I'm Aware That I'm Rare: Travis Flores
At 4 months old, Travis was diagnosed with Cystic Fibrosis, a life-long genetic disease that attacks the respiratory & digestive systems. Travis is an award-winning children’s book author and nationally recognized speaker & advocate for multiple charities. May is Cystic Fibrosis Awareness Month.
My name is Travis Flores, I’m 27 years old, I have cystic fibrosis, and I’ve had two double lung transplants.
Cystic fibrosis effects about one in 25,000 people in the United States, it’s certainly not as rare as a lot of other illnesses and conditions, but I am a proud supporter of the Rare Disease Community and I do what I can to help illness in anyway that I can.
People are diagnosed with CF before they’re born, it’s one of those tests that they do while the baby is a fetus I guess. For me I was four months old, I was malnourished and went into like a very comatose state and my mom rushed me to the hospital. Test after test came back negative and negative and sure enough the one that we didn’t want came back positive for cystic fibrosis. At the time in 1991 there wasn’t a lot of research, they didn’t even discover the gene until 1992 I believe, so there wasn’t a lot about CF that was known. It was a scary time I imagine for my parents and family, but I’m 27 now, I was given five years to live when I was born, so I’ve beat that by 22 years.
I’m very fortunate that I have parents that have always supported me and as I’ve gotten older my brothers have been just as supportive. When I was born, like I said, there wasn’t a lot of research here in Los Angeles where we lived for cystic fibrosis so my parents found the hospital in Ohio, Cincinnati Children’s, which was one of the leading hospitals in research for cystic fibrosis so my family didn’t hesitate, we just packed out lives up. My parents were born and raised in Los Angeles, all of our family was in Los Angeles, so for them to do that it was I imagine a very difficult decision. They packed up their lives and we left and I was two years old at the time and I was followed by Cincinnati all the way up until I was about 16 and then I transferred to Rainbow Babies and Children’s in Cleveland, Ohio, and then when I was 18, I moved to New York City but continued to come home to Cleveland for all of my care because between Cincinnati and Cleveland that’s why I’m as old as I am today, and UCLA of course.
I graduated with my masters degree from NYU, I was pretty young I was I think 21 turning 22 getting a masters degree and that was kind of scary because I didn’t have a lot of job work experience, all I had was life experience but that doesn’t really work when you go into an employers office so I wanted to really go back to my core of who I am which is a creative person. I moved to Los Angeles to pursue writing and acting and my charity work all at the same time and I found a lot of really, really great people and I’ve done some really great things.
Unfortunately my health really took a downturn right as I was moving from New York to here and it was very difficult going through all of that and at the same time my long term relationship had fallen apart and I had to figure out how to stay strong though everything. UCLA came in and kind of picked me up along with my mom who moved her life again from Ohio back to Los Angeles to take care of me and she was with me for 10 months, she got me through the first transplant and then went home. Then I had about two years of amazing life and my incredible doctor, David Ross, he and I had a sit down conversation that I was in rejection and that there was things we could do to try to combat it but it’s really, it’s unpredictable, and he has patients who are in rejection for eight or 10 years but then he has patients who are in rejection for a few months and it really is an unpredictable situation.
Just before all of this happened I was in Ohio visiting with my friends and it was like the best time ever because the last time I was in Ohio I couldn’t breathe. Right as I was leaving Ohio to come back to have that conversation about my rejection my mom was diagnosed with a brain tumor and I had to leave her because I already knew I was in rejection because I had an email that I needed to come back so I kept it from her for a few months, which was the hardest thing to do because my mom and I share everything but I needed her to be strong because I knew what was coming, I knew what I was gonna have to face again.
The hardest part in all of it was accepting that it was happening and that I couldn’t change. With cystic fibrosis it took 22, 23 years for my body to become that ill and with rejection my pulmonary function went from the 90s, which is incredible, to 30 in a manner of three months. I went from being a healthy person growing up to being very ill and getting that first transplant and being given that gift and then being able to breathe again and then it was all of a sudden being taken away from me again and I was angry and upset and bitter. I only allowed myself to be that way for about a month and then it was fight time again, it was time to stop crying about and to start fighting it so I could keep myself strong enough to get through the second transplant.
