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Amanda’s Journey

by Amanda Saunders

I would like to preface this post by thanking Laura for the wonderful opportunity. This is truly a dream come true!

So, my health journey is a long and twisty one. But I take pride in the fact that medical professionals call me complex and complicated. I get wide-eyes and gasps of surprise at nearly all of my appointments and tests. I even won awards amongst my doctors for having experience some odd medical situations, and I am still waiting for those awards in the mail by the way. As challenging and overwhelming it is at times to be one in a million (literally), it’s what makes me, me. I can honestly say that I wouldn’t want it any other way. My health journey has been my greatest teacher.

Amanda’s Journey began in April 2018. At this time, I was a 21-year-old university student living in Newfoundland. I just finished my exams, and I was gearing up for a summer at home and working. I was just living my best life! Although, something new was starting to pop up. I was experiencing shortness of breath, I found it harder getting around, my appetite decreased, and I was sleeping more. As my favourite human on earth, Taylor Swift, would say, I would just “Shake it Off”. I blamed it all on me studying so much for exams that I just became a little lazier and that was that. I was COMPLETELY wrong.

At this point, I was already on medications for my heart due to some rhythm issues. That quickly changed. I went in to my local ER in June 2018 and that’s when my life changed truly forever. They took an X-ray of my chest, and the ER physician that night told me that it is impossible for my heart to be that big and the cardiologist will take a look at it in the morning and do more testing. That was the start of the wide-eyes and the sounds of shock. Turns out, a heart could be that big and that I was in full blown heart failure. How on earth could a 21-year-old be in end-staged heart failure? Isn’t that an older person’s problem? Well, I’m here to say that age is not a free pass to “old person” illnesses. Anything can happen my friend!

After medication changes galore and cardiac device implantations, I became even more ill. I was becoming the Michelin Tire Doll’s twin as I was filling up with so much fluid because my heart couldn’t pump enough to get rid of it. I would sleep 17 hours a day, I virtually could not eat without getting stomach sick. I was a mess. But this mess went back to university for her fourth year. I went 11 days after getting my cardiac device implanted. Six weeks into the semester, I said enough was enough, and I came back home. That completely broke me.

A few weeks later, in November 2018, I was admitted to a hospital that was 4.5 hours away from my home. My doctors told me that I was too unstable to be on my own. Three days into that 16-day stay was when I was told that there wasn’t anything they could do and I was to go to Ottawa for a possible heart transplant. A HEART TRANSPLANT? ARE THEY KIDDING? I was never ever speechless until that moment. I’m a talker, but they really knew how to shut me up.

On November 28th, I was in the air ambulance flying to Ottawa. We started the transplant evaluation process right away. There was no time to waste. Eight days later, the scariest day of my life happened. During a procedure, I crashed. I was going into cardiac arrest. I was in this procedure room with doctors and nurses yelling at me to keep my eyes open and stay alive. All the while they were hooking me up to oxygen masks and pumping me with medications to keep me from getting worse. I was as blue as a Smurf, and my vitals were in the tubes. My heart was damaged beyond repair. It was during this point where a transplant cardiologist ran into the room and told me the team and her were having an urgent meeting to put me on the transplant list. There was no other way. A heart transplant was my only hope. My only hope for a future and survival.

My first thought once the shock settled was, let’s fight. I will come out of this situation one way or another – dead or alive, but hopefully alive. In the meantime, I made friends with my nurses, doctors, orderlies, maintenance staff, allied health professionals, other patients in the hospital, and the food staff. Those connections were what got me through. I made a lot of memories with those people. They washed my hair in sinks, painted my nails, helped me decorate my hospital rooms, brought me in food, sneaked in pizza into the ICU, and braided my hair in ways that I’ve yet to figure out.

On January 22nd, 2019, my life did a 180. My nurse that day came running and screaming down the hall yelling at me to stop eating and drinking. I thought that I was going for a procedure, but I was very much mistaken. She said with tears in her eyes that a heart became available and I was going in for surgery in the next few hours. I remember looking at her and my parents with such joy and light. I said to myself, I’m okay. I kicked heart failure’s butt. Although, the surgery didn’t happen until the next day due to logistical reasons. That night’s sleep between getting the news and the surgery was the best night’s sleep of my entire life. I was never so calm.

The day after my transplant. Shout-out to my dad’s camera on his flip phone for taking this lovely shot.

Due to some complications, I didn’t wake up until four days later. My heart was having a difficult time waking up, and my kidneys stopped working. After some dialysis and extra sleep time, I came out of it just fine. My surgeon and his team picked the BEST heart. This one is going to stick with me for many years to come. Whenever I see my surgeon, I can’t help but cry. It is because of him, my donor and their family, and my medical team that I’m alive. 

It was at this point where I found out why my heart doubled in size and was told I have one of the hearts in my transplant surgeon’s history. I have Laminopathy, which is an extremely rare form of muscular dystrophy. My muscles are slowly deteriorating, and guess what, the heart is a muscle too! I was given this diagnosis during my transplant evaluation. Less than 5% of those with muscular dystrophy have the exact same one as I do, and all of us have different signs and limitations. I told you I was one in a million.

