This is my series of interviews with adults and teens living with cardiac issues – mostly congenital heart defects. You are invited to learn more about the individual behind the obnoxiously long Latin medical term. WANTED: More people to interview! Looking for teens especially, but I ain't picky. Email me if you'd like to be interviewed!
Question: Can you tell us your name, age, occupation and the type of congenital heart defect you were born with.
Casey Bartle, 23, future mom/teacher or child life specialist. I was born with MASS Phenotype which is a branch of Marfan's syndrome and as a result had a small leak in my mitral valve. When I was 10 a doctor diagnosed me with the flu when I really had pneumococal meningitis, ended up with a 106 degree fever when I was released after a two week stay I was re-admitted to the hospital with congestive heart failure and my heart was as big as a football. As a result the small leak in my valve became a very large leak.
Question: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?
Casey: I have had 3 surgeries so far. My first surgery was when I was 15 and a sophomore in high school, the medication used to keep my mitral valve under control stopped working and so they repaired my mitral valve. A year later to the date when I was 16 the repair didn't take and I had to have it replaced with a porcine valve (pig valve). At 22 I had a tubal ligation and ablation.
Question: What were you parents like when you were a kid living with CHD versus their current attitude? Were/are they overprotective; did they restrict you in any way?
Casey: My parents are wonderful. Until I was 10 I was treated like a "normal" kid. After I pretty much almost died both my parents became a lot more protective of me. It was really hard on my dad and he worked well overtime to make sure that we were still able to have nice things and be able to do a lot as a family. When I had to go into the hospital the second time when I was in 4th grade I was very bitter, I was going through so many tests and again they thought I was going to die. My dad promised me a kitten as soon as I got out of the hospital and I won't lie it did help my mood. My mom was my best friend, and she really let me do as much as I could, she would really monitor me though, if she felt that I needed to rest, I had to stop what I was doing and rest. I had a lot of tests and was terrified of needles, partly because I have veins that are very very hard to find and stick, and being 10, everything I was going through was terrifying, so I would get a present after everything I went through. You could say I was spoiled and a lot of people think that, but my parents just tried to find ways to keep me happy and have something to focus on while I was going through whatever test it was at the time.
Question: How did your health issues affect your school life and your social life, as a kid and teen?
Casey: As a kid, I missed the entire second half of 4th grade, I spent 4 weeks total in the hospital and was in no shape to return to school. So I was pretty much home schooled with my teacher. In 4th grade I had a lot of friends who cared for me and accepted me. however when middle school rolled around it was a lot more difficult. I really didn't talk much about what was wrong with me during middle school because no one understood it.
High School was a whole different story, I had my mitral valve repaired at the end of my freshman year, and I ended up missing the last 8 weeks of school. The close friends I had at the time bailed on me because I couldn't go to a party the night before my surgery. Sophomore year I had found 2 or 3 solid friends that helped me through everything, when I ended up having to have my mitral valve replaced a year to the date after the repair, those friends were by my side the whole time. The best memory I have is the second to last day I was in the hospital 2 of my best friends came and sat with me for 3 hours talking about everything and nothing and it's moments like those that mean the most.
Question: How did your heart health affect the relationship with your siblings?
Casey: My sister and I are polar opposites and it had nothing to do with my heart problems, but I love her anyways :)
Question: Has your health limited you in ways you cannot control/alter?
Casey: I am unable to become pregnant. The risk is too high for it to be possible and I have genetic conditions that I don't want passed on. That was extremely devastating to find out. The rest of the stuff like no rock climbing or heavy weight lifting means nothing to me.
Question: How is life with your health easier and more difficult as an adult than it was when you were a kid?
Casey: That question is almost a catch 22. It's easier because I am able to fully understand what is going on with my body, and I am able to make the decisions as to how I am cared for. On the flip side knowing what is going on and making those decisions can be very stressful. There are times when I just want my mom to make the decisions and go back to being somewhat unaware of how serious all of this is.
Question: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?
Casey: I think stressing out is a natural reaction for anyone facing serious health issues. I have a lot of anxiety when it comes to my heart health and all that is involved with it. Mostly because I had a few doctors that didn't do their jobs and my health suffered, so as much as I try to be positive going in to appointments and surgeries and all of that, I still have that hesitation that I wont be getting good news. When I get really stressed out and anxious I exercise, paint, clean (if my house is spotless my mom and fiance know something is up) and write.
