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).
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.