Fast forward to three months later, I was cleared to return home! I was away from my home for over six-months. I couldn’t wait to get home and start living my life the way I wanted to without my heart failure dictating what my days would look like. I can finally thrive.

Well, that came to a bolstering halt. In March of this year, two days before my 23rd birthday, I was diagnosed with Post-Transplant Lymphoproliferative Disorder (PTLD). After coming back up to Ottawa several times for gut infections, check-ups, and just feeling unwell, I now have cancer as a result of my transplant. Due to a virus becoming active and attacking my blood stream, lymphoma started growing in my GI tract. Lymphoma is a bloody mess let me tell you. This type of cancer happens in 1-2% of transplant recipients. Right? My initial thought when I was diagnosed was here we go again. Here I was just recovering from a heart transplant and getting my life back together only to have it ripped out from underneath me. I was hurt. I was angry. I felt as if someone out there was out to get me. But, just like with my heart failure, let’s kick cancer’s butt.

Thankfully, it was detected early and there are treatment options. I was introduced to targeted therapy, and I finished those treatments in early May. My one fear besides having the cancer was, what about my heart? Will that be okay? I can’t damage this one! I love it too much. My heart did absolutely amazing during treatment and it’s still beating as strong as ever. It’s a fighter.

The day I finished cancer treatment. I was on IV infusions of Rituxan for four weeks.

The next chapter in this journey of mine is that I am to have some scans in June to see what my cancer is doing. Hopefully, I’ll be deemed as cancer free, and that I can come home to Newfoundland and spend a summer away from hospitals and spending time doing what I love with the people I love.

Well, all of those hopes and dreams came true. On June 9th, 2020, I was deemed as being in complete remission. I was never so relieved. I however need four more additional treatments of Rituxan to ensure the cancer is gone for good, but my amazing hematologist was able to arrange those back in Newfoundland. That’s right! I’m home for the summer! I get to breathe in the ocean air, go iceberg hunting, eat my favorite Newfoundland treats (don’t tell my endocrinologist!), and receive plenty of puppy cuddles from my 8-pound bundle of joy, Echo. Yes, I did name him after Echocardiograms.

Amanda’s Journey changed me. While I had a change in heart and some bad blood, I learned that life is truly precious. I took so many of life’s smaller things for granted and never took the time to appreciate living at a slower pace. I cherish my relationships with those around me that much more, as you never know when life is going to throw cruel obstacles in your way. I thought I had it all figured out at 21 and that nothing could get in my way. Boy, was I ever wrong. But I was glad to be wrong. It has led me to amazing people and opportunities that I wouldn’t have otherwise. Someone very wise once told me that chronic illness is not a gift, but rather a lesson. Those are the truest words ever spoken.

June 14th, 2001

Mom and Grandpa (December 14th, 1985)

19 years ago. It was the first time I’d ever lost someone. For a moment my situation had been eclipsed by something far worse. I remember the room. I remember the lighting. I remember the colours. I remember the exact moment my mom was hearing that her father had suddenly died only an elevator ride away from her 13-year-old kid who, she had just found out, needed a new heart. I can’t even imagine the pain she must have felt. I remember her asking me if I’d mind if she went to his funeral. Asking me if I’d mind? I was fine. I never thought I was in trouble, I just wanted to go home. And I wanted to go to Grandpa’s funeral. But the heart failure was still fresh. I had just moved out of the ICU. I was severely dehydrated and only just moved onto a portable LVAD machine. There was no way I could go.

I think about it all of the time. I think about how my mom used to say “go hug Gammy and Grandpa before we go” at the end of a visit, and how shy I was. So, as I got older the hugs became less frequent and then he was gone. I couldn’t remember the last time I saw him, and I would never see him again. I walked in the hospital one day, I walked out and everything was different. Grandpa’s room remained as it was. I went in every so often while visiting my grandma just to look at his picture up on the dresser. I have that picture engraved in my brain. The only thing worse than losing someone is the fear of forgetting them.

I was a pretty lucky kid. Only months prior to this, Grandpa lived with us. We got to experience a part of him that is ours only. Some hilarious, adventurous, amazing memories that I share only with my mom, dad, and sister. We still reminisce and quote Grandpa as if he were our favourite character in the movie delivering that one line that sells the whole damn thing.

June 14 was supposed to be my first big high school trip. I had signed up to go to an amusement park. I had never been, I was top of my class, I had earned it, and up until this point I wasn’t going to be in this hospital that day, no way I was going to let that happen. Instead of an experience I would probably not even remember today. I have this one.

