Sunny was born in Surrey, British Columbia, a perfectly healthy happy boy who enjoyed pewee football. Due to a genetic mutation, Sunny was diagnosed with Dilated Cardiomyopathy at the age of 18; shortly after beginning his term at Simon Fraser University in 2003.

Dilated Cardiomyopathy is a disease where the heart muscle is greatly enlarged and completely loses efficiency in pumping blood throughout the body; this affects the functioning of the lungs, kidneys, liver and rest of the body in general. Sunny has had to defer his studies, personal goals and projects, due to being sidelined by severe and unpredictable congested Heart failure. As the disease progressed, symptoms and side effects worsened along with his quality of life. St. Paul’s Hospital of Vancouver, BC provided its best care and prolonged Sunny’s life as much as possible. Finally in 2013, Sunny was given an LVAD, which is an artificial heart pump to bridge the gap between complete heart failure and need/availability for a new organ.

In July 2014, Sunny received the call he had been waiting for almost 12 years. Sunny underwent a successful heart transplant from a matching donor giving him a second chance at life. It took many years, many near death experiences and teams of medical professionals and family care to get to this point. If it weren’t for the kind soul who signed up to be an organ donor, who knows where Sunny would be today. Sunny wants to put all of his positive energy into the Jivana organization to give something back in a meaningful way and appreciate his good health and functioning body by making good use of it to honour his donor – by improving his health, his mind, his relationships, get married, and travel the world.

The post Meet Sunny first appeared on HeartLife Foundation.

During Summer of 2014, I had a flu like symptoms that went on for a few weeks.

I went to see my family physician and she prescribed me with inhalers for asthma. Weeks went by and the symptoms continued to persist, so I went to a walk-in clinic. The doctor told me that I had fluids in my lungs and that I had bronchitis, so she prescribed me with antibiotics for 10 days. My heart rate and blood pressure were high, but they didn’t investigate further because I was menopausal, I was adjusting to my married life, I was stressed, and I was told to stop drinking too much caffeine.

Weeks and months went by, and I increasingly became more fatigue and coughing a lot. I couldn’t walk very far and I stopped walking my dog. I took naps during the day, I was very forgetful, I couldn’t do my house chores, I couldn’t sleep lying down. Everyday, I felt as if I was drowning and my chest felt heavy. I had to sleep sitting up or propped my head on the couch. I couldn’t eat because my belly was distended.

On the evening of November 29, 2014, I started to have a hard time breathing. I asked my husband to take me to the hospital. A day after my admission and several tests, bloodwork and medical imaging, doctors broke the terrible news I never wanted to hear that I have cardiomyopathy, atrial fibrillation, heart failure and pneumonia.

Since then, I have several other health issues and surgeries. I am unable to do activities I used to enjoy. My life has changed forever. I was diagnosed with heart failure at 40 years old. I never smoked, abused alcohol or did drugs. I always ate very healthy, tried to live a very active lifestyle, and am within my ideal body weight. I want to spread awareness to women my age to listen to their bodies and be vigilant on unusual symptoms especially irregular heartbeats.

The post Meet Pegga first appeared on HeartLife Foundation.

Up until 2013 I was a healthy, fit, wife and mother of 2 teenage boys. I also had a successful and demanding career. August of that year was the first time I became aware of a change to my health. During a strenuous 8-hour hike I had to take more frequent breaks and I was more short of breath than expected. It was frustrating but not enough to get overly concerned.

Over the next four months my shortness of breath became more frequent. I was gaining weight; my fatigue levels were getting worse and I had increasing dizzy spells. In addition, I had episodes of very fast heart rates that were increasing in frequency and duration. I thought I was just getting out of shape and since I had always enjoyed good health I assumed I was in control of it. I thought that I could fix it. I thought stress, travel and diet had caught up with me. I downplayed it because I was embarrassed, my family didn’t have any idea just how serious things were becoming.

By December of 2013, the intensity and duration of these symptoms had increased significantly. My denial that something more serious could be happening also meant I downplayed the need to see a doctor.

