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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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Joann Volpe - phaware® interview 266

Jul 23, 2019

Long-term pulmonary hypertension patient, Joann Volpe discusses her road to diagnosis 25 years ago, being put on a clinical trial for the first PH drug, and her believe in a higher power.

I'm Joann Volpe, and I'm a pulmonary hypertension patient.

I was diagnosed 24 years ago. I was having shortness of breath just walking from my car to where I worked at a high school. I went to all kinds of doctors and nobody knew [what was wrong]. They thought it was a hole in my heart. This one pulmonary doctor I went to in the next town over said, "You have four years to live. Go home, get your affairs in order."

So, I got home and my daughter said, "we're going for a second opinion." So, we went to the capital, Hartford, and we went to Hartford Hospital to a doctor there. He definitely confirmed that I had pulmonary hypertension. From then on I really went downhill. I was passing out in the shower. [I was] real sick in the hospital, in and out, in and out. At one point, I was in a coma for five days. They said they thought something happened to my liver. The doctor said, "Good thing that it rejuvenates itself." He said it lost oxygen.

Then he said he was going to send me out to the University of Pittsburgh, to be evaluated for a heart and lung transplant. I went by jet ambulance, because I was almost going into cardiac arrest. So, I went out to Pittsburgh. I was there a week to be evaluated for a heart and lung transplant. While I was there, Dr. Srinivas Murali a heart doctor, he said to me, "We have this medication, it's experimental, you'd be in a study, but if you want to try it." I said, "Heck, yes. I mean if I don't have to sit here and wait for a heart and lung transplant." He said it was called Flolan. He said, "You would be in a book, you would be a number, but you would be in a study.” I said, "Okay."

So, I tried it, and I ended up coming home on a commercial airplane. My daughter had to go and buy me all kinds of clothes and shoes because I went out on a stretcher in a hospital johnny and everything. I didn't bring clothes I just brought a personal suitcase for my toiletries.

I came home with no oxygen or anything, and I had the IV Flolan put in. Two years after that it was FDA approved. So I've come along way. Now, I'm on Remodulin IV. I find that if I go on pills, I'm just not good with pills. I'm also on Adcirca. It's two pills a day. But I would love to come off the IV, I mean I've been on it so long. My husband keeps saying, "You can't do the pill, you can't do the pill," but I've had it in and out so many times. I'm sticking with now, but I keep warning my doctor, "If this doesn't work you got to get me some pills, because I don't want to put it in again."

Anybody who is thinking about going on a trial to try something, I'd say, "Yeah." I wasn't afraid, really. I mean for me, it was a matter of life or death, or waiting for a heart and lung transplant. I thought it was going to be a pill or something, but then he told me it's going to have to put a catheter in me and all that. I was a little hesitant of that, but I said, "You know, it's still got to be better than going through all that surgery and everything."

So, I would definitely recommend if you're going to be able to go into some trial, do it. Just have hope and faith. I know my higher power is very much with me, and I think that's the reason that I've been here this long. Because I've been through a lot, in and out of the hospital a lot. My family even says, "Oh my God, you're something else." I just keep saying, "I don't think he wants me yet." I think it's all up to the higher power whether you're going to make this or not. It's just having faith.

I get the roller coaster. My poor husband suffers from it. I'm up and down with the mood. I never want to say I'm tired, I never admit it, even though I'm probably standing there I'm ready to fall over. I don't complain. I was always busy, busy. I never really sat still, and that's hard for me. That's a hard thing to do, to give up a lot of stuff because of this disease.

My name is Joann Volpe, and I'm aware that I'm rare.

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