Every year June comes along and these are the thoughts that preoccupy my days. In a crazy way I am grateful. I am grateful that I remember the lighting, the colours, and the room. Because, the way I remember it, it was bright and calm. I was ok.  And on that day Grandpa did what he did best. He stole the show. Now, every year when June rolls around, I don’t think about my missed trip, being told I needed a heart transplant, or being stuck in a hospital. I think about my grandpa and how neat he was and how lucky I was to know him even for that short amount of time. I don’t think about being sick, I think about someone I love. That day he gave me this, a gift I will appreciate for the rest of my life. Rest in Peace Grandpa. ❤

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What It’s Like To Be A Quitter

When I was younger, I used to quit things a lot. There was a very good reason for it but it still made me feel like a loser. I used to quit things that were too hard. The first and probably worst thing I ever quit was my swim classes. Before I got sick, my swim classes were the best. I loved them; I was good at them. It was my thing. I never wanted to get out of the water. After the transplant, I had to relearn how my body worked and often it felt like I was never going to figure it out. So, when I couldn’t keep up with the rest of my swim class, I felt like I had my favourite thing taken from me. I started to feel that way a lot. Like the virus that took my heart, took the things that made me happy as well.

I believed I was ugly in this picture
because I had more weight on my body.
I was trying to hide it behind my jacket.
I wore jackets and sweaters even on the
hottest days.

There were a lot of things that distracted me from how badly I felt. I had school I had to keep up with, I had to make new friends (this could probably be a whole other post, but one of the things that happens to you when you almost die is it freaks people out and they abandon you). I had to go back to being as normal as possible. The second major thing I quit was dance. The way I feel about this, surprises even me. I didn’t know how much I loved dance. But when I felt like I couldn’t do it, like my body didn’t understand it anymore, like I lost all the skills I had earned before I got sick, I had to quit. 

High School 2004.

I remember the moment that I lost dance. I remember the exact moment when my fear, sadness and embarrassment won and I didn’t think it was worth trying anymore. The virus had taken dance from me too. I was on stage at the year-end dance recital. More than one person had made a comment about my weight gain including my dance teacher. I was on steroids post-transplant (very common) and gained a ton of weight. I got on stage right after a girl said to me “Laura, you used to be skinny, what happened?”. I had been so weighed down by everything I couldn’t retain any choreography anymore. I had no idea what I was doing. The music came on, I moved the best I could, my body didn’t seem to cooperate. I remember the music and costumes we were wearing and, in a move, where we were sitting on the floor, I looked out at the dark outline of the audience that I felt were watching me fail, and I quit. 

It doesn’t matter what you look like.

I quit dance. I didn’t sign up the next year. I never went back. I could go on and on about other things I’ve quit after that. I quit Cégep (college) because I didn’t want to do the final project. I quit university because I didn’t want to take the hard classes. There’s was a significant period where I even quit getting out of bed. I’ve quit nearly everything I’ve ever started. I quit because I didn’t want to do hard things. I quit because I believed not only did the virus take away the things that made me happy, my friends, and even control over my own body, but I believed that I had had enough hard things in my life. Had I not done enough? Had I not suffered enough? Had I not survived enough? I was exhausted and sad, uncomfortable, and tired of having to do hard things.  So, I stopped doing them. I wanted to be comfortable for once.

There is a huge problem with this story. I’m sure there are people that know me reading this now and thinking, who is she even talking about? Or at least I hope you’re thinking that. The problem is that I thought I was quitting. I thought I was a quitter. It was actually far worse than that. In that moment, when my new heart sank on that stage, when I believed the virus took dance from me too, I didn’t quit. I gave up. All this time I thought I was a quitter. Quitting isn’t even bad! Especially if it’s something that you don’t want to do anymore or doesn’t bring any value to your life. You have to quit things so you can try new things! But I wasn’t doing that. Quitting is ok and can even be important but giving up never is. 

It doesn’t matter if you think you’re not good at it.

The virus didn’t take those things from me and it never will. I’m not upset that I quit those things. What did make me upset is the belief I could never do them again. I never thought I could dance again, I never thought I could get a degree, many of us don’t believe we’ll get through this insane pandemic. None of those thoughts are true. 

After years of burying my pain I got to a point when I realized burying became harder than dealing with it. So, I stopped burying it. (This may be where my therapist friends may get excited. I’m sorry to disappoint you.) I realized my life was still my own and I needed to make it a heck of a lot better. First, I needed to get out of bed. My parents helped me a lot with this. (They bribed me. Who doesn’t like a good bribe?) Then I got a job. I started doing the hard, uncomfortable things. 7 years later, here I am. The healthiest I’ve ever been. My latest discovery, an online dance program that I absolutely love. I now dance in my living room 5 days a week. 

Sometimes you really do have to let things go, but that doesn’t mean forever. The things you love will come back to you. You’ll get through it. I know you will. Stay safe ❤️

It only matters that you do what you love and never give up.

Shift Change

“It’s 7 o’clock” I said to my mom nervously. 7 o’clock. I dealt with so many scary things every day. 7 o’clock was another one of those scary things. I inhaled deeply and tried to exhale my fear of who might walk through the door. They never came in right away. Of course, I wasn’t the only there. There were many of us. Not all of us were as fortunate as I was. Not all of us were even aware of the importance of 7 o’clock. But I was, I always was.

