As I write this, I am in tears.

On April 6, 2018, 16 people were killed and 13 were injured when a transport truck struck a coach bus carrying the Humboldt Broncs.

I am not here to tell you the story of this tragic, life changing event. I am going to focus on one person, one action. Logan Boulet.

After Logan lost his trainer, who was a registered organ donor, Logan sat on his back deck with his dad and told him he wanted to be an organ donor. He made this known throughout his friends and family.

Rumours swirled the first few days after the accident. There was still questions as to what exactly happened and who was hurt.

Logan’s family was told his neck and back had been broken and that his brain was no longer functioning. Logan’s parents knew his wishes. They had time to say goodbye while things were put in order for Logan’s organs to be donated. The surgeon said that Logan’s heart was the strongest they had ever had the chance of transplant. That day, Logan saved 6 lives. His heart, lungs, pancreas, kidneys, liver, and corneas went to those in need. But what did this mean? That was when the rise of organ donors began.

Following Logan’s story, 30,000 people in Alberta registered as organ donors. Across Canada, it was close to 100,000. In Ontario, about 42 people register to be an organ donor a day, this number jumped to 800 per day.

Logan made the simple choice of signing the back of his driver’s license when he turned 21. One person signed their organ donation card, and it inspired 100,000 more. But why did it take a tragedy for Canadian’s to realize we can all save at least six lives?

As most of you know, I have been very lucky (and am extremely grateful) to of received two double lung transplants over the course of four years. Currently, there are 1,657 people on the wait list for organs in Ontario. There are currently 168,650 people in Ontario registered as organ donors.

I have started a campaign to get as many people as I know to register as an organ donor. If you don’t know if you are registered yet or not, you can check!

Here are links that Sports Illustrated published about The Logan Effect:

https://www.si.com/nhl/2019/03/07/logan-boulet-effect-humboldt-broncos-bus-crash-legacy-canada-organ-donations

On Monday, I had to get some more insulin. I went to the pharmacy, ordered it, and they said it would be ready in 20 minutes. I went back and they told me how much it was. I found this odd as my insurance always covers it, so I thought the pharmacist was just letting me know the cost. Nope. I had to pay out of pocket for my insulin because my insurance had not covered it.

Lately, the media has been telling the story of the rising cost of insulin. Let me break it down for you.

Over the past five years, the cost of insulin has DOUBLED. In 2012, it cost $12, 467 annually for a diabetes patient. By 2016, the cost rose to $18, 494. The average out of pocket spending for insulin, jumped from $,2000 to $5,000.

In the U.S.A., 7.4 million Americans live with diabetes and approximately 40,000 new cases are diagnosed every year. In Canada, 3 million Canadians live with diabetes and close to 200,000 new cases are diagnosed every year.

Ah, the monopoly of insulin. Isn’t that great? There are three companies that have the largest game in the insulin market: Eli Lilly, Novo Nordisk, and Sanofi. These three take up 90% of the insulin market. Because of this, they set the price for their insulin. Meaning they can raise the cost at anytime!

The average cost of an insulin prescription, has gone up over $200 in just three years!

Due to the cost of insulin rising, patients have started rationing their insulin. Meaning they may not be using how much they need to use to stay alive. This can cause their kidneys to suffer and the patient has a high risk of going into diabetic kept acidosis. DKA is when your body starts producing large levels of ketones. When your body can’t produce enough insulin to deal with the rising sugar levels, your body starts feeding on fat instead of glucose. In the media, due to the rising cost of insulin, we have seen a lot of death due to DKA.

How can we stop losing so many to complications from diabetes and DKA? Start offering insulin at a more affordable price than what is currently being implemented. Physicians have started prescribing newer, higher priced insulin to their patients. Patients also need to become aware of community assistance programs that can help cover the cost of insulin.

At the end of the day, there needs to be more education about diabetes, insulin,  and community access programs.

P.S. Just because I have diabetes, doesn’t mean I can’t eat candy.

On March 2, I was lucky enough to see an advanced screening of Five Feet Apart.

For those of you that don’t know, Five Feet Apart is about three people with Cystic Fibrosis going through treatment in the paediatric ward of a hospital. One is in hospital for a drug trial, one is there for a tune up, and another is waiting for transplant.

