This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it via the transcript that runs below.
I’m Aware That I’m Rare: Christine Liles
The phaware™ interview
Pulmonary hypertension patient Christine Liles lives on oxygen 24/7. She was born with serious heart and breathing problems, as well as scoliosis. While Christine is dependent on O2, she is quick to assert this doesn’t mean her life is over. Christine also is a blogger who shares her experience on Living on O2 for Life.
Hi, my name is Christine Liles, and I’m from Fort Worth, Texas.
I was born with PH, among other medical problems, such as an ASD and a VSD, and restrictive lung disease, and scoliosis, and a couple other things that go along with my story, I guess. I’m 46 years old, so it’s been a while.
When I was born in 1969, they didn’t have anything for PH. It wasn’t really popular, nobody really knew a whole lot about it. I was just restricted from gym class and stuff like that. As I grew older, after my open-heart surgery, the pulmonary hypertension seemed to kind of decreased as a problem. I was okay for a while, I actually was able to work full-time for a few years. Then, in 1992, I started having serious breathing problems, and then my heart started to have arrhythmia problems.
I had to stop working, and after that, like a year later, I started having even more breathing problems and heart problems together. I had to go on heart medication, and after that in 2006 when I was just having so much breathing problems, I went to UT Southwestern and did a heart cath there, and started trying different medications. Whatever I tried it was either helpful for my lungs and hurt my heart, or it hurt my heart and made my breathing a lot worse.
Life is very difficult, even just as a normal, healthy human, but when you have a breathing problem such as pulmonary hypertension, something that’s not completely visible to an average person, there’s so many different challenges that a person that has PH goes through that is not just out there, that’s so visible to anyone else.
We have to find different ways to go about doing just the normal things in life, like chores, like around the house. To be able to pick up something on the floor, instead of bending over and picking it up because it caused me such shortness of breath. Even talking right now is a challenge. I’ll just use my foot and pick it up, and bring it up to my hand. With washing my hair, since it’s harder for me to keep my hands up to wash my hair, I’ll bend over and bring my hands up to that level instead of all the way up.
It’s just these simple things that should be so easy to do that no one really realizes that they’re very hard for people that have pulmonary hypertension. Even though you may, as a normal, healthy human, see us look healthy, we are faced with so many challenges. It would be nice to be able to be recognized that I’ve been able to overcome a lot of the things that I didn’t ever think that I would be able to do, and still be able to have a good life.
I never thought I would be able to get married or have someone love me for who I am. I have found someone, and I’m happy. Even though my health isn’t that great, I’m still able to be able to find things to do, like crocheting and gardening and stuff like that. It may not be the typical way, but it’s my way. I’ve made it my way. It’s something that I can do that keeps me happy. I’ll always try to find things to keep me happy, because if I don’t stay happy life isn’t fulfilling.
That’s one of the things I try and tell people, that yeah, my life may seem rough, or difficult and challenging, but if I don’t fill it with things that are exciting for myself, then it will be a bad life, or a not that great life, or not worth living. It is to me because I always find my way to find things to do that I can still do.
My name is Christine Liles, and I’m aware that I’m rare.
EVERYBODY HAS A STORY. WHAT’S YOURS?
phaware wants to share your pulmonary hypertension story with their engaged global audience. Whether you are a patient, caregiver, or medical professional, they are enlisting PH community members from across the globe. Visit www.phaware.global/podcast to share your story and to be considered for a future episode.And learn more about pulmonary hypertension at www.phaware.global. #phaware #phawarepod
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