Living with Heart failure with preserved Ejection Fraction (HFpEF) | Cynthia’s story
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Living with Heart failure with preserved Ejection Fraction (HFpEF) | Cynthia’s story

December 5, 2019


– I love gardening. I just, I love being with nature. I just like painting. I love experiencing the world differently, experiencing the world
the way other people do, seeing the world through
other people’s eyes. I can’t travel alone anymore, and that’s been very discouraging because there’s some things I can’t do, and I need to ask for help. (gentle music) My pulmonologist said,
“I know a cardiologist “I want you to see.” He said, “Your heart is
small, and it’s hardening, “and it doesn’t let the blood in “to get out to your body. “That’s why you cough “and have all these lung-like symptoms.” And I said, “Okay, what’s the treatment?” And that’s when it got really hard. There is no treatment. And I said, “Okay, what’s the prognosis?” He said, “50% of the
people with this disease “live about five years from diagnosis.” It was devastating. The conundrum, I guess you would say, of this disease is it
makes you want to be still because when you’re
still, you can breathe. You don’t cough, but when
you’re still, you get weak, and then the disease is in control. I think of HFpEF as a chameleon disease because it can fool people. It changes its colors according
to what you wanna see. A lot of people with this
disease get misdiagnosed. They get turned away from care. I’ve always been an extraordinarily, irrationally independent person, and now I have to be dependent in ways that were hard
for me to adjust to. I’ve only had one major hospitalization. I just came through that. Once you start being hospitalized, your course gets a little rockier. The only advice I will always give people is that time with the
doctor belongs to you. You are the center of attention. No one else in that room
matters as much as you do. It’s your body fighting itself, and you’re fighting to stay
alive and to stay active. You have to get up and go and move, and when you think you
can’t go any further, it’s really important
to go a little further. I just like to walk, and walking is one of the best
things you can do with HFpEF. I just like to get there with my paints and have fun, and that’s what
I want HFpEF patients to know. We still have meaningful life. We have a right to be seen, to be heard and to be understood. (gentle music)

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