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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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Stephanie Volino - phaware® interview 242

Apr 30, 2019

Pulmonary hypertension caregiver Stephanie Volino discusses her daughter Anna's road to a PH diagnosis following the loss of her other daughter, Sophia, who passed away from pulmonary hypertension after one week of finding out that she had this horrific disease.

My name is Stephanie Volino. I am a caregiver of a young lady, Anna Volino, who has pulmonary hypertension, since she was four years old. I am also a caregiver of a little two year old girl, Sophia-Lyn Volino, who passed away from pulmonary hypertension after one week of finding out that she had this horrific disease.

The first time we heard pulmonary hypertension was when my daughter Sophia was born in August of 2005. Her umbilical cord was wrapped around her neck and I had to stop mid-push to allow the doctor to unwrap the cord and then when she finally did come out and they cut her cord, they realized her breathing was labored so they whisked her away very quickly and she was put into the NICU on oxygen and the doctor said that it was “like a pulmonary hypertension.”

They really didn't make it sound like a huge deal, that it was just like, “Oh, you know, this will get rectified after a few days on oxygen.” She did a test in her car seat, where she had to be hooked up to oxygen monitors and heart monitors and she passed with flying colors. They said "you're good to go, you can go home" and we gave the nurses and doctors hugs and we left and we went on our merry way and we had our beautiful family of four because my daughter Anna was born in 2003, so she was two years old and we had a newborn.

We took her home and life proceeded as normal. She was a really good baby. She ate, she slept, she produced a lot of dirty diapers. Anna was a little mommy to her. She always wanted to read to her and show her how to roll over and do all that big sister stuff. Then around four months of age, just like her sister, because Anna at four months of age just went blue a little bit. They started holding their breath. Like we did with Anna, we brought Sophia to the hospital. They put her on oxygen, they checked her saturation level. They wanted to admit her. Her coloring was still off. They did a series of tests and then a few days later we went home. They said to follow up with our pediatrician, which we did. Then everything was cleared. She was fine. We just thought it was a strange coincidence that both girls did this around the same time, four months of age.

We followed through with the doctors. We did everything as parents that we thought we should do and then when they medically cleared them both we thought that everything was fine.

In the spring of 2007, she started spitting up her food a little bit, so we brought her to the doctor because we were a little concerned. We thought maybe she had a food allergy. Our doctor thought maybe it was just acid reflux so he gave her pepsin. We were giving her the pepsin and it was still happening frequently, that she was spitting up. All of a sudden it was her two year check-up and when I went back, the night before, she had a violent episode where she projectile vomited straight across the table. I looked at my husband and we knew something was off . She was just limp in my arms and that was at the forefront of our conversation the next day with the pediatrician.

I said "I don't think the pepsin is working that well and maybe we should do further testing". He agreed. The doctor said "let's do an endoscopy, we're just going to put her under general anesthesia and take a snip of that tissue and see what it is". So we took her in the next day. It seemed normal enough, to be an in and out procedure, very quick, but he came out and he said when they put her under, she went blue and they rushed a cardiologist in to revive her. That's where our story with pulmonary hypertension really started.

The doctors at Staten Island University Hospital sent us from there to Cornell then onto New York Presbyterian Stanley Morgan Children’s Hospital. This happened all in the same day, and that's when, when we finally met Dr. Erika Berman Rosenzweig at the children's hospital. We were there for a week. They did tests. They had her on oxygen and then she went [to get a right heart] catheterization on September 19th 2007. She made it out of the catheterization, but Dr. Berman came out and said she had severe pulmonary hypertension, that the right side of her heart was enlarged. Her pressures where like 130 and they were trying out medications on her and she just couldn't handle it. Then that night, she spiked 107 fever and they had her on ice. They had us in the room and she began to crash and they worked on her and worked on her and then she just didn't make it.

