When it Rains, it Pours

Hey everyone, I'm alive and well.

HA just kidding.  I haven't quite figured out what the definition of "well" is but I am determined to do so.

This blog is long and full of content but totally worth the read - bear with me!

Here's the scoop:

Since my reaction in January, I have been living at home.

During my reaction and the following week, I had felt trapped in my basement suite and I had really began to appreciate the saying "there's no place like home".  If I was going to be sick, I wanted to be sick in my own bed in my bedroom, not in my basement of my place in the city. 

The only reason Mom had refused to take me home earlier was that we had to be absolutely sure that the Nipawin Hospital would carry the right IVIG product in case I needed another treatment.  (She may never admit to this but it's also a challenge to get Mom out of the city... she's what you would call a shopaholic...).  We had to eliminate all the chances of another reaction.  

Finally, Nipawin received their order of IVIG product and Mom said we could go home.  Mom and I packed up most of my suite right then and there.  To be completely honest, I sat on the couch and ate Hickory Sticks while Mom did ALL of the packing.  Our 2003 'Granny Van' was as packed as full as it could be.  

We arrived home and that's honestly as much as I remember aside from sleeping A LOT.  Maybe I don't remember because nothing really eventful happened or maybe because I just don't want to remember.

I do remember how excited I was for the February break because I found out that my family on my Dad's side was coming to spend the week with us.  Finally something that I could look forward to! 

I was getting exhausted as the days went by and I really wasn't doing anything at all... (if you ask my family, I was just being a 'lazy teenager' but my ITP served as a deadly excuse for all the laziness I wanted).

I decided to go to town to get bloodwork.

Platelets - 20 - LL

For my particular case, 20 is in the treatment zone but it is not life or death.  Dr. Pearson called and we discussed my options and what to do moving fowards.

"This one is up to you, Tianna.  It depends on how you are feeling.  I can book you in for treatment tomorrow or we can wait this out."

My decision was already made.

"Treatment, please.  I can't stand being this exhausted all the time."

So that was that.  I was told to go to the Nipawin Hospital the next morning for treatment.

Mom and I packed some essentials... my laptop, some chips, y'know, whatever will help us get through another treatment.  It took a little while to get all set up because we had to go through how this whole treatment thing was going to go in order to avoid another reaction.

Our Plan:
- Slow the rate of the blood product down (it may have been too high in comparison to my actual weight rather than the average "adult" weight they go by)
- Smaller bottles (an overall less amount of product may reduce the chance of a reaction)
- Different type of blood product (gamaguard instead of gamunex)

We were sure that we had eliminated all possibilities of a reaction so we decided that it was time to proceed with treatment.

I absolutely hate IV's but that doesn't matter in my life.  Once my nurse got my IV in, she hooked up my first of eight bottles of gamagaurd.  This treatment took over eight hours to complete and I was scheduled to return the next day for my second course of treatment.  Because of my hate for IV's, the nurse allowed me to keep the IV in my hand for the night.

I returned home and was greeted by my ENTIRE Schmaltz side of my family.

I was excited to see everyone but totally exhausted from my treatment (and slightly discouraged and annoyed that it took 8 hours and I would have to miss out on my family for another day).

I was hugged and kissed and asked a ton of questions.

"How was treatment?"
"Did they get the IV in okay?"
"What are your counts like now?"

After a little while, I went to my bedroom to lay down.

I felt weird.

That's the only word I know to describe what I felt.  I didn't feel sick but I didn't feel normal so I went out to the kitchen and sat at the table with my Grandma, Mom, and Auntie.

"Mom, I don't feel right."

I was sitting on a chair, leaned forward with both my hands on my head.  Then it started to happen.

My jaw started to tremble uncontrollably.

I slowly put my hands down and looked at mom.  Then the tears started to flow.

In that moment, I knew that I was having another reaction.

Unfortunately, my little cousin walked over to ask my Auntie a question at the exact time this all happened which left her confused (and very intrigued because health topics have always interested her).

Mom helped me back to my bedroom and got me to lay down (and as most of you already know, my bed is easily my favourite place on the planet so my Mom didn't have to tell me twice).  So far it was just the trembling but shortly after, my muscles were beginning to go into 'fight or flight' mode too.  Mom called the Royal University Hospital to find out if Dr. Pearson was on-call.  Thank God he was.  Mom handed me the phone once the call was directed his way:

"Hello"
"Hi Dr. Pearson, it's Tianna"
"I know, what's going on?"

Clearly, his response was enough to show how wild my platelets have been and how much work he had been putting into my case.

Mom, Dr. Pearson, and I talked about what to do.  Dr. Pearson recommended certain medication to give to me while I was having my reaction.  Mom followed his directions which did end up easing my reaction.

