Patient partners

         

Donna Hart

Donna Hart, a 56-year-old from Ontario, went from being carefree to bedridden in just a matter of weeks. December 2014 I was diagnosed with Heart Failure, and in May 2015, I received the gift of life a new heart. A heart transplant is a treatment not a cure for heart disease. My life took a turn that I could have never expected. I am continually grateful for those who have chosen to study cardiology and the advances their research has made in improving lives. I am grateful to my donor family who in a time of insurmountable grief, made a decision that saved my life.
There can be hope even in our darkest days. Hope that we will get better and return to the life we once had. In June 2016, 13 months post transplant I rode 50 km in the Ride for Heart with an average pace of 20 km hour. I have competed in 2 Canadian Transplant Games; setting Canadian records swimming in 50 breaststroke, 50 and 100m backstroke, and cycling in both the 20 km road race and the 5 km time trial. Thank you so much, I am so very grateful! It is so important to fund heart and stroke research so that all of us can look forward to longer healthier lives free of heart disease and stroke. Are you interested in knowing more about my cardiac journey? You can read about my transplant story in Best Health Magazine

https://www.besthealthmag.ca/best-you/heart-health/true-story-i-survived-a-heart-transplant/

[Watch the video]  

Angie MacCaull

My name is Angie MacCaull and I live in Summerside, Prince Edward Island.  At the age of 45  I thought I was the healthiest I've ever been until a dye test revealed that I had 8 blockages and required immediate triple bypass surgery.  How did this happen? I was not over weight, I did not smoke, I did not have diabetes, I did not have high blood pressure or high cholesterol...in fact, I didn't appear to have any risk factors.   The doctor's also discovered I have a bicuspid valve with an aortic aneurism, a congenital heart defect no one was aware of, so during my bypass surgery, they replaced my aortic root. I will eventually have to have my valve replaced.
Since my diagnosis, I have learned that having miscarriages and fertility issues put me at higher risk for heart disease, something I was never made aware of before. I am now a mother to a little girl so helping uncover how sex and gender plays a role with chronic disease is more for her now.

Kyle Warkentin

My family has a long standing history of heart related diseases from chronic conditions to acute onset. Aneurysms, stroke, and hypertension leading to long term heart disease and eventual heart failure are extra prevalent on the ladies side of my family. My grandmother suffers from a multitude of heart conditions, including a consistent level of fluid in her pericardium. My grandmother has a pacemaker and is generally healthier than she was before.
My mother has a complex level of health conditions related mainly to her weight. My mom has suffered from hypertension for the last 15 years, and more recently has suffered events which included a heart attack.
Both my mom and my grandmother basically raised me as a child as my dad left when I was born. Their strength together is what leads me to believe that a strong support system is essential to survival. We have utilized the resources of the Heart and Stroke foundation to assist us in the recovery, however there are a multitude of challenges associated with a person's individual conditions.
Sex and gender is important as sex and gender affects each person slightly different. Knowing that women are at a significantly higher risk for heart disease than men is important. Understanding that women go through exceptional physiological changes including menopause, pregnancy to name a few, it is imperative that women are taken and given different education and treatment plans than men. In the case of heart disease women and men differ significantly. I have seen my mother and grandma both have to fight with their GP in order to be taken seriously. That, to me, is very disheartening when women are not taken seriously. I remember my mom was told it is just stress and she should eat chocolate!!! What a joke!
I am here to be the voice of a patient advocate, and provide my educational background as well.

Jeanette Smith  

Hi, I am Jeanette Smith, from the lovely little city of Chatham, in the SouthWest of Ontario (about halfway between London and Windsor).
My heart journey started in 2007, when I had open heart surgery to replace a defective aorticvalve. Everything went well, and I was soon back to my normal self. In December 2013, I had my first bout with flash pulmonary oedema; I had a cardiac arrest in my local community hospital, and was transported to the nearest tertiary care hospital. I spent more than 2 weeks in ICU, most of it intubated, and a fair amount of it unconscious. Approximately 15 months later, I did it all over again – except that I managed to stay in the local hospital,and was only in for a few days.
I found out, about a week later at a follow-up appointment with my primary care physician, that I had heart failure. 15 months after that, I was once again hospitalized. But two big changes this time – first that I did not have a cardiac arrest, and second I got a good specialist in internal medicine. I was put on all the good drugs and was referred for a cardiac defibrillator (implanted July 2016). I enrolled in a 6-month Telehomecare monitoring/education programme for heart failure, which taught me how to manage my condition – heart failure is a chronic, progressive condition. There is no cure, but a good quality of life is obtainable with good management. While my journey has not been affected by my sex or gender, I have been involved in patient engagement activities, and was a participant in the Women's Needs Assessment for Heart & Stroke. They have also published a few reports, including “Ms. Understood” (the 2018 Heart Report), and the 2020 Heart Report, “Spotlight on Women: A fighting chance” . These reports, and others, show that women's heart health is under-researched, that women are underdiagnosed, under-treated, under-supported and women are under-aware about their heart health in general. As well, I am active on a few online support groups for heart patients and/or their families/caregivers, and the amount of women in these groups that have been mis-diagnosed, turned away from emergency rooms, have primary care physicians who do not take their symptoms seriously and so on, is incredible. There are many initiatives.

