::congenital heart defect::

I was born with a congenital heart defect; this means that an anomaly occurred during the formation of my heart & blood vessels in the womb and it was present at birth. Note the word defect, not disease. Also, my heart is mesocardia favoring the dextrocardia side (meaning my heart kind of sits off-center, and I pledged my allegiance to the flag using my right hand).
I was diagnosed as having transposition of the greater arteries (when the aorta and pulmonary artery are reversed and there be all kinds of bad traffic in the oxygen/body/blood highway) and ventricular septal defect (what is often referred to a "hole" in the heart).
I have had three open heart surgeries to better manage these defects:
Senning (performed in October of 1984) | Hemi-Fontan (performed in 1989) | complete Fontan (performed in 1990)

Side-effects of my surgeries include: atrial fibrillation/tachycardia (really fucking rapid heart rate). I have been on beta-blocking medication since the age of seven. Two of these medications gave me horrendous side-effects, including drug-induced lupus, and schizophrenia-like symptoms including hallucinations, paranoia and violent mood swings.
In 2002, I was placed on anti-coagulated medication and have been on them since. I need to have my blood drawn every 4-6 weeks to make sure that my INR levels are at a stable rate. Annoying, but necessary as it is vital to my life.

In 2004, it was deemed that a pacemaker was necessary, but due to the prior surgeries and the location of my heart, this surgery had to reopen my surgical scar (i.e. open heart surgery). What was supposed to be a relatively easy procedure turned into a pain in the ass three-month long recovery. Yeah, it hurt and it totally sucked. I'm kinda over it now; the pacemaker works, and I get it checked via phone every couple of months and interrogated by my cardiac electrophysiologist annually.

In fall of 2007, after eighteen months of increasingly serious arrhythmia episodes, it was discovered that I have also been sporting hypothyroidism. This wild card disorder has been a barrel full of monkey's in symptoms that do not go away with the synthetic thyroid replacement pills. FUN!

::facts::

- Though medical science has come leaps and bounds and grows harder/better/faster/stronger every year, there will be no one stop cure all that will "fix" my congenital heart defect. At best, it gets patched up when necessary and managed through medication, regular check-ups with my cardiologist (who specializes in adults with congenital heart defects), and noninvasive tests.

- Noninvasive tests include: EKG, echo cardiogram (like an ultrasound for the chest), stress tests, Holter monitor (which I hate because you know how POPULAR people are with a fanny pack and wires hanging from under their shirt are these days) and general check-ups.

- I am considered disabled, though you would never know it looking at me. I am 5' 8", with a healthy weight for my height, and I probably look like I could (or would) take someone out if need be. Looks are deceiving, though, and sometimes it can be more of a hindrance to not appear "obvious" in my disability and people tend to judge based on appearance alone.

- I am limited in my physical activity, and can tire/stress my heart out very easily. My parents were kind in that they permitted me to discover my own limitations as a child, and encouraged me to participate in P.E. on a personal endurance level basis. This was hit or miss with the gym teachers I had, but by high school there was an accommodating physical education class specifically tailored for students who could not perform at the insane level the other teens were meant to. Personally, I think I got the better end. P.E. in high school was awesome.

- I cannot tell you exactly what I can and cannot do, because every day poses a new energy level for me. The crap part about the CHD and the hypothyroid are the inconsistencies in energy level and activity tolerance.

- The instability of both my heart defect and hypothyroid have made holding down a 5-days-a-week job where my physical presence is needed absolutely impossible. It has put former employers and myself in awkward positions, and I am now focusing completely on my creative outlets from the haven of my own home.

- Government programs that assist the disabled with medical coverage is a blessing. It is not easy to obtain, nor particularly a slice of pie to hold onto, either, but without these programs available I do not know what I would do to take care of my medical needs. I am very grateful for them. If you are a parent or a minor reading this page, start looking into medical coverage immediately. I was foolish by winging it as adulthood came upon me and waited until the eleventh hour to get my shit together. Do NOT let this happen to you! If you or your loved one living with CHD is going to need assistance because their defect does not permit them to put in the long hours required from many employers to receive medical benefits, start looking into your states assistance programs now. Finding an advocate is also beneficial.

- Am I bitter? I'd be lying if I said that it doesn't piss me off just a little bit, but it is what it is and I do what I need to do to survive and be happy with all that life does have to offer, focusing on the cool things I can do rather than the shit I have to miss out on. I think I am more insecure about other people judging me for not being able to be as independent as I "should" be, whatever that means. I am absolutely open to discussing my congenital heart defect and all of its quirks, though, so you are welcome to e-mail me about it.

::community::

Organizations that have personally benefited me and united me with other members of the congenital heart defect community are:

Adults with Congenital Heart Defects Association