And then life changed

On Dec 15, 2013, after 8 hours of feeling queasy, bloated and my heart racing I admitted I needed help and my husband rushed me to emergency. It was quickly determined that I was in full heart block. The ER doctor cardioverted (i.e. stopped and started) my heart twice to stabilize me and then admit me to the cardiac intensive care unit (CCU). I was told I was having life threatening arrhythmias, and without serious treatment, I had less than a 1% chance of surviving. I didn’t realize it at the time, but I was also in NYHA stage 4 heart failure.

The next few days included 2 more cardioversions to shock my heart back out of dangerous rhythms. Then endless tests including a biopsy of my heart. I was discharged 10 days later, on Christmas Day, with an ICD (implantable cardioverter defibrillator) and a diagnosis of Cardiac Sarcoidosis.

Sarcoidosis is a rare inflammatory disease that typically occurs in lungs; but it can occur in any organ. It has no known cause and no cure. Some sarcoidosis patients only have one flare up of activity and then it resolves, some don’t even know they have it. Others, like me, have advanced sarcoidosis meaning it can reoccur.

Sarcoidosis can become dangerous if it interferes with the function of an organ. In my case Cardiac Sarcoidosis not only interfered with my heart function but also resulted in heart failure because of the damage done to the heart tissue and function.

I was prescribed multiple medications under a complex treatment plan. Yet once I was home, I believed I would return to work and life as I knew it. Despite my cardiologist’s warnings to prepare for a long recovery I was only focused on the 6-week recovery from the ICD surgery. I did not understand what chronic disease would eventually mean to me and the ways in which my life would change.

The treatment plan

Fortunately, I was enrolled in cardiac rehab which gave me back some confidence and taught me how to exercise safely. ‘No pain, no gain’ could no longer be my motto. But more than that, it was my first social connection to other patients who understood the emotional impact of health traumas. Despite our differences in age and backgrounds we shared a common bond and my long road to acceptance and understanding began

In the past five years I have had two life saving shocks from my ICD. The sarcoidosis flared up a second time in 2016, and again in 2017. My life felt like a never-ending cycle of intensifying the treatment, adjusting to the side effects/changes, reducing the treatment, waiting, and hoping. Every time I thought that my old life was right around the corner.

When the sarcoidosis was active in the fall of 2016 I experienced significant symptoms of heart failure. At that point I was told I had a severe leaky tricuspid valve, the wall of the right side of my heart seemed to be collapsing and that if we couldn’t get the sarcoid under control, and my heart continued to deteriorate, a valve repair/replacement and/or heart transplant were likely in my future. This was when I started to realize I was living with heart failure and my life would never be the same.

Adjusting

Heart issues are often associated with lifestyle choices, therefore I felt like I had somehow failed by letting this happen to me. I felt ashamed, isolated and sometimes angry. Although I’m grateful for many things I also grieved my old life. Having heart failure is not part of anyone’s plan.

In August 2017 the sarcoidosis returned and, strange as it might sound, so did my hope. It was then that a new treatment plan was identified. In 2018 that treatment was approved, and I began regular, ongoing, IV infusions.

I’m still impacted by my damaged heart and my life will forever be divided into before and after my diagnosis. However, I know that if I don’t listen to my body and follow my treatment plan I will worsen and with that realization has come the beginnings of acceptance.

Heart failure is a scary diagnosis, but I’ve come to learn that it is a continuum. When my sarcoid is active I experience heart failure symptoms. I consider those symptoms my warning sign to call my medical team right away. When both my sarcoidosis and my heart are well managed my heart failure symptoms diminish.

It has been a very long road but, for now, my sarcoidosis and my heart failure have stabilized.

What’s next?

I’m fortunate that I’m a patient of a heart function clinic which means I have access to a wide range of resources and support services. Life can change in an instant and the adjustment and acceptance of that comes with a roller coaster of emotions. Unfortunately, the mental health impacts are often underestimated or even overlooked.

Thanks to my family, friends, medical team and cardiac rehabilitation I can once again do many of the things I have always enjoyed. I just do them differently. Before my diagnosis I prided myself on being constantly active, open to opportunities, being flexible and spontaneous. Now, I must be more thoughtful and planned in my activities. I may not go as far, or as steep, or as fast as before, but I still get out and enjoy the outdoors. For the first time in five years I can look at a hill and not panic. It won’t be easy but I’m starting to trust my heart to get me through it.