I always wished for a certain person. In the beginning I didn’t know them yet and I had one or two favourites. There were few people that I felt comfortable around and I always wished for one of those ones. As time went on, my list of the people I wanted to see walk through that door became longer and longer. I eventually stopped worrying about who’d walk in and started looking forward to getting to see another one of my favourite people.

I didn’t talk much, but for some reason they still liked me. It didn’t matter what I did. It wasn’t because I was there that they had to like me. They didn’t have to, they simply did. I knew they did.

They were all different and they were all special. It took me awhile to realize just how long I’d be there, but they knew from the beginning. I remember the first one I met. I had just moved and there she was. She met me and she was so angry. I wasn’t afraid though. Sometimes anger is a sign someone cares. I knew that’s what this was. She was angry because she felt I hadn’t been properly cared for. I, of course, didn’t know that but I knew from then on, I would be.

The next day, as I remember it, at 7 a.m., I met another one. I sat there and she came in. I remember her saying something to me, but I don’t remember what it was. I was more interested in her than in her interest in me. I remember her having a country twang to her voice, blond bouncy hair, and a total no bullshit vibe. I found out quickly that I was right about the vibe. I could usually tell right away when someone was going to be a good fit for me and I was certain she would be.

As time went on, my new family grew bigger and I started spending more time with them. Some brought their favourite nail polish shades (red, redder, and even redder). Others made sure my daily slice of chocolate cake was always on my lunch tray. All of them made sure those  trays were taken away before the smell could linger in my room. I never ate the “food”, except the cake – the only exception. My mom brought me 3 new movies every day from the video store. Sometimes, they’d borrow my movies at night while I was sleeping. Always with my permission of course.

They always had tips and jokes and all kinds of things to make me happy. One of my favourite memories was when one of them treated me to a pizza night. I was often nauseous and didn’t eat much but there’s never been a time in my life when I couldn’t eat a good ol’ pizza. She told me we’d eat pizza together and watch whatever movie I wanted! And we did. We ate pizza and watched Die Hard which some may consider an odd choice for a 13-year-old. I’m not sure why. Of course, she had to leave every so often to spend time with the others, but I didn’t mind. She made me so happy.

One of the most special gifts I’ve received in my life came from one of them. She came in one day with what I thought was a rock. She put it down on the table in front of me. It was a nice rock. Kind of a translucent pink colour. “This is a heart stone” she said. She had brought it just for me. “Now that you have this stone, your new heart will know where to find you”.

These people were my nurses. They are some of the best people I have ever met. These are the people who take care of us when we are at our absolute worst. They don’t care what we look like, how bad we smell, how contagious we are, how much we complain, how much we cry, or how little we talk. All they care about is that we’re OK. They made sure I’d be ok.

Right now, medical workers are some of the only people who dare to walk through the doors of the one place none of the rest of us are willing to go. They keep taking care of us even though they could get sick. I really want them to get to be OK too. Please stay home, stay healthy, and protect some of my favourite people.

February 14th, 2020

I’m lying in bed looking up at my funky light fixture with the sun streaming through the crack in my black out curtains and I’m trying to breathe. I can’t seem to expand my torso. I can only inhale for 2 seconds and it gets cut. I have to get up, I’m going to be late.

In the bathroom, getting ready is the first time I noticed I was crying. I’m trying to rinse my face and I notice my hands are shaking. So annoying! I’m going to be late! “Get it together Laura. People think I’m strong. I need to be strong. You can’t disappoint them”! These thoughts just make me cry more. “I have to do this. I have to go so I can stay alive”. I put my fear aside for just a moment and finally rinse my face. Practice a smile in the mirror because I know my sister might see me when I leave the bathroom. I can’t let anyone see me like this. I am strong.

We’re here. It’s a beautiful sunny winter day. It’s always the most beautiful day on my hardest days. It makes me feel supported. It makes me feel like someone is saying “I got you, you’ll be ok, here is some sunshine”.

Valentine’s Day is also National Organ Donor Day.

The place is covered in hearts. It’s a heart hospital. It’s also Valentine’s Day. I’m glad no one has said anything annoying to me about my heart today and it being Valentine’s Day. “Getting your heart checked on heart day”! This is something I see other heart veterans say online. I’m glad it makes them happy. It doesn’t work for me. I just want to be a normal kid. I just want to go home. 

They’ve changed everything in 18 years. It’s even changed in 6 months. I don’t recognize it. I find this hard. I feel like I can never go back to the places I used to feel comfortable in this place. I feel like I will never be able to heal. At least some of the people are the same. They’re nice. I’m being nice back. I feel proud of this moment. I realize I’m smiling. I can do this. 

I’m not late. In my mind I’m on time. They want you to be 15 minutes early. I don’t understand why. They make you wait anyway. Do they not understand what it took me to get here? I’m giving them so much today, they don’t get the extra 15 minutes from me. I’m 32 though, I need to grow up, don’t I? I need to get it together. I need to be an adult. But every time I come here, I become the 13-year-old girl, physically shaking, wanting to go home. Never wanting to come back. 