As most of you know, I have Cystic Fibrosis. I have had two double lung transplants. I have been in situations these characters have been in.

When talk of this movie started, everyone was very worried that it wouldn’t portray CF in the right way. Well, you were wrong about that. It is NOT the doctors or nurses who allow these two characters to be together. It is the characters OWN choice, to put their lives in danger. For those with CF, have you never put your life in danger so you can just live a little?

All contact precautions are followed. Gloves, mask, gown, booties, you name it! They follow infection control to a T. Every patient has a mad cart, does inhaled treatments, does physiotherapy using a vest, goes to the physiotherapy room to get exercise in, takes about 200 pills a day, they are on oxygen, they talk about death. This is Cystic Fibrosis. This is leaving your house or hospital room to risk your life just so you don’t down in your own bodily fluids (Hint: “Having CF is like drowning, but instead of water, it’s our own bodily fluids” is a line from the movie).

Having a chronic, terminal illness can cause severe mental health issues. You can become extremely anxious, depressed, and develop OCD. All of these are show cased in the film. One character is depressed and has stopped doing his treatments all together because he knows he is going to die anyway. Another patients is very strict with her regimen to stay alive. She built an app for her phone to remind her to do her treatments and take her meds. “I’ve been living to do my treatments instead of doing my treatments to live”. (Another line from the movie).

I can honestly say I have been in the “I’m going to die so why bother fighting?” scenario more than once. There was one day waiting for my second transplant. I couldn’t leave my hospital room without having a panic attack. My anxiety was so bad, I was being treated with morphine, gravol, benadryl, and ativan. I couldn’t even sit up in bed without needing help. Any pressure on my abdomen hurt. I didn’t have the strength in my arms to pull or push myself up. I needed a wheelchair to get to the bathroom in my own room. I couldn’t breathe through regular oxygen nasal prongs because my sinuses were so congested. I had to use a full face mask. The breathing treatments I was doing were leaving my face very sticky. Every time we took off my mask, bits of skin would come off with it, just ripping my face apart. I sat there with my mom, telling her I couldn’t do it anymore. I couldn’t breather, I couldn’t walk, I couldn’t take my medication without help, I couldn’t even handle her leaving the room to get a coffee without just about suffocating. When my mom left the room, my nurse would have to come in and sit with me. One night, was just awful. I couldn’t settle down. A particular nurse, Zubaida, came in every 20 minutes and would rub my back for about 5 minutes so I could settle down. I sat down with my mom and my doctors. Telling them I wanted to go on life support and that I was done being a burden on everyone. The doctors informed me that if I went onto life support, the chances of me getting lungs would drop significantly. I chose not to go on life support. Two days later, I was rushed to the ICU because my CO2 levels were so high, I was border line in a coma. just eight days later, I received the call. I was getting new lungs. On June 4, 2017, I received my second set of donated lungs.

Now, I am 100% on top of being healthy. Looking after myself. Advocating for myself. Doing what I need to do to give these lungs more than a “five year shelf life” (another line from the movie). I make sure I eat right, I get on antibiotics as soon as I have the smallest tickle in my throat, I exercise, and most importantly, I advocate for those that can’t anymore.

There was also a lot of comparison between Five Feet Apart and The Fault in Our Stars. In the book and movie, The Fault In Our Stars, it is about two cancer patients. Cancer cannot be passed down from person to person. With Cystic Fibrosis, one bacteria that is primarily in found in patients, can we lethal and passed down from one CF patient to another. This can be from just touching the same door handle. Cancer and Cystic Fibrosis are both terminal illness’. There is no cure for either. With cancer, you can be treated with aggressive radiation and chemotherapy and still go on to live a healthy life. With Cystic Fibrosis, you can be on oxygen, have a feeding tube, be on IV antibiotics, had a lung transplant, and you will still be considered a ticking time bomb. The slightest sinus infection can turn into a full blown chest infection. Obviously there are the same dangers with Cancer. But with CF, there is already too much damage to the lungs for recovery to happen most of the time.

In my opinion, Five Feet Apart showed the good, the bad, and the ugly of living with Cystic Fibrosis. I am very proud of Claire Wineland for helping them with this movie. Teaching them how to cough properly, about the treatments, the medication. I can relate to each of the CF patients in Five Feet Apart and I know many others will be able to as well.