I will always require daily medications and bi-monthly IV infusions. I must also carefully manage my stress, rest, diet and exercise. My energy levels vary from day to day so learning to pace myself, prioritize myself and ask for help have been just as difficult as the physical adjustments. Multiple studies show that this is a common challenge for many women and unfortunately it can mean the difference between life and death.

I haven’t fully figured out what this next chapter of my life will look like, but I know it’s up to me to make it as healthy and fulfilling as I can. I’ve always believed in healthy living for prevention and I’ve learned that it is also a huge benefit to recovering from, and living with, illness. While I worried I was simply “out of shape”, the reality is I am probably alive today because of how strong my heart was before I sought medical help. Tomorrow’s Results Ultimately Start Today – TRUST yourself.

The post Meet Tracy first appeared on HeartLife Foundation.

I’m here to say that I received the most precious gift of life. A new heart. I am so happy to be here today. I’m a 54 yr old woman that is happily married to my husband for 28 years. I also have a beautiful 27 year old daughter.

I have Lupus, and I was diagnosed with it at the age of 19, which means it’s been 35 years since I was first diagnosed. I got married to my husband in 1991. Shortly after I had my daughter on February 14, 1992, she was born at only two pounds & one ounce, because of Lupus. Due to a clotting disorder that I have (anti phospholipid syndrome), I had a heart attack. It was 8 months later after I gave birth to my daughter and I got a blood clot, in my heart.

In January of 1992, I had to get a mitral valve replacement. I was only 28. My heart was now damaged from the heart attack. For 20 years, I was struggling with a sick and bad heart. As years went by, my heart was getting enlarged year after year.

In 2007, my doctor diagnosed me with Ventricular Tachycardia. Soon after I found out that I had this fast heart beat, I got an attack and went into cardiac arrest. I was implanted with a defibrillator/pacemaker shortly after. I was doing well with it for 7 years, until one day I had an attack where my defibrillator started shocking over and over. My heart finally couldn’t take it any more — and I went into cardio arrest again.

I was rushed to RCH hospital and I was there for 2 weeks. I was transferred to SPH where a heart transplant team took care of me. I was in the hospital for 2 months. The doctors told me then that I needed a new heart cause my heart was only working at 15%. I was implanted with a heart pump (lvad) until they found me a donor. I waited 8 months and then I got a new heart.

I wanted to share this story with all my heart survivor friends, because I wanted all of you to know that miracles do happen. God is good!

I want to thank  all of the people who gave me a second chance at life.

First of all, the firemen and paramedics that were there to assist me at the time of need. My donor and the family — I would not be here today if it weren’t for you. God for always watching over me. Dr. Cheung for my transplant. All of my cardiologists and heart transplant team. The wonderful nurses that took care of me, and my husband for being there, and never giving up on me. My daughter for standing by my side along with the rest of my family and friends. I’m so happy that you are all in my life. I could have never gotten through this without you. May God bless you all! ️️

The post Meet Antonella first appeared on HeartLife Foundation.

Mid-December 2008:  It was sunny day in Southern California.

I leashed up our dog for a quick midday walk around the block.  We walked at a brisk pace, rounding the curve at the end of our street to slow down for the climb uphill on the next.  I said “hello” as we passed our mail carrier and turned the corner to head back home.  We had walked only a few steps when I felt a sudden rush of light-headedness, something I’d experienced for a couple of weeks and reported to my family doctor.

“Don’t worry about it,” she’d advised.  “You’re probably dehydrated.  Drink more water.”  I stopped to take a breath, then everything went dark.  When I came to, I was lying face down on the sidewalk, bleeding from the chin, my dog obediently sitting by my side.  Somehow, I managed to get to my feet and walk home.  I was unnerved enough to call my husband at his university office.

“A funny thing happened while I was walking the dog. I passed out…”  My head began to buzz.  “Oh….” I mumbled, collapsing on the floor.