My dad is with me. He drove and we came in my car. I love my car. I love what I accomplished to get it. I have to do 5 tests today. I’ll be out of here by 2. Then there’s all day breakfast. All day breakfast and a beautiful sunny day. The first one is at 8:30. It’s 8:53 and I’m still waiting. That’s ok. The next one is at 11:30 and the other 3 are walk-in style. I’ll do them in between. I’ll be out of here by 2. The hardest one is last. It’s the most painful. And then I will get to eat. I’m going to get pancakes and coffee. Can’t think about food now. I’m fasting. I’m starving. I’m still trying not to cry. I’m still strong…right?

Even the doors aren’t in the same place. 8:43 a.m.

I heard my name on the speaker. I’m in the wrong place. Why do they have to change everything? The volunteer tells me where to go. The basement. That’s where the ICU was. I spent some time there. The elevators doors open on “S” and there’s a gentleman waiting for me with a smile. A smile! But I’m late. I don’t deserve a smile. He’s so nice.

“When was the surgery?” he asked as he got ready for the echo test. “2001”. “Two thousaaaand one?” He was trying to make sure he heard me right. “Yeah” I smile. He seems impressed. I’m neat. I impress people. It’s because I’m strong. Today’s going to be ok. “I was still in China in 2001”. “Oh yeah”? I like stories. “I was a cardiologist there”. “That’s awesome” I think to myself. I’ve known this guy for 3 minutes and I like him. I would let him be my doctor. “In China, I saw many young people like you. They didn’t survive”. “Oh wow”. Holy shit, I’ve been working so hard and now this is going to make me cry. That’s awful. “I’m pretty lucky” I say it before he can. But, for some reason I don’t think he would have said it. He’s too nice. I’d still let him be my doctor. With a big smile, he said “yes”. Now I’m really trying not to cry. I can’t mess up the test. 

The cold gel touches my skin and I leave the room. In my head it’s over 18 years ago and I’m standing in front of my friend Matthew. He’s 7 years older. He’s got the biggest smile, he’s with his mom just like me, and waiting for a new heart, just like me. “Don’t worry” he said “echos are easy! You just gotta lie there! You can even take a nap”! he said always smiling. “Yeah but you don’t have boobs” I obviously don’t say this out loud. I never said anything. I can’t wait to see him again. He’s the first person I want to talk to in heaven. 

Time for blood tests.
9:38 a.m.

Another waiting room. Another numbered ticket to show I’m in line. This test is walk-in. Wow they already called me. I sit in the chair and answer all the questions that are clearly about the coronavirus. Leah walks in. “Leah!” I think in my head. She looks at me. She knows it’s me and I know it’s her. We smile at each other. Big knowing smiles. “Julie!” she says, talking to the phlebotomist. “How are ya feeling today? Feeling good? Feeling like you can poke me properly”? She had grabbed a numbered ticket for herself. lol she’s trying to make me smile like she did over 18 years ago when she was my nurse. It works. If I had known laughing could make blood tests completely painless, I would have still not have been able to ever do it before today. Thank you, Leah. Maybe I’m finally healing. Maybe it’ll get better. But I haven’t done the hard test yet. We’ll see.

ECG room.
10:05 a.m.

ECG and chest X-ray done. They’re some of the easiest if you’re ok with being half naked and touched all over. I’m not ok with it. They try to be respectful, but the test doesn’t really allow for it. I appreciate their attempts. “2001! That was a long time ago”! “Yeah” I say as kindly as possible. I don’t want to seem mean. I want to seem grateful because I am. I’m ok. Today is just hard. “And everything is good”? “Yeah” I nod and can actually smile for this one. I’m the one that gets to walk out. I get to be ok. I get to eat pancakes with my dad. I breathe as normally as possible. I don’t want to mess up the tests. These are the easy ones. It’s only 10:30. I have to wait an hour to start the period of waiting that they make you do even though your test is scheduled. I’m drained, hungry, allowing myself to be comforted by my future pancakes but trying not to think about them because I’m so hungry. It’ll be here before I know it. 

I just spotted a young guy here. His name was just called. His face looks the way I imagine my face has looked when I’m here. His name is Juan. I wonder if Juan knows he’s going to be ok. I don’t think he does. He should know. Someone should tell him. I really want to tell him he’s going to be ok, but he’s already disappeared through the doors. 

They take me early. It’s 10:55. “Hi Laura my name is Carl, how are you?” Seriously? What a stupid question. “Good! You?” I’m lying. I’m scared. This one is the painful one. It makes me feel like my hearts going to explode. It makes me feel like I’m going to die; the thing I have fought the hardest against in my life. 

We sit down and go through the questions. There’re many things I’m not allowed before the test. Caffeine is big because it’s the antidote. That’s what they call it. The “antidote”. They’re going to hurt me, and if I’m good, I get the antidote, so I can feel better. Carl asks me if I’ve smoked and I say no. “Never”? “Never” I respond. “Good girl” he says softly. The feminist inside me is enraged. I feel small again. I don’t react. He has a big needle. He’s going to put in an IV and I’m going to let him because then I will get to go home. I decide he’s going to be the absolute best person that’s ever put in an IV ever. He didn’t disappoint me. Good boy Carl. 

