Hello. My name is Paula. I live every day with heart failure.
I was born with hypertrophic obstructive cardiomyopathy. HOCM for short. Basically, it means my heart muscle is too thick, making it harder to pump blood.
In 2008, my doctor noticed the murmur associated with my HOCM was getting louder. In 2010, I had to undergo an open-heart surgery to relieve the obstruction. Unfortunately, I had to undergo a second open-heart surgery in 2012, as the first surgery in 2010 was unsuccessful. I was medically managed until 2020 when I underwent a third open-heart surgery to replace the aortic and mitral valves.
Throughout these past 12 years I’ve learned a lot about heart disease. I’m on a multitude of medications and have had frequent hospitalizations, despite the surgeries. From all this personal experience, I share a few tips.
Paula’s learnings and advice:
1. Develop a strong and healthy relationship with your clinicians
We need to develop a trusting relationship with our doctors so that any symptoms can be met in a collaborative way to reach a common goal in our health recovery. When things don’t go to plan, don’t be blaming. Instead, focus on stating the facts and getting the facts, on learning together – even when things go wrong.
Be a partner with your care providers and strive to create an open and honest relationship.
This requires empathy, compassion, and understanding from our doctors who sometimes aren’t skilled in these soft skills. But it is these skills we are deserving of, so telling our story to our doctors is critical, even if they don’t ask.
2. We must advocate for ourselves!
Tell your story until they hear you. Only you know your body and symptoms best. I passed many tests yet was still so short of breath and so tired. Many times, in defeated frustration from the doctors in the ER or hospital admissions, they surrendered to believing it must be my nerves.
Only later was it found that my illness was presenting itself outside the norm – it was a huge learning for them, too. It felt so discouraging to not be believed.
I learned to speak up and risk challenging my doctors, who I think deep down were equally as stumped as I was on why I was not doing better. Despite our clinicians’ expertise, asking the right questions to get the right answers is critical. Don’t be afraid to repeat and ask again if the answer is not clear.
Patients with lived experience bring a lot to the table. Gone are the days where a patient felt the unequal power balance that can occur during interactions between a patient and a specialist. And it’s our job to advocate for our needs and wants. Caregivers equally have a role in advocacy. Together with a strong and healthy relationship with our doctors, we can achieve good healthcare outcomes.
3. Become a historian of your health journey
Create a diary of your visits to your doctors. I carry a binder with me of all my medical reports when visiting my doctors. It’s so easy to forget medications, procedures, and results as time passes. Keep this updated and close at hand, as often you’ll have information your care team does not (especially if you are in the ER or with a new provider).
4. Ask for help when you need it
My mental wellbeing suffered as a result of my heart failure. Living alone with no family close by made it even more difficult to manage on my own. I have a nurse who visits regularly through home care and an excellent team of health care providers, yet depression did creep in and thankfully I asked for help.
When heart disease patients do not receive the adequate support for mental health it can certainly hinder our recovery and decrease our motivation to find help.
Prioritize your psychological care and seek emotional support if you feel down or sad. The earlier you ask for help, the less you will suffer. No one should ever suffer in silence.
5. Build your self-esteem to master your self-advocacy
Because I was depressed, my self-esteem suffered throughout all these years. What really helped was figuring out my needs and wants. Then I could strategize how I was going to achieve them. I wanted to be able to walk without becoming so short of breath. I wanted to gain my energy back.
Building up our self-esteem gives us the confidence to ask questions that we have, trust ourselves and our feelings about how we are doing, and push for action even when it doesn’t feel emotionally safe to do so.
- Learn to be a good historian about yourself and your health journey.
- Keep a binder or folder with all your records, tests, and notes.
- Ask the right questions to get the right answer. Don’t be afraid to repeat and ask again if it’s not clear.
- Don’t be blaming. Focus on stating the facts and getting the facts, on learning together, even when things go wrong.
- Be a partner with your care providers. Create an open and honest relationship.
- Ask for help. Psychological care should be prioritized. This will increase your mood, confidence, motivation, and state of well-being.
- Build on raising your self-esteem to master self-advocacy and robust mental health.
- Practice mindfulness.