I am beginning a new 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 and perhaps you will decide to reach out - to an organization that benefits those of us living with CHD, to an individual you were previously too shy to talk with, to a community now that you realize you are not alone, or perhaps to me if you are someone living with CHD and would like to be interviewed. Don't be shy, we're all in this together.
Question: Can you tell us your name, age, occupation and the type of congenital heart defect you were born with.
ANSWER: Carissa Aim’ee Carmichael, 28, Educational Assistant at Oak Grove Center and a child care worker for New Vision Autism Center and I’m also a student. I was born with TGA Transposition of the Great Arteries but at 19 (2001), I had a heart transplant
Question: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?
ANSWER: At 3 months old, I had my first heart surgery-Open heart senning procedure to correct my congenital defect. It was successful for the first 15 years of my life. At 15, I was put on beta blockers and at 17, I had a pacemaker/defibrillator put in. 5 months later it went off (shocked me back into rhythm from tachycardia) and I was put on the transplant list.
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?
ANSWER: As a kid, I knew I was different (scar) but I was always told to do what I could. I had P.E. and stuff but I just went at my own pace. I guess I was spoiled because my parents were told when I was born that they knew my heart surgery was not going to be the end all surgery and that I may die someday. I didn’t know that. I thought it was cool that I got a year book every year and my class ring early. I got whatever I wanted…yes I was spoiled
Question: How did your health issues affect your school life and your social life, as a kid and teen?
ANSWER: Well, I had no social life. I don’t know if it’s just me or having a heart problem but I was a loner and was singled out in p.e. and later waved from p.e. in junior high to high school. So people didn’t like me because they didn’t understand why I didn’t have to run or whatever…I was out a lot of school in high school. By 15 my heart was giving out so I was more tired and didn’t do too many active things…malls, movies…
Question: How did your heart health affect the relationship with your siblings (if you have any)?
ANSWER: It made my sister (2 years younger) become independent early on. My parents had to take me to Children’s hospital here in Cali when we lived in Hawaii…My sister stayed there and went to school. She was 12. But she is also someone I admire. She took care of me and even though she looked out for me I still wanted to be the big sister but she took over that role for awhile. She’s my hero, when I got my transplant she was about 16ish and all her friends were getting drivers licenses and she went around telling them how important it was to be an organ donor. I was also jealous of her a lot because she was able to go out, party, go to concerts…and after high school she went to a four year college far away… I went to community college down the street.
Question: Has your health limited you in ways you cannot control/alter? (ex: not being able to go for a particular occupation in life, travel extensively, climb a mountain, etc.)
ANSWER: No, I have a new lease on life and now I have no limitations (although contact sports are out which works for me!). I do take meds every day though.
Question: What was one of the most obnoxious questions you've been asked or assumptions you've faced in regards to your heart health?
ANSWER: After my transplant I got that “do you have their cravings? Do you still have your feelings? Is anything different in regards to the person’s heart I got?" it’s crazy. Plus before that I would use a wheelchair at Disneyland or other places, the mall and people always stared at my legs…that was annoying.
Question: How is life with your health easier and more difficult as an adult than it was when you were a kid?
ANSWER: Easier because I know enough about my own issues and medical issues so that I can explain it to people better and it doesn’t bother me to talk about it or I have no problem talking about it or showing my scar (wearing v-necks, bikinis). As a kid I don’t think it bothered me too much either….I didn’t know anything else.
Question: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?
ANSWER: I never stressed. I felt everyone around me did. My family is the best. My mom was the best and always will be she was there for me in every way possible. She lived with me after UCLA (hospital) in a hotel, she and my dad and sis swapped visiting me every time I was in the hospital. My other relatives that were close would visit or I got lots of phone calls. I was in the local paper and got many cards from my community from people I don’t know but were much appreciated.
Question: To date, what has been the most frightening moment in regards to your health?
ANSWER: Maybe when It really hit me that I was going to need a heart transplant. I got scared and cried with my parents int their bed. But then I accepted it and after that I knew it was in God’s hands and I knew I would be OK.
Question: What was your attitude about your heart health like when you were a kid, and then as a teen?
ANSWER: As a kid- not a big deal. Teen- a little more insecure because I had no body strength and couldn't keep up. I got tired easily. But I was never depressed or anything; always outgoing, hyper (still) and happy.
Question: What are your hobbies and passions?
ANSWER: I love reading and watching romantic comedies. My biggest passion is working with children with autism. I am drawn to children with special needs and feel I can make a difference. I feel like I have a gift. I work with kids now with severe autism and it has its challenges but I love it. I am also in school getting my masters/credential in special education.
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?
ANSWER: I have a permanent handicap pass for my car and people have given me strange looks when I use it and I even got a post it on my window once from someone saying I was misusing it!
Question: What has been the toughest part about living with heart health issues?
ANSWER: Well, as of recently- I have decided to get my tubes tied. It has been the hardest decision…I always wanted kids but I look at it like God gave me a second chance at life and if that means having no children of my own he gave me the gift of finishing my education to become an amazing teacher for special needs kids. I decided not to have kids because it would be a complicated/stressful pregnancy. The child may absorb my meds, I could reject and/or the child could be born with issues due to my medications.
Question: Many people do not realize there is humor even in the oddest of moments. I know I tell stories that are funny to me but kind of horrifying to anyone who has never known a single person with health issues. Do you have any funny CHD/health moments you can share?
ANSWER: I blame my scar on that fact that I have no cleavage. When I wear the heart monitor I called it ‘being wired for sound’.
Question: What do you know about the man whose heart is now yours? Have you ever made contact with his family?
ANSWER: I know his name was/is Albert, he was in his mid 40s and very healthy (car accident is my gut feeling) his
sister sent a mass letter to me and others who received his organs.I think like 3-4 others. Just said he took care of his father, loved to cook and was athletic. I think I got one more letter but it's been a long time. I gave her my email but have not received word in over 8 years.
Question: How has knowing other people with heart health issues impacted your life?
ANSWER: Makes me feel not so alone. I recently ran into some lady with a scar and had to stop her and ask her what she had. I'm so blatant about it. It's not everyday you see someone else with a scar or zipper. It makes me feel exhilarated and excited to meet others and share stories. That is what I loved most about camp (where Carissa & I met); sharing stories and learning of other heart problems and how other deal with it. We all seem to have a special bond that no one else can understand.
Thank you, Carissa, for sharing your story with us!
If you would like to share your story or nominate someone to be interviewed for a Heart to Heart, please do not hesitate to contact me.