I heard my husband’s voice, “Sharon?  Sharon? I’m coming home…”  A few moments later, the phone began ringing.  I managed to get to my feet to answer it.  It was a 911 operator telling me the EMTs were on their way.

“Don’t send them, please,” I said. “I’m all right.”  But I wasn’t.

Within moments six — I reiterate — six very good-looking young male EMTs burst through our front door while I, embarrassed and confused, attempted humour.  By the time they got me on the stretcher and in the ambulance, I knew something was wrong.  I was admitted for observation and tests, and three days later, a cardiologist came to tell me that I had been diagnosed with heart failure.  “You mean a heart attack?”  I asked, panicky and teary-eyed.  I had no idea what heart failure was, and I was frightened.  The next day I was again transported by ambulance to a cardiac care center to have an ICD inserted in my chest and admitted to a different hospital for three more days.  New terms, including dilated cardiomyopathy, atrial fibrillation, and ventricular tachycardia were added to my medical record.

I’d become a heart failure patient.

No one had fully explained what heart failure was, what caused it, how it progressed, and or how it was, ultimately, associated with hospitalizations and mortality.  I’d already had a brush with near death as a teenager, and perhaps I was unwilling to accept what being a heart failure patient meant.  The brief and reassuring annual follow-up and doctor’s oft-repeated “you’re doing fine,” allowed me to stay in denial.  I worked with cancer patients after all, many of them with terminal diagnoses, and I was humbled by their strength and courage.  The irony, of course, was that the seven weeks of radiation therapy I had undergone in 2000 as part of the treatment for early stage breast cancer was likely the culprit behind my heart failure.

That was over ten years ago, and as someone who continues to live with heart failure, I’m doing relatively well.  Two years ago, my husband and I returned to Toronto, and I had the good fortune of becoming a patient of Dr. Heather Ross, MD, a remarkable cardiologist and leader in heart failure care.  The level of care and information I now receive has increased substantially over what I experienced in California.  It was, I admit, a bit of a shock to discover that my heart failure had worsened, that I have thromboses are on a heart valve and lead wires of my ICD, and he number of medications I take more than doubled.  Periodically, I take a break from reading the research on heart failure, because it can easily depress me, igniting those little shadows of fear, the ones about early mortality.

But all in all, I am one of the lucky ones.  I dance (not well, but enthusiastically); I spend time with my Toronto granddaughter; I walk often, albeit not as fast as I once did, in this wonderful multi-cultural city, taking in the music, arts and culinary delights it offers.  I continue my work with cancer patients, better able now to understand the fears that come with a serious illness like cancer or heart failure.  I’ve served on a provincial committee on heart failure care and am now part of the Patient Partner program at Toronto’s UHN.   And I write, exploring the lived experience of heart failure — not just the physical one, but also the literary, emotional and spiritual ones, just as I ask the cancer patients in my writing groups to explore the impact of cancer on their lives.  I have been creating a blog for this purpose (www.heartmusings.ca), hoping it might inspire other heart failure patients to write and share their stories.

I intend to live as fully as I can for as long as I can, caring for my heart as best as I can, but not taking myself too seriously either.  Laughter is also one of my medicines, and if you were to pass by our apartment door on most days, you might hear me belting out the beginning lyrics of a Johnny Cash song,  “I keep a close watch on this heart of mine…” (“I Walk The Line,” 1957).

The post Meet Sharon first appeared on HeartLife Foundation.

Before I start, I want to take this opportunity to thank my donor and donor family. I am so grateful for the gift I was given.  I was diagnosed with heart failure 10 years ago when I was 23. I know what you’re thinking: I haven’t aged a bit. The last 10 years have been somewhat of an adventure. Throughout my journey, there were ups and there were downs.

During the ups, I was able to work, travel, exercise and live a good quality of life. During the downs, there were periods where my family and friends thought they lost me. The worst of which came in 2014. I was in the middle of playing squash with two of my best friends and I had an “incident”. I required CPR for 8-9 minutes, was in an induced coma for 8 days and CCU for 2 weeks. That being said, I always seemed to bounce back.

