Barbara Barry-Nishanian phaware® interview 278

Pulmonary Arterial Hypertension patient Barbara Barry-Nishanian discusses her long road to diagnosis and adjusting to a different life with PAH.

I’m Barbara Barry-Nishanian and I've recently been diagnosed as a PAH patient.

It has been a long, long, long, long journey. It started back in 2000. I like to dance, and all of a sudden, I couldn't get through half of a record or a song. I couldn't dance. I ended up in the hospital for a week. People could not find out what was wrong with me. I'd had rheumatic fever, never bothered me. Been on a C-PAP machine, that was fine.

I was tired. And you know, we feel so guilty because we're not capable of doing the things we used to do. We go on a real guilt trip that can lead a lot of PAH patients into depression, because they're not able to do what they were supposed to do. You've heard people say, "Well, you're crazy. It's in your head. You've got asthma, you've got this, you're old, you're a hypochondriac."

At one time, I was on 17 pills a day, and at one point there were three months I had to let someone else run my accessory gallery and art gallery, because I couldn't get out of bed. I wasn't in pain, I wasn't hurting, but I wasn't me. I kept going to doctors, and doctors will send you to specialists, and thank God for the specialist. My doctors came in and said, “let's have a catheterization.” I had already had one. We'd go back in. I didn't bring my pajamas, because I'm going home. Nothing's wrong with me. And she wakes me up. "Barbara, Barbara, wake up." She said, "You've got 98% blockage in one, you've got 80 something in another." And she said, "We're putting you into the hospital immediately." She said, "You will be dead before you hit the floor."

Triple bypass is a walk in the park. It's really an easy operation and I was not going to get pneumonia. So, I'm chasing my doctor down the hall and low and behold I get double pneumonia. I just wasn't doing good and they sent me off to rehab. I never experienced what happened to me. They didn't understand that I didn't want to do the rehab. I didn't want to lift my leg up, much less try to walk. Six weeks later they'd say, you've got to go home and I'm saying, "I can't talk" and I couldn't talk. I could hardly breathe. I didn't know what I was experiencing, and that was more frightening than the open-heart surgery. But let me tell you, two days after open heart surgery, I hate to get so personal, but I said, "What are those coffee grounds in my pee?" I was bleeding to death internally, and two days after open-heart they had to go in and give me another surgery.

I said, "I can't go home, there's no one to take care of me." They said come in and let's do an EKG. They called the emergency ambulance immediately and sent me to the emergency room of the hospital. I'm losing my cookies all the way there. And I get there and I have double pneumonia again and blood clots in both lungs. I had gone in in October, and now we are at Thanksgiving and it just was going downhill. But the surgery was fabulous, the complications were awful, and I had a chest tube. They did not have time to give me anything to numb it and I'll have triplets for three people before I want to go through that again. That was the worst.

I had to close my jewelry shop and my art gallery and one of my artists said to me several months later, “we're going to San Antonio, do you want to go take a painting class with us?" And I'm ready to go. You just say travel and I'm ready to go. And she said, "Well, can you walk the river walk?" I said, "Of course I can walk the river walk." Well honey, they were a block ahead of me. I would stop and I'd lean up against the wall and I'd try to catch my breath.

So, we took our class and we come back and we'd get to the airport three hours early and I'm "larrying" like a slant board in my chair with indigestion. And I'm borrowing Tums and everything from my fellow passengers. Finally, I am so sick behind the counter. What an embarrassing moment for a girl who tries to be a lady all the time, and I was violently, violently ill. I've never hugged a trashcan so closely in my life. When the attendants came, they said, our friend is sick and they came in, they did the EKG and they said, "Lady, you're having a heart attack here at the airport. We cannot let you go home." I said, "Please, I want to go home. And they said, "No, we can't put you on the flight."

Can I say something funny at this point too? Because I think this has to do with attitude. So, in the ambulance, I give the guy my camera and I said, "Will you take a picture of me?" He said, "Lady, you're having a heart attack." I said, "I know, but I haven't been on a vacation in 12 years and I want my husband to have a picture of me." He said, "Turn that ambulance around, lift taker did this other hospital." So, for whatever reason, they change hospitals and I told my two surgeons what had happened in the ambulance and they would take the camera into the operating rooms and I got to meet everybody.

I was diagnosed with this. I did not know what it was, and I tried to make people laugh, and so when they said, "What's wrong with you?" I tell them "I'm on Viagra and I won't give any pills to my girlfriend for their husbands," and I just try to keep a positive attitude. I was really ignorant, because I had had asthma, I'd been to all these specialists and people are not aware. I want to get on a soapbox to make people aware that it's not in their head. They are not crazy. We are not lazy. That we can't breathe is abnormal.

The advice I would give for someone who is newly diagnosed is this is the different life. It is not the end of your life. Do the things that you like doing. I'm not painting now, but I'm going to produce a poetry book. Find something else to concentrate on. Try to help other people. You help yourself better when you try to help others. So, find a support group. Believe that what you're feeling is not in your head. Don't let anyone define you by this disease. Don't let anyone define you by, "It's in your head." You know your body. Get someone who will listen.

I'm Barbara Barry-Nishanian, and I am aware that I am rare.

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