We went back to the children's hospital with Anna. They checked her out. They said she had a tiny hole in her heart, but after all that we went through, that we really didn't have to address it at the moment, that we could just wait and do it within time. Dr. Berman also said that normally kids would get something like that taken care of around Anna's age, which was she was four at the time, because it was less traumatic to just do it, get it over with, than doing it when they got older.

We took all that into consideration. We said we were going to wait for little while. Then just a little time passed, a couple of months. Actually, she was getting ready to go into kindergarten, and I'd just registered her for kindergarten and then I thought to myself, “let me talk to [my husband] Joe about this, about getting that hole taken care of before she started kindergarten.” We didn't have to wait until she got older and she wouldn't have to panic because her sister died from a heart related disease. Even though it was something completely different, we didn't want her to worry about it.

We decided to go to a cardiologist in Morristown. He saw a blip on the screen when he did her tests and he said we had to go back to Dr. Berman. We were still in that numb state. We were traumatized. We were angry. We were upset. Our head was still spinning. It wasn't fully sinking in, because it was such a whirlwind when Sophia was diagnosed, 7 days until she passed. So we were still trying to figure it all out and what ground we stood on, because it didn't even feel like we had any ground to stand on and then we had this little girl.  That was the reason that I think, we survived initially, because we did have her at home and we were still parents and we had to raise her and then all of a sudden with the doctor saying “you have to go back” it was just shocking. I didn't know what to think, I just couldn't believe this was all happening again.

I've constantly felt choked up, like I couldn't breathe because it was unbelievable that we went through this one time and we were so young, early 30's and life was ahead of us and we lost one daughter and now somebody's telling me that my other daughter’s life might be in peril. It was an incredibly tough time to get through.

We repeated the same steps. She went into the catheterization and her diagnosis was much milder than Sophia's. They were almost at the opposite end of the spectrum, so to say. Even though she was diagnosed with pulmonary hypertension and we were devastated over that, we were just so elated that she was alive and that we got to take her home and take care of this. So we just put our best foot forward and we kept moving right along.

Doing the blood work every month was a struggle, she didn't want to go, she didn't want to get the blood work done. Then one day, miraculously, one of the phlebotomists said "let's sing happy birthday while I stick the needle in and you can blow out the candle when the needle goes in.” She sang happy birthday and he said "OK, now blow out your candle." She blew on her arm and in went the needle and it was like, we did that every time ever since, because that was like our little miracle for the moment because then she wasn't crying or screaming and I didn't have to hold her down. Then we would trek into the hospital, into New York quarterly to get her checked and when we would get her right heart caths done, every time without fail, these nurses would try and put us in the same recovery room that Sophia was in and Joe and I just couldn't do it.

I don't even know if I can say it shouldn't have made a difference, but it definitely did make a difference. Every time Joe would say, "I'm sorry," and explain the story. Then they would look at us, "Oh, oh, oh," because they have so many patients and everything. Maybe that was Sophia's way of saying “I'm here for my sister,” because we always considered her after that as Anna's guardian angel. I mean, without Sophia and her diagnosis and everything that happened, I don't know if we would have figured this out in Anna for a very long time, because her case was mild. God know where we would be or when we would have found out or how we would have found out. So Sophia, after she passed, was always looked at as Anna's guardian angel.

For a four year old to face all that she had to and then to face her own diagnosis and take medicine and go into the hospital and get picked and prodded and poked at and do all that, I look at her in awe for all that she's been through.

We look at it from the perspective of, we just try to keep moving on and look at it in a positive way and we wouldn't be here today without the doctors and everybody that's fighting for pulmonary hypertension and looking to cure this horrific disease. One day children like Sophia, they will survive. Every single one of them will. Those doctors are their super heroes. They fight every day for these kids. They really do. They will win. We will all win because of them, and because of our community.

Children like Anna are thriving today. When we first started out there were maybe three medications and now there's so many more, so much more we know. 10 years later, 12 years later, we just have to keep moving forward and supporting each other and supporting them. We're very appreciative of them, we put our trust and hope in them every day.

I'm Stephanie Volino and I'm aware that I'm rare.

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