Your defect(s): Tetralogy of Fallot (Blalock-Taussig shunt @ 18months, corrective open heart surgery @ 5 years, pulmonary valve replacement @ 37)
What is something you always wanted to be asked about you disease that no one has asked or something you always wanted to say that you haven't had a chance to?
I tend to be very forward about my defect and am happy answering all questions or even offering information to anyone who cares to listen. Although, I do hate the use of "disease" in CHD - I tend to use "defect" since disease implies something that started out normal which then changed into something "sick", whereas defect means something was malformed to begin with (rather than being "sick"). I feel "defect" is a far more accurate term.
Give a short description how you perceive your life or felt about as corresponding with the following three words
Past : A huge learning curve with plenty of mistakes, but very few (if any!) regrets. My past has made me who I am today, and I'm very happy with that person. It has also provided me with a rich bank of memories and experiences.
Present : A new beginning. As I am currently recovering from OHS for a new pulmonary valve, I am concentrating on getting well enough to consider my future. Despite the hardships of the last few years, I am still filled with optimism and joy.
Future: I can't wait to get it started!! I have so many plans and things I want to accomplish and with (hopefully) newfound health, I will be well on my way to achieving all I wish for. The future is looking bright : )
If you could give advice you wished someone told you when you were younger about growing up with CHD what would it be?
CHD or not, I think the best bit of advice you could give any child is "You are worthy of the very best life has to offer. Always believe that".
What is or are your greatest accomplishment(s) in life (so far)?
Learning to be completely comfortable with who I am and not being afraid to advocate for myself and others. Also finally accepting that I really do deserve the best life has to offer!
What has having CHD taught you?
I am strong and a survivor. I can face anything. Compassion for others. Beauty truly does come from within. Doctors don't know everything.
Briefly share your story of growing up with CHD
CHD didn't really play much of a part in my growing up. I was told the corrective surgery I had at age 5 "fixed" me and was pretty much treated like a "normal" kid from then on. There were no special concessions - in fact, aside from my surgery scars and bi-annual check-ups, it barely crossed my mind until much, much later in life. I was always the smallest in class and really bad a sport, but then someone has to be the smallest kid - and plenty of other kids sucked at sport too. I also came from a really dysfunctional family and because we moved so much I went through 11 schools in 10 years. I had far more worrying matters on my mind than a heart problem that had been "fixed" when I was little.
How has having CHD changed your life (other then the obvious health issues)?
I've probably always been far more conscientious about my health (diet & exercise) and appreciated how important and fragile they are. One of my goals is to become a dietician and use my experience to try and inspire others to live more healthily to avoid acquiring heart problems.
When did you first become aware of your own mortality and how have you handled that? How has your family or your faith helped, or has it helped?
It probably wasn't until I was in my late teens that I really thought of my own mortality, but it had nothing to do with my CHD. I've pretty much dealt with everything on my own since leaving home at 15... although I was emotionally removed from my family many years before that. There wasn't much sympathy or compassion to be found there. Still, while I hope to have a good many years to live yet, I am very comfortable with the concept of my own mortality. And for the record, I'm agnostic.
When did you realize you had a different life than other children, and how have you managed that into adulthood?
I read a lot as a child and realized pretty early on that while I might have issues of my own to deal with, a lot of other kids had their own problems to deal with too. As for feeling "different", that was less to do with CHD that it was always being the new kid, and the small kid. I developed a very strong sense of who I was and immersed myself in books and learning. Being "accepted" really didn't bother me - it either happened or it didn't. As an adult I still have much the same attitude... I'm not bothered by the thoughts or opinions of people who don't know me well. Nor do I have time to indulge unsupportive people. As a result I have little conflict in my life and the friends that I have are the sort I know will be there no matter what. I feel very lucky.
Do you feel you can be honest with your parents about your fears and frustrations? What are the most important elements in having that trust?
My dad was never really a part of my life growing up. We're much closer now, but still very independant beings. I no longer have anything to do with my mother and hope it stays that way. I learnt very early on to deal with my fears and frustrations by myself and as a result, I am now a very self-assured and self-sufficient individual.
On an average day are you more scared of what may happen, or more grateful for the life you have?
I see no point in worrying about things that may or may not happen. My philosophy is "plan for the worst but expect the best" and in the meantime I try to make the most of each day and enjoy it for what it is. If you look for misery you will find it. I would rather seek happiness and joy.
If you could change something about how your parents handled your CHD, what would it be and why?
They could have told me I could expect surgery down the track, rather than telling me I was "fixed" and there was nothing more to worry about. I don't think it would have changed my attitude to life, but I would have been a bit more concsiencious about keeping cardiac appointments and maintaining my medical records.
How do you keep depression at bay or don't you have any?
I really don't suffer much depression. On the occasions I have suffered it (break-ups, deaths, etc) I tend to need my own space to work through it... usually with lots of Kleenex, but I try to always look to the future and find the positives.
When/what do you tell a boyfriend/girlfriend about your condition?
I'm pretty up front about my condition and often I'll be wearing something that shows my sternotomy scar, so it doesn't take long for the topic to come up. I tell them I was born with a heart defect that required surgery as a kid and since then I've been just as healthy as anyone else. I actually met my current partner when I was originally looking at OHS again, but it certainly didn't bother him and having only just had the surgery now (5 years later), he has been a wealth of support and understanding. It certainly weeds out the heros from the zeros!!
What do you do about birth control or do you want to have children?
I've never wanted children of my own, although I did consider adopting (I always figured there were already plenty of children in the world who - for whatever reason - needed a loving home). For some partners this was a problem and we soon parted ways, but I've always been up front about not having kids and have found someone who is happy with that. I've been told it "probably" wouldn't be a problem for me to have children of my own, but "probably" isn't something I want to bet my life on... and again, I'm really not a "kiddy" person, so it's not something that really concerns me.
Did your parents do "everything right" or do you wish they treated you/your defect differently?
I guess by not treating me any differently I never considered myself different, but a little more information would have been a wonderful thing (like the fact I would probably face OHS again in the future!!).
Name your 3 favorite items :
A B&W photo of my brother and I when we were little kids, my books, my industrial sized clothes-dryer!! (although the new fridge might give it some competition!)
What are your hobbies?
cooking, reading, logic puzzles, and hopefully dancing again.
Favorite movies, TV, Books, Music:
Movies - The Breakfast Club, Fight Club, Pulp Fiction, most stuff by Quentin Tarantino and Christopher Nolan
TV - CSI (original), Top Gear (UK), Desperate Housewives, Mythbusters, Iron Chef (Japan), South Park
Books - anything by Steven King, art/photography books, anything I can learn from, cook books
Any fun facts about you or something you want to say :
Why worry? If it's something you can't change, then all the worry in the world isn't going to help, and if it's something you can change, then there's nothing to worry about!