A Heart Worth Fighting For
Donation protected
My 16 year old daughter Kaylee, had a heart transplant on January 23, 2017.
Kaylee was born with a severely dialated cardiomyopathy. The doctors said IF she made to age 1, she'd need a heart transplant. We were very fortunate that she responded as well as she did to the medications and all transplant conversations went away.
By the time Kaylee was 14, she started to become symptomatic. She was tired a lot, wasn't eating well, suffering from anxiety and her heart was slowly showing signs of weakening. Last spring, things were quickly declining. Her cardiologist tried several medication changes but nothing helped. So on October 17, 2016 we were sent to Boston children's hospital where Kaylee was admitted. They started her on Milrinone, a constant iv medication, which seemed to work well for her and they listed her on the transplant list. After 3 weeks in the hospital, she was finally able to come home and slowly resume some school. Things were going great for a couple of weeks and then over thanksgiving, Kaylee ended up back in for a week due to an infection of her picline.
Kaylee had a few more good weeks before she started to get really sick. Although we all hoped it wouldn't be anything major, unfortunately, it was. The doctors said her right side of her was starting to work hard to compensate for the left side and that they would need to start her on dopamine right away. They hoped that she would only need a few days of that and then she could come back home.
Sadly, her heart needed more. They decided she should have a Ventricular Assist Device (VAD) placed into her left ventricle as soon as possible. So on Friday December 30th, she under went open heart surgery to have the VAD implanted. She is still in the hospital and recoupirating well.
During this time, I am out of work to care for her. She is on many medication and has continual appointments in Boston. Once she has her transplant, just her anti-rejection meds alone have extremely high costs every month, for the rest of her life.
Please visit her Facebook page for continual updates:
A Heart Worth Fighting For
Kaylee was born with a severely dialated cardiomyopathy. The doctors said IF she made to age 1, she'd need a heart transplant. We were very fortunate that she responded as well as she did to the medications and all transplant conversations went away.
By the time Kaylee was 14, she started to become symptomatic. She was tired a lot, wasn't eating well, suffering from anxiety and her heart was slowly showing signs of weakening. Last spring, things were quickly declining. Her cardiologist tried several medication changes but nothing helped. So on October 17, 2016 we were sent to Boston children's hospital where Kaylee was admitted. They started her on Milrinone, a constant iv medication, which seemed to work well for her and they listed her on the transplant list. After 3 weeks in the hospital, she was finally able to come home and slowly resume some school. Things were going great for a couple of weeks and then over thanksgiving, Kaylee ended up back in for a week due to an infection of her picline.
Kaylee had a few more good weeks before she started to get really sick. Although we all hoped it wouldn't be anything major, unfortunately, it was. The doctors said her right side of her was starting to work hard to compensate for the left side and that they would need to start her on dopamine right away. They hoped that she would only need a few days of that and then she could come back home.
Sadly, her heart needed more. They decided she should have a Ventricular Assist Device (VAD) placed into her left ventricle as soon as possible. So on Friday December 30th, she under went open heart surgery to have the VAD implanted. She is still in the hospital and recoupirating well.
During this time, I am out of work to care for her. She is on many medication and has continual appointments in Boston. Once she has her transplant, just her anti-rejection meds alone have extremely high costs every month, for the rest of her life.
Please visit her Facebook page for continual updates:
A Heart Worth Fighting For
Organizer
Michelle Boyce
Organizer
Princeton, MA
