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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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Rochelle Earp - phaware® interview 268

Jul 30, 2019

Pulmonary hypertension patient, Rochelle Earp discusses the importance of early diagnosis and the importance of in-person and online support in battling her rare disease.

My name is Rochelle Earp, and I am a pulmonary hypertension patient.

My family physician knew about pulmonary hypertension. I actually thought I'd pulled a muscle and I have asthma, so I was having some issues breathing and I blamed my asthma. Then I ended up going to the emergency room about five times. Finally, I went to immediate care because at one point the nurse said, "You don't need to come back, you're fine." So I went to immediate care and they said, “You probably have early onset pneumonia because of the fact that you have asthma.” So [the doctor] gave me the treatment for pneumonia, and I didn't get better. Then I went to my family practitioner, who that day made sure I had an echocardiogram, and an EKG, and that was about a week before Christmas. Then two days before Christmas he said, "I guarantee you have pulmonary hypertension, but I'm not the specialist that can diagnosis you properly." Two days after Christmas, he had me in with a cardiologist and then a week later, a PH specialist. So I'm a very lucky person that my primary healthcare physician knew what to look for.

When I was first diagnosed, I did what anybody else who's diagnosed does, you Google it. That is the worst thing you can do is to Google this disease, because the information is very outdated. The first thing you read is that people who have pulmonary hypertension have a life expectancy without treatment of 2.8 years. At the point you found out, this is what you have, you don't know that, you know, how long you've had it for, so you start to panic or become depressed or upset, because you don't know if you're going to live long enough to see the specialist. It scares you. Google will scare you. Don't Google this.

But once you see somebody and they explain things, like the first thing I did is sought out groups. My husband, who is amazing, showed me this podcast of somebody who had pulmonary hypertension for 20 years, and that gave me inspiration, because then I knew, "Okay, I'm going to live long enough to see this doctor. I'm not going to pass away before I get help or treatment or medication." I never heard of pulmonary hypertension before, and I think it's super important that family health physicians get some education about it instead of passing it off as asthma and chronic fatigue, emphysema, COPD, because it's a very rare disease, but also it can be undiagnosed in some people for so many years, and I don't think it's necessary.

I'm a success story where my doctor knew what to look for and he made this diagnosis early and he made it possible for me to get treatment earlier than a lot of people out there. I think that's super important. I didn't think I was going to have a future. I think a lot of people think that way once you get this diagnosis and you learn what it can do or what it does, and then when you meet people, all kinds of support groups out there. There are so many people on the internet, there is Facebook groups, and support groups. There is in-person support groups. Even if you have to drive two hours, it is worth having those people that have this illness with you. It can be very isolating because you look completely healthy and normal to everybody else, but on the inside, you feel, “I'm not like everybody else. I can't breathe sometimes. I'm short of breath. I can pass out. I get tired easily.”

It's so important to have these people who go through what you go through and understand what you're going through to have these discussions and know. They also give you hope because a lot of these people have been diagnosed for 10 years, five years, 20 years, just an amazing amount of time, and it gives you hope. I'm not alone, and I can live a very longtime, and I can live a very successful, healthy style of living with new limitations. I think that's important too, because a lot of people say, "Well I don't really want the pump." Well, you know what? If I need the pump in five years, give me the pump, because I'm going to be happy that I'm breathing and I'm here, and that, I think, is the best takeaway from any kind of serious disease is knowing I'm still breathing. I may not be able to breathe well, but I am breathing.

You have to be positive. You can be negative too, trust me, I have my whiny days, and cry, and get upset. That is okay, because you can't hide your feelings, especially from yourself. If you're going to have a bad day, have that bad day, but pick yourself up, dust yourself off, and say, "You know what? I've had all these days already. Some of them weren't successful, some of them were successful, but tomorrow it can be better."

I get the, "Well at least it's not cancer", because I had family members who have had cancer. Well, no it isn't, but it is bad, but even cancer patients stay positive. My stepdad and my stepsister were amazing people, and I think that's where I learned this attitude from is be happy, because you are here.

My name is Rochelle Earp, and I am aware that I am rare.

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