Vicki Banos - phaware® interview 281

Pulmonary hypertension patient Vicki Banos discusses her PH diagnosis. 

My name is Vicki Banos and I'm a pulmonary hypertension patient.

I had had a knee replacement in Denver in 2012, and I began to feel really weak and fatigued. I couldn't walk two blocks. I had some other things going on at the same time. I had an undiagnosed cough for about eight years. And I was seeing an allergy asthma doctor and they thought maybe I had a blood clot from the knee replacement. So, it started with a V/Q scan. Then I ended up fainting and going to the ER a couple times and I failed a stress test. Then a doctor there said that I needed a right heart cath. I had two of them and they diagnosed me with pulmonary hypertension.

I was originally from New Orleans, so I had moved there after Katrina. I was alone. I didn't have anyone going with me for any of this. So, it was a little shocking at first. I just decided to Google it as much as possible and learn as much as possible about the disease. So, I've tried many medications and I recently moved to lower altitude, to Florida. I'm feeling a lot better, although I still have good days and bad days. I really try to be very positive, because I think that that's the most important thing.

I actually met some pulmonary hypertension patients when I was going to National Jewish [Hospital], in Denver, just sitting in the waiting area. But I hadn't been to any support groups or anything until when I got here to Florida. That was very helpful meeting other people that had the same disease. Up until now, it's been pretty much me managing my disease by myself and my doctors.

At first, I thought it was a death sentence. I didn't know how long I was going to live. It was kind of scary. I didn't go out a lot. I didn't do a lot of things. Now, I try to go to the beach four times a week. I go out. I don't let it stop me. I do a lot more things. I think I'm actually feeling a lot better. I encourage people to get out and not let it stop you from anything that you want to do.

One of the things that I've noticed is that when you don't look sick, people don't think you're sick. I think that's one of the biggest things, because I have really great days and then I might have a bad day. I think that awareness is important, because it's kind of an invisible physical disease, unless you have oxygen tubes. Not everyone always knows that you're sick and they think, "Oh, she looks great. So, there's nothing wrong with her." You really need to be your own advocate. You need to learn about it. Don't just trust in other people to take any medication. Learn a lot about it and be good to yourself.

It's good to know other patients. I Facebook with other people around the country. That's been really, really good now, having other people to talk to about it. It's always a learning thing. Everything's new every day.

My name is Vicki Banos and I'm aware that I'm rare.

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