While on the phone, we also discussed what we should do about the next course of my treatment that was supposed to take place the next day.  It was decided that there was no way I could get another dose of IVIG ever again so needless to say, I did not return to the Nipawin Hospital.

"Tianna, maybe we could keep doing IVIG treatments and then giving you the medication that Dr. Pearson recommended.  That way if you react we can deal with it right away."

I responded with,

"I would rather die than have another reaction again."

After our phone call with Dr. Pearson, I laid in my bed and rested for a couple of hours before returning to the living room.  Mom proceeded to take the IV out of my hand.  I knew that she was a nurse and had experience but this did not make it any easier to watch.

My counts were up by about 15 platelets after this course of treatment, leaving me with minimal energy levels.  I got through my reaction and I got through the February break quite smoothly but I was feeling quite hopeless with low levels and now, no way to treat my ITP.

***

Bloodwork was happening every single week.  We wanted to catch a pattern and be ready for any significant drops.  My symptoms were all out of whack.  

Petechia all over resulted in higher counts than normal

Excessive bruising resulted in higher counts as well

The whole "No news is good news" should've been "No symptoms is good news" but that statement didn't match my case either.  

I was exhausted ALL the time which really wasn't an indicator of anything anymore.  My "As needed" on my lab req. became always.  I always needed my blood counts checked and I always needed to be on top of everything.

My Platelet Graph since December

Since my first big reaction, I was put on Dr. Pearson's "ITP Check-in List" meaning that he would call me every Thursday to check in on me.  After I reacted a second time, he gave me his cell phone number.  He texts me often to check in on me and I text him whenever something about my health changes or whenever I have any questions.

Again, I'm likely one of the only 18-year-old girls who tells her hematologist almost as much as her own best friends but that's just one of the many things that makes my story so unique.

***

In the middle of March, I went to Wynyard to see my boyfriend and his family.  While I was there, a huge snowstorm hit, making it almost impossible to go anywhere, even across town to the hospital.  The night before, Carson and I were talking when he noticed this red dot in my eye.  It was a single spot of petechia that wasn't new to me.  This exact dot would show up whenever my counts were low.    Then after looking closer, we noticed that there were petechia all around my eyes and on my eyelids.  I immediately texted Dr. Pearson and told him about this dot in my eye and the other petechia.  He insisted that I go for bloodwork in the morning.

I got my bloodwork taken but they told me that I likely wouldn't get results until the next day.

*Side note: Every lab is different.  Some labs will tell you your counts when they know, some will print you a paper, and some won't tell you anything at all.*

I got back to the house and texted Dr. Pearson saying that we wouldn't have results until the next day. He told me that with the symptoms I had described, it would be best for me to start treatment.

Now I probably have you all confused because I just finished stating how I can't have another treatment.  Dr. Pearson and I discussed other types of treatments and our Plan B treatment was a steroid.

Prednizone is the steroid that everybody talks about for ITP (and a multitude of other things) but I was refusing for a few reasons:

1. I got told that I was going to have to try prednisone back when I was still enrolled in University - not the best time to add yet another thing to my already overflowing plate
2. It causes sleep problems which I already have enough of without the prednisone - believe it or not, I actually have a difficult time falling asleep and have had this problem since I was a baby. Sometimes my family calls me nocturnal and honestly, they aren't far off.
3. It causes mood swings that can be extreme - I already experience those and I don't think anybody could tolerate me if they got any worse
4. It causes acne which I have been fighting for years and finally have been on top of recently - you gotta be crazy to expect me to jump back into that battle again
5. It causes stomach issues like nausea and bloating which I had been dealing with for the past 6 months - again, you gotta be crazy.

Basically, there are so many side effects that I had already had been dealing with making it so NOT worth it. 

Dr. Pearson had arranged for me to try a 4 day course of Dexamethazone which is a steroid similar to prednizone but done in a shorter time frame.  

I went to the Pharmacy and picked up my course of Dexamethazone.  I was instructed to start taking it at night and then take it for the next few days.  

The next morning, I texted Dr. Pearson about my insane mood swings and weird appetite.  He told me that it was completely normal and basically to expect the unexpected.  

I made it home and explained to my parents what had been going on, basically warning them about my emotional state.  Mom asked me if I would like to go to my cousin Mackenzie's NE hockey game in Nipawin the next night and I literally responded with:

"Mom, I don't know if I will be socially acceptable by tomorrow night."

I didn't know what to predict.  I had another laugh/cry attack on the couch that night which entertained both of my parents.  Aside from that, my mood swings leveled out and I convinced myself that I should go to the hockey game to support my cousin.

Once we got to the rink, every loud sound made me tear up and want to cry.  I was a nutcase but trying to play it cool.  I was thankful when the game was over, even though I enjoyed it.

