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Jessica Romero - phaware® interview 349

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

Release Date: 11/17/2020

Baby Jessica Romero was born October 26, 1983 in Denver, Colorado. Jessica was born 3 months premature, weighing one pound, 7 ounces. The Rocky Mountain News crowned her the “Miracle Baby of Colorado."

Now, 37 years later Jessica discusses, her diagnosis, her outlook on a lung transplant and her commitment to pulmonary rehab.

Jessica Romero:
My name is Jessica Romero. I'm from Modesto, California, and I have pulmonary hypertension. I was a preemie. I weighed one pound/seven ounces. I lived in the hospital for the first two years of my life. My parents had a life and death situation where we had to move from Denver to California in the Bay, because the air was too thin for me to live in Denver. So we moved to California.

With that, I was diagnosed with PH in 2010, so 10 years ago. My parents, they did it for me, of course, just to move mountains. So, we moved to California to make ourselves better, and for my health, too. That was pretty much number one. It was heartbreaking to leave my family, but they did it for their daughter. They came with nothing, pretty much the stuff on their backs and just managed to live their life having a sick daughter. We just did what we could.

First couple of years I know, I went to UCSF. This is not my first time around. Since I'm on the lung transplant list, I'm pretty familiar with UCSF, because I've been with them mostly half my life. I was three years old, I think, four years old when we moved. I could tell a difference, Denver's air to going to California. It was pretty much a good change. I could breathe better, considering I was on oxygen. I think we were there as a family since '86 to '95. In 1995, my parents and I moved to the Valley for a better change. Better neighborhoods. They ended up buying a house. They're all in a two story house, just a better change.

I have this really funny nickname and the reason why they call me “Bones,” is because I was always underweight, since I was little. I have always been skinny, always a size two, weighing in the 80s to the 90s. So finally, I believe in 2007, 2008, I finally reached 100 pounds, and my family and I did the whole party thing, because I always been underweight for so long. So, finally when that did come, when I weighed 100 pounds, we were so happy.

I grew a little bit. I ate more, eating meat and more vegetables and some meat and potatoes. Sandwiches, I love sandwiches. A year into when I was diagnosed with PH in 2010, about a year or two, after that, my primary doctor, which is a pulmonologist concerted that my PH was progressing pretty bad, and that I should consider to look into a lung transplant. I kind of was in denial, thinking okay, I can wait out my lungs just a little bit longer.

We looked into it about, I would say 2011 to 2012. There was a lot of going back. I wasn't sure. Maybe I could keep these lungs as much as possible. I finally got on the list of 2016 of May. A lot of things go in the process, the blood work, what type of blood you have, the testing, seeing the doctors, just a whole lot of factors that go into it. When UCSF decided as a team, my whole team of doctors and surgeons and stuff, looked at my case and say, "Yeah, in the long run you will need a double lung transplant." So, when they decided, that year 2016, I was put on the transplant list.

I was a little skeptical, kind of thrown back, like I don't know. In the long run, talking to people such as pre and post, now that I know, I think I'm a little bit more determined, because I am exercising and seeing them working as hard as they do, going what they're going through, makes me want to work a little bit harder. As soon as I got on the lung transplant list, I started exercising that year to build up my muscle.

I've been wearing oxygen most of my life. There was a big gap for 10 years where I wasn't, because I was able to go to school, junior high and high school and some college. I wore oxygen till birth up until I would say 15-1/2. Then between 16 and I think my mid 20s is where I had that gap where I got to go to school and enjoy life and have friends and mostly enjoy life without oxygen. Then between, I would say the middle of my mid 20s is when I got diagnosed, at the age of what, 26 years old, is when I got put back on oxygen in 2010.

COVID has kept me away from all the germs and the COVID stuff up there. I've mostly been indoors. I haven't gone anywhere since March, beginning of this year. So, I've mostly been indoors, painting and drawing and keeping myself busy, and exercising three times a week. That really keeps me going. So, I've been really indoors, keeping myself away from everything that's going on. If I do go out, which is only doctors' appointments, I wear gloves, I sanitize, I wear a mask. So that's what I've been doing.

Back in 2000, I believe '13, when UCSF suggested to go to pulmonary rehab, I went there in between I think 2013 and 2014. I met this lady. Her name is Kelly Frederick. She's a home personal trainer. We met that year where I went to pulmonary rehab for two years. So, when I landed in the hospital three times in one year in 2016, I called her because I felt like I needed to do more to get myself better for the transplant. So, I called Kelly in January of 2016. She was just giving me tips of exercising, things you can do at home, the sit to stand, the bands work. But I was like, "I need your help. Can you come over and just teach me a couple things?" So, we took it from there and she was coming to my house at least once a week for only one hour.

So, move forward to four years later, she's still with me. But of course, with the COVID, I haven't really seen her since March, but she gives me tips on a daily routine: what to do, what exercises and what workouts. I work out three times a week. She's been my trainer for the last four years.

As a PH person, my goal is to spread awareness. If you could just do one little physical thing every day, it means a lot. In the beginning, the first year I can barely do 30 seconds and I was sitting down within 10 minutes. Now, four years later, I'm doing planks and pushups and more than I can ever do. But with ones that can't do it, you can never say I can't. There's always a will. You can. You just got to put your mind to it, physically and mentally.

My name is Jessica Romero and I'm aware that I'm rare.

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