learned:
- I'm not a morning person...at all
- I really like honey garlic chicken wings
- Grandma Myrna has enough food to feed most of Carrot River and she likely won't turn you away if you stop in (10/10 would recommend Grandma Myrna's Coffee Shop & Bakery)
- Just because your Grandpa Colin and Dad think that you have an eating disorder does not mean you do.. why on earth wouldn't I eat my favourite foods?!
- Getting hospitalized in between finals was a super bad idea
- I have become satisfied with final marks that are in the 50's.. a pass is a pass, my friend
- If you ask any of the Nipawin Hospital staff if they've seen my ass, the answer is probably yes.. Thanks for that, Mom
- Mom is really good at getting whatever food sounds good to me because at that point, we were desperate to get anything into me while we could
- On another note, Mom is not capable of getting the inside fudge part of a DQ ice cream cake at 11:00pm.. unfortunately
- Grandpa Dan likes ice cream almost as much as I do, making him the best person to have a milkshake with
- My reaction was brutal. I would rather die than go through that again.
- I am capable of sleeping 18 hours a night for multiple nights.. a sick girl needs her rest
- I have THE BEST people in my life
Even though there is more to my story, I'd like to thank Mikayla, Rachel, Rayna, Grace, Kaden, Shanelle, Eric, Ellie, Freya, Erin, Josh, and Miranda for taking notes for me and helping me to get my assignments in on time when I wasn't able to be there. I'd like to thank all my family and friends for being so supportive and understanding. Above all, I'd like to thank Dr Pearson, Dr Sinha, all their amazing staff, and everyone in the health field that has helped me with my ITP in the last 9 years. Also a huge shoutout to my parents for being there for me 110% and always pulling strings and doing everything you can to support me in every single way. You guys are all amazing and I honestly could not have gotten to this point in my life without you. It's truly incredible how supportive the people in my life are and how crucial that has been to my recovery. I can't fight my ITP battle alone.
Thank you, from the bottom of my heart!
Thank you, from the bottom of my heart!
Although my journey is not over, and maybe never will be, there is still more to my story. This reaction was me hitting rock bottom.
I can only go up from here.
Your fragile friend, Tianna