I took my last course of the steroid and then waited a week to get blood work.  

Here's the pattern:

March 16th, 2018 - 29

March 23rd, 2018 - 74

March 27th, 2018 - 123

April 3rd, 2018 - 103

The pattern continues but basically, the Dexamethazone worked.  It sent my counts up.  Although they still fluxuate, my counts have been more stable at a higher count.  

***

In May, we travelled to Eatonia for my cousin's First Communion and Conformation.  Despite my counts staying high, I wasn't feeling very well.  This time it was my stomach again.  

(How cute is Shayla though??)

To give some backstory...

I have been the biggest fan of milk products FOREVER.  I love basically every milk product.  For the past few months since my H. Pylori was cleared, I had been in denial.  Every time I ate a milk product, my stomach would kill me.  The stomach ache got worse each time but it was tolerable. 

Until this.

Basically, Mom, Janay, and I were travelling to Eatonia.  We left later in the day which gave me time to go to my grandparents and have a milkshake with Grandpa Dan (Grandma Myrna makes the best milkshakes ever).  Anyways, once we finally hit the road, I was in the very back of the van, Mom was catching up on some work stuff in the passenger seat and Janay was driving.  We were about 10km outside of the Choiceland Co-op where we usually stop to fuel up and/or use the restroom.  Unfortunately, I got the typical stomach ache I usually get after eating or drinking a milk product.  Except this time, the stomach ache was unbearable.  I started to sweat and get lightheaded.  I made Janay turn down a dirt road so that I could get out and go to the washroom.  

Needless to say, I am not in denial anymore.  It took me until I had to LITERALLY squat, on a dirtroad, in a rain storm, to know that I am CLEARLY lactose intolerant.  

Aside from that pitstop on the way down, everything else went as planned.  My stomach continued to bother me because I still ate everything that was served, lactose or not.

After that weekend, we returned home and I worked to cut out lactose as much as I could without using pills.  The following weekend we were to drive to Kitscoty, Alberta for my cousin, Jaxon's graduation.  A couple of days before we left, I came down with a brutal cold.  Of course, any hit to my immune system results in a hit to my platelets.  My platelets dropped from the 100 range to the 60-70 range.  Don't get me wrong, 60-70 is still good.  The amount I dropped by is what bothered me.     Aside from me feeling like shit due to more than one reason, we got through that weekend as well.  

I went to Wynyard again when I got back home from the grad.  When I arrived, Carson handed me lactose pills. (Again, so thankful for Carson!!)  Ever since then, I have been using my pills to get me through meals that have lactose hidden inside of them.  The thing with changing a diet so suddenly is that it's hard to remember to take pills before eating specific foods because I've never had to before.  I often forget my pills and have to make people turn around so I can go back and get them or I run out and forget to pick up more.  It has only been 2.5 months of cutting lactose out but it has been a HUGE change in my life.  

(PS- if you ever see me not eating much or at all somewhere - it is likely because I forgot my pills and can't take the risk of getting sick - I'm embarrasingly forgetful)

***

To get you all the way caught up to where I am today, my counts have remained stable.  I am still lactose intolerant and feeling much, much better after cutting it out of my life.

There is one health issue that I haven't mentioned before that has recently come up.

Since last summer, I have been having troubles breathing.  I gasp for air.  I feel like I can't breathe so I gasp or yawn to feel relief.  Originally, I blamed it on my back,

Something must be out of place causing my breathing to be funny

Then I blamed it on a cracked rib,

I have all the symptoms of a cracked rib, it must be that

Then one evening while I was in university, Mom came over.  I found out that I had a scholarship deadline in literally an hour and I hadn't even started applying - Yes, I am an extreme procrastinator on top of being very forgetful!  Instantly I couldn't breathe.  I was gasping for air.  I couldn't breathe as soon as something began to stress me out.  

Anxiety, I thought

Finally, I went to a doctor about it and she sent me to get a Spirometry test to check my lung function.

After getting my test done, I was sure that I couldn't breathe properly because who on Earth can exhale for so damn long?!

I got a call from my Nurse Practitioner saying that she wanted to see me.  Basically, my breathing got significantly better after taking the blue inhaler.  My N.P. told me I have asthma and it has been flaring up, therefore I need to be taking my blue and orange inhalers.

I got diagnosed with asthma approximately a month ago.  I had been taking my inhalers every single day,  WAY more than prescribed and getting no relief.  

I kept saying to people,

I don't think I have asthma, I have anxiety.  These inhalers aren't working!

On Wednesday, I went to work.  I was working away when I felt like I couldn't breathe so I took two puffs of my blue inhaler and I reached for my orange inhaler when nothing came out of it.  I quickly walked to my boss's office and asked if I could run to the Pharmacy to get a new inhaler.  With his approval, I rushed over to the Pharmacy and told them what had happened.  The pharmacist was filling me a new inhaler when she asked how many times I use it a day.

