Transcript
My name is Jillianne Code. I am an associate professor in the faculty of education at the University of British Columbia. I am also co-founder of the Heartlife Foundation, Canada’s first and only heart failure led organization, by patients for patients, across Canada.
My connection to heart failure goes back to 2005 when I was first diagnosed after being misdiagnosed for several weeks at the age of 28.
My story with heart failure is a long one, almost 20 years now, but upon being misdiagnosed when I was 28 years old, much younger, they thought I had pneumonia. I collapsed and was sent to emergency finally. Through that process I was eventually given an echocardiogram where it was revealed that I had a heart function way less than 20% and my heart was completely clotted. They thought that I wasn’t going to make it, I wasn’t going to live the next 72 hours, so that’s what they told my husband and my family, was to prepare. Thankfully I responded well to medication and then after that I became – I was well managed. I was mostly stable for a number of years following that.
Then in and around, I’d say 2013, I really started to decompensate. I was also, I should say prior to that, given an ICD [implantable cardioverter-defibrillator] because we weren’t really sure what the cause of my heart failure was. It didn’t seem too sudden, cardiac death didn’t run in my family or anything like that. So, they implanted an ICD just as a precaution. So, I did have a little bit of hardware at that point. But in 2013, they compensated quite a bit more, and they decided at that point that it was a good idea to evaluate me for a transplant. So, that’s when I was evaluated. I was hospitalized and evaluated for transplant.
I was placed on the list shortly thereafter, in October 2013. In March 2014, I was in distress and they decided to give me an emergency left ventricular assist device [LVAD]. An LVAD is, at its essence, a pump, and so I usually just say it’s an artificial heart pump. That’s the easy way of saying it. It just took over the pumping action of my heart. Actually, I felt quite good once I’d managed to recover from the surgery, which was pretty invasive and very scary. I had complications and so after six weeks I’d say more than half of which was spent in hospital, I was finally sent home and I felt good.
I was doing my thing around the house and then in the fall, October 2013, they called me in. They said they – actually they called me in as a backup to somebody else. They said they had a heart and so I went into the heart centre at St. Paul’s who had been caring for me almost since the beginning. It turned out after a full day of testing and waiting, mostly waiting, that the heart would be mine. So, that evening, on the evening of October 8th, was when I had my first transplant. I had complications, it was a very trying time for my family. I was in a coma for eight days while my organs, my other organs rebelled and failed, I was fighting infection. All of the possible things that could go sideways went sideways, but thankfully I pulled through and the docs and nurses figured it out, they worked really hard.
Following that, I slowly went back to work as a professor. I was stable for another couple of years, and then I developed a coronary vasospasm, which I could actually feel. It was really shocking and surprising to my team, also to me, because it’s a very painful angina. I was having it numerous times a day, through the night, and I didn’t – nothing happened. I couldn’t – I was basically living off nitro [nitroglycerin – a medication that provides angina pain relief], to kind of keep things going. Although my arteries were clear at the time of the provocative testing that I had to do to really get a confirmation that the vasospasm was in fact diagnosed as in December, Boxing Day that year which was 2017, I collapsed. I had a heart attack. It was revealed that I was in fact in full rejection.
All of my arteries were blocked with this coronary vasculopathy, is what it’s called. It’s a kind of plaque specific to transplant patients. I prepared myself this time, really prepared myself that I wasn’t going to live. They MedEvac’d me, we were in Edmonton at the time, they MedEvac’d me back to St. Paul’s because that’s where I wanted to be. If I wasn’t going to live, I wanted to be around my team who I considered my family. Also, I just felt safe there. Not that I didn’t feel safe in Alberta, don’t get me wrong, but it’s just a matter of where home feels. That was home to me.
Fortunately, they did enlist me for an emergency transplant, and two weeks after that listing on the 22nd of January, they said they had a heart for me. So, on January 23rd is when I had my second heart transplant and that was in 2018, January 2018. I’m happy to say that since then, I have been strong and healthy, in a really good physical space, more or less. That’s almost twenty years later, so that’s my heart failure journey so far. I know there’s probably going to be more, but that’s the long odyssey, as I call it.
Heart failure and heart disease is extremely important for women in Canada to understand because it is actually – heart failure itself is the leading cause of hospitalization in Canada only after giving birth and COVID. So, it’s really really important to understand that if not looked after properly, if not caught early enough, the chance of somebody ending up in the hospital with heart failure is significant. It’s all ages. In the literature, it says the average age of a person with heart failure is 65 or whatever it is, but I think I can say that there’s a lot more to it that heart disease, especially for women, is prevalent a lot sooner than we think.
So, it’s really really important that you look after your heart, you take care of your heart. For women in Canada, unfortunately, heart failure can be difficult to diagnose because the symptoms appear like shortness of breath, swelling in the ankles, fatigue, coughing, and a number of other things. So, it can be frequently misdiagnosed, which for women is very scary and happens more often than we would like. It’s an extremely important issue.
Women can get help and support from a number of different places. If not from your family and your medical providers, you can actually get support through the Heartlife Foundation itself [heartlife.ca], we have an online Facebook group, but we also have a number of online resources. We have a Heartlife academy [heartlife.ca/academy] so you can learn as you need to, when you need to, so we’re not giving you a whole booklet of information expecting you to memorize it. You can also get support through our women’s group, our affiliated women’s group, Canadian Women with Medical Heart Issues. There’s well over a thousand women in that group, and this is women with heart failure but with a whole other suite of cardiovascular issues as well. So, it’s a really amazing group, and I would highly highly recommend that if you have symptoms of heart failure, or if you’re newly diagnosed with heart disease, that you go there. They also have a website of their own called lifeinhearts.ca, where there’s a lot of women specific information posted there too. So, lots of opportunity to reach out for support and know that you’re not alone.
The women’s voices project is a very important project because it brings to light the experiences of women from across Canada, you know, from across healthcare districts, across provinces, and creates a commonplace for people to really learn about what it’s like for women in Canada to live with this condition. From the patient perspective, you learn about other people’s stories but you can also identify and recognize that a) you’re not alone, and b) you learn about what other people have experienced and learn from those experiences as well. Same for the medical professionals, so doctors and nurses and pharmacists and everybody else, they also get to see the other side of this heart failure experience, that if there are challenges, there are opportunities for them to step in and hopefully fill any gaps or they recognize that there’s things that they could potentially do differently, but also realize the things that they’ve done well. I think that there’s a really good opportunity for that, so I think it’s going to be a very important resource.
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