Five Feet Apart: In theatres March 15, 2019.

Over the past month, I have dealt with more trauma and devastation than anyone can imagine.

July and August have been unimaginably painful. First, I had shingles. I worked through the first week of them but the second week I needed to stay home and let my body rest. Second, my mom’s cancer came back. Yup. Cancer. The big C word. The cancer is being treated with chemotherapy and she is doing so well handling it all. We can’t thank those around us enough for their support. During all this, my best friend was sitting in the ICU on a ventilator fighting for her life. August 8th I got the call. My best friend was gone. Two days later, I turned 22. I spent my day working before travelling to North Bay the next week.

Fast forward to August 18 when I arrive home. I do as much as I can before returning to work. As I was getting ready, I felt the oh too family pain of a gallbladder infection. I called into work, drove myself to the emergency department, and was admitted to treat an infection. Two days later I lost my job because I was “unreliable”. That was the day I asked for a psychiatric evaluation. I got a date for a meeting with a counsellor at the Homewood in Guelph.

At this time, I have decided to not attend school in September. Out of all the aspects of my health, I have never taken the time to work on my mental health. We are hoping tomorrow I will be able to be admitted to an in patient program to work on my mental health.

You may not see updates from me for a while as I take time to do this. I will have my parents update as necessary.

 

 

Having a transplant and a second chance at life allows to do so much. You have a higher motivation to get out and do things because you finally can. The one key to this, is having positive influences surrounding you.

Lately, I have had a lot of negative energy hanging around me. This led to me taking 3 weeks off from the gym, sleeping almost all day, and hardly eating. This called for some tough decision making, and with that, comes stress.

As much as I loved being a personal trainer, I didn’t find joy in it anymore. I wasn’t motivated to help people lose weight, I wanted to work more with injury and sports rehabilitation. This led to me closing my business. At first, I viewed myself as a failure. I started a business when I was 19, and just two years later I was closing it. The day I decided to do this, a huge weight was lifted off my shoulders. I already felt more relaxed! I am so grateful to have such supportive parents who recognize that sometimes I push myself too far and need a break. Doesn’t everyone need a break from reality every once in a while?

After transplant, a lot of my friends started to fade away. They would come to the hospital to see me, but I could tell it was all too much for them. Slowly, they stopped asking to make plans, then they stopped even checking in on me. They carried on with there lives and I was stuck waiting for them to come back. When I realized that those probably weren’t the best friends since they walked away so quickly, I started to make more of an effort with the friends who did stick with me. It works both ways.

Living my best life means doing what is best for me, not others around me. Being able to focus on my own physical and mental health is going to mean big changes in my life. I’ve started seeing things clearer and being the bigger person in situations. It’s only been one week and I’m already feeling better. Let’s see what living the rest of my life like this is going to bring me.

In April 2017, I was placed on Quetiapine to help with my anxiety and depression. This medication is normally used to treat schizophrenia and bipolar disorder. My psychiatrist made it very clear to me when I was placed on Quetiapine that I did not have schizophrenia or bipolar disorder. This medication was added to my other medications for my mental health to help me think more clearly, feel less nervous, and improve my sleep. I mean, I was waiting for a SECOND double lung transplant, of course I was nervous and couldn’t sleep.

As my health has improved greatly since then, my psychiatrist and I agree it is time for me to come off it. I have been working hard to decrease my dose since December 2017. Unfortunately, something in life seems to strike every time I try and I end up needing to go back to my original dose. Since my last appointment with my psychiatrist, March 6, I have been able to stay at half of my original dose! This is a huge accomplishment.

The reason I am ready to come off this medication is because of the side effects I have been experiencing the past few months. As a diabetic, it is already hard to control my blood sugars. Unfortunately, Quetiapine can be a culprit when it comes to high blood sugar. I have also experienced increase weight gain. This wouldn’t normally be an issue for Cystic Fibrosis patients, but I’m gaining an unhealthy amount of weight in such a short period of time.