"Lots..."

"Like more than twice a day?"

"Yes.. lots..."

Basically, the pharmacist told me that I've been overdosing on my inhalers and that I need to go to the doctors office and book an appointment because clearly my inhalers aren't solving my problem.

I get back to work about 15 minutes later and call my mom to tell her what they had said at the Pharmacy and to tell her that I still can't breathe.  She told me to book an appointment but I insisted that she call to book me in.  

"Go to the clinic now, I got you an emergency appt"

So I texted my boss saying what was going on and rushed over to the clinic.  My N.P. looked at my charts and told me that my lung function and oxygen levels are normal.  The inhalers did help during my Spirometry test but my baseline levels weren't a concern to begin with.  She proceeded to do some more testing and asked me questions, diagnosing me with anxiety.  

Ironically, the testing alone made me anxious.

She prescribed a pill that is strictly to help with anxiety, sleep and apetite.  I was also instructed to stop taking my inhalers because they were increasing my anxiety.  

I started my anxiety medication on Wednesday night.  I didn't know what to expect but it knocked me out for 13 hours.  I spent the rest of the day on Thursday barely being able to function.  I had negative amounts of energy.  I spent the entire afternoon napping.  My boss told me to take the day off of work to rest but I was still supposed to babysit that evening at the lake.

I asked my sister if she would like to go for ice cream in town, hoping that the ice cream would give me more energy.  She agreed to drive if I paid.  It was a deal.  

Mom had bought me Regular Strength lactose pills instead of Extra Strength so I took 4 pills with me for my ice cream, assuming it would be enough.  It wasn't.  

As soon as I finished my ice cream, I looked at Janay with panic in my eyes and said,

"Janay, we need to get home, NOW"

So I quickly paid and we got in the vehicle to get home.  I kept telling Janay to drive faster because I felt SO sick.

Of course, Janay decides this is the time to become an animal lover!  She slows down in the middle of our road and says in a cheerful, loving voice (like the true 'animal lover' she really is),

"Tianna! Look at the cute calf!"

The animal loving side of myself did not shine through.  I didn't care about the calf or anything, for that matter, except the toilet.

We got in the driveway and she was slowing down to park when I jumped out and ran into the house to go to the washroom.

My dad, standing on the front lawn must've almost fallen over.  I hadn't moved that fast in... well.... ever.. and I jumped out of a moving vehicle.

To put this into perspective, when I get sick because of lactose, I'm usually sick for a couple of hours.  In this moment, I had 10 minutes to be sick before I had to leave to get to the lake on time to babysit.  Unfortunately, life doesn't work like that.  Janay was my only hope so she got in her vehicle and took off to go babysit for me.  

I finally started feeling better around 8:00 that evening, aside from being overly exhausted.  I finally got to bed and slept perfectly fine until 4:00.  I felt so nauseous.  I phoned my mom and said,

"Mom I need a bucket, I'm going to puke"

She came running with a bucket and I threw up.  After awhile I fell back asleep.  

I took the day off work today because I have felt so gross and drained.  

Here are some things I have learned:

1. IVIG reactions are absolutely brutal
2. You can still eat ice cream when you are lactose intolerant (THANK GOD), but you better damn well be sure you have the right kind of pills or easy access to a bathroom.. not kidding
3. I will never have just one health problem... I will have multiple and they will all hit me at once
4. An excessive amount of snow makes it really difficult to get across town especially when you have to help pull other people out of snowbanks in order to get past
5. Always check the lab's hours, especially on a snow day
6. Dexamethazone is kinda totally random and fun (but I don't want to have to do another course of it)
7. Mom can get out of bed, into the kitchen, and back to my room within 30 seconds when I call her saying I'm gonna throw up - pretty speedy for a not-so-speedy person! 
8. It is okay to take a day or two to myself to rest and recover
9. My week wouldn't be complete without a text message from my Grandma Colleen saying, "Counts?"
10. Again, I have some of the best people in my life supporting me

Basically, my life has been chaotic since day one.  If it's not one thing, it's another.  I've been trying to keep busy because it distracts me from what is going on inside my body.  

I recently got a job (like I've been talking about) and it was really scary to make such a big commitment after so many months of being unpredictably sick and unstable.  Right now, I might be as healthy as I ever will be so I am taking advantage of it.  It means a lot to me to have gotten hired because of how sick I have been.  I am simply someone that my employers are taking a chance on, and I can't thank them enough for that.

Again, thank you to everyone who has been supporting me.  This journey is a wild one but I wouldn't be gettting though it without all of you.  

Don't worry, my story isn't over yet.

Your fragile friend,

Tianna