A Whole New Heart
Donation protected
When I was ten years old, I was diagnosed with Hypertrophic Cardiomyopathy (HCM), with the muscle of one of my heart's valves being too thick. At the time, it came as a complete shock because I was a fully functioning and perfectly healthy seeming child: I was even on a champion girls' basketball team!
When I had first been diagnosed in that little room in Swedish Hospital with the bucket of trucks and legos and toys (obviously below me as a mature ten year old,)
my mom just about had a heart attack herself. It was a strange day. All I can remember was that I ate chili in a cafe downstairs, and she wouldn't eat anything for the rest of the night.
As the years continued, I enjoyed life as a fairly normal teenage girl. It wasn't until this past year that I really started noticing a somewhat drastic decline in my health. Forever, it had been other people telling me I was unhealthy. But soon I became the one often blowing the whistle. My main symptoms include: trouble breathing, all kinds of weird arrhythmias (which are mostly controlled by my medication now, yay), very low blood pressure and heart rate, and heavy exhaustion with minor physical activity.
When your doctor tells you something is extremely rare, it doesn't mean it won't happen. As it turns out, my HCM is doing something that less than 2% of HCM cases experience-- it has turned into Dilated Cardiomyopathy (DCM) in addition to the existing Hypertrophic Cardiomyopathy (HCM.) With DCM, the actual heart function (the "squeeze") is decreasing in function, which can be a much bigger problem than simply a thick muscle because the only option for a heart with a failing function is a transplant, whereas muscle thickness could be possibly fixed by other (certainly serious but less intense) open heart surgeries.
On March 29, 2016, I received my first life saving shock from my ICD (implantable cardiac defibrillator) which we had put in 3 years ago. I was hospitalized for 10 days until the team felt I was healthy enough to return home.
About seven days later, I suffered a major stroke and was rushed to Harborview Trauma Center for yet another life saving procedure.
On March 24, 2016, I was put on the Organ Donation list, and I am currently awaiting my new heart with a 1A status at Seattle Children's Hospital, typing this from my ICU hospital bed.
Through all of this, my parents have been the strongest of anyone involved. They are both intellectual and kind human beings. My mom stays with me every single day and sleeps here in the hospital every single night. She gets the grunt work of giving me back rubs, fanning me when I am hot, and making sure I take my meds on time. My dad was the one noticed my stroke symptoms, and my mom was the one who called 911 immediately. They saved me from losing all function of the entire left side of my body. What happens physically will happen, and I can't change it. But I can alter how I hold it in my own mind, and I can try to ease the financial load placed upon my family by my condition.
Thank you for listening to our story and supporting us in anyway you can.
Love,
Bella
P.S. Here is me on the local King 5 news with my amazing neurosurgeon:
http://www.king5.com/news/local/stories-worth-sharing/harborview-saves-seattle-teen-from-stroke/124663426
Mom, me (11), Sophia (9) Olivia (9) and Dad
Easter comes early at Seattle Children's.
Praciting the art of meditation as a wee one.
When I had first been diagnosed in that little room in Swedish Hospital with the bucket of trucks and legos and toys (obviously below me as a mature ten year old,)
my mom just about had a heart attack herself. It was a strange day. All I can remember was that I ate chili in a cafe downstairs, and she wouldn't eat anything for the rest of the night.
As the years continued, I enjoyed life as a fairly normal teenage girl. It wasn't until this past year that I really started noticing a somewhat drastic decline in my health. Forever, it had been other people telling me I was unhealthy. But soon I became the one often blowing the whistle. My main symptoms include: trouble breathing, all kinds of weird arrhythmias (which are mostly controlled by my medication now, yay), very low blood pressure and heart rate, and heavy exhaustion with minor physical activity.
When your doctor tells you something is extremely rare, it doesn't mean it won't happen. As it turns out, my HCM is doing something that less than 2% of HCM cases experience-- it has turned into Dilated Cardiomyopathy (DCM) in addition to the existing Hypertrophic Cardiomyopathy (HCM.) With DCM, the actual heart function (the "squeeze") is decreasing in function, which can be a much bigger problem than simply a thick muscle because the only option for a heart with a failing function is a transplant, whereas muscle thickness could be possibly fixed by other (certainly serious but less intense) open heart surgeries.
On March 29, 2016, I received my first life saving shock from my ICD (implantable cardiac defibrillator) which we had put in 3 years ago. I was hospitalized for 10 days until the team felt I was healthy enough to return home.
About seven days later, I suffered a major stroke and was rushed to Harborview Trauma Center for yet another life saving procedure.
On March 24, 2016, I was put on the Organ Donation list, and I am currently awaiting my new heart with a 1A status at Seattle Children's Hospital, typing this from my ICU hospital bed.
Through all of this, my parents have been the strongest of anyone involved. They are both intellectual and kind human beings. My mom stays with me every single day and sleeps here in the hospital every single night. She gets the grunt work of giving me back rubs, fanning me when I am hot, and making sure I take my meds on time. My dad was the one noticed my stroke symptoms, and my mom was the one who called 911 immediately. They saved me from losing all function of the entire left side of my body. What happens physically will happen, and I can't change it. But I can alter how I hold it in my own mind, and I can try to ease the financial load placed upon my family by my condition.
Thank you for listening to our story and supporting us in anyway you can.
Love,
Bella
P.S. Here is me on the local King 5 news with my amazing neurosurgeon:
http://www.king5.com/news/local/stories-worth-sharing/harborview-saves-seattle-teen-from-stroke/124663426
Mom, me (11), Sophia (9) Olivia (9) and DadEaster comes early at Seattle Children's.Praciting the art of meditation as a wee one.Organizer
Bella Anderson
Organizer
Seattle, WA