PET machine for stress test.
11:42 a.m.

I’m in the room now. It’s dark and freezing cold. I’m shivering and I’m not entirely sure if it’s because I’m scared or cold. I get on the table and Azmina hooks me up. Azmina is no bullshit. She’s my favourite one yet. It’s like she knows. She knows her speed is helping. She knows I need another hot blanket without saying it. She knows that extra moment when she had her hand in mine made a difference. 

I’m lying there and suddenly the Beatles come on. I didn’t even know they were playing music until now. “I want to hold your haaaaand, I want to hold your hand”. “Ok”! I almost said it out loud. I noticed my hands. One was closed tightly and one was open just enough. It was as if someone was already holding it. There was. I couldn’t see him, but I knew he was there. I wonder if he ever had to do this test. I think it’s too new. I’ll ask him when I see him in heaven. It’ll have to wait. 

“Are you ok”? “Yeah”! I have tears rolling into my ears. It’s driving me crazy. It tickles so much. I almost laugh but I’m trying so hard not to move. I had noticed the tears. It’s not a big deal. I’m ok. The pain hasn’t started yet. “Ok Laura, I’m going to start the injection.” It’s my friend Carl again. We’re cool now. “Ok”! It’s so loud in here. I don’t know if they can hear me. I’m trying to show them I’m ok with my voice since the tears may be throwing them off. I wonder what they would do if I said I wasn’t ok. I’d probably have to stay longer. So, I need to be ok and I need to not move. 

“Laura I’m going to give you the antidote in one minute. Are you ok”? “Yeah” I’m ok Carl. My heart is racing, my cheeks are on fire, my muscles are aching, I’m running a marathon without even moving. It’s a medical stress test. I hate it. I feel pain flood into the back of my head.

“Here it comes!” ok I’m ready. I’m so ready. Go for it. “Last injection!” the antidote. It’s so weird. All the pain washes away. I can feel the heat fall away from my cheeks, my muscles relax, my breathing slows. I feel almost normal. The headache remains. It’s ok. The coffee I’m getting with my pancakes is more antidote. 

I did it! I’m so ready to leave. I almost forget that I need the IV removed. Weird, that’s never happened before. It takes me awhile to change into my clothes. I just ran a marathon. I’m somewhat lightheaded. I get the IV removed and Carl shows me a short cut out. That’s nice. It’s like he knows. he can’t do much, but he can get me out of here a little faster and he does. 

It did it again. I made it out again. I don’t have to do this for another year. The hardest part of my year is behind me. I’m so excited because I haven’t been myself for a month. I’m so excited to get reacquainted with myself. I’m so excited for others to get to see me again. I’m so excited for these pancakes. They are delicious.

“Good Morning” 1:12 p.m.

A Poem

‘Twas the season of giving and holiday cheer and all through the town people were gathering near, to be close to their loved ones and hold onto them tight for this season was special with the snow sparkly white.

Not too far in a tower a young one did lie, wrapped in tubes and in wires on which she relied. Not a tear in her eye for she was as strong as an ox but her heart sank to think she was missing a lot.

Her mom sat beside her, she was never alone. Though she didn’t want this memory to be more than her own. Her sister and dad were there with her too as they gathered together, this hospital is all they knew.

She always had hope that an angel would come, someone selfless and giving would bring her freedom. No more holidays would pass full of illness and fear, all because of the gift someone would give her this year.

She didn’t know that person and she never would but by the love she received she’d reach adulthood. She’d do many things and learn a lot on her way, and she’d never forget what she received on that special day.

When renewing her health card they asked her the question and she gave them permission without hesitation. You don’t need to wait until you renew, you can go online here: blood.ca without further adieu.

While we’re wrapping presents and getting in the spirit, there are kids trapped in rooms just fighting to live through it. So during this season full of festive delight, Consider for a few minutes, giving the gift of life.

Dear Jhon,

As a kid I was incredibly shy. As a baby, my mom would take me out around people and I would cry non-stop. I never spoke in school and dreaded being called upon. Even now my body temperature rises considerably when It’s my turn to talk in a meeting or a group setting. But the funny thing is, even though I’m quiet and shy and get really nervous, one of my favourite things in the world is connecting with people.

“I’m here because of a donor <3”

Just over a year ago, in the summer of 2018, I decided to do something that some would consider out of character. It wasn’t easy. As shy as I am naturally, I’m even more shy when it comes to being a transplant recipient. So, it only makes sense that I announce it proudly by going to one of the biggest transplant events created; the transplant games.

From the time we arrived for the games in Vancouver, I was surrounded by people who were nothing like me but that I had one huge thing in common with; a turbulent life event that changed every one of us. The feeling was incomparable. I realized that it was OK to be me and to be a transplant recipient. I didn’t have to be one or the other. I could be both! I was connecting with people all over Canada and it was the best thing ever.