I do have a pretty strong support system, I am extremely blessed to be engaged to a man who has been through a lot in his own life so he understands if something comes up and plans need to be canceled or changed, and always puts my health first. He is also the complete opposite of me when it comes to worrying, and while sometimes it can be annoying to hear him say over and over that my worry is not going to change anything and is silly, he knows exactly how to calm me down when I get upset. I also have my mom, and a wonderful woman that I consider to be my second mom. So I consider myself pretty lucky!
Question: To date, what has been the most frightening moment in regards to your health?
Casey: Hands down the two most terrifying moments this far have been
A. When I had my routine echo done my sophomore year all the doctors were out of town, so no one was able to read it for 10 days, then one day I come home from school to find my mom and dad sitting in my room waiting to tell me that the doctors thought I had a blood clot in my heart and that I was scheduled for a transesophogeal echo 2 days later. Come to find out that my valve became so big I needed to have it replaced.
B. While waiting in the pre-op area for my second surgery a nurse came in and told me that now it was my time to make peace with God because he was going to decide my fate in the operating room. I lost it, and they were unable to give me any sort of sedative before the surgery, so I remember saying goodbye to my family, being wheeled into the OR, the smell, the cold, and just sobbing and begging the nurses and doctors to make sure I didn't die during the surgery, that I had my whole life ahead of me, and I just kept repeating that I didn't want to die.
Question: What was your attitude about your heart health like when you were a kid, and then as a teen?
Casey: I was very fearless as both a kid and a teenager. I live my life fully with a very positive attitude about whats to come.
Question: What are your hobbies and passions? What are your aspirations for your future?
Casey: I am an extremely creative person, I spend a lot of time painting and designing a line of art for nurseries out of scrapbook paper and canvas, I also paint a lot of custom pottery. My favorite thing in the whole world is spending time with kids, I babysit quite a bit and can't wait for a family of my own. I suppose my aspirations for the future are to have a great line of artwork, a house full of kids and toys and laughter, and to just be happy and healthy, and to become either a teacher or a child life specialist
Question: Having heart issues is what is known as an "invisible disability" Have you had any instances when people just didn't get it and gave you attitude because they couldn't "see" your heart issues?
Casey: Oh I love this question! I once had a lady at Walmart tell me to cover up my scar because I was scaring her child. But mostly I get comments because I have a handicap placard for my car. I have had numerous people scream at me in parking lots because of where I park. The best was one day Brian and I went to a pizza place and parked in the handicap spot( because in Arizona when it's 114 out I am really unable to walk long distances.) This older man was with his wife walking into the same place and he started yelling at me in the middle of the parking lot about how I cant steal my grandmas placard and use it and how selfish I was, I politely told him that I had open heart surgery if he missed the giant scar on my chest, he was so mean that I started yelling back at him about how just because I wasn't in a wheelchair didn't mean that I didn't have a disability. It ended up with his wife dragging him into the restaurant, while profusely apologizing to me about how rude her husband was. It was pretty awesome.
Question: What has been the toughest part about living with heart health issues?
Casey: I think the toughest part is the uncertainty. I was told I will need another valve replacement in the future and so to have that hanging over my head all the time is very hard to deal with. But honestly as much as really wish my life was different, and that I didn't have all of these problems to deal with, I feel very lucky at the same time. I am stronger for it, and it makes me unique. It also gives me the opportunity to help children and even adults struggling with similar issues. And if I can make a difference in one persons life who is also living with heart disease then I consider this almost a triumph. I have been able to overcome things that I never thought I would make it through, and I am also so much more willing to try everything and anything I can. There is always a silver lining even in the darkest situations, and being able to realize that at such a young age is pretty awesome.
Question: You volunteer for Camp del Corazon. How has being involved in the "heart community" influenced your life?
Casey: It has changed my life forever in an unexplainable way. Lets just say I'm going to be involved for the rest of my life!
Thank you so much, Casey! I hope to see you next year at the Adults with Congenital Heart Defect Association Los Angeles Conference