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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Laura Rivera - phaware® interview 247

May 17, 2019

 

Patient Laura Rivera has contended with Pulmonary Hypertension for 24 years. She hasn't let the disease stop her from achieving her goals. Laura will be receiving her Bachelors Degree in nursing in a few weeks time and beginning her graduate studies in the fall.

My name is Laura Rivera and I'm a pulmonary hypertension patient.

We need to get the word out so that people understand this illness. I was diagnosed back in 1995 when it was rare. There was only one medication and no one really knew about it. I was diagnosed by Dr. Robyn Barst and she really helped me understand and she walked me through how to handle this illness when it was so brand new back then.

The sooner you know what's going on with you, the sooner you can get on medication and start feeling better. I was diagnosed by fluke. I was doing a medical assisting program, and the professor who was teaching us how to read EKGs was a cardiologist himself. When he read my EKG, he was like, "Oh no, there's something wrong with you. You need to go see a doctor right away."

I do the telephone support line in Spanish. I also co-lead the Spanish support group in The Bronx, New York. I'm always, you know, trying to tell people who are interested in knowing, because I'm on IV Remodulin, so they see my pump, they see my line. Or if I'm walking around with my oxygen, they're always asking me, "Well, what is it that you have?" So I'm always happy to educate on the street.

Back in 1995, there was only one medication, which I refused to go on. I said to Dr. Barst, "Put me on all the research [studies] that you can. I'll do it." I did the study for a medication back then that, it didn't get approved, but it's good to do that because you can tell what works and what doesn't work. It's so much easier for them to just decipher, okay, this is not good for you, because now there's so many types of medications that you can pick and choose what is going to work for the patient and not. It's very scary in the beginning, but take a moment. Take a deep breath and keep striving for what you want. Don't let this illness stop you. I just recently graduated with my Associate's [degree]. I'm going back to do my nursing and it's not going to stop you. As long as you do what the doctor tells you to do and take good care of yourself, you can go ahead and achieve your dreams.

My name is Laura Rivera and I'm aware that I'm rare.

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