Don’t get me wrong, it has been difficult. The first week I didn’t do much. I was extremely emotional and very paranoid. My poor boyfriend who stuck with me through it all. I can’t thank him enough for being there for me during a very difficult time. I was questioning a lot of things in life. I was out of tune with life. I spent most days sleeping and just waking up to eat and check my phone. I started bottling up my emotions and letting them get the best of me and then having breakdowns. I also lost all structure in my life. Because I was just eating and sleeping, I wasn’t working out or working, and I definitely wasn’t eating healthy. I also become very self conscience of my body. I saw that I was gaining weight, what kind of weight I was gaining, and where I was gaining it.

Since that first week, I have been able to accomplish more and more everyday. I started walking my dog, Felix, almost everyday. I have been able to wake up between 8AM and 9 AM everyday, instead of 11AM. I have been able to plan and prepare my meals for an entire week, making it easier to eat healthy. I’m slowly getting back in the gym and have three 5K runs plans between April 14 and September 15! For someone who has had two double lung transplants, being able to run in general is kind of a big deal.

I still struggle with mental illness everyday. I still wake up everyday a little bit nervous of what the day may bring. There are days I need mental rest, to just tune out everything and focus on myself. This is not selfish, this is self care. Looking after your mental health is just as important as focusing on your physical health. Most of the time, these things fall together. Getting up early, eating right, exercising, and drinking water, is both good for your physical and mental health.

My mental illness will always be something I struggle with. It is NOT something that someone can just snap out of. I have a chemical imbalance in my brain and it is being treated with medication. This does not make me weak. This does not make me useless. This does not make me crazy. This makes me a fighter, a survivor. This makes me someone who has a battle ahead of them everyday and still gets out of bed.

If you or someone you know, please reach out. There are organizations out there that can help you. Reaching out for help does not make you weak. It makes you strong for speaking out and speaking up for yourself.

Stay strong, I am here with you.

March 24, 2015. My first double lung transplant. Weird, first. You never think of having more than one. Actually, you never really think of needing one in the first place.

When my lung first collapsed on February 4, 2015, I knew I needed a transplant. I didn’t have to ask the doctors. I was at the hospital in Barrie and they didn’t know half the medications I was on. They didn’t even know how to treat me. They didn’t start antibiotics right away, which is normal protocol for every Cystic Fibrosis patient. They put in a chest tube and said I would be out of the hospital in a few hours. This turns into a few months. I can’t entirely blame the hospital for this, but I kind of can. They refused to contact my specialists in Kitchener, Hamilton, and Toronto. What kind of general doctor doesn’t want to work along side a patients specialist to do the best for their patient? It baffled me. When my declining health finally convinced the doctor to have me transferred to Toronto, I knew I was going to a safe place and I would get the help I need.

When I first arrived at St. Michael’s Hospital, I went straight to the ICU. There were just curtains separating the beds and two isolation rooms. I was in one, an inmate in the other. I was only here for a few days before I was transferred to Toronto General Hospital to be assessed for transplant. I was told the only way they would see if there was anything they could do for me, was if I agreed to transplant if that became the only option. Of course I said yes. I had a fighting chance. I was so sick and falling apart but I was still fighting. I never stopped.

My assessment took four days. Average time can be a few weeks to a few months, and then waiting to hear if they approve you to be listed. Day five we heard I was listed. 16 days later on March 24, 2015, I was having old, diseased lungs replaced with pink, fresh ones from a selfless donor.

I had a hard time after. I spent seven weeks in ICU. I had fluid around my heart, I went into cardiac arrest, I went into a second surgery to have the fluid removed. I weighed 90 pounds going into surgery and left the hospital seven weeks later at 100 pounds. I was able to walk on my own and without oxygen. I was able to continue fighting.

That’s the thing with chronic illnesses, Cystic Fibrosis, transplants, you never stop fighting. Even if you aren’t fighting health issues, you’re fighting for others who are going through the same thing. You become an advocate not just for yourself, but for others too.

Some may question why I am still so thankful for this first set of lungs I received. Those lungs gave me another two years of fighting. I was able to get a puppy, I was there the day my nephew was born, I’ve been able to attend multiple concerts with my best friends. I was able to start a personal training business and help people work towards a healthier life. I found someone who supports me through my good and bad days, making me feel like an absolute queen. I was able to LIVE two extra years I may not of gotten.

Yes, I went into rejection. Yes, I almost lost my life again. But, I got an extra two years. I will forever be grateful for my donor and March 24 will always hold a special place in my heart.

Here’s to another year.