Thursday, December 6, 2012

Heart to Heart: Lena





Question 1: Can you tell us your name, age, occupation (if you're unemployed just say the occupation you're seeking and if you're a student, say student), where you hail from, and the type of congenital heart defect you were born with.

I'm positively ageless, although I can't deny that I vaguely recall some of the 1970's!  I'm a freelance writer, aspiring aging super-model and crazy cat lady from Southern Illinois! I was born with a VDS, DORV, and PFO. (Ventricular Septal Defect, Double Outlet Right Ventricle, and Patent Foramen Ovale, respectively.)


Question 2: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?

I've had 3 surgeries: my first was around 5 months old when I was first diagnosed. The doctors decided to band my pulmonary artery to buy some time until they figured out to do with me. I lived for 14 years with that band, since the doctors didn't have a surgical solution. The band was essentially placed to make me "comfortable" and was only meant to be a temporary solution. My second surgery was when I was 14, the summer after my Freshman year of high school. It was a difficult surgery with several complications. My VSD was repaired, and when I woke up, I was no longer cynotic. It took several years for me to recover and feel 100%, but then in 2010, I was told my Pulmonary Valve needed replacing. It was then I discovered that CHD has long term effects; valves wear out, scar tissues forms, holes get bigger or patches tear loose. I eneded up having 5 repairs in that surgery. My VSD patch had to be replaced, the surgeon located a PFO defect and closed it, scar tissue from my aorta was remove, and right ventricle muscle mass was removed and I got a new Pulmonary Valve from a human donor. I'm doing good now. I'm very, very blessed!!!


Baby Lena with her twin sis (Lena is on your right!)





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?

Mom and dad were pretty strict and they did not discriminate! If they were worried about me going somewhere, both sis and I couldn't go. They never said "you can't go because of your heart issue or we are worried about you."  I wasn't pampered, by any means, Ha! Ha! I'm glad that I grew up thinking I had responsibility and that I was "a normal kid" at home.  My dad always told me that I could be anything I wanted to be. I always remember him saying that to me. My mom always told me to be proud of my scar. I used to think she was silly! :)


Question 4: How did your health issues affect your school life and your social life, as a kid and teen?

I lived in a small rural community until I was 15. It was extremely difficult for me because many of the kids were cruel and many of the teachers were less than helpful or understanding. I was called Purple Lips, Smurfette, Pale Face and ugly. As you can imagine, I was very insecure, timid and painfully shy. Every summer, I hoped that kids would somehow change their minds and that the new school year would bring acceptance. It only took a few minutes on the school bus to learn that the new year would be the same as the last one. Thankfully after my second surgery, I was able to change schools. I immediately made friends and found acceptance. Still, the pain of the past lingered. I've struggled with my appearance my whole life. I've been a work in progress and accept where this discomfort resonates from.  


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?

I have a twin sister, Gina, who is 6 minutes younger and a brother 5 years older that me. My sister and I have always been close. My health has always been a deep worry for her. She had to protect me from bullies at school. She also had to endure the fear that I may not be around after every illness or hospital stay. On the positive side, I always tried to keep up with my sister. We lived in the country when I was younger and spent our days roaming the country side or trying to ride our bikes on the graveled roads. I think that physical activity helped me endure my surgeries better. I think my CHD had made our twin bond even stronger. She has suffered CHD as much as I have. Knowing I could never leave her has made me even more determined! My older brother and I do not have a relationship. He has made it a point since I was little to ostracize me from his life. I'm not sure if he is jealous of the extra attention I got when ill, but it is a dynamic that I accepted a long time ago.

Our slice of heaven, Lena!



Question 6: 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.)

I wish I could be a runner! I love to eat and my limited abilities in cardio makes my gain and lose the same 10 pounds over and over. When I was little, I was told that trying to a carry a child would be potentially fatal. At the time I grieved over that. Thankfully as I got older, I made peace with that, too. I figure if I ever do get the maternal urge, I can find a way to make it happen. It may not be a conventional, of course, but what aspect of my life is?



Question 7: How is life with your health easier and more difficult as an adult than it was when you were a kid?

Making big decisions regarding your health sucks! I needed heart surgery a year and a half ago, first time as an adult. It was a terrifying surprise! Picking a surgery date, doing the research, signing consent forms, etc. was such a crazy experience! My dad, whom I lost to cancer at age 20, was a police officer. He always knew how to say the right thing. I always felt safe when dad was around, no matter what was going on. My mom has been battling health issues the past few years and was not able to help me in my decisions and doctor appointments. I appreciated them even more after that experience. I grieve for the burdens they carried for me. Dealing with my health is easier in the aspects of medical advancements. I remember a brief time when I was little that cardiac caths was a surgical procedure that involve an incision in your groin!



Question 8: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?

I can't say I've ever kept from stressing out! I am the kinda person that wears their heart on her sleeve. I have a great support system of friends, family and people I've met through the Adult Congenital Heart Association. Being able to vent to those who've have similar experiences have helped me tremendously. They also help me keep things in perspective! As far as dealing with stress, sometimes I like to eat (as I mentioned earlier). I also love to take walks, and hit the gym. There's a great release from being active. I can honestly say that the gym is the only place I can clear my mind. I also like to indulge in late night TV. I love shows like Roseanne, Seinfeld and The Golden Girls!

Lena, after her last heart cath


Question 9: To date, what has been the most frightening moment in regards to your health?

Being told in 2010 that my heart has a whole lot of issues going on and that I needed a big ol' surgery! Talk about an "OH SH*T!" moment! Everything came crashing down at that moment! I had convinced myself that all of that was behind me, and in my 30's I ran face first into it! 


Question 10: What was your attitude about your heart health like when you were a kid, and then as a teen?

I think I've always had an appreciation for health. I've never smoked, never been a drinker, and always tried to keep active. Although I was in denial that I'd ever need surgery again, I've always wanted to make an attempt to take care of what I have.


Question: 11: What are your hobbies and passions? 

I love animals, literature, Jazz, food, friends, photography, travel, history,  and vintage clothing. Although I have a degree in Creative writing, I have to consider creative writing a hobby at this point. I love helping animals (if I had a dime for every stray I've ever helped) and my kitties are my spoiled brat kids! I love to visit historical places, and graves of famous or notable people (it's fascinating, really!) I hope to roam the streets of London and Paris in the next year, and visit Germany, where my dad's family came from. I recently became an ambassador for ACHA, and CHD awareness has become a passion of mine. I am so frustrated that nobody seems to know about or understand the #1 birth defect or think it's like Coronary Artery Disease. I also love make-up artistry, floral arrangement, cooking, traveling New England...oh gosh, I can't think of all the things I like to do right now!



One Hot Tamale


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 had a friend who is a gym rat recently tell me that I wasn't working out hard enough and that I should be running. I was trying to convey my frustrations about getting 10 pounds off slowly and how it failed. I will never be a runner. It angered me because she was trying to act like I was making excuses. I wanted to yell at her and say, "Well, your heart isn't enlarged; it doesn't leak or have weird plumbing!"  Regardless of the fact that fitness goals will most likely take me twice as long doesn't mean I'm not trying! There will always be people that just don't get it!



Question 13: What has been the toughest part about living with heart health issues?

The fact that we still don't truly know the long term effects of CHD in adults. 'Nuff said!



Question 14: What are your aspirations for your future?

I plan to live until I'm very old. I'm going to travel the world, be as happy as I can be, and make a difference in as many lives as I can! That may sound like a general answer, but it contains so many plans and dreams that I simply can't convey into words. All I can say is watch out!!! :)