I have been asked to share Halina’s journey to transplant.
Halina was diagnosed with hypertrophic cardiomyopathy (hcm)at the age of 6. She didn’t have any symptoms. She had gone to the doctor for an ear infection and was sent to the cardiologist because the doctor heard a murmur that didn’t sound right.
An adult has a septal thickness of about .9 cm normally. Halina’s was close to 4.0 cm in a small, 6 year old body. Doctors were very concerned.
Fortunately we found out about and connected with the amazing Lisa Salberg who has dedicated her life to advocating for and educating about hcm. Lisa started the hypertrophic cardiomyopathy association (hcma) after her sister died from a sudden cardiac arrest due to undiagnosed hcm.
Lisa helped us identify specialists in pediatric hcm and we were followed by Dr.Jeffrey Towbin for many years. He has seen more children with hcm than any other cardiologist that we found, and with that experience, along with Lisa and our wonderful team at Seattle Children’s Heart Center, especially Dr Yuk Law, guided us through the years and decisions.
Dr Towbin thought that we were in the “honeymoon” phase and that danger would likely occur at adolescence. We kept as normal a childhood as possible including swimming in the summers and skiing in the winters with mom following carrying a defibrillator in a backpack just in case.
We continued to be followed locally by the team at Children’s Hospital in Seattle with yearly visits to Dr Towbin, first in Cincinnati then in Memphis. Dr Towbin and Dr Law at Seattle Children’s would talk about what needed to happen and together they have guided us through different medications to try to prevent life-threatening arrhythmia.
At 11 the doctors thought it was time for an ICD -internal cardio defibrillator-an insurance policy, in a way, in case of a sudden cardiac arrest from arrhythmia that, for her, quickly turns into uncontrolled tachycardia. Thankfully we followed their advice.
The ICD was implanted. When she was 14, Halina had her first cardiac event and was saved by the ICD.
At 16 Halina had 2 more cardiac events and was again thankfully saved by the ICD.
Dr. Towbin and the Seattle team thought it was time to talk about a transplant. We wanted to exhaust any other possibility first, as a heart transplant changes one set of conditions for another and has its own lifelong risks. We contacted Dr Dearani at Mayo in Rochester who performed a myectomy, resecting much of the septum to allow better blood flow. That seemed to help for about 6 months, but by summer of 2018, Halina was very symptomatic—short of breath, dizzy,etc and experienced another cardiac arrest while studying Spanish in Costa Rica. Thankfully, the ICD did its job again and saved her.
She was listed for a transplant in September of 2018 , had 3 more cardiac arrests in Nov/Dec and received her precious gift from an angel donor and family on February 9,2019.
1 in 300 people are thought to have HCM, often never knowing and going through life with no problems. A small percentage end up needing an ICD and a smaller percentage end up needing a transplant. High school EKGs for athletes are critical to identifying this silent danger. Lisa Salberg has been foundational in helping to get more EKG screenings, defibrillators in schools, and Centers of Excellence for HCM recognized. To learn more about HCM please look up the Hypertrophic Cardiomyopathy Association.