Myra Lefkowitz

 My entry into the world of heart disease was like so many others - unexpected and life-changing. I had a major heart attack while on a 14-day canoe trip in the Northwest Territories, Canada. It was my good fortune that one of the three other women on the trip was a doctor who recognized the signs of a heart attack in women. I certainly had not recognized it. I was evacuated by floatplane to Yellowknife hospital and then flown in a medivac to Edmonton where I had four stents inserted into three arteries. I was so lucky. I have learned so much about women and heart disease since then. And I have met extraordinary women who are living with heart disease or recovering from a stroke and many of us tell very similar stories. These stories are about denial and minimization of our own signs and symptoms, about focusing on our kids, partners, work before ourselves, being dismissed by healthcare providers or sent home from emergency departments. For many women, the heart is repaired but the anger at the system remains. The involvement of patient partners combined with the focus on gender and sex in non-communicable disease research will hopefully address these disparities and result in the articulation of research questions, outcomes and results that will have a direct impact on the lives of all patients and survivors. I'm thrilled to be part of this exciting work.

Ann Keir, Ladysmith

I am a seasoned hiker, so when I experienced a tight feeling in my left arm and became somewhat breathless on a steep ascent, I was somewhat concerned, especially when these symptoms persisted over the next several hikes. I therefore decided to visit my GP, who told me that it was muscular and nothing to be concerned about. This was in January, 2016. Over the next year I experienced the same symptoms of pressure and breathlessness on ascent, which abated in a few minutes after rest. I was also experiencing periods of extreme fatigue, which I had never had before. I again visited my GP, who ran all the relevant tests with results that seemed to indicate there was nothing to be concerned about, however, to err on the side of caution she decided to send me to an internist. The stress test he performed indicated that there were indeed issues, so I was then referred to a cardiologist, who three months later performed an angiogram. The outcome of the angiogram indicated that I would likely be a candidate for hybrid surgery, but I was told that the final decision would be made by the surgeon. A few weeks later I met with the surgeon and she decided that I needed a quadruple bypass and scheduled me for the surgery within two weeks, December 28, 2017. The surgery went as planned and I had no issues, although when I did my first short 6 km hike about 4 weeks later, I was still getting very breathless going uphill and was actually performing worse than pre surgery! At my 7 week check up I was given a stress test, which was stopped almost immediately. The cardiologist suggested that another angiogram was needed to ascertain the problem, so I was put on the wait list for an angiogram and told that it would likely be three months before I had this. In the next 8 weeks I was in Emergency twice as it felt that I could not get a deep enough breath and was experiencing pressure in my back. I was then given an angiogram on a semi urgent basis, which revealed that three of the grafts had failed, although the mammary artery graft was strong. I then had four stents inserted. It would appear that the grafts had failed quite quickly and I was told that they could not even detect the saphenous vein graft. Since then, I have 'up' days and 'down' days and have never got back my pre surgery strength, however I still do all the activities that I did before, but not so high, not so long and not so intense is now my mantra.

My interest in sex and gender began with my own experience with heart disease, specifically in relation to diagnosis, treatment and follow-up, however when I listened to the accounts of other women in my support group, it seemed to me that there are times when medical personnel are not able to step outside the box of classical thinking in relation to heart disease, as often symptoms were missed or mis-diagnosed and follow up was not always part of the treatment. Although research in the past was mainly male based, it now seems to be suggesting that women in fact do have many of the same symptoms as men. Why then are they not being dealt with in the same way. Could this be gender bias ? When I read that the main aim of GOING-FWD is “to consolidate sex and gender related determinants of health and well being in chronic diseases”, I was hooked, so to speak. My other interest in GOING -FWD is a more personal one. My heart disease, I am told is due to my Celtic genes, and since I have two daughters, there is a likeliehood that they may also have inherited heart disease. If I can in any way help to improve the situation for them and others, it would be a worthwhile endeavour.

Nicole Nickerson

My name is Nicole Nickerson, I am 36 years old and live in Lunenburg Nova Scotia. Six years ago my journey with heart disease started with the sudden death of my Sister aged 25 to a heart event. I myself went on to have two Non-Stemi MI’s the second while pregnant with my son.  Sex and Gender in medicine is very important to me because as a female I experienced first hand the challenges and barriers unique to both my sex and gender. As a Mother of both a son and daughter I would like to think that if presented with a chronic illness they would have equal outcomes.

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