Needless to say, heart failure and the ‘what ifs’ were always on the back of my mind. I worried about having events at the gym, at dinner, at weddings. Prior to my heart transplant, I became known as the wedding crasher… literally! With all that to say, heart failure was a blessing in disguise. I’ve been able to meet some amazing friends and colleagues, with the opportunity to get involved in the heart failure community. Alongside Jillianne Code and Sean Virani – I was able to co-found Canada’s first HF focussed patient advocacy group, Heartlife Foundation.

I knew at some point in my journey I’d require a transplant. For me, it came in August of last year. I was officially listed. I remember the moment Dr. Davis came into my room at St. Paul’s Hospital and gave me the news. It was surreal, but I was ready. I knew this was the only option. And I wasn’t planning on arguing with Dr. Davis.

Fast-forward to June 6 at 10:30 am, I get a call from Wynne. We think we have a heart. Me being me, I ask if it’s okay if I go home and shower and change. Get a couple of things done for work.  So many thoughts were running through my head.

“Is this the one? I have to call my wife. Am I ready for this?”

I make it to St. Paul’s at around 11:30 am. The team is ready for me. Everyone is smiling, extremely welcoming, and so excited. Surprisingly, I was pretty calm. Or at least I thought I was. Then I waited, and waited, and waited. The nerves started to kick in.

Sometime in the afternoon, Dr. Cheung came in to say hi. He was beaming – and ready to go. He said, “I’m going home to take a nap and be back in a few hours to do this.” Not a bad idea. His confidence and friendly demeanour put me at ease. Four hours later, I went into the operating room with at 11:30pm, and my life was changed forever. My wife always said I my old heart was large because I had a lot of love to give. Now that my new heart is smaller, I tell her that the love is just focused.

Currently, I am 2 months and 2 days from the day of the transplant. I’m excited for the next stage of my life with my new beautiful and powerful heart. I look forward to spending time with family and friends, travelling with jessica, building heartlife alongside Jillianne, and of course dancing at weddings without worrying!

I wouldn’t be here if it weren’t for a lot of people.

First and foremost: to my family, my friends, my wife Jessica. You’ve been amazing; thank you for your continuous support, care and patience. My fellow transplant recipients everywhere: Jillianne, Sunny, you are inspirations. Thank for your guidance and answering my random questions at all hours!

To the St. Pauls Care team and the post-transplant team: such amazing work you do. Your passion and commitment to patient care is truly something special. To Dr. Virani and the rest of my team: thanks for putting up with me the last 10 years; your guidance has been integral for my success.

To Dr. Cheung, I’ve had a thank you card sitting on my desk for weeks. I can’t express in words how grateful I am for your commitment to your field and your patients. Jessica told me that Dr. Cheung came into the surgical ICU to check in on his patients that just had transplants. She then went on to tell me it was his day off and his birthday. This is a testament to the level of care that’s provided to patients.

To BC Transplant, I am beyond grateful for your dedication to saving lives and offering hope to families. The work you do for British Columbians is remarkable.

Once again, to my donor and donor family – thank you for the gift you have given my family and I. You have given me a second chance to live a full life. I will do everything I can to live a life that I hope will make you proud.

And finally, I would like to encourage anyone who reads this to become an organ donor. Please head to the BC transplant website. It’s easy, its fast and most importantly – you could save a life.

The post Meet Marc first appeared on HeartLife Foundation.

Before I share my story I must take a moment and thank HeartLife Foundation of Canada for supporting me. I was fortunate to find HeartLife early after my diagnosis of heart failure. I am so grateful for the information, opportunities, and sponsorship of my local projects.