Mid way through the trip I messaged a videographer that was working at the games. He had reached out asking people to share their stories. I was on a roll. I thought, why not? He asked me and my family over for lunch. Not a custom we are used to. But I couldn’t help thinking, this is really cool. Yeah, I may get my whole family murdered, but this is really cool. The cool feeling won, and I messaged back “what time should we be there?”

I had no idea what to tell my family. I was so nervous to tell them. I obviously couldn’t blow off my new friend Thierry, so I kinda blurted it out. “Hey, so… I have an idea of what we could do our last day”. I had planned most of the sightseeing so far so that was the easy part. I smiled awkwardly “I may have messaged this guy, he’s local…well he’s from France but lives here… he’s interested in transplant stories…he wants us to have lunch at his place…I think it’ll be great…I feel like he won’t murder us all…probably”. I know, I really sold it. They were hesitant but said ok.

Me and Thierry

It was one of the best experiences we had the whole trip. Thierry was an amazing host. He talked to us about the culture in Vancouver. He himself had had a kidney transplant only one month before we met! He made us a delicious lunch. Turns out he had been a chef and restaurant owner. He even walked us to the Vancouver Aquarium because we had to see it. I loved meeting Thierry. My whole family thought it was one of the best experiences of the trip. We learned so much and made so many awesome memories in one afternoon.

Recently my mom and I had a similar experience. We went on a cruise to the Caribbean. Starting a new job has been super hard and this trip came at the perfect time. Early on in the trip we met Jhon (not a typo). He was as unique as his name. He worked in the buffet dining room as a server. Every time we saw him, we’d ask him how he was. Every time the answer was the same; “Never been better”.

During the trip, we learned that Jhon was new to his job. You would never have known this. We also learned that his wife and 2 year old were back home in the Philippines counting on his income. We learned that he worked 10 hours over night when we slept, and slept when we were out having a great time. Every time we saw Jhon, he’d wave and have a big smile on his face. “Today you’re in Barabados!” He seemed almost more excited than we were. “Barbados is beautiful! The water is so blue!”

Sunset in Barbados

On one of the last days of the trip Jhon told us that he was preparing himself. He told us that his little girl was turning 3 in two weeks and that he was preparing himself because he knew that his heart would be broken that day. It would be the first time he missed her birthday. He knew she was growing up and he was missing it. He was missing it because he had to. He knew what he was doing was important. His daughter’s name is Hope. He was doing this for Hope.

The next day, mom and I went up to the buffet. We see Jhon with big smile, happily waving to us as usual. Hey Jhon! We both loved seeing him every day. “How are you doing today Jhon?” He paused as he always did and with a smile on his face said, “Never been better”.

I don’t know if Jhon or Thierry will ever know how much I appreciate them, or how much they have done for me. I will never forget them. It seems like I’m braver connecting with people when I’m on vacation. That’s a start! Right? Nothing wrong with that. But there are also so many people in my daily life that make my life better and that make me better. Whether they’re a cousin I don’t know very well but who made me feel really important, or another who likes everything I create as soon as I post it, a friend at school who messages me almost every day when I’m sick to ask me how I am, another friend who always prays for me when I need it, a guy who buys me pizza which he knows always makes me feel good, my family who laugh at all my jokes (not an easy task) and who encourage everything I do, or anyone who has spent their time on me just because they wanted to. You may not know it, but you are all immensely important to me. Thank you for being you and for encouraging me to be me. ❤ ❤ ❤

“We didn’t realize we were making memories. We just knew we were having fun.” -Winnie the Pooh

It’s About Being Alive

18 years ago I had a heart transplant and I’ve been completely different and exactly the same ever since.

Easter, 8 years pre-transplant

Not sure what I mean? It’s the beauty of organ donation. We get to live on and be us. For how long? There is a lot of speculation and statistics around this that you may google if you wish but I choose not to for many reasons, one of which is this dude: David (Click his name for the article). David is 90 and had a heart transplant 35 years ago. David is awesome. I want to be like David. David was told he might only live for an additional 10 years and David said “bullocks” (David may have said this but this is not a quote from David himself nor was David at all directly involved in the crafting of this article).

Life is the same because we get to keep on living. We are limitless. Things may go wrong but that may happen whether we have had a transplant or not. I’m in a bit of a different situation than some, and many people may not know this, but I was perfectly healthy before. I needed a transplant very suddenly. My heart deteriorated very fast (it felt like a couple of weeks) and I needed a transplant with nearly no explanation as to why. My heart just died. They call it idiopathic cardiomyopathy. No statistics or speculation could have predicted it. They don’t know what happened.

Prince Edward Island, 9 months post transplant

I’m not someone who was sick my whole life and had a new zest post-transplant telling you that I am now limitless. I am someone who was healthy my whole life who suddenly needed a transplant who is telling you that I am STILL limitless. I have lost nothing. I haven’t lost years, I haven’t gained fear or any serious pain. I’m just a regular girl that gets to keep moving along, doing normal life things like dreaming of my career, my first home, the family I get to build and my future pet Pug.

