Happy Fall, my loves! This is my favorite time of the year, having the windows open and snuggling under the covers at night (Linky Cat and Matzo Ball snuggle more when it gets chilly), tank tops get traded in for hoodies and sweaters, flip flops become Uggs, and pumpkin spice EVERYTHING. Yep, I'm that girl.
This weekend was mostly spent getting my lazy on. Saturday was my first post-op venture (not counting a doctor's appointment last Wednesday), out of the house, and we went to a wine festival. We've had these tickets since the end of February, obviously months before I knew I'd be having surgery the week before. I wouldn't have gone had we not had the tickets, but I've been looking forward to this for over 6 months. In February we waited in line one cold Saturday morning to score tickets for one of the VIP tents, which were limited. Having the tent was the only way I could have gone, as it was the perfect way for me to enjoy the day, and still be lupus safe in the shade. I had a great time with my friends, loved being out of the house, and got to try pumpkin spice wine. Yep.
I've been home for two weeks already, but I'm just now getting around to writing about my Chicago trip. I went out there for the Adult Congenital Heart Association's 7th annual conference, being able to be there on both a professional and personal level. I met a number of ACHD physicians and nurses, as well as over 100+ CHD survivors. Since all this lupus nonsense started, sometimes I almost forget I'm part of this elite group. It's scary that my heart defect that required 4 heart surgeries is on the back burner compared to all the other medical issues I deal with these days.
Since I'm not currently working, I feel like my nursing skills and knowledge keep slipping further and further away from me. When I attend conferences, I try to soak up ALL THE KNOWLEDGE like a sponge. What I love about medicine is that there is ALWAYS something new to learn every single day, and I'm grateful I was able to take away a lot from this conference.
I always find it disheartening (no pun intended), the broadness of the knowledge base ACHDers have of their defect and long-term issues that may arise. My parents made certain that even at a young age I knew I had a defect and its' name, that I didn't have pulse or blood pressure in my right arm (true story), my limits in gym class/playing sports, etc... All of my cardiologists believed education was imperitive, and I remember the 1st time I met my cardiologist as an adolescent, he showed me a picture of a Tet heart and told me I needed to know my defect. They were all especially cognizant in reminding both me and my parents, that even though my heart was good for the time being, I would eventually need open-heart surgery for a pulmonary valve replacement, and that other issues could come up, such as my developing cardiac arrhythmias.
I guess I always took for granted that my parents and all my doctors made sure I had the proper education (thank you Dr. F., Dr. W., and Dr. D-squared!), and maybe I was naïve in thinking all pediatric cardiologists focused on education for each patient at some point (and for those CHDers with cognitive deficits, then educating the parents). While sitting in a patient breakout session, I almost fell out of the chair hearing over and over how many knew nothing about their defect, how their parents never really asked questions and sent them off to the OR just wanting the surgeon to "fix" them, and thinking they never needed lifelong cardiac monitoring.
I was shocked that a lot of them hated saying their defect was "fixed," because to them that meant cured. I always thought of my heart like a car; if something on you car breaks, you take it and get it fixed. But eventually, that part will more than likely break and need to be fixed again. The same with my heart- it was broken, and Dr. Norwood took me to the shop (err.. operating room) and fixed it. But, with wear and tear and over time, I'll need it to be fixed again. While of course the thought of knowing I'll eventually need another heart surgery makes me anxious at times, I can't imagine what it must have been like of those who truly thought they were "cured," and learned they needed a valve replacement. Scary indeed.
Most of my time was spent listening to lectures for the medical professionals, getting the ins on what's up and coming in the ACHD surgical/interventional field. Amazing stuff, I tell you. It's pretty cool knowing that me and all my "Zipper Sisters" (and brothers!) are at the forefront, and basically the guinea pigs of ACHD care and interventions. Some may not like to see it that way, but I know that how we are surgically and medically managed will play a huge role for even greater long-term survival in the future.
What other way to end the event with a bang, then by holding a Gala?! Doesn't that sound so fancy? I had never been to a Gala before, and was pretty damn excited.
Roslyn, Christy and I are CHD survivors and cardiac ICU nurses! Talk about coming around full circle! #zippersisters
Pink is more our color, wouldn't you say?
After cocktail hour and dinner was served, all of the CHD survivors were called up to the dance floor for a group picture. I looked around at all of us and became pretty emotional (it doesn't take much, I'm a softie). Somehow, we all managed to beat some pretty terrible odds, and that a mixture of desperation from our parents, dedication from some of the most talented doctors and surgeons in the world, and a general bad ass-ness and fight to survive that's been instilled in all of us is why we were able to be there on that dance floor.
Front and center, the only one looking at my camera. Typical.
#ZipperSisters #survivors #CHD
And then the DJ blasted the intro to Don't Stop Believing, and we all squealed, and clapped our hands and danced together. There are a few nights that will always stand out in my adult life, and this will forever be one of them. We all had different journeys (ha ha! Journey!), some harder than others, but in those few moments, none of it mattered. I've never been so proud to be a part of something so big.
For more information on the Adult Congenital Heart Association visit www.achaheart.org