To hear my heart story, we first have to go back to 1994 when I was diagnosed with Non-Hodgkins Lymphoma at 24 (almost 25). I had been sick on and off for awhile, getting treatment for everything from bronchitis to allergies and pneumonia. I was misdiagnosed for about 8 months. During that time, I was loosing weight, having to sleep almost upright as I would cough when I tried to lay flat and was experiencing night sweats – all of which was being shared with my primary doctor. Finally, I was taken seriously by a different primary doctor (my doctor was on vacation) and he immediately sent me for a battery of tests. A chest X-ray showed there was a tumour (shaped like a small orange and lemon linked together) in my chest that was putting pressure on 25% of my heart. I was scheduled for an urgent MRI the following day. Right after the MRI was performed, I was told I would not be leaving the hospital. Instead I found myself in ICU for 5 days. I had a biopsy the day after the MRI to determine the type of tumour. I had to remain awake for the biopsy as my blood pressure and heart rate were too unstable to put me out. They also had to keep me at a 45 degree angle as I would start to cough uncontrollably when placed any lower. My circumstances did not make it easy for the doctors to help me. The results of the biopsy was clear: cancer stage 3. It was also determined that the cell type I had should respond to radiation so that was planned immediately, the doctors wanted to get pressure off my heart ASAP. The good news was that my cancer was caught it before it had metastasized. Based on the tumour location and cell type, my odds of survival were 40% at this point.

The ambulance ride that Sunday to another hospital where they opened the radiation lab for me was surreal. Everything happened so quickly – this was day 3 after not being diagnosed for 8 months. As I was marked and prepped for the radiation, the conversation around me was about how they could perform the radiation without me coughing. This was critical or they would hit my heart. The decision was made to have me sit full upright and not not move a millimetre during the procedure. The blast of radiation was successful and the tumour responded by shrinking almost 20%. Next up was 9 months of chemotherapy followed by 1 month of daily radiation. By the time all the treatments were completed, I was facing my 26th birthday, grateful to be healing and on the road to recovery. The only repercussions of the treatments discussed with me, was the likelihood (80% odds) of loosing my fertility. After 10 years followup and testing, I was finally told I was cancer free. The relief and joy I felt that day is burned into my memory. I had my life back.

Fast forward 22 years to 2014 and my heart story starts. I was not feeling well after a particularly stressful period. I thought it was the flu: nausea, achy and tired. No pain. I had been having times of afib for months (actually, for years, but very infrequently) but did not recognize or know what it was back then. I had an appointment with my primary dr for my annual physical coming up so I thought I would see if I could move it up. As luck would have it, I was able to get an earlier date. It could not come soon enough as the overwhelming fatigue was brutal and, thinking it could be cancer, my anxiety over what was going on was building.

After discussing my symptoms and reviewing my blood work, my doctor hesitatingly agreed to an EKG. She felt strongly that it was not cardiac related, that an EKG would rule out cardiac concerns. Well the EKG revealed I had suffered a heart attack. The shock of this was more difficult to comprehend than my cancer diagnosis at 24, as I was sick for sometime I had mentally been preparing. This was different as it was so sudden. Unexpected by not just me but my doctor too. I was so relieved it was not cancer, yet so afraid of what heart disease would mean for me.

An appointment with a cardiologist, and subsequent testing, determined I had chemo induced cardiomyopathy. My ejection fraction (EF) was 40% at the time (normal is 55-60%). When the cardiologist heard my cancer history and my treatment formulary, he said,  “You are right on time.” He explained we now have long-term research that confirms the “red devil” chemo drug (along with other types too) has repercussions on internal organs (especially the heart) approximately 20 years later.

The risk of organ damage was never mentioned to me. I now see it makes sense, since the chemo damaged my reproduction very quickly. Why not other organs, too?

I received my CRT-D device in 2017 when my EF dropped to 30%. My list of heart pills has grown to 6 different medications over the years. From the time of my heart disease diagnosis, I had been searching for information and support online, but receiving my CRTD inspired me to start my own FB group called “Canadian Women with Medical Heart Issues.” I’m grateful that lead me to HeartLife Foundation and many other opportunities.

As of 2019 my EF now is about 25%. The biggest physical challenge is fatigue. A recent breathing stress test shows I have a diminished breathing capacity (I am at approximately 50%)  so I struggle with shortness of breath as well. It has been a pretty quick slide from Heart Disease to Heart Failure for me. When I was originally diagnosed my cardiologist thought I would be stable for 5 years or so, but unfortunately, that was not to be my story. I am borderline for consideration for advanced therapy (transplant). I am hopeful this can be kept at bay for a few more years with medications, exercise, diet & stress management BUT if the time comes it comes. With the support of family, friends and online communities like HeartLife and Canadian Women with Medical Heart Issues, I will persevere.

