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.