Thursday, December 29, 2011

Happy Holidays

Happy Holidays and happy almost new year. I hope your holidays were as healthy and happy as mine. Since my last post I have cut my hair, finished my first semester of college, and turned nineteen. Overall it has been a very liberating couple of months since I left for college. For the first time in my life I am with almost all people who simply don't consider my medical “stuff.” It is so normal to be a college student. While my main group of friends at school know what I went through a couple years ago, each semester brings classmates, professors, and acquaintances who judge for my intellectual and moral merit, without the cloud of “holy bejeezus you did what?” always ringing in the back of their mind. That’s not to say that I don’t appreciate the kind and understanding people that went through my transplant journey with me, but that I am pleased that I have my first chance to start fresh. Anyway, I just wanted to say that I am happy and healthy, have a great family, great friends, great professors, and a spectacular roommate.

Monday, October 17, 2011

HCM- the disease which shall not be named

Q-What's the difference between Harry Potter's Super Villain and the heart condition I had fixed?
A- HCM is deadlier and more obscure
Voldemort was known far and wide and his name, spread fear throughout the wizarding world. Voldemort killed what, 200 wizards? Sudden cardiac arrest causes 325,000 deaths every year. Obviously not all of those deaths are due to HCM, but most are. Yet Voldemort is whispered about as "he who shall not be named" and HCM is never spoken of. On the news and in the media people say, "he collapsed with an unexpected heart problem," but they never use the words. It is my opinion, as an English major, that words have power. I challenge you, therefore to use the term Hypertrophic Cardiomyopothy once this month for Sudden Cardiac Arrest Awareness Month. The only way we can save lives is by raising awareness.

Sunday, October 16, 2011

Freshmen Year Update

I have been at Simmons for six weeks. I am 1/16th of the way through my college career and I am loving it. I have friends who seem to like me. I am the vice president of my residence hall and I have yet to miss a class. Life is good. I have to go to the pharmacy almost every week and I have to go to the hospital once a month, but living just down the street makes it so that I can have a blood draw and not even be late to class. I think Simmons is a great place for me right due not only to its proximity to Childrens, but also due to the academic difficulty (challengign, but not impossible) and social situation (welcoming and friendly). In high school when I told someone that I had a heart transplant they got all awkward and weird. Here it doesn't seem to make a difference. People say "that's cool" and move on. Victoria from down the hall is writing a paper on cardiac screening in athletes and I wrote a personal narrative about missing most of sophmore year. Here, my transplant is a subject, but its more studied critically than personally attacked. That is what is wonderful about college.

Saturday, June 11, 2011

School Roundup

Yesterday, Friday, was my last day of high school. It was pretty fun. The seniors had a big parade down the halls where we screamed, banged on the lockers, shot silly string and glitter everywhere, and blew horns and whistles. We also wrote all over my physics teachers wall with our names and some funny quotes in paint, which looked really good. I said goodbye to many of my teachers because I don't have any tests so the only time I will see my teachers again will be graduation. As I walked out of my last class I turned to a friend and said, "Guess what?"

He responded correctly, "What?"

Then I said. "I survived high school" which, as you know, has a somewhat special meaning to me. There was certainly a time in my life where I didn't think I would be walking down the stage in two weeks. I think it makes these moments a little more special for me, knowing that could have not happened.

Before the end, I went to a really neat conference in SUNY Plattsburgh about the Organization of American States where we all represented a country and discussed the issues of Latin America. It was the most fun school event since prom, and maybe ever because we had a dance and played games. I won an award for the most diplomatic of my group of kids.

I had a really good week wrapping up high school and going to the Model Organization of American States. I was proud to follow in my brother's footsteps as the winner of the fourth committee at the MOAS. I am glad to be done with high school because I struggled through a lot of it, but I am apprehensive about the future because its all completely unknown.

Friday, May 20, 2011

So Its Simmons

I haven't updated this very well, but I decided to go to Simmons College in the end of April. Simmons seems like a good fit for me, I think. I know because I kept saying to my mom "I feel like I really should go to BU" in the week before I decided. I really do want to go to this adorable college right on the Fenway, literally cut in two by my favorite place (sarcasm) Children's Hospital. Simmons College is an all women's college, which might not even be a bad thing because it will force me to go out with my friends and scope for boys. The Simmons mantra about that is "We're not an all-girls school with no men, we're an all-women's college with no boys." I'm just really excited and nervous to move away and be independent in a place where I know very few of the people around me. I have always been better with routines than change. I hope I can be very happy and successful at Simmons.

Also, Graduation is just around the corner. It truly is amazing that I am graduating with my class and that I am old enough to have voted this week. Graduating, moving away, voting, its all just so adult. I am very used to people taking care of me in some ways, so it will be interesting taking these next steps toward a normal, independent, mature life.

Finally, as a side note, I went to the hospital yesterday with a clean bill of health. It was a little sad, though, because my *cough cough" favorite *cough cough* transplant coordinator Jodi is leaving the hospital so I probably won't see her again soon. She really went through the whole ordeal with us. It was depressapointing to say goodbye, but she needs a life too, I suppose.

Wednesday, March 30, 2011


I now have all of my information about college. Here's how the cards fell

Boston University



So, with that I am seriously looking at Simmons or Boston University. The others have reasons that disqualify themselves. Between those two, though, it is very close. BU is bigger, more expensive, has a better name, and would present a lot of opportunities, but Simmons is small, close-knit, supportive, and would be a better "deal" financially. Thing is, I would probably graduate with essentially the same degree at both places. I would go education with a concentration in creative writing or English. So, its just a matter of choosing the apples or the oranges. If anyone has an opinion, by all means, share. I am going to BU over spring break to find out a little more. I just really hope that they are good choices either way.

Saturday, March 12, 2011

A Week In The Life

In the last seven days I have-
-attended school every day
-gone to coach the young swimmers at the Y
-been recognized at an award breakfast by my school and our local newspaper
-spoke at the Northeastern Police Ski Championships for the Make-a-Wish Foundation
-participated in the tapping of the junior members of the National Honor Society
-watched my Mock Trial team successfully defend their client
-did Yoga at the Y
-went on a road trip with my mother to PAX East in Boston to meet & Greet the Guild Wars guys
-and had a party with my co-swim coach

more details to follow on my awesome life

Thursday, January 6, 2011

Interesting Pheonomenon

I noticed something interesting in Yoga tonight. We were doing neck and spine stretches and I would lean my head to the right stretching the left side of my neck and then do the right side of my neck. I had a significant and measurable less flexibility on my right side. I am chocking this up to some scar tissue or something from all the times I have been stabbed in the neck for heart biopsies. They always go in my neck in a very similar location on the right side, so, in theory there could be an effect with enough repetition. I have never heard of or noticed this before, but who knows?