I could easily sit around thinking about what life could have been like had it never happened (been there). I could easily be unhappy. I could easily worry about what could happen next (done that). I could easily worry about what people think (and that). I could easily limit myself. But I am telling you, with my 18 years of experience, that it’s a lot easier and healthier to simply live.

High School Graduation Ball, 4 years post transplant

I did not trade a disease for a condition. I traded a hospital bed for my high school diploma. I traded wires and tubes for my driver’s license. I traded a little bit of time in the hospital for the rest of my life outside of one. I traded the promise of nothing for the promise of absolutely anything.

In the last two years, I have sought out and become part of the transplant community. I have opened myself up, told my story, talked to others, met some immensely inspirational folks, and have come to realize that that’s exactly the right thing to do; live.

Cabot Trail, Nova Scotia, 12 years post transplant

I wake up every morning groggy, tired, cranky, and inaudible (I’m definitely not a morning person) but around 1 p.m. or so, when I finally wake up, I think I about my next project and how I am going to achieve it, I think about how happy I am that I can do anything I want, and now, I think of my new friend David (David does not know that we are friends) on the other side of the world, just chillin’ and thinking about what he’s going to do next.

Even though I am recipient, I could still save someone one day, just as someone saved me. To be a donor register at www.beadonor.ca

Hogsback Lockstation, 18 years post transplant

You are enough. You can save lives.

We had a booth set up at @Costco in #kanata last night. The Costco community recently lost a family member who was waiting for a compatible #organdonor. They asked us to come so that we might help prevent another #community from losing someone they love unnecessarily. Let’s do this #together.

In #Ontario 1500 people are waiting for #organtransplant. Every 3 days someone dies.

Can’t #donateblood? You can still be an organ and tissue donor. No matter what, you’re not too old, you’re not too unhealthy, you’re important exactly the way you are. Don’t think you’re good enough? You absolutely are. Join the #donornation community with me. You can save lives just by being you and by registering at beadonor.ca.

@ottawagift #beadonor #donatelife #trilliumgiftoflife #giftoflife #organandtissuedonation #organdonationsaveslives #givelife #iamadonor #endthewait

My Last Week as “Just a Receptionist”

Whenever anyone would ask me a question about myself, I would feel the need to add “just” in front of it. Someone would ask me what I do, and I would answer “I’m just a receptionist”. Someone would ask me what my program in school was “just a general arts degree”. What kind of sports do you do? “just swimming and sometimes biking”.

I never felt good enough and I didn’t understand why. Looking back, I was never seriously bullied. Sure, I heard comments, all people do. I never really let it get to me. I never really let it get to me because I was too busy bullying myself. The only one making me feel not good enough was me.

Going through what I went through as a kid really knocked me down mentally. I had to learn that it wasn’t my fault. I had to teach myself that I wasn’t weak. The disease took my heart, but it didn’t take from me what really matters.

Someone once made me realize that even though something isn’t a common accomplishment such as getting a degree, building a career, or buying your first home, doesn’t mean it’s not an accomplishment.

Everything you do for yourself, everything that you accomplish that’s important to you is an accomplishment. This person reminded me I had accomplishments. She asked me why I didn’t think learning to sail was an accomplishment. I didn’t know what to answer. I always just thought a university degree ranked and everything else I did didn’t. I was wrong.

If you biggest accomplishment today is getting dressed, doing your hair, making a healthy meal, or leaving the house, feel good about that. Everything that’s worth it is hard. You should be proud ❤

Breaking News: Today I ate vegetables #adulting
#onlytook3triestospellvegetables

What makes you feel accomplished lately? It doesn’t have to be something that we all recognize, just something that you’re proud of. Let us know. Maybe you’ll inspire someone else to feel good about themselves today.

Just because you’re not doing the same things everyone else is, doesn’t mean the stuff you are doing is less meaningful. This is the last time I will call myself « just » anything. Keep going out there and living YOUR best life! ~Laura

I wrote this post a few weeks ago to try to perk myself up. I felt like I wasn’t going anywhere fast. Even though I had just graduated and gotten a full-time permanent job. I’m 31 (Almost 32 😭) and don’t feel financially stable enough to move out. Crazily enough I was offered a position that I had applied to months before and didn’t think I was going to get. I accepted. I’m now an academic advisor and really darn proud.

In under a year I graduated, became employed, and got promoted. All major life accomplishments that 5 years ago seemed very impossible. Who wouldn’t be proud right? Just because you do something awesome doesn’t mean your old habits suddenly disappear. I caught myself almost saying « just » the other day for something entirely different. Language matters and impacts you more than you think. Just because you change a habit in one sector of your life doesn’t mean it doesn’t apply to all sectors of your life. You are not « just » anything. You are you and that’s what makes you great. In the words of the great Dr. Seuss “you are you that is truer than true, there’s no one alive who is you’re than you”!