My mom came back out and took care of me again, I was actually rejected for a second transplant at first. Getting a second transplant is a hard thing, you’ve already had it once and there’s scar tissue and the surgery’s a lot more risky, but not only that it’s you’ve already had one and there’s people waiting across the United States for their first one. I had to really petition and have to have a medical team like Dr. Ross and Dr. Ardehali fight for me to fight for my right to get the second one and on August eighth I was listed, September first I went into the hospital with two collapsed lungs, and had chest tubes put in immediately without really any sedation to save me, and then I didn’t leave the hospital again.
The first transplant I waited for three and a half months for a transplant and then was in recovery for two weeks, this time I was hospitalized September first but my decline was so quick and so unpredictable that I rose to the top of the list very quickly, I was only in the hospital a short time really. I mean I was listed August eighth and my transplant was October third so it was really like less than two months that I was listed and only a month that I was in the hospital before I got the call and after that it was about 15 days, 16 days that I was in recovery.
The whole experience was life changing and has really put my entire mind in a different place than it was my whole life. Even after the first transplant I’m a completely different person, no pun intended, but I’ve changed and my belief systems are different and the way that I go about life different. You know, going through what I’ve been through you would think that I would have anxiety all the time, but I’m actually a very calm person. There are certain things that trigger me, for instance beeping noises, I do not like beeping sounds because it just takes me right to the hospital. Aside from that because of what I experienced before the second transplant, which was incredible I nearly died, and to say that it’s incredible sounds strange, but let me tell you it was incredible, that changed my life.
Having gone through what I went through and somehow finding the strength to fight the feeling that I felt when I was dying, which was peace, and fighting that to come back I mean there was a reason I was here, that I’m meant to be here. I just have to find that purpose and I think I have, I really do. There’s a lot of projects at work right now that are things that I’ve wanted to do for years, I just didn’t know how and I didn’t know the right people and now it seems that everything’s coming together and the people that are coming into my life want to help me succeed because I think they see what I’ve always seen which is the power in truth and the power in words.
I love to write, the things I write I don’t write for fun I write because I want to tell a story and I want it to move people. I’ve had friends who have passed away from cystic fibrosis, from rejection, and having seen what they’ve gone through and then having my own experience I think the thing that I would tell anyone is that they just have to believe in unity, they have to believe that no matter what happens whether it’s a good or bad or whether it happens now or later it’s all a part of the universe and what was always meant to happen and that it’s a beautiful thing.
It’s very scary going through certain things that we go through and it can be a health condition but it could poverty, there’s always something but I think that if you just believe in unity and the universe those things that are scary just disappear and it’s because if you believe in that unity in the universe then you know you will go back to the universe, you will be one with everything, and that no one person is better than the next because we’re all together, we’re all in the same universe and this is just this life and I mean that’s just what I would tell someone.
Whether or not they believe in heaven or hell or whether you’re atheist and you don’t believe anything I think that we all can agree that things happen for a reason and you can believe in a coincidence or not but whatever happens is going to happen and you can’t change it but you can accept it and that’s coming from someone who really does not accept things well when they’re bad. I fought my ass off to survive multiple times because I refused to accept that I was going to die, but now it’s a different perspective after the second transplant. I’m not scared of death anymore, I don’t welcome it but I know that when it is time that it will be beautiful.
I think a lot of times people with rare diseases are afraid of love, I think that they’re afraid of loving and being loved equally. Coming from someone who has been in love two times now and had to face incredible obstacles along the way in those relationships, it’s okay. You may not want to feel it but don’t be afraid of it and don’t push it away because there’s a reason why somebody’s coming into your life. Granted the first relationship that I had for many years ended but there are so many things that I learned and so many great moments and memories that outweigh those bad moments and that outweigh the end of the relationship, I’m very grateful for what I had. Now into new relationships I take those things with me and I’ve learned from them and I allow myself to be loved and be in love because seriously honestly love will get you through the hardest of times, it is so true. The person I’m with now was with me through the second transplant and that was incredible and it’s been such a different relationship but I’m very grateful for both.
My name is Travis Flores and I’m aware that I’m rare.
Learn more about pulmonary hypertension at phaware.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instagram, youtube & linkedin Engage for a cure: #phaware @travisflores @CF_Foundation @DonateLife