By Darby Kendall
For the first 60 years of her life, Sara K. couldn’t exert herself without fear of fainting due to an undiagnosed heart condition. Then, an OHSU cardiologist diagnosed Sara’s disorder and gave her the medical care to help fix it. Now in her early 70s, Sara doesn’t let her condition slow her down. She still visits OHSU for routine care and is co-chair of Mended Hearts on the Hill, a women-centered cardiac survivorship group. Listen as Sara sat down with the OHSU Foundation to share her story.
Transcript
All my siblings and I learned to swim, but I could not swim from one side to the other without halfway across feeling really, really lightheaded and going, ‘keep breathing, keep breathing.’ Now, I have to get used to being like the rest of you. Three mornings a week, I’m in the pool with a whole lot of other folks, and it’s like, ‘Yeah, but I can’t go to the deep end, because what if I have to tread water really hard, and then I get lightheaded, and then I sink to the bottom.’ So it’s been, wear a flotation belt and then discover, ‘Gee, I took the flotation belt off, and I didn’t sink, and I didn’t pass out.’ So I just keep trying different things that were scary for me before.
For the majority of her life, Sara K. couldn’t exert herself without fear of fainting due to an undiagnosed heart condition. Then, at 60 years old, she met with a former OHSU cardiologist, Dr. Stephen Heitner, who was finally able to put a name to the disorder, hypertrophic cardiomyopathy, and Sara was given the medical care to help fix it. Now in her early 70s, Sara doesn’t let her condition slow her down. She still visits OHSU for routine care and is co-chair of Mended Hearts on the Hill, a women-centered cardiac survivorship group that provides support after cardiac events and peer-to-peer mentoring. Listen as Sara sat down with the OHSU Foundation to share her story.
When I was 10, the family’s pediatrician said this child has a louder heart murmur. Now, back then, the only way to look at my heart was to give me something that tasted very much like ground-up chalk, and then they would look at a shadow. That was in the early ’60s. I’ve always consistently had cardiologists say, ‘There’s something wrong, but I don’t know what it is.’ Six months after my now-37-year-old son was born, I had open heart surgery to repair some scarring, but nobody it gave it a name and said, ‘We’ve got a solution.’ Then, a new cardiologist came to town 12 years ago and said, ‘I know exactly what you have.’ He said, ‘I’m gonna medicate you first. Here is my personal cell phone number and my cell phone number here at OHSU. If you have any problems, you call me directly.’ And then I came back to my three month appointment and said, ‘Is this how the rest of you feel?’ And he said, ‘Yes, this is pretty close to the way the rest of us feel.’
My heart problem restricted me in ways that I still today go, ‘Oh, that explains why I have that behavior.’ I’m a whole lot finer than I’ve ever been, and a lot of that is simply being a part of the OHSU community and having them say, ‘Well, let’s try this. Let’s see what happens.’ HCM’s discovery is really new compared to a whole lot of other things. I’m just riding along while modern science gets better.
When Dr. Heitner and I started working together, I had always felt this way, but didn’t know who to ask. I had always wanted to know other healthy cardiac patients. I mean, I’d walk into the clinic, you can’t very well walk up to somebody in a clinic that you don’t know and say, ‘Hi, I’m a heart patient too.’ I wanted support. And I read one of OHSU’s newsletters, and it said that there was this group that met once a month in the Women’s Health Clinic up on the hill. And I thought, ‘Alright, I can go once,’ got there and was welcomed to a great community. I’ve learned a great deal about how to advocate for myself. Speak up when you have a problem; ask for what you need. Keep track of your own numbers. Mended Hearts provides me with exactly that: a community of like people who have the exact same questions that I have. Simple questions like, ‘How do I talk to this wonderful, talented individual called my cardiologist? What can I ask?’
Even though my surgery was seven and a half years ago, there are still times where I’m surprised at what I can do. The blood is flowing really, really well, and it’s a matter of now for me and my brain to just simply say, ‘You can walk faster and harder; you can run, and you won’t pass out.’
