Friday, July 16, 2010
DONATE LIFE ORGAN DONATION AWARENESS-CONNECTICUT
This Thursday at 10 PM, Boston Med featured current Children’s health care providers Francis Fynn-Thompson, MD, and Elizabeth Blume, MD, who will work together to save the life of a teenage patient with a life threatening congenital heart defect. In honor of the episode, Thrive is devoting all of this week’s coverage to pediatric cardiovascular conditions, their research and treatment here at Children’s and the lives that are touched as a result.
Heart week: A new heart for Sara Dumas
by MELISSA JELTSEN on JULY 16, 2010
Last night, Boston Medfeatured Children’s patient Sara Dumas as she underwent a life-saving heart transplant. If you missed the episode, watch it in full here. Our robustFacebook page was also bombarded by comments during the show; click here to read them but watch out for spoilers!
Here, Sara shares what it was like to undergo a major medical procedure and lengthy hospital stay–with camera crews capturing it all the while.
When I was four years old I was diagnosed with a heart condition known ashypertrophic cardiomyopathy (HCM). Because the disease is genetic, doctors suggested other members of my family get tested as well; shortly after both my father and brother were diagnosed with the same condition. I was stable for most of my childhood, but when I was fifteen my condition became so bad that it was interfering with my life. Soon after, my brother and I were referred to Children’s Hospital Boston to be evaluated for heart transplants.
I began the evaluation process in September of 2008, and during this time my family and I visited the hospital at least once a month for multiple tests, usually for days at a time. This was tough on everyone because both my brother and I were there a lot, but not always for the same procedures; it seemed like one of us was always going to Children’s for one test or another. On January 6, 2009, after months of evaluation, I was placed on the waiting list for a new heart. I went on the transplant list before my brother because his condition was more stable than mine, though it’s possible that he’ll need a transplant as well in the coming years.
I was back at school about a month after being put on the transplant list, but my condition got worst shortly after. It seemed like I had just gotten back, but before I knew it I had to leave school for a whole week to receive IV medications at the hospital. Unfortunately, my one week stay soon turned into an entire month, and I had to be tutored at home and in the hospital. Being pulled from school was a total disruption to my normal life; if I didn’t enjoy being in the hospital so much it would have been a horrible experience.
But luckily, I love Children’s. I love the atmosphere– I love doctors and nurses zooming in and out of my room all day and being totally surrounded by a bustling medical environment. I loved painting my hospital window and I loved when the arts and crafts cart came every week. So, all things considered, the time I spent in the hospital was not so difficult for me. But for my mom, the experience was completely different. She spent weeks sleeping on the chair next to my bed, while still trying to get work done during the day.
While I was in the hospital, the ABC network asked if I wanted to be part of a documentary series they were shooting. I agreed to do the documentary, thinking that it would be a good way to occupy my time and would make my circumstances even more unique. Plus, I wanted to have footage of my experience, especially the operation, which for obvious reasons I wouldn’t get to see while it was being preformed.
After spending almost the entire month of February in the hospital, I was allowed to go home on a portable IV pump. I was on a medication called Milrinone 24 hours a day, seven days a week, to help me to stay healthy despite my heart failure. I was sporadically tutored while home so I could try to catch up with the rest of my classmates. I was home for about three weeks when my mom got the call that there was a donor heart for me. I was bouncing up and down on my seat when we heard the great news! (In hindsight that probably was not the safest reaction for someone waiting for a heart transplant.)
A few hours later we arrived at Children’s and the ABC cameraman met us there. Not being the most outgoing person I was initially a little worried about being filmed, but once the cameras start rolling it became natural very quickly. My entire family soon arrived and we all packed into my hospital room. Unfortunately, the time of the surgery kept being pushed back and I was told I’d be prepped for surgery in the morning. Somehow I managed to stay calm throughout this entire experience, even as they put me to sleep for the transplant.
Since my operation, my quality of life has improved dramatically. I left the hospital thirteen days after receiving a new heart, and was back at school two months later. Although I missed most of the second semester, I managed to finish my junior year on time and with honors.
Now, over a year after the transplant, I am looking forward to going to University of Connecticut this fall as a biology major. My time at Children’s makes me hope that I’ll be able to go on to medical school to become a pediatric cardiologist one day. Since the transplant I’ve volunteered with Donate Life Connecticut, promoting organ donation, and I plan on volunteering even more in the future, assuming a busy college schedule allows it.