“If you don’t like something but you have the power to fix it, it’s on you. This is me trying to fix it,” says Danaka Porter.
Danaka recalls her history with supraventricular tachycardia(SVT) and how she leveraged that experience and unique understanding into her current role, amongst many other accomplishments, as PhD Candidate, Cardiology.
“I was 22 and bobsledding with Team Canada and I kept getting these episodes where my heart rate wouldn’t come down. And it was getting to the point where it would last, not five to ten minutes, but hours and then into days. I went to see specialists in Vancouver and they sort of freaked out about it like why is someone in their early 20s experiencing what’s called supraventricular tachycardia(SVT). They said every time you have this you need to go to the hospital because we need to medicate you, but the issue was they couldn’t put me on a beta-blocker to slow my heartbeat because I was an athlete and I had to perform. It was like, here is a simple answer, but I couldn’t use the simple answer because that would mean I had to end my career and I didn’t want to end my career, I wanted to go to the Olympics.”
Danaka began to see multiple specialists and team physicians to help manage her SVT. As a training and traveling athlete, she had to attend these appointments mostly by herself.
“I’m hearing all these terms, like T wave and I’m googling what is a T wave? or what is a QRS complex? And I was by myself. I was flying back and forth between Calgary and Vancouver for training and I was split between two different health authorities that of course don’t share information. I ended up seeing all these specialists and I’m trying to relay information back-and-forth and no one will give me print-out results so I’m trying to take notes. It was quite frustrating and being so young, I was just being told to go do this stuff, but why? I learned that I had to take on a lot and I had to figure out what were the best steps for me. I started journaling and documenting so that I could feel good and not feel like my heart was going to jump out of my chest.”
Unfortunately, Danaka had to retire from bobsledding after suffering a very serious concussion on her 24th birthday.
“Then everything was quiet for a couple of years. I got into the supply chain and I was consulting. One night I had a really bad experience with AFib and I had to call the ambulance and they did the portable ECG and they were all freaking out. I had to see a different round of specialists including an endocrinologist, an internal medicine specialist, and a cardiologist. I was in a new health authority and I was not on the bobsled team anymore so I didn’t have access to my previous school of doctors. It was like starting from square one. Some of them saw me as this fascinating patient because I was 28 and female. You’re treated as this weird and special case. It’s great because you get to see all these specialists faster but you’re treated like the heart is the issue but there’s still a whole body attached to it.”
Following her experience with AFib and her introduction to a whole new care team, Danaka discusses once again her feelings of having to take on a lot by herself and how she used that as motivation to speak out.
“Again, I was doing this alone. I didn’t have parents coming with me and I knew all my friends were very busy. It’s a big ask to have them take three hours out of their day. I’m having to navigate and speak up for myself. Somehow, I got referred to see Dr. Satish Raj. He was the fourth or fifth cardiologist I’d seen in probably four or five years and he treated me as a person. I brought my notebooks and journals and he was interested in what I had written down and he thought it was important that I was noting all this stuff and so we had a candid conversation. I was asking him why he didn’t ask me these questions because this relates to this. He was like you ask very interesting questions and I think it would be beneficial for other cardiologists to hear, you should get involved with CANet. I started going to CANet conferences and others and getting confident to put my hand up and ask questions. Like why are you not humanizing this more with respect to the procedures that you are putting us through. Cardiologists would come up to me after and say that they are so glad that I speak up, it brings it back to why they are practicing medicine. That seemed to get a lot of traction and I was getting a lot of positive feedback.”
Although Danaka’s voice was gaining traction, it wasn’t enough. Her experience navigating through multiple clinic appointments and gathering information motivated her to push forward in an effort to fill gaps she identified in care.
“I found that the patient voice was not listened to enough because there wasn’t enough weight to it. How do I become more knowledgeable about myself and how do I get other doctors and experts to listen? I would like better access to resources for myself and others and how am I going to do that? If you don’t like something but you have the power to fix it, it’s on you. This is me trying to fix it. I didn’t like how I went through it and there’s so much more that needs to be done, especially around females in cardiac care. I got to start doing my PhD and it’s cool because I get to study and to learn about issues that impact me and I know through doing my research work that I’ll get to give back. I will get to change how cardiac care is looked at done and that’s a big deal for me.”
With a Masters in Engineering from the prestigious Massachusetts Institute of Technology (M.I.T.), Danaka is currently enrolled as a PhD Candidate in Cardiology at the University of Calgary. True to form, she’s excelled and is far ahead, meeting all her 18-month milestones at six months and earning an extra scholarship. When asked how others, inclusive of patients and physicians, can support cardiac research and care in Canada she responds with a challenge for more advocacy.
“Asking for more research or requiring research from different views or different demographics. We don’t have it. Now’s the time to start asking. We need people to begin to ask because as soon as people do, then we can begin to see that there is a gap in knowledge and we can begin to fill it. Even as a cardiac specialist, they should be looking at their patient population and say wow the research that I can look at is not resembling my patient population, therefore I should also be asking.”
Danaka concludes with a few words to inspire more compassion and understanding in care.
“I don’t think anyone’s journey is fantastic when they have cardiac issues but I think mine was really not great. It’s really crucial for all practitioners, researchers, and specialists to understand that your patient has emotions and feelings, and the words that you choose to say carry an immense amount of weight. Your patient is a person that has a health issue, not a health issue that is oddly attached to a patient.”