No one knows what the future holds for them. I had 20 plus years without major health issues and 20 beautiful years with a career I loved. I was able to travel with work and my wonderful husband, to experience so many life adventures. I would not have had any of that if the doctors had not been aggressive with my treatments back when I was 24/25. I am grateful and blessed. 2018 was a big year for me as I went on long term disability for heart failure, I turned 50 years of age, and I worked on reinventing who I am through my passion for advocacy and patient engagement. It has not been easy and it has been a tough few years but I honestly would not trade any of it. We are a sum of all our life experiences and my life is beautiful. I am hoping that 2019 will be a year of making a difference for women with heart issues locally and nationally. I’m looking forward to it.

Thank you for reading.

The post Meet Jackie first appeared on HeartLife Foundation.

My story is long. My experience with heart failure vast. I can state the simple facts of what happened to me as I have done many times.

—

Simply. Plainly. My heart failure journey is as follows.

At 27 years old I was misdiagnosed three times, until an echo revealed I had an ejection fraction (EF) of less than 10% and blood clots in my heart. I was given 72 hours to live, diagnosed idiopathic dilated cardiomyopathy – of unknown cause. With medical therapy, I recovered to 40% EF and a few stable years. Suddenly, I had 2 strokes where again, a large blood clot had developed in my heart , with 28% EF an implacable cardioverter defibrillator (ICD) was implanted. I had three more years of relative stability. I experienced sudden severity of breathlessness and swelling in my ankles, my EF was down to 13%, I was hospitalized and given IV inotropes (IV medication that helps your heart pump) and I was listed for heart transplant in September 2013. In March of 2014, I had emergency Left Ventricular Assist Device (LVAD; artificial heart pump) surgery as it was deemed I would not survive another 6 months, followed by a difficult surgical recovery with 3 severe gastro intestinal bleeds, 2 coils to cauterize the bleeds my intestine. After another 7 months of waiting, I had a heart transplant in October 2014. I spent 8 days in an induced coma because of post-operative complications to the surprise of everyone, and when I finally woke I discovered I had severe delirium and muscle atrophy. Given antipsychotics for the delirium, I started to regain my strength by learning to feed myself and walk again. The pathology on my original birth heart revealed chronic active myocarditis – of unknown cause. Two years post transplant, I started having upwards of 20 heart attack like pains day and night with a clear angiogram in March 2017, I was diagnosed with coronary vasospasm – of unknown cause. While visiting family, I had heart attack December 26, 2017, followed by two full metal jackets (complete artery stents), my transplanted heart had developed fast acting cardiac allograft vasculopathy (CAV) more commonly known as chronic rejection – of unknown cause, where I was medivacced back to St. Paul’s Hospital in Vancouver, where I was emergency listed for re-transplant. I waited two weeks in hospital, where a match was found and I was re-transplanted January 23, 2018. Put on more aggressive anti-rejection medication to protect from CAV, I was hospitalized with shingles for 3 weeks in June because of my more severely compromised immune system.

I am now almost a year and a half from my re-transplant.

Coronary vasospasms began again in February, 2019.

Cause still remains unknown.

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Does my ‘heart and soul’ exist independent of my physical heart?

This is a question that I grappled with when I was first diagnosed. And to be completely honest, after you have received the gift of a new life from another person, in my case more than once, this question is renewed as you wake each morning, as you breathe in every extra breath you are fortunate to be granted. My mortality greets me every morning as I say “Not today”.

My hearts have all been gifts. From my original heart I was born with, to the two donor hearts that have extended my life. I live in gratitude, humility, and with purpose.

It is because of my donor hearts that I have lived to experience a life that is truly extraordinary, so can I say that my ‘heart and soul’ exists independent of my physical heart?

The real question is, why should it?

The one heart that has always remained true, is the complete love and acceptance of my husband, family and friends. This is my ‘true heart’ the one that will never die.

My ‘true heart’ has only grown in size, as each new member joins our community looking for support that has truly transformed my own heart failure journey.

I now focus not on my mortality, but on the hope for living with heart failure that has become my HeartLife.

The post Meet Jillianne first appeared on HeartLife Foundation.