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

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Margaret Owens Transcript

Nov 14, 2016

CTEPH patient Margaret Owens shares her pulmonary hypertension diagnosis story and how he life changed after she received a V/Q Scan and surgery to cure her rare form of PH. 

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My name is Margaret Owens from Richmond Virginia. In 2011, I was on my way to work and I got in my car and I only could take a few steps without getting short winded. I moved a little while further and I said oh wait a minute. I got so I could count to 40 before I had to stop and rest.

I went to the emergency room and they told me I was having a heart attack. I spent the weekend there. Then they did a cardiac cath and that led me to know that I had pulmonary hypertension. In 2012, they found the clots by doing a V/Q scan and then they sent me to California to have surgery. Three days later, I felt like a new person far as walking and breathing. I could actually breathe. 

To go up a bunch of steps was impossible, to go up an incline was impossible for two whole years. It took away so much out of my life. I said to my siblings, I said, "If I have to live like this I can't do it." I can't do it because I'm an outgoing person and I did a lot of volunteer work. I just wanted to go out and do what I did best. Pulmonary hypertension and I did not get along doing that. Just anger at first. I was angry.

I said what's going on. I talked to the Lord about it and then I said okay wait a minute. I was getting depressed, I was downtrodden, it was just awful. It was a terrible experience and I don't want to wish that on anyone. Anything I can do to help somebody else, that's what I want to do. 

The day that I woke up they got me up, walked me around, I could do the six minute walk. After I did the six minute walk I start doing the twelve minute walk and after that I was going up and down the steps. I stayed in California about three to four weeks. When I got home I could actually go upstairs and go to my bedroom and it felt so good, felt really good. 

I joined a support group and I listened to everybody's story. Of course, everybody's was different from mine. It's about 23 people in my group, I'm the only one that had the type that I had, the CTEPH. Everybody else had a different type. I thought it was just such a rare thing for everybody to be having different things. Some of us on the same medication. Medication was so expensive. Then we got the medication. Started taking it and doing better.

When I first got this thing, I said what is this? When I went into the hospital my doctor said to me, "You have pulmonary hypertension." I said, "What is that? Is that something a pill I can take and it'll just go away?" He said, "Oh no." I said, "You got to be kidding me." Of course I got a second opinion and when I got my second opinion they had told me, said, "You going to see a man with a bow tie and he knows what he's doing." I saw a man with a bow tie and he told me and I believed everything he said because he was so sincere and he had so much empathy.

When I listened to him and he told me that he was going to send my records to California for them to review to see if I was a good candidate, and he said, "Would you be willing to go?" I said, "Can I go tomorrow?" That's how bad I felt.

During the course of my work time they was doing some construction there and they had built this wall. They had all the nurses pictures, all the doctors pictures, because I work at the hospital. They had all the doctors pictures and different clinics on the wall. That would be my excuse. Every morning I would stop and read everybody's name that would give me my break in order to get in from my car to my job. I knew everybody. When I met them in the hallway I said “Oh, you are out there on the sign!” I just made a joke out of it for a long time but I was really depressed, really was depressed during that time. I feel so much better now. Even before I left California I felt so good. I felt so good.

The message needs to get out because people don't know. The V/Q scan really picked it up for me because I had had all the other tests and they couldn't see why, but the V/Q scan really picked it up for me. Plus, people need to be aware because you feel so much better. How you going to walk around? You can't live like that. You cannot live with pulmonary hypertension if you an active person. If you just want to lay around and do nothing, then you okay, but if you want to get out and do some things, you need somebody to help you. You need your medication, you need the doctors, and you need the surgeons like I had. It's important. 

My name is Margaret Owens and I am aware that I am rare.