Lynda describes how she became involved in patient support and advocacy work.
Transcript
So, I just started helping people in the hospital because they needed it. And I told them I didn’t do it for them. I just said, ‘You need to talk to your doctor. Here’s the questions you need to ask. If they say something you don’t understand or they don’t give you a straight answer you push for it and don’t stop till you get it. And you don’t have to be rude or nothing. But when they find that you’re interested in learning, they’re much better – much more open.’ So, I was very lucky. The team of doctors I had throughout all of it, with the exception of my family doctor, were absolutely fantastic. They, they taught me a lot. They were very open, especially in the transplant team. And you know the biggest thing is that there’s so much advocacy going on now where doctors are getting you know patients with experience to be a part of grant programs. I’m on two committees with regards to making a heart failure book. We’re doing it all. Those type of things and the patient part of it. It should be patient-centered. And so that means us having a say and them learning to listen. And so for that I’m very grateful because I didn’t realise how many people out there didn’t have any support. I mean twice I was there for someone who had a transplant and had nobody. Like I can’t imagine you know. And in heart failure I met people in the hospital I still keep in touch with to this day. And we helped each other you know.
More from: Lynda
More content
- Mental Health & Emotional Support – LyndaLynda's husband and son experienced significant fears about her health.
- Mental Health & Emotional Support – LyndaLynda describes all the mental health support that she received as part of her care.
- Reflections on Identity, Life and Death – LyndaLynda wanted to spare her loved ones' pain and worry.
- Reflections on Identity, Life and Death – LyndaLynda talks about preparing her family prior to her transplant.
- Reflections on Identity, Life and Death – LyndaLynda describes how she became involved in patient support and advocacy work.
- Care Delivery – LyndaLynda describes pain from tests and procedures.
- Care Delivery – LyndaLynda talks about CardioMEMs – a device that remotely monitors for HF.
- Care Delivery – LyndaLynda advocates for both in person and virtual care.
- Heart Transplant – LyndaLynda waits for 8 months prior to receiving the call.
- Medications – LyndaLynda talks about the hope that new medications bring.