Welcome to the first installment of the new "Heart to Heart" series, where I interview women living with congenital heart defect(s). If you would like to be interviewed, please e-mail me.
Question 1: Can you tell us your name, age, occupation and the type of congenital heart defect you were born with.
Joanie Dorsey. I just had celebrated my 57th birthday! I'm a Registered Nurse. Right now I am a paper pusher as I gave up patient care 3 years ago because my heart couldn't keep up with the demand. I had a Pulmonary Valve place in June and am hoping to get back to patient care. I was born with Tetralogy of Fallot.
Joanie, post-surgery at 10 months
Question 2: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?
1. Blalock Tassaig Shunt as an infant. It gave me a near normal life. I couldn't run and ride bikes like everyone, but I could go to school and play Barbie.
2. In 1972 (age16) I had as close to a complete repair my surgeon could build for me. At that time I considered myself "fixed". Got married at 20. Asked my cardiologist a dozen times if it was OK to become pregnant. I had a son at 23 and a daughter at 26.
3. AICD placed for sudden V-tach episode in 2008. Increased fatigue since the episode and gave up patient care nursing. I was under the care of a "regular" cardiologist. Finally decided to break free and see an Adult Congenital Cardiologist.
4. Pulmonary Valve placement via open heart surgery in June 2012. I feel GREAT, 10 years younger, and can't wait to see how fit I can be!
Question 3: What were you parents/family that raised you like when you were a kid living with CHD versus their current attitude? Were/are they overprotective; did they restrict you in any way?
I think my parents tried to treat me as a normal kid as far as what was expected of me in household chores and schoolwork. They were very protective of me physically. Every time I got a cold I was rushed off to the doctor for a big fat penicillin or gamma globulin shot. I can remember running into my room to sneeze or cough into my pillow.
Question 4: How did your health issues affect your school life and your social life, as a kid and teen?
It was hard never being able to play certain things at recess. In 6th grade every class goes to camp for one week. My school would not let me go with the class and wanted me to go to another class while mine was away. My mom said "Hell No", rented a cabin just outside of the camp and took me up there to stay so I could go to the daily activities. I couldn't go on the hikes, but she made sure I didn't miss out on this experience. I was very shy before my surgery at 16, but in my senior year I gained some confidence and had a couple of dates.
Question 5: How did your heart health affect the relationship with your siblings (if you have any)? If you have none, how did being an only child with a CHD feel?
This is the big can of worms! This has the potential of being very long! I have a sister who is 6 1/2 years older. We have a very strained relationship. Along came this sickly baby that got so much attention. I don't have any wonderful memories of our time together as children. I always thought it was the age difference. When I was in elementary school she was in middle school. When I got to middle school she had already graduated from high school. We just had seperate lives. As adults we had some moments of closeness. She was pregnant with her second child when I was expecting my first. Our kids are close. After my mom passed away 10 years ago, she distanced herself even more. I've reach out many times. She takes most of what I say or do with negative intent. After all these years, I coming to terms with the relationship I wish we had and reality. When I damn neared died with my V-tach episode, I got two phone calls in six weeks. We live 5 miles apart. Needless to say, this is a tough subject. I don't know if you saw my post in Women with CHD this past week, it did cover the most recent crap.
As a kid, I would fantasize about being a star athlete. I never was allowed to participate in sports or phys ed. I had to go to the nurses office or the library during those periods. As my heart function decreased in the last 5 or 6 years I had to work less and less. Since my surgery, I can't wait to start hiking! Something I have always wanted to do. 2 years ago I could not carry my new grandkids up the stairs. No problem now.
Question 7: How is life with your health easier and more difficult as an adult than it was when you were a kid?
A few years ago, the most difficult thing was seeing a decline in my health. Getting that Handicap Placard was so depressing! But now, I feel like a brand new person with a brand new future!
Question 8: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?
I have the best husband in the world. He gives me so much strength. His mother and siblings are also great support. My son and daughter both live out of state. They both came to take care of me after my surgery. They both have great spouses and love me like "mom". In my very dark moments I have a wonderful friend, Jeannette, who is always there for me. In my medical moments of need, I have my friend, Mike, who I went to nursing school with.
Question 9: To date, what has been the most frightening moment in regards to your health?
May 22, 2008. My heart went into sudden V-tach. My husband was in the shower, so being a nurse, I tried to take my blood pressure and pulse. Pulse was near 200 and I couldn't pick up a BP. When Jim came out of the bathroom, I calmly said "you need to call the paramedics". He remained very calm, I'm so proud of him. They couldn't get an IV line in my arm in so they put in a jugular line. I remained conscious the entire time, over 90 minutes. They tried all the medication protocols. I kept staring at the monitor. The lowest they got my heart rate to was 180. When they pushed the lidocaine is when the room started spinning in slow motion and the lights were getting a little dim.
That's when I started bargaining with God, "I'm not done yet!" My other thought was how I couldn't die so close to the same day that my mother passed away. It would have been 6 years on May 24th. I couldn't put my dad through that. I heard my husband say "Her feet are blue." I really think the ER doc was waiting for me to pass out before he shocked me, but there was no way I was going to do that. If I did, I felt I wouldn't wake up. So my BP was below 70, my extremities were turning blue and I'm still conscious. The ER doc leaned over and said "This is really gonna hurt" and then they shocked me. The worse pain I ever felt. The whole world went all shades of grey, like a black and white negative. I let out a hell of a scream and then I heard the doc say "She's back."
Question 10: What was your attitude about your heart health like when you were a kid, and then as a teen?
I tried so very hard to act like a "normal" kid. I remember telling a girl that my fingernails were stained from polish when she wanted to know why they were that color (a nice lavender). I didn't want to be different or special. I had to miss the entire 2nd semester of my junior year after my surgery. I hated that. After that, I considered myself normal because they had fixed my heart (and I was pink).
Question: 11: What are your hobbies and passions?
My hobbies are sewing, quilting and gardening. My new passion is to make adult CHDers understand that they still need to be followed and to be followed by an ACHD specialist.
Question 12: 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?
I think some coworkers felt I was lazy. Sometimes I questioned that. When there was an answer to my decline in the fast few years (no pulmonary valve to speak of) I felt validated.
Question 13: What has been the toughest part about living with heart health issues?
Trying to be superwoman and not being able to.
Question 14: What are your aspirations for your future?
I want to as much as I can for others with CHD, adults and children. To volunteer at my cardiologist office, to sit with parents when their child has procedures or something like that. I want to bring more awareness.
|Joanie, June 2012, 3-days after her 3rd Open Heart Surgery|
You can read more about Joanie's life at her blog, Heart Strings.